Welcome to my blog!

This blog is a journal of our struggles with food allergies and eosinophilic gastrointestinal diseases (EGIDs). ("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 trying to investigate, diagnose, treat, or live with, food allergies and EGIDs. 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 8

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:
  • ME
    • 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:
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.)

1 comment:

Jessica said...

Haha... the things you learn in 2 years. I was just glancing through some old posts, and ran across this one. As soon as I read "astragalus glycerite" I said, "aha!" Glycerite is often derived from corn, which we've since determined to be another one of DD's IgE allergens. No wonder she had such a violent reaction to this stuff- both a legume-family plant AND a corn derivative. Good grief.