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 13

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!!


InTheDesert said...

I came over here from MDC- looking for some answers for my son's (MILD in comparison to your dd's) eczema/symptoms and all I can is wow!

You are doing such a great job- your journey sounds exhausting and I just wanted to say well done for sticking it out and not just switching her to formula.
Your commitment is admirable.

I will be checking in regularly to see how you and your dd are going.

Jill said...

I am so tempted to drink formula myself! How has it turned out? My 6 mo old has mucous and blood no matter what I eat or don't eat. I tried sweet potato baby food yesterday with a major mucous episode this morning. Grrrr.....

Jessica said...

Yikes- I guess I never did finish that story... The E028 trial went down in flames. :( It was a delayed reaction, but after drinking it for a couple weeks, DD started showing very obvious reactions. And it couldn't have been from anything else, because I wasn't eating anything else! So after further investigation, I discovered that the orange-pineapple flavor (the one I was drinking) DOES in fact have corn syrup solids. I thought it didn't... so I'm assuming that's what she was reacting to. But it really could have been any of the other nasty chemicals/over-processed foods in the formula.

Laura said...

I just found your blog & I've been reading your story. I have a support group for moms of kids with food allergies in the L.A. area. I'd love to talk/exchange ideas if you're interested.

Jessica said...

Sure Laura- I'd be happy to chat. I don't like to publish my email address to the blog though, so if you want you can leave a comment with your email (I won't publish it on the site.)