My Food Allergic Babe

Reaction timeline

2011-05-11T09:16:00.000-07:00

We had a food reaction this week, and I thought it would be interesting to document the symptom timeline. It's good to remember that reactions (for allergies, and for EE) can really vary depending on the food, the amount, and the person. That's why a food journal is so important when you're starting out, because sometimes you just don't realize that something is a symptom until you see it happening repeatedly with certain foods.

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DD is suddenly having a hard time seeing other people eat food that she can't have. Two days ago, she got up on our counter and ate 2 bananas before I caught her. :( Here is her symptom timeline for that reaction:
- within about 4 hours, she had diarrhea with noticeable pieces of bananas in it, and again a couple hours later
- that night, she slept horribly- tossing and turning, and waking up flailing and crying every hour or so
- the next morning, she told me her throat hurt (a common EE symptom)
- last night, she complained of leg pain and started rubbing her ankle (another seemingly common EE symptom- leg or joint pain)
- this morning, she woke up with bright red cheeks and a bad mood

The Allergy & Asthma Cure

2011-04-25T12:46:00.000-07:00

by Fred Pescator, M.D.

This book is an easy read, and has some good information, but won't be added to my must-read list. I will admit that I skipped over most of the asthma chapters and focused on the food allergies. ;) The premise of this book is that most asthma and allergies are caused by a candida overgrowth, and the author takes you through the process of controlling candida through supplements and diet. Although I think that candida is a problem for many people, and can cause leaky gut (leading to food sensitivities), I don't agree that it's a problem for everyone. Also, the protocols for initially killing off the candida are too harsh for children in my opinion.

The author does discuss a few different types of food allergy/sensitivity testing, and highly recommends the ALCAT test. He also discusses eliminations diets and nutritional supplements.

Atopy Patch Testing (APT)

2011-03-01T09:34:00.000-08:00

Atopy patch testing (APT) is done to diagnose non-IgE, or delayed reaction, allergies. Many allergists don't do this test, or even believe that it works.

According to the most recent AGA paper on eosinophilic disorders:

"APT has been most extensively studied in atopic dermatitis. Most studies find that APT was better in identifying late reactions and GI reactions in children with atopic dermatitis."
"...APT has shown promise in atopic dermatitis with good predictive values, high specificity, and low sensitivity, and APT has shown highly promising results with regard to food elimination diet and food reintroduction in patients with EE."
"APT has been used for the diagnosis of food allergies in two published studies by Spergel et al. They examined 146 children with biopsy specimen-diagnosed EE and eliminated foods based on positive skin test and atopy patch test. The authors found that 77% of the patients had resolution of their biopsy specimens based on these results."

Basically, by using APT in conjunction with SPT (skin prick testing), greater improvements were seen in kids with eosinophilic disorders (and kids with food allergies and/or eczema.)

We searched and searched, and finally found a local doctor that does patch testing and regularly works with eos kids. Here's how it works:

First, foods are crushed up and made into a thick paste that will stick on the skin (and not dry out.) Some doctors use food extracts, but from what I've read the accuracy is much higher when using real, fresh food.
The foods are placed into small round or square disks that will be applied to the back for 48 hours, and taped into place. The doctor carefully marks where each section is, so that they are easy to identify when the tape is removed.

After 48 hours, the patches are removed. Some doctors will read the results 20 minutes after removal, but it's really hard to see much at that point since the skin is usually still red from the tape.
Here is DD about 5-6 hours after removal. It's getting much easier to see the spots that she's reacting to (which is almost all of them!) Negatives should be skin colored, positives will be red and possibly blistered or have hives. (Our allergist made sure to do skin testing first, because applying an IgE allergen to the skin for 48 hours would result in a massive and unpleasant reaction. So they only test foods that are negative on the SPT.)

24 hours after removal, the patches are read. You can see that by this point, many of the spots on DD's back had faded, but some are still obviously positive. The positive spots were still red, and most were bubbly and irritated and starting to scab over.

Catching up...

2011-03-01T09:05:00.000-08:00

March 2011

It's been a while since I've posted (or responded to comments!), and I apologize. Life has been a little crazy...

Let's see. I think I mentioned in the last post that DD seemed to have a minor reaction to the anesthesia. Well, it turned out not to be so minor. She was "off" for a couple weeks- just not herself- very hyper, stimmy, couldn't focus, bad sleep, etc. And suddenly, she started reacting to previously safe foods. Within 2 months after the scope, we lost more foods than we had in the entire previous year. :( Her body was so hyper-reactive that everything caused an immune reaction. So at this point, she's down to eating lamb and carrots, and even those are on the fence.

I reviewed the pathology reports again from her scopes, and it looks like she actually didn't have eosinophils in her stomach (although I'm positive that the GI doc told us that she did), and I'm no longer convinced of her diagnosis of eosinophilic colitis either, since it appears that they didn't do any eosinophil counts in her colon. So right now, we're definite about the EE diagnosis, and nothing else. I'll have to follow up with the doc to clarify, but at the moment I'm less than impressed with the results from this $13K+ procedure.

Last month, we found a new allergist that does patch testing (will post more about that next) and works with EGID kids. The results showed positives to many of the foods that we had recently lost (zucchini, broccoli), and some others that we weren't sure about (mushrooms, beets, olives, kohlrabi, honey.) :( We also did some skin testing for environmental stuff, and got positives to all the trees and grasses, as well as dust.

We've decided to start trialing medical food (elemental formula) for DD since she's so close to losing all real foods, and I want to do everything possible to keep her off steroids. I keep getting statistics thrown at me that 99.whatever% of kids tolerate these elemental formulas, even though they all have her allergens in their ingredient list (most are made from corn syrup solids.) I haven't been convinced, and going through these trials has proved even further than the rules just don't apply to DD. We started with Neocate Jr. unflavored, then Neocate Jr. flavored, then Elecare unflavored. All were massive fails almost immediately. Symptoms included: diarrhea, a rash, waking up at night repeatedly (sometimes every hour) screaming in pain, joint pain, potty accidents (which she ONLY has during certain food reactions... don't ask me why), and behavioral issues (overly sensitive, aggressive, etc.) This past week, we've been trialing Neocate E028 Splash, grape flavor, which is one of the few that don't have corn syrup solids but does have many other allergens. This trial has gone much better than the rest. After 5 days, we saw no sleep or behavior issues (a little hyperactivity, but that's probably to be expected because this one has artificial flavors and sweeteners), no potty accidents, no diarrhea, nothing. Except.... a rash. :( We're going to take a couple days off the formula and see if it goes away, then try it again and watch for new/more obvious symptoms. Usually with a food trial that isn't an obvious pass or fail, when we remove the food for a few days and trial again, the symptoms will be much more obvious. I'm hoping that's the case here as well, although I'm already pretty sure this formula is going to be a fail as well. Which is disappointing to say the least, because she really liked it and asked for it constantly, and by the end of the trial she was definitely preferring it to real food, which is something I thought might happen- once she found a food substitute, that she would stop eating the foods that were bothering her. For a 3 year old, she's amazing at listening to her body and what it needs.

So that's what has been going on around here. I'm now about 9 months pregnant and trying to get ready for a new baby in the house.

For anyone who's curious, here is her updated allergen list:
- IgE to dairy (cow/goat), soy, eggs, fish/shellfish, peanuts/tree nuts, beef, chicken, pork, legumes, seeds, corn, wheat, rice, barley, buckwheat, oats, rye, green pea, green bean, white potato, sweet potato, banana, cherry, grape, raspberry, strawberry, asparagus, cabbage, rutabaga, brussel sprouts, chocolate....
- APT (patch testing) positive to broccoli, carrot, honey, kohlrabi, zucchini, mushroom, beet.
- EA (environmental allergies): dust, trees, grasses.

EE/EGID

2010-11-30T10:35:00.000-08:00

I mentioned in my last post that we were trying to decide whether or not to take the GI's advice and do an endocopy/colonoscopy for DD to look for some answers, because we continue to lose foods. We decided to go ahead with the procedures. I'm going to copy and paste snippets from my personal blog, so I hope it all makes sense.

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November 18, 2010

We got to the hospital about 8:30 this morning, and they put some numbing cream on DD's hand where the IV would go. She got to watch Finding Nemo the whole time, so she was happy. :) Then the anesthesiologist came in and told us that the anesthesia they use sometimes has cross-reactivity with egg allergies. GREAT. But that the other option had a lot more side effects, and might cause problems in this specific procedure. So we tested it on her skin first and saw no reaction, and then he put a tiny bit in her IV. Immediately, she got really chatty and happy. lol We waited a bit, and didn't see any reaction, so he gave a little more, and then a little more... and she was out. **added: I found out after the procedure that the anesthesia had both egg AND soy oil in it, so we had a few days of some behavioral/neurological reactions, but nothing too major.

The anesthesiologist made it very clear that he didn't want me in the room during the procedure, but I was adamant that I wanted to stay and that I wouldn't be a distraction. He wasn't very friendly about it, but I held my ground. The GI was much nicer- we had discussed it in advance, and he had no problem with me being in the room. He explained everything as it was coming up on the monitor, and then we talked briefly when he was done.

The GI showed me the lines running up and down her esophagus where the tissue should have been nice and smooth, and told me this was a sign of esophagitis.

All was fine and good (as far as I know) until they started to take the scope out of her throat, and she started gagging and choking and was very obviously struggling for breath for a couple minutes. Her heart rate went pretty low until they gave her some oxygen, and then it went back up. It was incredibly hard to watch, but I made sure to stay quietly in my chair so that I wouldn't distract them from their job of keeping her safe. After the tube was out, she seemed fine, so they continued with the colonoscopy.

Nothing remarkable to report there, except she had a lot of poop in her large intestine still. It wasn't a huge shock to me, because the laxative we had to do the night before took a LONG time to start working, and she still had a bunch of poop this morning before we left. But he insisted that it shouldn't have been there, and said that it was constipation (even though I told him she's pooped about 10 times since Monday) and that we should give a laxative/stool softer daily. He also gave us a prescription for prevacid, an antacid, for the esophagitis. I'm not fully convinced we'll be doing either.

We should get back the results from the biopsies and the digestive enzyme tests in 7-10 days. I'm not making any decisions about any treatments until then.

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November 30, 2010

As you know, DD had an endoscopy and colonoscopy with biopsies done a couple weeks ago. We got the lab results back last week, and were pretty shocked by the news.

First, the good news- DD's disaccharide/pancreatic enzyme stimulation test came back normal. All enzymes were in the normal range, but her sucrase was right on the bottom edge. That might be something that she needs help with (that's the enzyme that digests sucrose), so we're trying out some digestive enzyme supplements. So far, they've made her kind of crazy and given her a mild rash (which I'm reading is normal when starting enzymes.) We're going to stop for a few days and start again slower, and see if they help with her digestion at all.

Now for the bad news. The biopsies found elevated levels of eosinophils (white blood cells) in her esophagus and digestive track. Eosinophils are normally found in the blood and colon, but should never be in the esophagus. So we have an official diagnosis which falls under the umbrella of EGID - eosinophilic gastrointestinal disorders. At this point we know we're dealing with at least EE (eosinophilic esophagitis) and EC (eosinophilic colitis). Short version of the story is that EGID are a group of chronic, life-long inflammatory diseases with no cure. EE can potentially cause damage to the esophagus to the point that it gets so inflammed and constricted you can no longer eat. Many kids that have EE can't tolerate any solid food, and eat a diet of strictly elemental formula (formula in which all the proteins have been broken down into amino acids, so your body doesn't have to digest them.). Because it doesn't taste all that great, it's often tube fed.

So our treatment options include:

- lots of meds, including steroids to reduce inflammation in the esophagus

- switching her to a diet of elemental formula

- allergen restriction/maintenance

Most doctors recommend a combination of the above treatments. I'm not ok with either of the first 2 at this point, so for now we're sticking with diet restrictions and will do another endoscopy in a few months to see if there are any changes. (I suspect that part of the damage was done while she was eating quinoa, so I'm hoping that keeping her off all grains will allow that to heal a bit.)

We were really hoping to get some answers as to why DD keeps getting new allergies, when she "should" be outgrowing them by now. I guess we got that. :( But I was hoping for something that we could fix, or heal, to get her back to a regular diet... and that hope is lost. We now have to face the real possibility that she will continue to lose foods until she runs out completely, which means that we have no choice but to go to an elemental formula.

My plan right now is to start researching like mad. This disease is somewhat new and increasing rapidly in children, and the research isn't complete. So we really don't know anything concrete except that people aren't expected to grow out of it. We don't have any EGID "specialists" here in Seattle, but our GI seems open to discussion and suggestions, so we'll stick with him for now. There are 4 major EGID clinics in the U.S.- Cincinnati, Philadelphia, Denver, and San Diego. If we feel like we need more expert help in the future, we'll definitely head to one of those... but with our history of horrible doctors, I hate to spend time and money traveling only to find out that the doctor we're assigned to is interested in nothing but prescribing meds.

Anyway.... that's where we're at right now. The diagnosis was really a shock, because she's never had any upper-GI symptoms since she was an infant, so I never looked seriously into these disorders. Oh- EGID tends to run in families, which means that this new babe (due in March 2011) is more likely to have it as well. So another big goal for me is to keep my health and allergies in check. I will be doing monthly blood tests with my midwife to make sure my eosinophils aren't elevated (which would signify an allergic reaction). I'm also going back to a restricted diet, free of dairy/soy/gluten/corn/and possibly eggs. I've had a lot of fun eating whatever I wanted the last few months since DD weaned, but my eczema is back so obviously I'm having some allergy issues as well, and I need to get that under control asap. Plus, I suspect I'll be going on a much more restricted diet once the baby is born, so I need to get back into that mindset.

Oh- here is a website if you want to find out more info about EGID:

http://www.apfed.org/index.htm

There are pages about EE (which is the most common form) and EGID- which describes all the different types of disorders that fall under the EGID umbrella.

**update: I just got the labs back from the hospital, and there was eosinophilic inflammation in her eophagus, colon, AND stomach... so we're actually looking at EE, EC, and EG now (eosinophilic esophagitis, colitis, and gastritis.) sigh. No numbers though on the labs, which I was expecting. Only that the eosophagus was >50, indicating "severe" eosinophilic inflammation.

Our NAET progress

2010-11-07T21:56:00.000-08:00

November 2010

I just realized that it's been a while since I've updated. We've been seeing our new NAET provider for about 3 months now (wow- I hadn't realized it was that long until I looked at the calendar!) DD has been treated and cleared for:

BBF (brain-body balance formula)
egg mix (she had to do this treatment 3 times before she cleared it)
calcium mix
vitamin C mix
B-complex mix
sugar mix
iron mix
and she did the grain mix last week (we'll find out if she's cleared at the next appointment)

Now don't get excited... just because she "cleared" the treatment doesn't mean that all these foods are suddenly safe for her (I wish!) As it was explained, all foods have a ton of different vitamin/mineral components, and sometimes you have to be cleared for each individual component before you can tolerate the food.

The only thing that we've "tested" at home was egg. DD is contact reactive (hives) to raw egg, so I figured it would be pretty easy to see if she's still allergic. I put a little raw egg on her arm the other day, let it sit for about 2 minutes, then washed it off thoroughly. Within about 5 minutes, she had one itsy-bitsy hive. It faded within the next half hour. So obviously, she is still reactive, though maybe not as much as she was before? It's not definitive, because I didn't leave it on very long. But it is a little encouraging.

It's so hard to continue shelling out money for a treatment (especially one not covered by insurance) without seeing immediate results. But I'll tell you a few things that we have seen so far with this treatment:

One of DD's reaction/inflammation symptoms is dark, sticky ear wax. She hadn't had any for a while, but earlier this year it came back. A lot of it. Gobs and gobs. We modified the diet, but didn't see any changes (I'm suspecting it was the quinoa that we added to her diet after losing buckwheat.) But there weren't any other major symptoms, so we let it slide. The first few treatments, it seemed like the wax was less for a couple days, but then it would come back full force. I stopped paying attention for a while, but looked last month and she had hardly any visible wax. I checked again today, and there is none.
After each visit, DD gets really emotional. Almost every time, we have a major meltdown when we leave (and since removing all her food triggers from her diet, meltdowns are few and far between, so this is definitely not "normal" for her.) I can tell that something is shifting in her body. What, I don't know. But something is happening for sure.
This week, she did the grain mix. We've been grain free for about a month, but probably should have been long before that. She is IgE positive to every gluten-containing grain that we've tested, and the gluten-free grains (which the allergist office doesn't have tests for, so we don't know if they're IgE or not) always cause some sort of digestive upset. The week before this treatment, she was having some sort of food reaction and was sleeping terribly. The night of the treatment, she woke up only 30 minutes after falling asleep, and I thought for sure we were in for a rough night. I woke up in the morning, and realized that she hadn't budged all night!! She has been sleeping great all week since then. Twice, she stayed in her bed the entire night, not waking once. And the times she has woken, she's quietly climbed into bed with us and fallen right back asleep, with no assistance needed. No tossing and turning, no crying, nothing. So I know for sure the grain mix made a positive change for her. I'll be really curious to see if it tests ok for her this week.

We're trying to decide right now if we want to take the GI doc's recommendation and get DD scoped (endoscopy/colonoscopy) to check for: eos disorders, inflammatory bowel diseases, pancreatic enzyme deficiencies, etc. I'll report back if I ever come to a decision. ;)

Beware the bulk aisle!! (and NAET update)

2010-08-23T12:49:00.000-07:00

We have an allergist appointment coming up this week, and I wanted to test some alternative grains (quinoa, millet, amaranth.) The allergist of course doesn't have any of those grains in their skin prick kits, so I have to bring some in myself. Thus, the trip down the bulk aisle (where we don't normally venture!) to get a few tablespoons of each grain.

DD really wanted to help, but I explained that there were a lot of things that she was allergic to in this aisle, so she shouldn't touch anything. (HAHA- because (almost)3-year-olds always listen to those instructions.) As I was bagging one of the grains, I looked down and saw that she had opened a bin and picked up the scoop (by the handle) that was on the outside of the container. The bin happened to contain soy protein powder, one of her major allergens. I quickly pulled her away, not even thinking that she might have gotten trace amounts of it on her hands (it had been a pretty rough day, we were both pretty flustered by this point.) But really, she's never had soy contact directly, and I haven't had any since she was about 3 months old, so I was really sure how severe an allergy it was. (Had she touched a bin with nuts in it, I surely would have found soap and water immediately!!) I guess she must have rubbed her eye on the way home, because about 5 minutes after getting home I looked at her and saw this:
She wasn't bothered by it in the least, but I was pretty freaked out. Tried alternating homeopathic apis and histaminum (both work great for hives), and they did nothing. Dosed her with Benadryl, nothing. Two hours later, and the swelling wasn't even starting to go down. I finally remembered vitamin C. High doses are known to help with allergic reactions, and it has always helped her reactions in the past. I mixed some sodium ascorbate and pascalite clay (kind of acts like activated charcoal to bind the "toxins") in some honey for her to eat, and almost immediately the swelling started to subside. It didn't go away fully for probably 16 hours, after 3 doses of vitamin C. Poor kid.

So that's your allergy lesson of the day- DO NOT take an allergic toddler into a bulk aisle unless they are strapped securely in a cart or on your back!

In other news... we are seeing a new NAET provider. The first guy kept flaking out on us; out of 4 scheduled appointments, we actually saw him ONCE. Sounded like he was having a string of bad luck, but after driving across town in rush hour traffic only to find no one there, it was hard to be sympathetic. So we're seeing a new acupuncturist, really close to our home, and who is willing to work with us on payments. So far, so good... nothing really exciting to report though. :( DD is sleeping better since starting the treatments, so I guess that's one thing. But she's still not passing the egg mix, even though she's now been treated for it 3 times (once with the first guy, twice with the new lady). Fingers crossed that she passes this week and we can move on to the next treatment!

NAET treatments

2010-07-17T00:06:00.000-07:00

Copying and pasting from my personal blog:

In allergy news, we've (kind of) started NAET treatment with this guy for DD and I. I say kind of because today was the 2nd time we've shown up for an appointment and he wasn't there. We saw him for a consultation a couple weeks ago, and he did some muscle testing on us to show us how it worked. I have to say, it really blew my mind. I was not expecting the obvious results that we got.

If you don't know what muscle testing is- there are a few ways to do it, but in this case he puts a vial containing a food substance in one of your hands. The other arm you hold up, and he tries to press it down. If your body is ok with the food, you have no problem holding up your arm; but if you're allergic to the food, you lose strength and can't hold your arm up. I know, I know... sounds crazy, right? I couldn't believe the results. He put a vial of rice (normally fine for most people) in my hand, no problem. Pushed on my arm, I pushed back and held steady. Then he put a vial of sugar in my hand (most people have problems with sugar), and I literally could NOT keep my arm up! He wasn't pushing harder or anything, it was like my muscle just gave out. It's really hard to describe how crazy it felt. I was trying and trying to hold my arm up, and it just wouldn't stay put.

So after the muscle testing, and reading the patient testimonials on this guy's website (he claims this technique can get rid of anaphylactic allergies!), I was really excited to try it out, even though it's not something covered by insurance and is going to be pretty expensive. But, he's giving us a discounted rate AND treating both DD and I at the same time (which is great since we're still breastfeeding- because it's hard to always tell if she's reacting to something that I'm allergic to, or if she's allergic herself), so it's really a great deal for what we're paying.

Anyway.... we had our first treatment last week for egg mix, which covers eggs and other inflammation sources. (They do a series of around 15 specific foods/vitamin/minerals first, before targeting other things; many times people are reacting to a specific component of the foods [like calcium, for example], so by doing these vitamins and stuff, sometimes many allergies will clear up without having to target the foods directly... if that makes any sense. It's way past my bedtime as I'm typing this. ;) He explained that the first mix usually clears people about 97%, and then the 2nd mix they do contains a kind of egg "booster" which will clear it the rest of the way. I'm really glad we're starting with egg, not only because I want to eat them again, but it will be a really easy test to see if this stuff works, as DD is contact reactive to raw egg (immediate hives where it touches her skin.) Today was supposed to be the 2nd treatment, but I guess he had an emergency and had to cancel. :( Hopefully we'll get in early next week and I can do an egg test and report our progress. I'm trying not to get my hopes up.....

We've also started a new homeopathic remedy for both DD and I, and we're taking a ton of cell/tissue salts to boost our nutrition absorption. Hopefully by this fall, we'll have all sorts of good progress to report.

I'm curious if anyone else out there has tried NAET with positive/negative results? It's so hard not to get my hopes up, especially after reading stories about this working for other people. But I've also read stories about people seeing absolutely no results after pouring a ton of money into it, so I can only hope that we'll get at least some benefit from it.

Skin prick testing (SPT)

2010-07-16T23:39:00.000-07:00

I wanted to share some photos of a couple SPTs that DD had, in case anyone is curious what the test looks like.

First, here is a good website describing the process. When you get a skin prick test, you look for a wheal (hive) and flare (red blotch surrounding the hive) to determine a positive or negative. Normally you are given one prick containing histamine for a positive control, and a negative control spot containing nothing (saline, perhaps?) If the other test spots are the same size or larger than the histamine control, you have a positive result. The link above also compares the wheal size to the old class scale that some allergists use (4+ being the most severe allergy.)

So here in the pictures, you can see how they mark each area to be "pricked" with a pen. This particular allergist has a tool that can hold 8 needles at once, so they label each group of pricks with a number. Then the allergens are applied to the skin and a needle pricks or scratches the spot (sometimes this is done all in one step) and you sit and wait anwhere from 5-20 minutes. Here, DD has just had the pricks done, and she is already showing some reactions. The upper spots are just red from being poked, but few are actually positive results. The lower ones however, are definitely positive.

On the bottom right corner in this picture you can see the positive(+) and negative(-) control spots. Just above those (if you're curious) is goat's milk, and you can see that it's quite a bit larger than the positive control, so it's a very clear positive (allergic) result, as are the ones on the lower left.

Just to give another example, here is a SPT from a couple years ago. On the right-hand side, we have 3 positive results. The top and bottom one have very large wheals with just slightly larger flares, and the middle has a smaller wheal with a large flare.

July 2010

2010-07-16T23:28:00.001-07:00

I know it's been a LONG time since I've posted, and I apologize. Let's see- we've done more skin testing in the last couple months, and come up with a whole bunch more positives. So our IgE list now includes:

shellfish
fish (salmon is the one we've tested so far, but I'm sure it's not the only one!)
beef
chicken
pork
buckwheat (if you've been following our story, you might remember that this was our ONLY safe grain for a year and a half, and then suddenly she started reacting to it.)
corn
rice
rye
wheat
cow's milk
goat's milk
egg white
egg yolk
peanut
almond
tree nut mix
sesame seed
green pea
soybean
string bean
sweet potato
white potato
banana
cherry
coconut
grape
raspberry

And that's not counting all the IgG positive. *sigh* Some of these (like grapes and bananas) are just borderline positives and we don't have any major symptoms. But I hate to risk trying them, because others that are just over the positive threshold (like beef, buckwheat) cause major GI and/or behavioral symptoms.

Since we lost buckwheat, I added quinoa back to our diet even though I suspected it long ago of being a problem. I'm still not sure it's ok, because DD's had a ton of excess ear wax lately, but it's our only carb source at this point so we're keeping it for now.

At the beginning of the year, DD was losing some weight and just not doing well- reacting to practically everything she ate. We had a bunch of testing done (which I briefly mentioned in my last post), which showed a possible overgrowth of bacteria in her gut, an oxalate level in her urine that was WAY off the charts, and a few other suspicious things. Since then, she's gained a ton of weight and all tests are coming back normal (except her eos, which are always elevated, and her blood phosphate level- which has also been elevated every time we've done bloodwork, but no one can tell me what that means.) So I have absolutely no idea what cause the backslide in January, or what turned around, but I am thrilled that she's making a bit of progress (even with all the new IgE positives.)

Test results

2010-01-22T10:06:00.000-08:00

Well, it's been a while since I posted... honestly, things have just been overwhelming and a little depressing lately. We're still losing foods; DD can no longer tolerate any grains whatsoever. After eating buckwheat for a year and a half, she's suddenly reacting to it.

We've done a whole bunch of testing in the past few weeks. So far, we've gotten back IgE (skin prick) and ELISA results (IgG/compliment-antigen test through Sage Labs.) In the coming weeks we should get results from our celiac gene test, OAT, and comprehensive stool test. We're seeing a new allergist, who we like, and a new environmental medicine doc for the alternative testing. We might see a GI doc soon as well, although I'm a little hesitant because I know they'll want to scope her to look for damage, and I'm not sure I'm ok with getting my 2 year old put under. :(

IgE (positive) results: almond, beef, chicken, coconut, corn, cow's milk, egg white, egg yolk, pea, peanut, pork, rice, rye, salmon, shellfish mix, soybean, tree nut mix, wheat

IgG (positive) results: barley, BHA, blueberry, broccoli, cabbage, cauliflower, celery, cherry, chili pepper, coconut, dill seed, duck, garlic, gelatin, gluten, grapefruit, hazelnut, honeydew, lamb, lemon, lima bean, millet, oat, orange, peach, pear, pinto bean, pumpkin, raspberry, red #40, rye, safflower, soybean, squash mix, strawberry, sunflower, sweet potato, swordfish, tomato, trout, watermelon, wheat, white potato.

As you can see, it's a little overwhelming. We go back to the allergist in a few months for more testing, am I'm positive that we'll get a longer list then. (We tested as many as they could fit on her back, and she reacted to almost all of them!)

My goal for this month is to get serious with a rotation diet. Since we have so few safe foods, this means that I'll have to incorporate some mild-reaction foods... but hopefully in the long run, it will help. I will also try to come back later this week and write a bit about rotation diets!

---
*update: Shortly after I published this post, I got DD's celiac gene test results, and.... NO CELIAC!! Yay! (The test can't tell you if you have celiac, only that you are predisposed, but it CAN tell you if you don't have it if you don't carry any of the genes.) She does has two other genes showing gluten sensitivity, but we already knew that. :)

The Unhealthy Truth: How our food is making us sick - and what we can do about it

2009-09-25T15:28:00.000-07:00

by Robyn O'Brien

I urge everyone out there with children- with OR without food allergies- to read this book. Robyn really covers a lot of important bases of how our current (American) food supply is literally making us sick, and how that relates to food allergies. She covers topics such as:

food additives- colors, preservatives, etc.
genetically modified foods
antibiotic and hormone laden meat and dairy
the truth about soy - the dangers of eating soy, especially for a food-allergic infant!
the revolving door (and corruption) between the big food and big pharma companies (Monsanto, notably) and the FDA
the relationship between a major food allergy nonprofit (FAAN) and its corporate (big food AND big pharma) sponsors like Kraft

She also has an extensive book & web resource list, as well as tips for busy parents to help make the switch to healthier foods easier.

The things she uncovers in this book are at time horrifying, although sadly, not surprising for me after all the research that I've done in the past year. This is just another reminder that our grocery story dollars are political. When we spend money on food, we are casting our vote. The longer people continue buying this "fake" processed food full of chemicals and carcinogens, the longer it will be produced (and subsidized by our tax dollars!) It's time to cast your vote for healthy, fresh, local, nutrient-rich food for your family!! Especially for food-allergic children whose diets may be limited, it's important to get every possible nutrient from the food we eat.

Robyn also has a website where she shares tips and information about her book, as well as her AllergyKids website with food allergy safety products, information, and a food politics blog.

Months 21-24

2009-09-11T09:45:00.000-07:00

June - September 2009

Sorry blog followers... I know it's been a really, really long time since my last post. Life has been a little crazy with a flooded apartment, buying a house, moving, cleaning, etc.

I promised a reader months ago that I would share what we're eating these days. (Just remember that what works for us definitely might not work for you!) Here are some of our regular foods that we eat:

lamb
fish **we've been eating this regularly for months, but it's out for now- see notes below
buckwheat
coconut/palm - coconut milk, coconut oil, palm shortening
safflower oil
cocoa (plain baking cocoa with no other ingredients)
grapes/raisins
blueberries, raspberries, blackberries
zucchini and other types of summer squash
broccoli
carrots
beets
green beans
peas
potatoes (although I try to limit them as they are a nightshade and inherently inflammatory)
swiss chard
cabbage
garlic
tomatoes (this one is still on the fence)

I'm sure I'm forgetting a few, but those are things that we eat daily/weekly. We've tried all sorts of new produce this summer and discovered that most local/organic veggies are ok, while fruits are definitely out. We did yet another banana trial because that one's been on the fence for a while (and DD loves them!), and after 3-4 trials I'm finally giving up and calling it a fail. We also tried an organic plum, and DD had spots around her mouth within minutes.

We also recently did an egg trial (our 3rd) with local eggs from free-range chickens. It is impossible to find local eggs that haven't been fed *any* grains, so I was hesitant to try them... but they are a great source of protein and cholesterol that we could really use in our diet, so I gave it a shot. (Our previous trials were also with local chicken & duck eggs.) At first the trial seemed to be going good. Her previous symptoms with eggs were mostly behavioral, which are always difficult to discern- are they from the food trial, or just a toddler having a bad day? So with this trial, we had a few more tantrums, a couple potty accidents (which is always a reaction sign for us), sleep disturbances, and by the 5th day, blood in stool. :( So eggs are definitely out for now.

Overall, things are better and worse for us. Better, in that DD seems to be outgrowing some of her intolerances (delayed-reaction allergies) as her body heals and gets stronger. Worse, in that she seems to be having more frequent IgE (anaphylactic) reactions, and we seem to be getting mystery reactions that are hard to pinpoint to any one thing.

Last weekend we had some friends over for a bbq. At the same time that they arrived, we started one of the bbq's to cook some burgers. (We have 2 bbq's- one for our safe food, and one for everything else- particularly beef. The bbq we started was for the beef.) Within minutes of the guests arriving and bbq lighting, DD's face started getting blotchy and itchy, and stayed that way for hours. We still don't know why. Was it something on our guests? Was it the fumes from the charcoal and/or lighter fluid and/or beef? Either way, it makes me nervous that she is so sensitive that she is reacting to fumes in the air. :(

Another frustrating mystery - We've been eating fish regularly for months now. Surprisingly, DD has tolerated everything we've tried, and loves it. I was thrilled as this is a great source of protein and omega-3's. We tried halibut first (from Costco- so definitely a risk of cross-contamination from other fish/shellfish). Fine. Then salmon, also from Costco. Also fine. Then I started buying salmon from the farmer's market- all wild caught Alaskan, from a local company. We tried the sockeye, then the coho. Both delicious and tolerated wonderfully. Then 2 weeks ago, I went to buy some more at the market, and all they had left was pink salmon. It was the last fresh salmon of the season, and a great price, so I bought 2 whole fish. We chopped them into individual servings and froze them so that we could enjoy a little each week. That week we ate our first piece. DD got a little blotchy around her mouth, which was concerning, but I wasn't sure if it was the fish or one of the vegetables we were eating (that were from a different than usual source.) Well, we ate another serving of the pink salmon the other night, and same thing. DD was shoveling it in as fast as she could... within 1 minute of her first bite, I noticed some pink at the corners of her mouth. Within 3 minutes, it was fully blown blotches and she was starting to scratch. She also got very sweaty and had an obvious rise in her body temperature. These 2 symptoms together are a definite sign of anaphylaxis. Here's what she looked like at that point (it's hard to see in the picture, but some of the blotches were starting to raise):
I immediately gave her some homeopathic apis, which seemed to stop the reaction from getting worse. Then I mixed some vitamin C (about 1,000mg) and pascalite clay into some raw honey and gave that to her. That helped the reaction die down a little, and within the hour it was completely gone. (Please keep in mind that although this treatment worked for us, you should always consult your allergist for an emergency action plan. Had the reaction gotten any worse, we would have used benedryl and/or our EpiPen.) Very frightening reaction, as it was so fast, and definitely worse than the time before (as is common with ana reactions.)

I am completely stumped about this latest reaction. Why would she be fine with halibut, sockeye salmon, and coho salmon... but not pink salmon?? I have an email in to the company to see if this salmon was processed any differently, etc. but for now we're off fish. :( I will update later if I hear back from the company.

Hope everyone is having a great week with no food reactions!!

Coconut milk ice cream

2009-07-03T19:11:00.000-07:00

I just have to share this link for a coconut milk ice cream recipe, because I haven't tasted something so heavenly in ages.

It really tasted like regular chocolate ice cream, and was so easy to make. Only a few ingredients, so if you can tolerate coconut and cocoa, you're pretty much set. Dairy-free, egg-free, gluten-free, etc.

Enjoy!!

The Crazy Makers: How the Food Industry Is Destroying Our Brains and Harming Our Children

2009-06-18T10:56:00.000-07:00

by Carol Simontacchi

Fantastic book- thanks Lisa for the recommendation. Not specifically allergy related, but nutrition related. As all of us with limited diets know that it's hard to find a good balance of nutrition sometimes. This book is a good reminder of how important each vitamin and mineral is for promoting our body's natural healing (including healing food intolerances.)

She really talks a lot about the Standard American Diet (SAD) and what it is doing to our brains, as many people eating this diet (of processed and packaged foods) are sadly malnourished.

Here are some quotes from the book that I found interesting:

"Soy formulas, the alternatives to dairy-based formulas, are specially designed for infants who are allergic to dairy products or for parents wishing to avoid giving their children any animal-based products...... Infants on soy formula may receive the equivalent amount of estrogen that is found in five to ten birth control pills each day.... How a plant-based estrogen expressed itself in an immature infant is unclear.... Many women know that imbalances in estrogen cause the quintessential menopause symptoms of depression, hostility, and aggressiveness. What does the excess estrogen do to little boys?"

---

"A study conducted in the New York City area showed that about one-third of children may be deficient in iron, associated with mental and psychomotor impairment during the first two years of life. Once possible cause? Cow's milk. Studies have shown that instestinal blood loss is increased by thirty percent in infants fed whole cow's milk. The study went on to say that "iron deficiency early in childhood may lead to long term changes in behavior that may not be reversed with iron supplementation, even though the anemia is corrected.""

I find this quote fascinating. It sounds to me as though babies drinking cow's milk in this study had intestinal irritation (resulting in blood loss), even with no diagnosed cow's milk allergy!! It really supports the statement that, "Human milk is for human babies. Cow's milk is for baby cows." The author actually uses this quote in the book:

"The advertisements, especially the ones with our favorite TV and movie stars sporting the familiar white mustache, say, "Yes, milk does a body good." My response is, "If you are a calf, yes.. If you're a person, no." Especially if the milk is pasteurized and homogenized."

This is going to be a long quote, but it really hits home the point that cow's milk is for cows. (bolding mine)

"There is considerable evidence that over eighty percent of the world's population is intolerant to dairy products. In the 1930s, Francis M. Pottenger, Jr., M.D., did a series of experiments on cats. After studying nine hundred cats over a ten-year period, he found that the only diet tat supported the health of his cats was raw milk and raw meat.

He found that by substituting heat-processed milk for raw milk, even when it was the milk from their mothers, physical and mental degeneration occurred, increasing with each subsequent generation. Kittens of the third generation of pasteurized milk failed to survive six months, and after four generations, cats were unable to reproduce at all.

Parasites and vermin abounded in the processed milk-fed cats. They developed skin diseases and allergies, from five percent in cats fed the raw milk diet to over ninety percent in the third generation of artificially fed cats. Their bones became soft and pliable.

Pottenger also notcied startling changes in the personalities of the cats. He noted that they suffered from "adverse personality changes... Females bacame more aggressive while males became docile." The type of physical and mental deterioration that Pottenger observed in cats on deficient diets paralleled the human degeneration that Dr. Price found in tribes and villages that had abandoned traditional foods.

He found that it took four generations on raw milk and raw meat to bring the cats back to normal - but only if he used cats from the first and second generation. After the thrid generation, the cats were infertile or unable to give birth to living offspring."

WOW. These studies were done in the 1930, and yet today we continue to alter our food sources to make them "better" and more economical. What are we doing to our bodies by consuming these altered foods? (Processed, pasteurized, irradiated, GMO, etc.) No one really knows. I beg you to look at your family's diet and really think about what you are putting into your bodies. Why suddenly are food allergies on the rise? I suspect that a large part of it is that we are consuming massive amounts of non-food- i.e., food that has been altered to the point that it no longer has any nutritive value and/or it is actually changing the genes in your body (GMOs).

Technical difficulties

2009-06-11T09:09:00.000-07:00

I just realized that this blog doesn't show the timestamp on each post like my other (personal) blog does.

Any blogging gurus out there that might have an idea why this is missing? I've skimmed through the HTML in the layout section, but didn't notice any references to the date in the code.

The Whole Foods Allergy Cookbook: Two Hundred Gourmet & Homestyle Recipes for the Food Allergic Family

2009-06-09T11:14:00.000-07:00

by Cybele Pascal

Just finishing looking this book, and it definitely gets my recommendation for food-allergic families! She has a lot of recipes that are free of all the top 8 allergens (rather than just gluten-free, or dairy-free, etc.), which is hard to find in many cookbooks. I also really appreciate that she uses a whole foods approach to cooking, emphasizing the importance of whole, unprocessed, nutritious foods in a limited (allergen-free) diet.

Flowchart of the types of allergies

2009-05-31T08:40:00.001-07:00

I just found this great flowchart at the USBiotek website (they do ELISA testing for food allergies) that shows the different types of allergies and intolerances, as well as things that may mimic intolerances, like- salicylates, preservatives, histamine foods, and others.

Months 18-20

2009-05-28T06:38:00.000-07:00

March - May 2009

I know, I know... I'm way behind in my blogging. We're getting ready to buy a house, so things have been a little crazy around here. I'm going to try and quickly write an update, but I will apologize in advance for it being so scattered. :)

After our lovely few weeks at baseline in January, and then our frustrating decline in February, things are finally looking up again. I don't know what happened to cause the decline, or how we've reversed it, but we're finally back at baseline again just in the past week (end of May.) I'm trying to be hopeful that we can continue the trend. DD had completely fallen off the growth charts again (hadn't gained anything, actually lost a couple ounces, since January), but finally had a growth spurt a couple weeks ago. She's also finally popping out some new teeth. I think it's because her body is finally getting a rest from the allergies, so it can focus on growth and maintenance.

We've had 2 (possible) anaphylactic reactions during this time. :(

Ana reaction #1
The first was in March, when I gave DD a few pieces of pineapple. I'm not positive this was an anaphylactic reaction, or if it was an OAS-type reaction (even though I can't find pineapple on any of the oas common foods lists.) She had pineapple when she was younger, and it seemed to flare up her eczema (but it was hard to tell if it was a reaction or just the acidity of the food). She really loved it though, so I wanted to try again. I cut a few very thin, quarter-sized pieces for her. On the 3rd piece, she started making a weird gagging noise and kind of spitting/foaming at the mouth. At first I thought she was actually gagging, or her airway was closing or something... but then it seemed like she was just making a lot of extra saliva and was trying to get it out of her mouth. Almost like she was trying to clear her throat and didn't know how. She coughed/spit out a bunch of saliva and seemed better when I gave her some water. Then she wanted to nurse, but she didn't seem able to latch on and got really upset. She finally latched on and nursed for a bit, then fell asleep (it was naptime.)

It was very frightening, but luckily didn't require any medication or epipen injections. I still had a prescription for some compounded (corn-free) benadryl that I hadn't filled, so I went straight to the pharmacy and got it filled just in case we had another episode like this one. And if anyone is curious how much a compounded prescription for generic benadryl (with a pine cellulose filler, no other ingredients) is.... it's about $50. Yeah. Seriously. But at least I talked them into doing capsules for me instead of the liquid, because they are good for 6 months (the liquid is good for ONE.)

Ana reaction #2
April was a rough month. DD reacted to both our apple and banana trials, and was still healing from those when we had another anaphylactic reaction. We still do not know what caused it, which is very frightening. All of the foods we ate that meal (lamb, broccoli, carrots, rutubaga) had been eaten many, many times before. The only thing I can think is that it was cross-contamination, either on the rutubaga (maybe a corn-based wash or something) or on the lamb. (We recently learned that our grocery store does NOT clean the machines between cutting different types of meat. Needless to say, I was pretty shocked... and now I have to call ahead and have them cut my meat first thing in the morning on clean machines.) Shortly after dinner, DD's top lip started to swell. I was panicked, but tried to remain calm. I was VERY glad that I had filled our benadryl prescription. I broke open the capsule and mixed the powder with some previously cooked blueberries, and DD ate them right up. The swelling stopped, and we didn't see any signs of breathing problems, so we let her go to sleep but watched her very closely that night.

I'm now very vigilant about carrying our epipens everywhere we go, along with vitamin C and pascalite clay (both of which can lessen an allergic reaction and help clear the 'toxins' out of the body.)

I'm focusing now on replenishing my nutrient stores from being on such a limited diet for so long. I'm also using supplements to try and open detox pathways, aide digestion and get my immune system back up to par- specifically B vitamins like methyl-b12 and 5-mthfr (folate), zinc, vitamin D, vitamin C, and others.

Again- sorry for the short, rambly post... hopefully after the move is done I will keep up on my blogs better. :D

Hope everyone is having a fantastic spring and not suffering too terribly with seasonal allergies!

Month 17

2009-02-19T08:51:00.000-08:00

February 2009

Food trials keep failing. One after another after another... and we rarely get to add another food to our limited diet. I made a huge decision this month to do something different.

I have made the decision to no longer be afraid of food.

That might sound silly to some, or obvious to others. But food has been THE focus of my life over the past year, and each food reaction is just a little more stress added to my mental load. Another concern is that because we've been eating such a limited diet, 1) we could create new sensitivities by eating the same thing over and over, and 2) we are not getting an adequate variety of vitamins and minerals.

So- the new plan is:
Every day I go to the grocery store and pick out a food that we either haven't eaten in a long time, or have never eaten (this started out as a plan to get a new food once or twice a week, but I got so excited about the idea it turned into every day.) I buy enough for the family to eat for one meal, and that's it. We eat it one time only. The premise is this - by eating foods only one time, you should be able to avoid allergic reactions. The first time you eat a food, an antibody is created so that the next time you eat it, it can attack. Well, if you never eat it again, your body never 'attacks' (reacts). Besides avoiding reactions, I'm hoping that rotating in new foods will give us the boost of extra nutrition that we need for healing. Oh- I've also added a zinc supplement and liquid magnesium supplement (yuck!) to my diet. Next, I'm hoping to add some B vitamins and folic acid, as those contribute to healing and detoxifying the body.

So far this month, we've tried:

canned pears (which had previously caused a reaction, but I hadn't eaten in 6+ months)
fresh garlic
rutabaga (I had never eaten before!)
kale (also never eaten)
mandarin orange
mango

DD has enjoyed every one, even the garlic. :) She has actually had a few mild reactions though, which was quite surprising because as I mentioned above, this shouldn't be physically possible according to all food allergy rules. Which means that we're also dealing with food chemical sensitivities (see Types of Allergies- I added a brief section about this). Recent discussion on my favorite forum (mothering dot community) has been about detox pathways in the body: how/why they get blocked, what effects that has, how to fix them. I've only started my research and my head is already spinning. But I'm hoping to catch up to the brilliant minds there and start clearing our detox pathways, which *should* help get rid of the food intolerances and chemical sensitivities (but not the IgE allergies.)

Oh- I almost forgot to mention that I finally finished reading Healing the New Childhood Epidemics by Dr. Kenneth Bock. I added some notes in the Books section, but I wanted to mention here too that it is really an amazing book. Very well written- some tearjerking stories, and good information about the how's and why's of food allergies (and asthma, autism, and ADHD.) I highly recommend it!! The book also talks a lot about methylation (which is one of the above mentioned detox pathways), which makes it even more important for me to start my research on fixing our detox pathways!

Month 16

2009-01-15T09:27:00.000-08:00

January 2009

Things are really going well this month. I feel like I'm finally starting to find some of the pieces to this crazy puzzle.

Some time since my last post, we took DD in for a homeopathic appointment, in hopes of finding her constitutional remedy. The homeopath gave her a remedy that day. Over the next 2 weeks, weird eczema spots began appearing in places that she's never had eczema before. They finally faded. I can only assume that it was from the remedy, but I'm not sure if it's a good sign that we've found the constitutional or not. We have a followup appointment in a couple weeks.

BUT- I am confident that between the CST, the tongue tie clipping, and the homeopathy, SOMETHING is happening!! DD gained more than a pound in the past month, which is more than she's gained in the previous 4 months total. She was just about to fall off the growth charts, and now we're back up to the 10th percentile!! Yay!

We're still having hit or miss food trials though. We trialed rice and it failed. We just finished a sweet potato trial, and it was also a fail (although it was a very mild reaction, so maybe they can go into a rotation diet.)

We had bloodwork done last week, and everything came back good (which is a relief, because that means that her gut is at least healed enough to be absorbing nutrients), EXCEPT her vitamin D. I kind of figured, since we're in the northern hemisphere, Pacific Northwest... not much sunshine during the winter months. But her level was really low- 11 (norm is 40-50+), so I'm on a frantic search for a vitamin D supplement that doesn't have any allergens. I'm hoping for a liquid so that I don't have to take 10 pills a day, but so far I've only found them with coconut oil, sesame oil, or olive oil- none of which DD can have. :(

But overall, things are looking good! I'm trying to keep optimistic that they will continue that way.

**End of the month update: All of our food trials are failing. Banana failed as well. And now the ONE packaged (junk) food that I thought was safe for us (Enjoy Life chocolate chips) is causing a reaction. :(

I ended up ordering Pure Encapsulations vitamin D- 5,000 IU capsules. I emailed the company and found out that both the filler and the capsule are both made from pine fiber. And they passed the trial!! I'm taking one pill every day, as well as going out for a walk in the sunshine (when we have it), so hopefully when I get my levels rechecked in a couple months my D will be higher. Oh, I forgot to say that I had mine tested too and I was at 20. So if the sunshine and supplement raise my levels, I can be confident that it will raise DD's as well since she's still breastfeeding.

More symptoms

2009-01-12T14:01:00.000-08:00

I'm listening to a seminar right now by Liz Lipski (author of Digestive Wellness) and she mentions some common food allergy/intolerance symptoms. (Of course, many of these are more obvious in adults than babies, but sometimes when figuring out your baby's allergies you find some of your own!)

low energy/fatigue
"brain fog"
headaches
sleep issues
sore throat
frequent throat clearing
frequent caker sores
nasal congestion
blurry vision
excess mucous
irregular hearbeat
irritable bowel symptoms

2008-12-14T14:21:00.000-08:00

The Food Intolerance Bible by Antony J. Haynes
ISBN: 0007163827

I just started reading this book, but am quite impressed already. It really is the most comprehensive book I've seen on the subject of food intolerances. But it seems to be pretty hard to find, which is why I included the ISBN. I live in a large city with 2 major library systems, and I had to do an interlibrary loan to get this book.

Month 15

2008-12-14T13:33:00.000-08:00

December 2008

Well, we're halfway through the month and I thought I would post some interesting, if not totally food-related information about our journey.

We've been seeing a pediatric chiropractor who does cranio-sacral work for about 6 weeks, and have seen dramatic results in DD. Since starting therapy, DD has completely lost her gag reflex and has actually started eating and swallowing her food!

We also just discovered that DD has a tongue tie! I was shocked that I had never noticed it before. We did have all the classic symptoms in the beginning, but I thought it was just from a bad latch and that things would get better (which they eventually did). In the beginning, I had a lot of pain while nursing, and had cracked and bleeding nipples for the first few weeks. I also had the lipstick-shaped nipple after nursing, and DD often made clicking noises. The thing that finally made me notice the tongue-tie was a picture of DD sticking her tongue out. Instead of coming to a point, it is heart-shaped at the end- classic sign of tongue tie. Because her weight gain has been so slow (and at some points nonexistent), we decided to see a doctor specializing in tongue ties, and ultimately decided to have it clipped. In the week following the clipping, DD gained 3 ounces- her fastest weight gain in months!! We're really hoping that pattern continues.

So although not completely food related, the CST (cranio-sacral therapy) and tongue-tie clipping seemed to be pieces in our puzzle. I'm very optimistic that they will help DD eat, swallow, and digest her food better, which in turn will help her overall gut health and perhaps the food allergies themselves.

(Just a note about tongue ties- it seems to be very difficult to find a doctor that actually knows anything about them, so if you want to talk to your doctor about it make sure to arm yourself with info before you go in. Here's an article written by THE expert in tongue ties, published in the American Academy of Pediatrics Journal.)

Back to food.... I accidentally (ha ha) trialed some Enjoy Life allergen-free chocolate chips, and they actually passed!! I was shocked, but excited. It's nice to have a treat! On a more sad note, I also trialed nori this month, and it failed. DD reacted pretty bad to it. I'm still deciding on what to trial next, and will be back to post more updates later. But DD's skin is clearing up nicely (between trials) and she's doing better than she has all year. Things are FINALLY taking a turn for the better in our adventure!

Month 14

2008-12-14T13:14:00.000-08:00

November 2008

Yikes- it's the middle of December and I haven't even written a November post yet! Ok, let's see if I can remember all the events of November.

Let's see... to follow up from my last post- our CLO trial passed!! But after 2 weeks of taking the Gastric Complex enzymes, I started to react to them. :( I started brewing and drinking water kefir, and that is going well. DD does react to it directly, but she seems to be ok with it through breastmilk, so I am continuing to drink it every day for a healthy, natural source of probiotics. I finally started back on my calcium supplement, and that also passed (TwinLab Calcium Citrate Caps, but I take them without the capsules because they're gelcaps. I did verify with the company that the calcium and magnesium are natural earth sources, and the citric acid is fermented beet sugar.) I started making bone broth with lamb bones (since our chicken trial failed and that was my source of bone broth), and made a special order through our co-op for a lamb liver, which DD and I have been enjoying.

Perhaps the biggest news of November is this- we got a referral from our new pediatrician to see a new allergist, and had our first appointment with her this month. I explained that I was fairly certain that DD didn't have any "true" (IgE/anaphylactic) allergies, but that I just wanted to make sure I was covering all my bases and not missing anything. And because her RAST bloodtest had shown a slight positive for peanuts earlier this year, I wanted to see if that was still positive or if the numbers had changed. Basically, I wanted to know how paranoid I needed to be around peanuts and nut products. She explained that allergy testing wasn't really that accurate at this age, so she tries to avoid it. But after much urging, she agreed to do a SPT (skin prick test) for 4 things: dairy, soy, peanuts, and corn. DD did fine with the test- the pokes didn't phase her at all. They came back to check the skin after 5 minutes, only to find that she reacted to ALL OF THEM!!! The dairy reaction was especially huge. I was shocked- just blown away. This was completely unexpected. The allergist assured me that there is a chance for false positives, and that the reactions weren't all that bad- all except the dairy, which was HUGE. But I have seen her react to all those things (except peanuts- she's never been knowingly exposed), so I'm highly doubtful that the positives were false. So I am now a very unhappy member of the EpiPen carrying club.... We got a prescription for the Epi Jr. and a prescription for some compounded corn-free benadryl, after I explained to the allergist and nurse that NO, DD could NOT have Benadryl after the test because it contains corn, and she just had a positive reaction to corn. Everyone in the office seemed surprised, but glad that I had done my research. The ignorance of medical professionals about food allergies can be so frustrating!!

Welcome to my blog!

2008-10-28T11:00:00.000-07:00

This blog is a journal of our struggles with food allergies & intolerances in my breastfed baby. ("DD" stands for "dear daughter", so whenever you see it in the blog it is referring to my daughter and our personal experience.)
My hope is for this blog to be a source of information and support to others who might be going through this!
Feel free to leave comments with suggestions or requests of what you would like to see on this blog. This is a work in progress. :)

Month 13

2008-10-07T17:06:00.000-07:00

October 2008

Happy birthday DD - you're ONE year old this month!!

First week of October, I started the E028 trial. Within days, DD's face was clearing and looking better than it had in months. I was ecstatic!! During this week, I drank only the formula, and DD ate only her daily few bites of broccoli as she had been for a few weeks. About 4 days into the trial, I was feeling very confident about us hitting baseline by DD's birthday (10/10). I decided that since she was eating broccoli every day (and healing), that she was obviously fine with it, and I could introduce it into my diet. I ate a huge piece of broccoli for dinner (with my E028) and DD had her few bites about an hour later. Two hours after that, she suddenly begins scratching her face... and a huge reaction follows. Within the next 24 hours, her chin exploded with eczema- open, oozing, and crusty - and her previously cleared cheek started bubbling and getting red. :(

The only possible explanation is the broccoli... but I have no idea why. The only thing I can narrow it down to is that we bought that particular broccoli from a store where we rarely shop, and maybe their broccoli was processed differently. I did call the store, and then the farm where they get it, to see if there is anything used in processing (like citric acid for 'washing' the produce, or ethylene gas for ripening it- both usually derived from corn) and I was told that nothing was used except water and fertilizer- no sprays or anything else. So I'm back at square one- totally confused.

I also discovered that the evening primrose oil that I bought had corn syrup in the gelcaps (yes, corn is in EVERYTHING.) so I only took that for one day before stopping. Hopefully that hasn't compounded our broccoli reaction. I decided I'm giving up on supplements for now... I have an entire shelf full of stuff, probably worth hundreds of dollars, that I can't take because I've found out about some hidden allergen in it. So I'm currently doing a trial of grassfed beef for myself to see if we can add that to my diet as a good source of EFA's. I will trial for 4-5 days, and if it seems ok, we will start a trial for DD directly.

I will also be trialing some water kefir soon too, and I really hope that passes so that I can get those natural probiotics in my diet.

End of the month updates:
The grassfed beef trial failed miserably. DD slept horribly and had lots of painful gas.
Oh yeah- and the E028 failed too. After a couple weeks of being on it, DD's symptoms got worse again... apparently that reaction just took a while to build up. So the elemental formula trial was once again a failure.
I went back over my food journal for about the tenth time, and finally realized what had caused the reaction on the broccoli day. I took about 1/2 a tablespoon of psyllium! So now I can add psyllium to the bad list. :(

I don't remember if I ever mentioned it, but I started seeing a new naturopath, and she gave me a few supplements to try this month. I did a trial of the Gastric Complex ezyme formula (by Integrative Therapeutics), and it went well. I tolerate it (which was surprising since I've reacted to all other enzyme products that I've tried) and DD tolerated it. Then I started a trial of the adrenal support pills (Adren-Plus, same company) by taking one pill during breakfast. Within 1/2 an hour, I was rolled up in a ball on the floor, writhing in pain (sharp stomach pains.) I ended up with the big D within minutes, and for the next 4 hours my body totally cleaned itself out (sorry TMI). I don't think I have ever been that sick in my life- think serious food poisoning. So apparently there was something in that formula that I'm allergic to! So frustrating... I will continue to take the enzyme formula until it runs out, and my Vitamin C, but when those are gone- I am officially done with supplements. My goal now is to use whole foods- superfoods and nutrient dense foods- to get my nutrition.

While I was sick, I decided to have some of my chicken bone broth for a couple days... and DD's face flared slightly. I had a feeling that chicken might be getting bumped to the bad list (which is a bummer, because I was eating a LOT of it, and DD also seemed to enjoy it), and there it goes- bye-bye chicken. :(

So my current diet includes: lamb, broccoli, zucchini, buckwheat flour (which I am now grinding myself and soaking overnight to get the full nutritional benefit), Spectrum palm shortening, RealSalt, blueberries, kombucha, Vitamin C, and Gastric Complex.

I just started a trial of CLO- and so far so good (I've only taken it for one day so far). Keeping my fingers crossed that it passes, because that would be a great source of nutrition and healing for us, especially since I've lost my bone broth. Next I will trial some water kefir. And after that- some foods!!

Month 12

2008-10-07T16:52:00.000-07:00

September 2008

Another month of ups and down... This month started off good- DD's skin was improving and things were looking up. I did a trial of broccoli, and it passed. Then I did a trial of coconut oil, and it failed miserably. We trialed turkey and chicken (for DD directly, I had been eating it previously), and they both seemed ok. But who knows, because we've never actually hit baseline which makes food trials very confusing. Is it a reaction from the new food, or a continuing reaction from something that I've been eating all along? Shortly after the trials, DD had a huge screaming fit after I gave her some chicken bone broth. The next day, she had a tiny bite of a rice noodle from my chicken bone broth soup, and she had a huge reaction. So now- is it the chicken? Is it the rice? Is it traces of corn from the 1T. of vinegar I put into the bone broth before it cooks??

I grew my own kombucha scoby, and started brewing my own in hopes to get more fermented foods/natural probiotics into my diet. Hoping to get some water kefir grains and start brewing that soon too.

We finally found a new, supportive pediatrician who is actually telling me that I'm doing everythign right. She's not pressuring me to start more solids like the old pediatrician did. She agrees that we should take things slow, as we have to be very careful with DD. She also agrees that I need to get some gut healing done first, and then we can focus on DD. But since the problem most likely stems from my gut damage, once that starts to heal, healing DD should be much easier. The ped recommended that I start taking evening primrose oil as a source of omega-3's, keep eating flax (another source), and do a trial of grassfed beef for DD (another source). (DD previously reacted to beef, but it was many months ago and I'm now realizing that she was probably reacting to something else I ate at the same time.)

Toward the end of the month, I started a trial of TwinLabs Allerg-C (Vitamin C from sage palm, rather than corn.) I'm taking it out of the gelcap, just in case gelatin is a problem, and just pouring it into my mouth. :) So far, so good.

At the end of the month, DD had another huge reaction (from who knows what), and I just hit the end of my rope... I decided there was nothing to lose, so I was going to trial the Neocate E028 formula again (drinking it myself, not giving it to her).

Site information/disclaimer

2008-08-28T10:59:00.000-07:00

***Disclaimer: I will try to keep this blog as factual as possible, but I am NOT a medical professional. This site is intended for education and support only.
Many of the topics that I write about are from our personal experiences with food intolerances, or delayed-reaction allergies (see Types of Allergies). If you have reason to believe that your child has an IgE or anaphlactic allergy as opposed to an intolerance, please seek the treatment of a medical professional- this type of allergy can be life-threatening!!

Month 11

2008-08-28T10:22:00.000-07:00

August 2008

It has been a month of ups and downs. My diet still seems to be working ok for DD, but she seems to react to almost everything I give her directly. She reacted to chicken (which she's fine with through my breastmilk). :(

She has also reacted to a few things that I've introduced into my diet: a goji flavored kombucha (later found out that goji is in the nightshade family, so that makes sense), and she had a major reaction to stevia. She even had blood in her poo from that one, which was weird because so far, dairy is the only thing that causes blood. So I immediately took that out of my diet and started her back on some probiotics (Kirkman Labs Bifido Complex). That last reaction was horrible- I always try to blame symptoms on something else- the crabiness and extra poop are because she's teething, her face looks more red in these lights, etc. But I finally realized that although she was teething, all the symptoms pointed to allergic reaction. I stopped using the stevia, and things got better almost immediately. I had originally started using stevia in an effort to take all sugars out of my diet, just in case a yeast overgrowth (candida) is contributing to our problem- take out the sugars and grains, and starve the yeast.

Now that my diet's somewhat under control, we're going to start working on some serious gut healing. I stopped all my supplements since DD seemed to be reacting to one or more of them, so we're going a different route. I'm starting my research (and experimentation) of cultured foods. I'm going to make my first batch of fermented pickled beets (from Nourishing Traditions), but using just sea salt (instead of salt and whey) since DD can't handle dairy. I've also been drinking kombucha daily, and am going to try growing my own scoby and making it myself since it is SO expensive!! I hope to also eventually get some water kefir grains and start making that too- but one (or two) thing at a time!

I'm also looking into other ways to get nutrients since I can't do supplements. First, and most important (since I'm off all dairy), is my calcium. I know that there is some calcium in my bone broth that I have every day, but I'm not sure how much... so I needed to find something else. I just found out that nettle has a lot of calcium, so I am going to start making nettle infusions and adding those to my daily routine.

Elimination diets

2008-07-25T21:55:00.000-07:00

First, a note about elimination diets:

Elimination diets are HARD- physically, emotionally, mentally- especially if you are nursing a baby. They should ONLY be done under the supervision of a health care provider. If you feel at any point during the diet that your health is being compromised, STOP IMMEDIATELY! Your health is most important- without that, you have no chance of helping your baby/child get better.

That said, elimination diets are the cheapest and most reliable way to test for food intolerances. (If you suspect IgE/anaphylactic allergies, you should never trial a suspected 'bad' food without a doctor.) The point of the ED is to get yourself (or your babe) to "baseline", meaning they are having no reactions. At that point, you can start reintroducing foods into the diet, or 'trialing' foods. If you are breastfeeding, you must be on the same ED as your babe.

If you are breastfeeding and watching for signs of allergy in your baby- in our experience, symptoms would start within 3-6 hours, but wouldn't become really noticeable until about 12 hours after DD nursed (when I ate something bad). I've heard stories of reactions starting anywhere from 15 minutes to 4 days later though, so don't be fooled if your baby doesn't react immediately. For this very reason- when you are 'trialing' foods (adding foods back into your diet after you reach baseline), you should only do one food at a time, and no more than one new food per week.

Couple things to remember:

DON'T CHEAT!! - This will completely start over your timeline for clearing the foods from your system. When someone says, "Oh, I'm sure a little won't hurt" don't believe them! A little is all it takes to start you over from scratch.
WATCH FOR HIDDEN INGREDIENTS!! - check the Hidden Ingredients link to see some common terms for hidden igredients. READ LABELS. Even if it's a product that you buy every week, read the label each time you buy it. Very often, manufacturers change their ingredients or their processes.
WATCH FOR CROSS-CONTAMINATION - many foods are made in "shared facilities" or "on shared equipment" with dairy, soy, wheat, etc. If you avoiding one of those foods, make sure your 'safe' food isn't contaminated with it.

Easiest way to avoid this is to avoid all packaged/processed foods. Make all your food at home, from fresh, organic ingredients. Yes, it is very time consuming and sometimes frustrating, but it's worth it.

KEEP A FOOD JOURNAL! - Perhaps the most important rule of the ED. It will help you look back at your diet and see patterns with symptoms. Write down everything that you eat, and any symptoms you observe.

Some helpful hints for an ED:

Make a special place for your food- one shelf in the pantry, one shelf in the fridge, etc. That way, you won't accidentally grab a food that's not on the diet.
Make food ahead! Especially on a TED, you will be hungry. It's nice to have food prepared so that you don't have to cook every time you want to eat.
On the same note, have snacks available. If you can only have pears (for fruit), make sure to keep your house stocked.

Taking out one or two foods

2008-07-25T12:36:00.001-07:00

This is the easiest form of an elimination diet, although it's rarely the most efficient.

In this form of the diet, you want to cut out one or two foods that you suspect are bad. Most common allergies for babies are milk and soy, so those are often the first choice to eliminate for a breastfeeding mom.

Dairy can take weeks to completely leave your (and your babe's) system, so don't give up hope if the symptoms don't disappear immediately. But normally, if this food is a problem, you should at least start to see an improvement in symptoms within the first week. If you don't see improvements, it does not necessarily mean that your baby isn't allergic... it could simply mean that he/she is allergic to more than this one food you eliminated.

IF your babe is only allergic to the one or two foods that you have eliminated, then you are done. Quite often though, the babe is allergic to more than the one or two foods you eliminated, which makes diagnosing them much more difficult with this diet. You will have to continue taking out food after food after food to try and figure out which ones are bad.

This diet did not work for us, although it was a good starting point. I saw results within the first few days after cutting dairy. And then the symptoms returned and got worse when I subsequently increased my consumption of soy and eggs.

ED - Elimination diet

2008-07-25T11:50:00.000-07:00

In an elimination diet, you will be eliminating all common allergens to see if symptoms improve. There are many forms of an elimination diet (check some of the books I listed in the Books link).
A common elimination diet for food allergies might eliminate:

the top 8 allergens - milk, soy, eggs, peanuts, tree nuts, fish, shellfish, wheat (I recommend cutting gluten altogether)
corn - this is not in the top 8, but because this government subsidized crop has made it's way into almost every processed food and is inadvertently consumed daily by many Americans, it is quickly becoming a common allergen
nightshade vegetables - potatoes, tomatoes, eggplant, peppers (hot and sweet)

nightshades are a common source of inflammation in the body, so although they might not be causing an allergic reaction, they can add to the reaction from other foods

refined sugars - can worsen a yeast problem and/or feed bad bacteria in your gut
food dyes and preservatives - these are common sources of allergy problems in children

An ED is for SHORT-TERM USE ONLY. Most practitioners recommend doing an ED for about 10 days. If there is no improvement of symptoms, you should return to eating normally. If you do see an improvement, you can start the trialing period of the diet.

Trialing foods - Again, if you suspect an IgE/anaphylactic allergy, DO NOT DO THIS AT HOME. Trials should only be done in a doctor's office. For food intolerances, you can trial a food by eating it for 4 days (at least 1-2 servings a day) and watching for symptoms. If, at the end of 4 days, you don't notice any new symptoms, you can assume that food is 'safe' and add it to your diet. Keep trialing foods until you are back to a sufficient, healthy diet.

TED - Total elimination diet

2008-07-25T10:59:00.000-07:00

This is the most restricted form of an ED, and like the ED it should not be done for more than about 10 days or it can lead to severe nutritional depletion of you and/or your child.

In this form of an ED, you are basically starting from the bottom and working your way up. You would start with around 5 foods, usually the least allergenic in each food group, like:

turkey
rice
zucchini/squash
olive or safflower oil
sea salt

Same as the ED- if symptoms improve, start trialing foods to add back to your diet. If you DON'T see a complete recovery from symptoms, don't be discouraged. There is always a possibility that you or your child is actually allergic to one of the foods on your TED. DD ended up being allergic to both pears and yellow squash, so the TED did not work for me until I started switching the foods around.

Trialing foods

2008-07-24T08:57:00.000-07:00

If you are doing an ED or TED, you want to start trialing foods once you reach baseline. This means adding foods back into your diet to see if they are the allergy triggers. When trialing, you should never introduce more than one food at a time. (Trust me... it makes it very confusing when you have a reaction. I had to completely start over on the TED a few times because of this mistake.) Most sources recommend eating at least one full serving of the food for 4 days. Obviously, if you see a reaction on the first day, stop eating the food. If you see no reactions after your 4 day trial, you can assume the food is safe and add it back into your diet.

If you find a 'bad' food - some allergists might want you to trial the food again in a few weeks or a few months. BUT, in my opinion, and in much of the literature that I've read- you really want your body (or your baby's body) to complete heal and let all those antibodies die down. Don't rush to reintroduce foods, no matter how bad you want to eat them again. :) For babies showing a reaction, I recommend waiting at least one year to trial a 'bad' food. The longer you wait, the better chance they have of outgrowing the allergy. (This point is somewhat controversial. There have been research studies done that show that complete avoidance of triggers is the best way to outgrow an allergy, and there have been studies done that show continuous small exposures is the way to go. Either way, I think it's best if the food is initially removed for a period of 6-12 months before trialing or starting small exposures.)

**If you suspect an IgE/anaphylactic allergy to a food, do NOT trial it at home. Trialing of IgE allergens should only be done at a doctor's office!!! I can't stress that enough. Anaphylactic reactions can happen in a matter of minutes- it could be life-threatening before you have time to give Benadryl, an EpiPen, or take your child to the hospital.

Hidden food ingredients & cross contamination

2008-07-17T12:30:00.000-07:00

Scroll down the page to see hidden ingredient information, or click on one of the links to go directly to that post:

Dairy - - Soy - - Egg - - Nuts - - Gluten - - Fish/Shellfish - - Corn

Watch for cross contamination at home and at restaurants. Be sure that allergenic foods are prepared away from your foods- for serious allergies, you should go as far as using different utensils, knives, cutting boards, pans, etc. Watch out for fried foods! Even if they are safe, they are often fried in the same oil as non-safe foods.

Check your supplements (vitamins, etc.) and enriched foods!! Even if they don't say on the label, call the manufacturer and ask. For example, Vitamin C is often derived from corn. Vitamin E (which is in most enriched packaged foods) is usually derived from soy. It will not say soy on the label, even if an ingredient is derived from it!!

How did this happen?

2008-07-17T11:54:00.000-07:00

In all my research, I have yet to find anyone who can say what causes allergies. Often, IgE allergies are genetic- if you have allergies, your children are more likely to have them too (food, environmental, etc.)

For intolerances, it can also be genetic, or it can be caused from damage in the gut (digestive track). See my link on Leaky Gut for more information.

For babies- a common cause for food intolerances is the mother's digestive health before, during, and after pregnancy. Use of antibiotics, steroids, and NSAIDs can have a devestating effect on your digestive health. Pregnancy is hard enough on your body, and when you throw in antibiotics, you immune system just gets overloaded. C-section babies are at further risk, because they don't pick up the initial bacteria from mom (normally picked up while traveling through the birth canal) to colonize their gut. And top it off with antibiotics during/after labor, they end up with no healthy bacteria to fight off the bad bacteria. This leads to damage, and ulitmately food allergies. See my "Pre-Birth" post under Our Story for how this happened to us.
Also, here's another mom's take on the effects of c-section, antibiotics, etc. and how they relate to allergies.

Vaccines can also contribute- they are very hard on an immature immune system, not to mention that many are cultured on animal products, eggs, or other high-allergen substances. They also upset the Th1/Th2 balance in your body, so your immune system starts attacking things that are benign.

Can you outgrow allergies? Sometimes, yes. Especially if you have food allergies caused by leaky gut- if you avoid the bad foods, and work on healing your gut, you have a better chance of outgrowing the allergy and being able to eat the food(s) again. Children very often outgrow food allergies. The exception is peanuts/tree nuts and fish/shellfish, which are usually life-long allergies. :(

Hidden corn

2008-07-17T11:39:00.000-07:00

Corn is a sneaky one!! It is in SO many packaged or processed foods. This was by far the hardest thing for me to eliminate from my diet.

Here are some hidden corn ingredients to watch out for -

ascorbic acid (Vitamin C)
aspartame
caramel color
citric acid
corn syrup, corn syrup solids, high fructose corn syrup
dextrose
matrodextrin
methylcellulose
natural flavors, flavorings or seasonings
sorbitol
saccharine
xanthan gum
xylitol

Common source of corn:

adhesives (like the strip on an envelope or stamp, or in things like stickers and band-aids)
applesauce
alcohol
baking powder
baking mixes
bread
cereal
canned fruit
chips
coffee creamer
condiments
cough syrup
drink mixes
ice cream
instant coffee
jello
jams/jellies
marshmallows
mayonnaise
powdered sugar
processed meat
salad dressings, sauces
soft drinks
vanilla extract
white vinegar

Here's a link to a more complete list of possible corn-containing products/ingredients.
Here's another site with corn information.
Here's a great corn allergy blog.

Hidden fish & shellfish

2008-07-17T11:33:00.000-07:00

Here are some hidden fish/shellfish ingredients to watch out for -

Always contains fish or shellfish:

agar
alginic acid
ammonium alginate
anchovies
calcium alginate
disodium ionsinate
potassium alginate
propylene glycol alginate
sodium alginate

May contain fish or shellfish:

Asian sauces
Caesar salad dressing
Omega-3 fatty acids

Common sources:

Asian foods
fried food (can be cooked in the same oil as fish)
steak or Worcestershire sauce

Starting solids for an atopic babe

2008-07-17T11:26:00.001-07:00

The most important thing to remember is- DON'T RUSH IT!! Take it slow. Breastmilk is best, and that is especially true for an atopic child. Just because your baby turned 6 months, doesn't mean you need to rush out and buy baby cereal. Many pediatricians advise delaying solids until 12 months for babies with food allergies. But make sure to talk to your health care provider and do what is best for you and your babe.

I posted a couple charts in the Links section. Both are from Joneja, the author of Dealing with Food Allergies in Babies and Children. One shows which foods should be started at which age (remember, you can always delay longer- these are just guidelines of the soonest you should start each food), and the other shows which foods are most/least allergenic.

Although mainstream doctors recommend starting with rice cereal, it is definitely not the best choice. Grains are the hardest food for a babe to digest, so they should really be started last, and after 1 year when the baby's digestive track is fully matured. (The only reason that rice cereal is recommended as a first food is because it's iron fortified. You can easily find other foods that are high in iron if that is a concern for your baby.) Start with the least allergenic veggies and fruits, then meats.

Hidden gluten

2008-07-17T11:17:00.000-07:00

Here are some hidden gluten ingredients to watch out for -

Always contains gluten:

barley, barley flour
barley malt extract or flavorings
bulgur/cracked wheat
couscous
durum
eikorn
emmer
farina
farro
flour (unless labeled gluten-free)
graham flour
kamut
matzoh/matzoh meal
rye products
seitan
semolina
spelt
wheat products (bran, germ, starch)

May contain gluten:

baking powder
bread crumbs
brown rice syrup
buckwheat pancake/baking mixes

(buckwheat itself is gluten-free, but the mixes usually contain a portion of wheat flour as well)

cereal extract
dextrin
flavorings or seasonings
gelantinized (or pre-gelatinized) starch
high protein flour
HVP or HPP (hydrolyzed vegetable protein or hydrolyzed plant protein)
imitation seafood or bacon
malt (flavoring)
maltodextrin (can be wheat or corn)
starch, modified starch, modified food starch
TVP (texturized vegetable protein)

Common sources:

baby food
baked goods
baking mixes
beer
breaded foods
cereals
flavored coffees and teas
sauces (soy, Asian, gravy)
processed meats
licorice
malts, milk shakes
pastas
snack foods
soups (canned, dried, cubes)

Hidden peanuts & tree nuts

2008-07-17T10:55:00.001-07:00

(**Note: peanut allergies and tree nut allergies are 2 very different things. It's very possible to be allergic to peanuts, but not tree nuts, etc. For my convenience, I have chosen to combine peanuts and tree nuts in this post.)

Here are some hidden nut ingredients to watch out for -

Always contains nuts:

arachis
mandalona
goober peas or nuts
marzipan
nougat
gianduja

May contain nuts:

asian sauces, flavorings
chocolate
emulsifier
flavorings or seasonings
HVP or HPP (hydrolyzed vegetable protein or hydrolyzed plant protein)
pesto
vegetable fat, oil

Common sources:

alcohol (frangelico, amaretto)
Asian foods
baked goods
baking mixes
bettered or fried foods
candy
cereals
crackers
ice cream
Mortadella
pastry
nut butter
satay sauce
sauces, gravies, chili (peanut often used as thickener)
soups (mostly dried)

Hidden soy

2008-07-15T12:48:00.000-07:00

Here are some hidden soy ingredients to watch out for -

Always contains soy:

edamame
miso
natto
shoyu
sobee
tempeh
TVP (texturized vegetable protein)
tofu

May contain soy:

bulking agent
emulsifier
guar gum
gum arabic
HVP or HPP (hydrolyzed vegetable protein, hydrolyzed plant protein)
lecithin
protein, protein extender, protein filler
MSG (monosodium glutamate)
seasonings
shortenings
stabilizer
thickener
vegetable gum, vegetable starch, vegetable oil, vegetable protein

be wary of anything that says "vegetable" but doesn't specify which one; it is usually soy

Common sources:

Vitamin E
baby food
baked goods
bouillon cubes
canned fish
Chinese food
chocolates (cream centers)
cooking oils
gravy (sauce) powders
hamburger patties
hot dogs
ice cream
infant formula (including cow's milk formula)
margarine
mayonnaise
meat products
powdered meal replacers, protein drinks
sauces (soy, Asian, Worcestershire, gravy)
seasoned salt
shortenings
many "dairy-free" or vegan food products

Hidden egg

2008-07-15T10:43:00.000-07:00

Here are some hidden egg ingredients to watch out for -

Always contains egg:

albumin/albumen
globulin
livetins
lysozyme
ovalbumin
ovamucin
ovamucoid
ovoglobulin
ovovitellin
Simplesse
vitellin
yolk

May contain egg:

binder
coagulant
emulsifier
flavorings ("natural flavor" or "artificial flavor") or seasonings
lecithin
white wine, beer, or root beer (often 'washed' with egg whites)

Common sources of egg:

baby food
baked goods
breakfast cereals
candy (nougat, divinity, white chocolate)
creamy fillings
custard
ice cream
malted cocoa drinks
marshmallows
mayonnaise
meringue
pasta
processed meat
salad dressings (especially Caesar)
sauces (hollandaise, bearnaise, newburg)
sherbets
soups
specialty coffee, coffee flavoring
tartar sauce
VACCINES/FLU SHOTS

Hidden dairy

2008-07-14T21:58:00.004-07:00

Here are some hidden dairy ingredients to watch out for -

Always contains dairy:

casein
caseinates
de-lactosed whey
lactalbumins
lactoglobulins
lactose
nougat
rennet
whey, whey powder, whey protein

May contain dairy:

artificial butter flavor
caramel color or flavoring
flavorings ("natural flavor" or "artificial flavor") or seasonings

Common sources of dairy:

baby foods
baked goods
breaded foods
candy (especially chocolate)
canned fish
"non-dairy" substitutes
processed meat, deli meats
puddings, custards
sauces
sherbet
margarine
instant mashed potatoes
baked goods
packaged foods
sausages
canned soups

Allergen-friendly foods!

2008-07-14T21:58:00.003-07:00

Here are some brands that I've found that make allergen-free foods. Please check each brand and each package carefully before eating, to make sure that none of your specific allergens are included.

I know there are a lot more companies out there that cater to those with food allergies, so please feel free to leave comments with your favorites!

Added from user comments:

Food for Life brown rice tortillas
Mary's Gone Crackers original crackers
Dagoba organic 59% dark chocolate
Turtle Mountain So Delicious coconut milk (dairy free!) yogurt and ice cream
Eden Foods canned tomatoes (no citric acid!)
Pamela's gluten-free cookies
Beeler's pork products

Allergy testing

2008-07-14T21:58:00.001-07:00

There are a lot of different ways to test for allergies. Most conventional allergists will only use the RAST or skin prick/skin patch test, which will only show IgE allergies (see Types of Allergies). There are alternative tests which you can get through a natural practitioner, like an ND, or sometimes directly through the lab that does the test. Two of these are the ELISA and the ALCAT. There is also testing which is considered more alternative- such as muscle-testing (kinesiology) and pendulum/crystal testing. I will try to give a brief description of each test. But before trying any of these tests, you should keep in mind that NONE are 100% accurate. Some are better than others, depending on the type of allergy you have.

RAST (radioallergosorbert test) - this is a blood test usually done by an allergist. Your blood is drawn and tested; no allergens are placed in/on your body. This test measures the amount of IgE that reacts with a specific allergen. An allergist will choose which foods or environmental allergens are tested. Good for people with eczema or reactive skin as opposed to skin tests. Good for environmental allergies, or IgE food allergies. Not very accurate for babies.

Skin tests - There are a few different types, but the most common is the skin prick test. The skin is scratched with a little needle, then an allergen is rubbed onto the scratch. The amount of swelling on and around the spot is measured to show an allergic reaction. This test also shows only IgE allergies; it will NOT show food intolerances. Not very accurate for babies.

Patch testing - I haven't actually been able to locate a doctor who uses this test, but I'm told that some do. From my understanding, allergens are placed on discs which are taped to the body and left for a period of time (48 hours?) then checked for swelling and redness. This test is said to work for both IgE and IgG allergies.

ELISA (enzyme-linked immunosorbert assay) - This is a blood test done to check for delayed-reaction allergies or intolerances. Most will NOT show IgE allergies, although some labs do a combined IgG and IgE. There are many varieties of this test, and just like all the others it is not 100% accurate. Can usually test for hundreds of foods with one blood draw. Accurate (or so I'm told) on babies of any age.

ALCAT - This is another blood test that is for finding delayed-reaction allergies; will NOT show IgE allergies. Measures leukocyte cellular reactivity in whole blood. There is some debate as to whether you need previous exposure to a food before it will show up on the test accurately. This is one of the few tests we didn't try, so I'm not as familiar with how it all works.

Muscle testing (applied kinesiology) - This test is done by alternative practitioners, and is used for many things besides allergies. The basic idea of this is that you can hold a food or chemical in your hand, the practitioner will press down on your arms and determine whether the arm holding the substance is weaker- indicating that it is unhealthy for your body. We have also not used this test, so I welcome comments or additional information about it.

Crystal/pendulum testing - This test is easy to do yourself (and free!). It involves placing the questionable substance in one hand, holding your pendulum over that wrist, and watching the direction or pattern of how it swings. The results are not the same for everyone- you have to test your crystal/pendulum to see what means "yes" and what means "no" for you personally. If you get a "no" reading, then you know that substance is not healthy for you. Here's a cool video of crystal testing in action.

Types of Allergies

2008-07-14T16:49:00.000-07:00

Food allergies can encompass a wide range of symptoms and reactions. Often, people think of "true" allergies being the kind that cause anaphylactic reactions, although this is just one type of reaction. I find it easiest to refer to DD food intolerances as allergies when we are in the general public, or people will just write them off as no big deal. Allergies are allergies- whether they cause digestive problems, or a rash, or anaphylaxis. The actual definition of allergy is an immunological response to a substance.

There are many different types of allergic reactions. I've found numerous ways that they can be classified, so I will just give you the basics.

Immediate-reaction allergy - This is an IgE mediated, anaphylactic reaction. Often referred to as "true" allergies. Reactions can be severe and life-threatening.
Delayed-reaction allergy - These are mediated by antibodies other than IgE (IgG, IgM, IgA, etc.) Most food intolerances fall into this category. Reactions often show up from several hours to several days after exposure to a substance, and cause an inflammatory response in the body which can show up in a variety of ways- digestive issues, skin issues, etc.

See the allergy symptoms link for more information on symptoms of each allergy type.

Other things that could cause allergy-type symptoms:

Food chemical sensitivity - This isn't actually an allergy (in the sense that it doesn't involve the immune system), but a reaction to specific naturally-occurring chemicals in foods. Most common sensitivities are to salicylates, amines, and others like sulfates and nitrates. Here's a website with more information. FAILSAFE diet is usually recommended.
OAS (oral allergy syndrome) - This condition usually causes allergy-type symptoms (itching, burning) in the mouth when eating certain raw foods, such as fruits or nuts. It's most common in people with environmental allergies, as it's the pollen that you're reacting to. Many people can tolerate the foods if they're cooked (fruit) or soaked (nuts).

Leaky gut & how to heal it

2008-07-14T12:34:00.001-07:00

There is a really good description of leaky gut in Digestive Wellness (see Books link). Leaky gut can also cause all sorts of health problems, from IBS to Crohn's disease, but I will try to give the basics of leaky gut in relation to food allergies. This is specifically in relation to delayed-reaction allergies (intolerances).

Basically, when you have poor gut health (caused by an imbalance of bad/good bacteria), it can cause damage to the mucus lining of your digestive track. The lining is kind of like a strainer, only letting through certain things into the bloodstream. When the lining is damaged, the holes in the strainer open up a little bigger than they should. This lets larger food proteins into the bloodstream. Your body sees these large proteins as foreign invaders, and immediately starts making antibodies to fight them off. So the first time you eat a food, you won't notice a reaction, because thats just when your body is making antibodies. The 2nd time you eat the food, your body has the antibodies ready, so when the large proteins go into your bloodstream the antibodies fight back- hence, an allergic reaction. This reaction can manifest in many ways, but overall it's an inflammatory response, somewhere in your body.

In addition to avoiding the foods that you're allergic to, you need to work on healing the gut. If you don't, you might become sensitive to more and more foods over time. There are a lot of suggestions out there for gut healing, including in Digestive Wellness. Here are some that I have read or heard about. Always do your own research before starting any supplements, as again- I am not a medical professional. These are simply tips that I have learned, that may or may not help your particular situation.

Bone broth - This is just broth/stock made from animal bones (we use chicken). It is full of nutrients, and since it's made from bones it has glutamine- which helps to rebuild the mucus lining in the gut.
Probiotics - A must have for gut healing. Probiotics are good bacteria, which your body needs for good gut/immune health. They are found in many cultured dairy products (although many store-bought products have been pasteurized, so the cultures are dead and useless.) They are also sold in capsule form at most health food stores. Be sure to find one that is NOT dairy-derived if you are allergic to dairy. Most are made from dairy, so be sure to read labels carefully. If you can have dairy, consider fresh or homemade yogurt or kefir. Also, fermented foods (homemade) are a natural source of probiotics, as is kombucha.
Digestive enzymes - These can be found in capsule form, or in fresh, local produce. Enzymes help your body break down food. Your body naturally has enzymes, but sometimes they are overworked and can't get all the food broken down. The only other source of enzymes are in fresh, local produce. Most food sold in grocery stores has very little enzymes left, as they start to break down as soon as the food is picked. Processing and pasteurizing will kill any enzymes that are left, so your body has to make up for this lack of enzymes by breaking down everything itself. It's a lot more work on your body. See the Links section for more info.
Quercetin - Acts as an anti-inflammatory.
Vitamin C - Helps clear the body of toxins, and rebuild damaged cells. **Beware: most store-bought Vitamin C is made from corn. If you are allergic to corn, you will have to find a quality supplement in a health food store or online that is made specifically for people sensitive to corn.
Cod Liver Oil (CLO) - Contains essential fatty acids (EFA's) that are vital for optimum health; reduces inflammation.

Other sources of important EFA's: flax, evening primrose oil

Cut the sugar out of your diet - sugar can feed yeast/Candida - a harmful bacteria that can cause all sorts of health problems and exacerbate leaky gut.
Chew your food thoroughly - The more broken down the food is before it reaches your gut, the less chance of it causing a reaction. Your saliva has lots of enzymes that start breaking down your food before it even reaches your stomach. Let them do their job and give your stomach a break!

Helpful Allergy Links

2008-07-14T12:00:00.000-07:00

Here are some websites that I have found helpful in my research:

Feeding an allergic babe:

Joneja food chart - this chart shows the most/least allergic foods in order of allergenicity
Joneja: Feeding the Allergic Infant - this chart shows which foods are good to begin, at what age, when starting solids for an atopic child

Allergy support sites:

Recipes and food info:

Cooking Allergy Free
Wholesomebabyfood.com
Kathy's Recipe Box - Kathy has some great allergen-free recipes on this blog that she has successfully made for her food allergic kids
This is how we do it: Recipes, information and anecdotes about living with kids, multiple food allergies, and kids *with* multiple food allergies

Other resources:

Mothering.com Allergy Forum - this is where I first met other moms that were going through the same thing as me and DD. I have learned so much from them, and have gotten the understanding support that has helped me through my struggles.
Enzyme Stuff - great information about what digestive enzymes are, how they can help you, how to find the right one for your symptoms, etc.

Symptoms of food allergies

2008-07-14T11:53:00.001-07:00

Here are some symptoms that DD has shown from her allergies/intolerances:

dark circles under the eyes
allergy ring around the anus (hers wasn't actually a ring, but a spot on either side of the anus)

DD's looked like little spots of diaper rash, but they wouldn't go away no matter what creams we used, or how long she went diaper-less; the skin eventually looked completely raw, as if her stools had burned the skin off. It would occasionally bleed.

poo issues

green, sometimes looks like strands of cooked spinach
mucus
blood (red specks or strings)
strong, foul smell or acidic smell
frequent diarrhea

colic symptoms

trouble sleeping/frequent waking

DD would wake up about 5 minutes after laying her flat; she would sleep longer if I held her upright

inconsolable screaming episodes, mostly at the end of the day
gassiness
arching back, squirming as if uncomfortable

spitting up
cradle cap

this appeared right around the same time as the other initial symptoms and wouldn't go away no matter what we tried. After I removed dairy from my diet, it completely cleared without any treatments.

eczema
I don't know if this is a common symptom... but DD always gets a lot of dark, sticky ear wax when she's having a reaction to something in my diet
for breastfed babies- a sign might be really frequent feeding. DD wanted to nurse sometimes every 20 minutes at our worst point. An LC told me that she probably wanted to eat so often because her stomach hurt, and the milk would make it feel better (temporarily).

Other signs of food allergies (many of these signify an anaphylactic reaction, which needs immediate medical treatment):

hives
trouble breathing

this can sometimes be hard to tell in an infant or toddler. Sometimes it looks like the child is trying to stretch their neck out, or keeps pushing their head forward.

rapid pulse/heartbeat
sweating
behavior changes
sleep changes
frequent ear infections

Often, children are diagnosed with colic, behavior problems, attention or learning disabilities, or others, when in fact they are reacting to something in their diet.

More symptoms added from user comments:

horrible hiccups
full body pin prick rashes
vomiting
a huge increase in number of poopy diapers
wetting the bed while sound asleep

Books I recommend

2008-07-04T13:04:00.000-07:00

These are some books that I have read, or have been recommended to me (that I have on my list to read). The top 3 are absolutely must-have books for those dealing with severe food allergies or intolerances!

Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies by Kenneth Bock, M.D. and Cameron Stauth is another helpful book which can help one study and understand the pattern of what is happening to our kids at an alarming rate- and what you can do about it.
**update: I finally finished reading this book, and it is definitely moving to the top of my recommendation list!! Dr. Bock talks about the underlying causes for the 4-A disorders, some being: heavy metal toxicity (from vaccines and environment), nutritional deficiencies, gut dysbiosis and more. He also includes his healing program, from diets to supplements to medications that he uses. EXCELLENT
Dealing with Food Allergies in Babies and Children by Janice Joneja - by far the most helpful book that I've read in terms of learning what it all meant. Joneja also has some great charts in this book about most/least allergenic foods, how/when to start certain foods as solids for babies, etc.
Digestive Wellness by Elizabeth Lipski - fantastic book that talks about gut health, and the myriad of illnesses and problems (including food allergies) that can be caused by imbalances in the gut, as well as how to fix them
The Allergy Self-Help Cookbook by Marjorie Hurt Jones, R.N. - excellent resource for those with a lot of allergies! This book has great recipes, as well as information on how to do a rotation diet (called a rotary diversified diet in this book), and talks about different grains/flours and what uses they are best/worst for.
Is This Your Child by Doris Rapp - I only read part of this book. It came highly recommended to me, and talks a lot about behavioral issues relating to food allergies

Month 10

2008-07-04T12:51:00.002-07:00

July 2008

Well, I found yet another bad corn product... I have been taking Vitamin C, as it is good for ridding the body of toxins, as well as for overall health. Since it is so hard to find supplements that are TOTALLY allergen free, I bought some straight Ascorbic Acid Crystalline Powder by NutriBiotic. The bottle says, "we use only 100% pure pharmaceutical grade ascorbic acid (USP-FCC) which contains no corn residue... persons allergic to corn or yeast can use this product with confidence." Apparently, were are among the 2% or whatever that cannot tolerate corn in any form... even when completely broken down. After the Vivonex incident, I should have know better... So there goes my Vit C supplement.

I had read that ghee (clarified butter) was ok for a dairy-free diet, as there are no milk proteins left in it. So I tried it, and thought that it was ok.... But after eating it for about a week, DD started showing a serious reaction. I should have known right away when I saw a fleck of blood in her poo- dairy is always what causes blood for her. I also have a feeling that there was something in the Jones cola that I drank- either in the caramel color (maybe dairy), or the natural flavors. So between those two things, the eczema got oozy and crusty again on her cheeks, and she had a brand new patch of it on her upper back. Actually, the spots on her back look suspiciously like hives, rather than eczema, which is a bad sign. It might mean an IgE (anaphylactic) allergy to dairy. (**Later update: I heard back from Jones, and they do use corn-derived products in their preservatives. :( So much for my corn-free soda...)

My current diet is this:
breakfast: buckwheat pancakes (buckwheat flour, water, flax [as an egg replacer], safflower oil, water), and some plain ground pork (pork, salt) sausage.
lunch: homemade chicken bone broth with thin rice noodles (pad thai style noodles) and sea salt
dinner: chicken, turkey, or pork with broccoli or zucchini and safflower oil

This diet actually seems to be ok with DD, and besides the few occasional flareup she seems to be clearing up really nicely!

The doctor ordered some Neocate E028 Splash for me to try. It does contain maltodextrin (which may be derived from corn), but no corn syrup solids like the Vivonex. DD seems to be tolerating it fine, so my plan is to do a 2-week run on it to get all the allergens cleared from my body and then slowly start reintroducing foods in my diet.

Finally got the full shipment of the E028 and started our trial. Just like in the first (one day) trial, DD was very itchy by the first night, and her face was slightly flared up by the morning. In the first trial, the redness went away by the afternoon, so I thought it must have been something other than the formula... Alas, this time the redness stayed. It wasn't a huge reaction, very mild- but definitely a reaction. And by day 3, my eczema behind my knee had returned, and my mystery rash on my thighs started to appear. So apparently, I can't tolerate the formula... and I think that DD is reacting to my reaction. So much for that experiment. Back to the buckwheat pancake diet.

Within a day of stopping the formula, DD's skin was almost totally clear. Within the next week, it flared up again... Now, I am convinced that she is reacting to one (or more) of the supplements that I'm taking. I will stop all supplements for a week and see how she does, then add them back in one at a time until we find the culprit.

Month 9

2008-07-04T12:51:00.001-07:00

June 2008

DD continues to react to more and more foods in my diet... we also discovered that the "hypoallergenic" probiotic from Kirkman Labs that DD had been taking could have traces of corn in it, so we've stopped those.

This month, I became really sick. My body started rejecting foods worse than DD's. Everything I ate would just go straight through me, completely undigested. After a week of this, I went to see a new doctor, because I was afraid that I would end up in the hospital from dehydration or malnutrition. She agreed to order an elemental formula for me to drink for a while until we could figure out what was going on. They also did bloodwork and a stool culture, all of which came back normal- except that my Eos level in my blood was elevated, suggesting an allergic reaction.

After another week, I stopped taking all my supplements and my symptoms started decreasing. I think that it might have been from my digestive enzymes, which I had been taking for over a month with no problem. But the only logical explanation is that my body became sensitized to them and started treating them as an allergen. Big bummer, since they are meant to help digest food and lessen allergic reactions.

Meanwhile, I got the elemental formula- it was Vivonex RTF, an adult complete elemental formula, used for tube feeding or severe gastrointestinal impairment or food allergies. I opened a can, took a sip and gagged. It was perhaps the most disgusting thing I've even tasted in my life... but, it was worth a try to see if we could get my & DD's symptoms under control.

(Another reason that I wanted to try the elemental formula is this- many doctors had suggested that I just stop breastfeeding DD and put her on formula. Not only do I think that's just a stupid idea overall, I thought there had to be a better way. If she can drink an elemental formula and relieve her allergy symptoms, then why can't I drink the formula instead? That way, we both get a break from our allergens, and DD still gets all the health benefits of my breastmilk.) Oh- and the premise behind elemental formula is that it contains NO protein (which is what most people are allergic to)- it's all been super processed and broken down into amino-acids, so is supposed to be hypoallergenic.

Turns out, DD is MUCH more sensitive to corn than I ever thought. I drank the Vivonex for one day, and by the next morning her face was flared up and she was itching like mad. :( So much for that idea. I spoke to the doctor about trying a different formula- I decided on Neocate E028 Splash. It does contain maltodextrin (which is often derived from corn), but it was one of the few formulas that doesn't contain corn syrup solids- which some suggest might trigger a reaction, even in an elemental formula. Hopefully it won't take another 3 weeks to get processed through the insurance company and pharmacy...

Month 8

2008-07-04T12:50:00.000-07:00

May 2008

This month was pretty stressful for me. I kept finding new foods that DD was reacting to. And my diet was so limited that I was struggling to get 1,000 calories some days, which is nowhere near enough when you're breastfeeding. Between the starvation and the stress of watching my baby suffer, it really triggered some PPD (post-partum depression).

We got DD's blood drawn to send in to Sage Labs for an ELISA test - they do IgG and immune complex ELISA. It was quite a traumatic ordeal... we went through 3 labs (and a LOT of screaming and crying) before someone could get her blood, and then the lab couldn't use it because it was lipemic and hemolyzed from the traumatic blood draw. So we had to do it all over again, but finally we found someone that knew what they were doing at Marybridge Children's Hospital in Tacoma. They were great with DD- got her blood right away, she didn't even flinch when they put the needle in, and didn't fuss at all. We will never go anywhere else to get a blood draw- they were so great.

I decided to get myself tested (ELISA) as well, so I went through a local lab - Meridian Valley Lab. They do a combined IgG and IgE test. I wasn't really expecting to see any results on mine, except maybe tomatoes because those have always given me stomach distress when I eat them in concentrated form, like in marinara sauce. The results were shocking to say the least.

Here are the foods that DD and I tested positive (allergic) to:

moderate reaction to:

beef

malt

sunflower seed

kidney bean

tomato

serious reaction to:

dairy (all dairy was off the charts- significant is >350-500 depending on the food, and I scored in the 1600-1700 range for all)
egg white
egg yolk
gliadin
gluten
wheat
lemon
almond
peanut (almond & peanut were off the charts as well- significant is >138 & >206 and I got 1701 and 1527)

DD (her test just showed positive or negative, no range of severity):

apple (oops, been eating a ton of those...)
brewer's yeast
grape
lemon
oat
orange
peanut
tomato
white potato
almond
apricot
barley
cantaloupe
carrot
cashew
celery
cinnamon
cranberry
honeydew
peach
pear (oops- been eating a ton of these too, since they are the least allergenic fruit. good thing we stocked up the pantry when they were on sale. *insert sarcasm*)
shrimp
squash mix (she has definitely shown a reaction to squash, but not zucchini, which interestingly is tested separately and she tested negative for that)
sweet potato
benzoic acid
casein
catfish
lime
raspberry
swordfish

I decided to start on a rotation diet. Both ELISA tests came with a suggested one, but of course our results were different, so neither one would work completely for us. Here's our diet:

The diet is boring... it's really hard to find recipes that use these specific foods toghether. Most of my meals consist of plain foods, like roasted chicken and steamed beets.

I started making bone broth. In my reading, I found that it has lots of healing benefits- including healing for the digestive lining. It's also full of vitamins and minerals. I use raw or cooked bones, usually chicken or turkey, soak in water (just covering) + 1 T. vinegar for about an hour; bring to a boil, skim all the foamy stuff off the top; reduce heat to Low and simmer for 12-24 hours. Strain and cool, skim fat from top. Good bone broth should gel when cooled- it looks really disgusting, like chicken Jello. Then I freeze it in ice cube trays, so that I can use a little every day. You can use them like bullion cubes!

I thought that the bone broth would make a good first food for DD, so she has been having a few spoonfuls every day. I'm hoping that it will help speed up her gut healing, as well as providing her with some extra vitamins, iron, fat, etc. She loves it!

Life for me is still pretty stressful by the end of the month... my insurance company won't pay for me to see a nutritionist to figure out my diet, and I am on the verge of collapse. I decide to see a naturopath at Bastyr, even though I will have to pay out of pocket. Here's another (LONG) copy and paste from my other blog about the experience:

Ok, I finally broke down and went to see an ND at Bastyr yesterday (insurance doesn't cover it, so it's all out of pocket for me.) Was there for about 2 hours discussing our food issues with the student interns (you see them first, then consult with the doc at the end.) She came back in and gave me a prescription for 3 items, and told me the plan. The first thing was cod liver oil, which I said we couldn't do because DD has reacted to a fish oil and the fish I've eaten. I possibly forgot to tell them that during the conversation, but I did give them copies of all our allergy test results.

The other 2 items were: HLC High Potency Caps (super high strength probiotics), and astragalus glycerite. I specifically asked in the probiotics were allergen-free, and she said they were. I took 2 with dinner, and 2 dropperfulls of the astragalus.

Fast forward to bedtime.... DD wasn't sleeping very well- very restless, tossing and turning. From 11:00 to 2:00, she woke up 3 times SCREAMING... inconsolable. This hasn't happened for months. At first I thought maybe the probiotics were dairy derived, but can't find any info online... and then I looked up astragalus and found this:

Quote:

patients with allergies to members of the Leguminosae (pea) family may react to astragalus

Are you kidding me?!? I gave them a list of things that I have SEEN DD react to, and that list included green peas. And the only thing that came back on her RAST was peanuts. I am BEYOND PISSED.

****************************************************************
Well, last night I was pissed. I just got off the phone with Bastyr, and now I am LIVID.

I actually got to speak with the doc that we saw yesterday. Here are some snippets from our conversation:

me: I think DD reacted to one of the prescriptions you gave me yesterday. (I explain her symptoms)
doc: What do you think she's reacting to?
me: I don't know. That's why I'm calling you.
doc: Well, I don't think it's the probiotics. Maybe the astragalus.
me: I actually just looked it up, and saw that astragalus is part of the legume family. Is that true?
doc: The what family?
me: Legumes. Like peas.
doc: Oh, no. I don't think it is.
me: Well I just Googled it, and found a lot of websites that say that people can have a reaction to astragalus if they're allergic to legumes.
doc: No, I don't think so. Let me look it up. [pause] Oh yes, it is. You should probably stop taking that.

----
me: How about the probiotics? Are those dairy derived?
doc: I don't think so. I doubt they would be.
me: Is there any way to find out for sure?
doc: Well, I can call the dispensary or the manufacturer- they're in Redmond- and find out, but I'm sure they're fine.
me: That's ok- I will find their number and call them (I did call them and verified that there are no top-8 allergens used in the process for this product.)
----
doc: Well, it sounds like most of the symptoms are coming out through DD and not you. (NO SHIT. ) When did your symptoms subside?
me: I never had any symptoms that I noticed. This has always been about DD- she's the one with the symptoms.
doc: Yeah, you should definitely bring her in then.

She then suggests that I bring DD in tomorrow to see one of the pediatric specialists. BTW- I made the appt for me initially because everyone I've seen so far says that I'm the patient (not DD) because I'm eating the foods (including my initial Bastyr visit with their nutritionist.) So I spend almost 2 hours with the interns explaining this whole situation... and at the very end of our appt, the consultation with the doc, she tells me that they aren't allowed to treat more than one patient in a visit, so she really can't talk about DD's symptoms or treatment. We could only treat me, and I would have to come back for an appt under DD's name. Even though I made it VERY clear that DD was the one with the problem- I was just trying to get it under control through my diet.

I go on to explain that I'm really very upset that I was given a product that is related to foods that I very clearly stated that DD was allergic to. Her response: "Yeah, it sounds like she's allergic to a lot of things." I mean for F's sake- peanuts were the only thing that showed on her RAST!! What if it had been an anaphylactic reaction rather than just some screaming, itching and flared eczema last night?

So now, besides being pissed that I've just set back DD's healing- I spent $90 yesterday (that I can't afford) for NOTHING. And now I'm supposed to pay for another visit for DD? I don't think so. I tried to get in touch with the clinic manager, but they were out today, so I will call back on Monday.

The next day, any last doubts that I had about this being an allergic reaction were now gone when DD puked all over the floor. :( Then she took a 2 hour nap in the afternoon (usually about 30 minutes- so I knew something is going on...) and woke up screaming and inconsolable again. Big tears, arching her back, wouldn't nurse... obviously in a lot of pain. I just can't stand seeing her like that...

So not only am I back to square one (with nowhere to go and no one to help us), we've probably set back Jayden's healing (by causing this new reaction and resulting damage), and now I'm more depressed than I was before our ND visit.

Later update- I sent a letter to the clinic manager as well as the patient relations manager complaining about my visit, and more than a month later... I have gotten no response. I am highly recommending that people STAY AWAY from Bastyr!! I also complained that both times I saw someone at their clinic and had a followup question, I had to call multiple times before getting a return call (the second time I never did get a return call.)

Month 7

2008-07-04T11:30:00.001-07:00

April 2008

The elimination diet is not producing the results that I expected; the eczema continues to get worse. It's now crusty and oozing most of the time. DD seems to be reacting to the squash that I'm eating, even though I've been eating zucchini (same food family), and it's supposed to be one of the least allergenic vegetables... But I continue the diet, minus the yellow squash (I continue zucchini, as she seems fine with it.)

I start looking into leaky gut some more, and reading up on how we can help the healing process along. I'm still hopeful that with healing, DD can overcome these allergies. I'm also looking into alternative allergy testing, since the RAST done by the allergist showed nothing, and I KNOW without a doubt that DD is reacting to very specific foods in my diet. Some moms on the discussion board that frequent have mentioned the ELISA test, so I think we will try that out.

At some point this month, I ask the pediatrician to give us a referral to a pediatric gastroenterologist, since she has some blood in her poo. I want to make sure that everything is ok, and figure the GI doc can help us figure out what is going on in her gut and help us fix it. We have a Children's Hospital here in Seattle, and they have a GI department, so I thought that would be the best place to go. Our pediatrician agreed and sent the referral.

Here is what happened (I am just copying and pasting from a post I made on a discussion board):

If you've missed all my previous posts, some background: DD is showing allergies to milk, soy, eggs, beef, nuts, peas, and maybe fish. But with 2+ months of an ED, I finally have started seeing some improvement. Last week she was almost completely healed up- no spitting up, no eczema, no mucous/bloody poos, no raw/rashy butt, no gas, no screaming, and sleeping much better. Then I ate peas last week and she had a HUGE reaction. Each time she's had a reaction, her symptoms get progressively worse and this time she is showing a lot more blood in her poo. So I decided to get a referral to a pediatric gastroenterologist to make sure that everything is ok.

I just got the call back, and they are refusing to see DD unless I stop breastfeeding. What kind of medical professional would actually think this is a good idea? The nurse I spoke to said that DD is reacting to my breastmilk, and that I just need to stop BFing- even though I told her that I can control the symptoms through my diet, but I'm still trying to pinpoint all allergens so I wanted her to be seen just to be on the safe side.

After I said that formula absolutely wasn't an option, she said, "We all just want what's best for your daughter, and breastfeeding is what is making her sick so you need to look at other options. You don't want her to continue to bleed out, do you? I know that BFing is a special, bonding time for you, but there are other ways to have special time with her."

WTF?!?!? I agree that there is a component of BFing that is about the bonding, but what about all the lifelong health benefits? Does she think I'm just doing this for fun? That I've been exclusively BFing DD since birth- through the cracked and bleeding nipples, the clogged ducts, the mastitis- just for kicks?

I am just so completely broken down at this point... I've had a pediatrician look at me like I am making this whole thing up, an allergist who didn't want to hear anything except test results, and now a GI doctor telling me that I am continuing to harm my DD so I should just give up on BFing. And DD's insurance doesn't cover a naturopathic doctor, so that isn't an option.

BTW- this decision (to refuse our referral) came from Dr. Christie, head of the GI department at Children's Hospital in Seattle.

I can't believe how utterly misinformed and uneducated the medical field is in this area.

Month 6

2008-07-04T10:33:00.001-07:00

March 2008

The nurse from the allergy clinic called on March 6th to give us the results of Jayden's blood tests- all test were NEGATIVE, except a very slight positive reaction to peanuts. Ironic, because peanuts are about the only thing she hasn't reacted to, because I haven't eaten any! I have eaten a ton of almonds which she has reacted to, but the almond test was negative. I don't even know why we bothered... I just read (in the brochure that the ALLERGY DOCTOR gave me) that even positive results are correct only 20% of the time, especially on babies with eczema.

I continue the elimination diet... I try some new grains and decide that I can't stand amaranth, but quinoa is ok. By this point, DD's eczema has started to spread. It's still mostly on her forehead, but now there are spots popping up on her cheeks and chin. But they go away quickly every time I find another 'bad' food and take it out of my diet.

During this month, we go out to eat for my mom's birthday. This is the first time I've been out to eat since starting the elimination diet! Everything is good, until the next morning. While DD is eating, her face starts to flare up and get red and bumpy. I decide that it must have been the beef, so now beef is out of my diet too. I also check into my supplements (vitamins, calcium) and decide that I need to find some hypoallergenic ones. I also start taking probiotics (Solgar Advanced Acidolphilus Plus), as they are supposed to help with gut healing.

March 28 - I eat some sugar snap peas... DD reacts. I figure I better take all legumes out of my diet. There goes another source of protein. :(

Each of DD's food reactions seem to be getting progressively worse. Her green poos have turned mucusy, and I spot a few strands of what appears to be blood. We get a stool test done which confirms that it is blood. It is negative for bacteria (just in case the food allergies were all in my head, they tested for a bacterial cause for her poo issues...)

I decide to go on a TED (TOTAL elimination diet), which consists of: turkey, lamb, rice, millet, squash, pears, peaches, sea salt, and canola or safflower oil.

Month 5

2008-07-04T10:22:00.000-07:00

February 2008

I ate something that triggered DD's allergies again... but no idea what it was. DD has gone from sleeping 11 hours straight (in December) to waking every 45-90 minutes all night long. I finally figure out the culprit to be Chewy Spree (my favorite candy) after I read the ingredients and find albumin (egg white). Who would have thought to check candy for dairy, soy, or eggs?

Another symptom has popped up in the first weeks of February- the cradle cap is still horrid, but now DD has a dime-size spot of eczema on her forehead. The pediatrician has no idea what could be wrong, but at our urging gives us a referral to an allergist.

Meanwhile, I am furiously reading every book that I can find on the subject of babies with food allergies. I'm also going through a lot of depression, because not only has my life been turned upside-down by the arrival of a new baby, my diet has been turned upside-down and I can no longer eat many of my favorite foods.

I decide to see a nutritionist at Bastyr to help me figure out what I can eat. They put me on an elimination diet - no dairy, soy, eggs, wheat/gluten, peanuts, citrus, caffeine, food additives, potatoes, corn, tomatoes, peppers, refined sugars, chocolate... and the list goes on. They give me some ideas of different (gluten-free) grains to eat, like amaranth and quinoa. I start on the elimination diet right away.

The diet seems to be helping- DD's symptoms are improving. Then, at the end of the month suddenly they flare up again. I narrow it down to the almonds that I ate that day (the elimination diet does allow things like fish and nuts.. for some reason.) So I decide to take all nuts out of my diet too. Big bummer, as they are one of my few 'snack' foods left, and a good source of protein. A week or two later, it seems like DD reacts to the fish that I ate, so now fish are out as well.

But by the end of the month, things are looking pretty good, and suddenly the cradle cap is going away- all by itself!

February 29
Today was our appointment with Dr. Tatum and NW Asthma and Allergies. The appointment went horribly... I had been doing my research and questions for the doctor. Everything that I said (that I had read), she refuted. For example- she wanted to do a skin test. I said that I thought skin testing on babies with eczema wasn't a good idea, because their skin is already so reactive that it will give a lot of false positives (not to mention the risk of sensitization to new allergens). She said no, that's not true... then looked at DD's skin and said that she couldn't do the test on her. I'm like HELLO- didn't I just saw that?!? WHATEVER. Anyway, after waiting 3 weeks to get in to this stupid clinic and a 10-minute appointment, we left with nothing more than orders to get Jayden's blood drawn for a RAST and instructions on clearing up the eczema (No, not how to prevent the eczema by avoiding the allergens, but how to take care of the eczema.) So we drove immediately up to Children's Hospital and got that done. They send it off to the Mayo Clinic, and we have to wait 2 weeks to find out the results, which may or may not be accurate (from everything that I've read, allergy tests on babies aren't very reliable.)

The allergist also said she didn't understand why I was limiting my diet, even though I told her repeatedly that the symptoms seemed to correspond with what I was eating. I had brought pages and pages of my food journal with me, which she had no interest in seeing. She kept saying that DD just had eczema, there was nothing we could do except treat it topically, that it most likely wasn't related to anything in my diet- even though I said repeatedly that we had seen the eczema clear up COMPLETELY after taking foods out of my diet! The whole appointment was infuriating, and I swore never to go back to that office.

Month 4

2008-07-04T10:09:00.001-07:00

January 2008

The colic continues. Every night, we spend anywhere between 2-6 hours trying to get DD to sleep. Many nights she falls asleep in exhaustion around 3:00am after hours of screaming. She seems to be a little happier when she's upright, so we walk the house with her on my shoulder. Then when she falls asleep, I lay her down... and she is awake within 5 minutes, screaming.

She begins spitting up multiple times a day. Nothing projectile (usually), just a LOT of spit-up. It seems to come and go; some days she doesn't spit-up at all, some days it seems almost constant all day. Being a new mother, I have no idea that this might signal a problem (along with the colic)... and her pediatrician seems to think she's fine, so we continue our struggle with the puke and screaming.

January 9
I go to a weekly support group at Valley Medical Center (where DD was born) to get some socialization time for me and DD. At this week's meeting, another mom mentions that her son was really colicky and spit-up a lot, and her doctor told her to stop drinking milk. I thought, hmmm- that's weird. I read SO many books while pregnant, and some (older books) had mentioned certain foods that can make your baby cranky (later disproven), but none that said anything about milk in my diet while breastfeeding. But I thought it was worth a try... so the next day, I stopped drinking milk. I was still eating other forms of dairy though for a couple weeks.

Over the next week, DD's colic symptoms seems to get better! She is screaming less, and seems generally happier.

January 19
I decide that I need a milk replacement (so that I can eat cereal for breakfast), so I stock up on soy milk and start drinking it every day. DD's symptoms immediately get worse again. :(

I had also been eating a lot of eggs, and after researching I found that they can be an allergen for baby too... so I now decide to take all dairy, soy, and eggs out of my diet.

Things rapidly improve. Looking back at her symptoms, I realize that everything that she's been going through - the colic, screaming, green poos, cradle cap - can all be attributed to an allergic reaction! I'm glad that I'm finally figuring this out, but really frustrated and angry that the pediatrician hasn't picked up on any of these symptoms.

Month 3

2008-07-03T16:55:00.001-07:00

December 2007

The rash continues to get worse. We ask about it at her 2-month checkup and the doctor says it's probably just a diaper rash. Pretty soon, the spots are raw and inflamed, and look very painful. It looks as though the skin is just gone in spots. ouch!!

Also during her 2-month appointment, DD has her first (and only) full round of vaccines. THAT night, she has a huge smell, green poo. The green poos continue from that day forward...

Before this, DD has been just an angel baby- calm, low-maintenance, hardly ever cries, sleeps 11 hours straight at night in her own bed(!!). Some time this month (after the vaccines), she does a complete 180- she starts getting fussy, which escalates to hours of screaming every night. Everything that we had read said that usually the 'colicky' period for babies is almost over by this age, so it was confusing that she was just beginning to show these behaviors.

Around this time, DD suddenly gets a raging case of cradle cap. Thick, yellow, crusty over the whole top of her head. We try massaging oils into her scalp and using a brush to massage them in... nothing works.

Month 1

2008-07-03T10:24:00.000-07:00

October 2007 -

When DD (dear daughter) is just over 2 week old, and she has her first vaccine- the Hepatitis B vaccine that we originally declined in the hospital. We are still researching vaccines, but haven't made up our minds yet, so we cave to the pressure of the doctors and let her get the first shot.

Within the next week or two, DD develops a rash on her butt (just to the sides of her rectum) that won't go away. It's not a diaper rash... it just a few red spots that look irritated, and won't go away no matter how much rash cream we use or how much time she spends without a diaper on.

Pre-birth

2008-07-01T10:41:00.000-07:00

Some brief history (and my theory of how the food allergies came to be) -

Looking back, and knowing what I do now, all these factors seemed to play into our problem.

During pregnancy, I was on antibiotics twice due to sinus infections.

DD was 10 days late, and after 36 hours of labor and babe not moving past 0 station (not dropping into my birth canal), I ended up with an unplanned c-section. I was also given numerous rounds of antibiotics during labor, because my temperature was "a little high".

I believe that the abx given to me during pregnancy were just too much for my immune system to handle, and I developed leaky gut (check out the Leaky Gut link for more info.) Probably my past history of abx and NSAID use, along with an unhealthy diet and alcohol use years prior probably made me a little predisposed to this problem. At this point, I think my body started reacting to foods that I was eating, but I didn't have symptoms strong enough for me to notice (or maybe I just thought they were pregnancy symptoms).

Because of the c-section, DD never traveled through the birth canal and picked up the initial bacteria that babies need to colonize their gut (GI tract). Also, because I received abx during labor, she started her days drinking abx-laced colostrum/milk, so that would have killed off any bacteria in her gut that she did manage to get. I believe these things left her gut exposed to damage (babies guts are naturally leaky, so that the breastmilk can pass through quickly), and since 70% of your immune system is located in your gut (Digestive Wellness), this meant that her immune system just couldn't handle what it should have.

(Being predisposed to gut damage, the later vaccines that DD was given overloaded her immune system, and she started reacting to the foods that were coming through my breastmilk.)

Our Story

2008-05-08T10:45:00.000-07:00

This is a long one... so get a cup of coffee and relax before you start reading. :) It starts WAY down the page (or possibly on the next page) at the "Pre-Birth" post, and will continue as long as I have new information to add to it!

This is our personal story of how we discovered, managed, and (hopefully) made it through our struggle with food allergies/intolerances.