RE: Hi, my name is...Isaiah: a quick response

[Guest guest]

If you go to Google and enter "gluten challenge autoimmune trigger", you'll find some references to this problem. My internet connection is poor tonight, so I would find it difficult to reference specific sites.

H.

In a message dated 10/24/06 10:56:25 PM, pknewbury@... writes:

I have heard research that has shown that gluten challenges do sometimes trigger associated autoimmune diseases (sadly, when I tried to find that study for a reference later I could not find it, so I can't site the specifics).

[Guest guest]

Hi Isaiah,

Just a couple of comments in regards to the gluten challenge and the soy and dairy allergy.

I am not a doctor and this is not medical advice. I am just passing along some info I have read and some experiences of other celiacs I have known. I have known two people who have done gluten challenges where they ate a certain amount of wheat on their doctor's orders in order to confirm the diagnosis. They both were very sick during the challenge, but stuck with it because the doctor told them so. One is still sick and barely functional years after; the other got Hashimoto's Thyroid disease. I have heard research that has shown that gluten challenges do sometimes trigger associated autoimmune diseases (sadly, when I tried to find that study for a reference later I could not find it, so I can't site the specifics). I have known others who did gluten challenges with few symptoms or problems. My observation is that the ones who were most sick during the challenge had the worst outcomes.

On an encouraging note, I have known many celiacs who were soy- and dairy-sensitive who were able to eat those foods again after a few years on the GF diet. These allergies are often caused by the permeability of the celiac's damaged gut and damage to the villi. Unlike the celiac disease, they may not be permanent allergies.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: [mailto: ]On Behalf Of Isaiah Sent: Sunday, October 08, 2006 12:52 AM Subject: [ ] Hi, my name is...

Hi. My name is Isaiah. And since people usually assume I'm male because of my name, I should probably mention I'm a woman ;-P (Yeah, another girl with a boys name). I am 25 and I live in North Oakland. I'm originally from New York but moved out here 6 years ago. I made the mistake of going GF *before* I went to the GI doc or got any tests done. I had great results from the GF diet (the urgent D after every meal stopped, the bloating and gas and heartburn decreased, the migratory parasthesias and other neurological stuff improved, etc). The doc said "the proof is in the pudding" but that I should still get tested. Well, by the time he ordered the blood test I'd been completely GF for 2 months (wheat-free for longer). He also seems very misinformed about CD, in that he told me I did NOT need to be eating gluten in order to take the blood test... I now know this is wrong.So, instead of getting the blood test I got tested by Enterolab (a controversial method, I'm aware) which showed that I have gluten intolerance, casein and soy intolerance, and that I have one Celiac gene, one Gluten Intolerance gene. I thought that would be a good start and would be more accurate since I'd been GF for a while.The problem is, now that I have these results from Enterolab there's part of me that wants a straight, medically accepted definitive answer about whether I have CD. So... I tried to go on a gluten challenge. BIG MISTAKE. I got so sick I couldn't even make it 24 hours on the gluten challenge! And this was with only 1-2 servings of gluten a day (less than the recommended 3 for a gluten challenge).So I'm not sure what to do at this point. It's clear that a gluten challenge is just not worth the sickness and discomfort and pain. But if I don't do the challenge, I won't get accurate blood test or biopsy results. Which means I may go the rest of my life not being taken seriously by the medical establishment as having CD or even a gluten intolerance. The only "proof" I have is the symptoms I had (which are consistent with CD) and the unambiguously positive response to the GF diet. I think I can accept that as enough information for now, but I still fear being dismissed by doctors and sometimes wonder if I should deal with being sick for 3 months for the challenge in order to get accurate an accurate blood test & biopsy.I've been fully GF since 7/06 (after having been wheat-free on and off for a few years prior). I now also know that dairy (casein) and soy are making me sick but I have a hard time accepting this and dealing with the fact that I need to eliminate them from my already-strict diet. But I've cut back on dairy and soy a lot and maybe one day I'll have the self-discipline to go all the way. One thing at a time.One positive thing about this change of lifestyle is that it's gotten me really excited about cookign again, out of necessity. Though I do eat out sometimes (Ajanta and Socca Oven, both in Berkeley, are faves) I do tons of cooking for myself now and have learned to make a GF version of almost everything... About to start working on creating GF knishes, which should be quite a project. I'm also way more conscious of what I'm putting in my body and how it makes me feel, which I think is a good thing even though it can be depressing and limiting at times.I really appreciate the support of this list, it's such a great resource.Isaiah