Hi, my name is...

[Guest guest]

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