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. :)

Months 21-24

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!!


Anonymous said...

Hey thanks for the great info. just realizing DS (18mos.) has food allergies and starting ED.

In case you aren't aware Salmon often is dyed pink, though I do believe that most wild is clear of it....might be a possible cause

Nicole Marie said...

Is it possible that a flooded apartment could be the cause of some of the rashes? Mold/mildew?

Jessica said...

We actually had moved out of the flooded apartment by this time. But she did show some extra skin sensitivity while we were still there.

Mommy Bee said...

Some brief notes on salmon (stuff I never learned until I got to Alaska!)

First of all, there are four kinds of salmon, and each has multiple names (they also each have different oil content, and live in slightly different areas, although I still can't taste the difference between them in a blind taste test, but I know people who can):
In descending order from 'best'/most expensive to 'poorest'
king/chinook salmon
silver/coho salmon
red/sockeye/copper river salmon

I don't know a ton, I'm no fisherman, but one thing I do know is that up here almost nobody eats pink. It's rarely sought, and usually used for bait if it's caught. We lived next to a river where they spawned, and I can tell you that as they swim upriver they literally rot--chunks of flesh fall off before they even die. It's astoundingly gross. So you can't catch/eat these guys once they start swimming upriver because they're already rotting. So they would have to be caught out at sea, which of course they can do, but imo part of the reason people like to catch the salmon as they swim upstream is that the only ones who make it to spawn are the biggest/strongest/healthiest fish. *shrug*
Anyway, the fact of their being so different from the other salmons might be why the pink caused a reaction. I would try king or silver again before deciding (we like silver and red best).

Anyway, I hope maybe that helps a little!

Jessica said...

Thanks Mommy Bee for that info. Very interesting! I did find out later that the pink was caught in Puget Sound, rather than Alaska like all the other fish this company sells. (Had I known that, I wouldn't have bought it!) But we did get DD skin tested not long after this, and she was positive for salmon... so I guess it just took a few exposures before her reactions were obvious to us.