gluten challenge

[Guest guest]

I was diagnosed about 2 years ago with celiac disease, and I was also

misdiagnosed for about a year because of a false negative blood test.

This blood test was WHILE eating gluten. When everything else pointed

to celiac disease I fault my doctor and also myself for not thinking,

is this test 100% accurate? An important thing to learn from this is

YOU DO NOT HAVE TO BE EATING GLUTEN FOR A BLOOD TEST. If it's not

definitive anyway, why go back on a diet that's helping you?? Several

people thought about this and mentioned this " gluten challenge " before

on this group. I had never heard of it until then, and I had been to

2 Stanford conferences (i did miss this year unfortunately, even tho I

paid for it) So if everything points to Celiac disease, maybe that

should be enough for you. Maybe you are better off without the

CLOSEST THING TO DEFINITIVE ENDOSCOPY TEST. If your doctors seem

clueless, screw 'em and go somewhere else. Or if you like them, you

take the lead and be informative and assertive about what you think is

happening with your body. If you really want something more concrete

for diagnosis then get an endoscopy, that's " the test " . The idea of

eating gluten and feeling sick for 3 months for a blood test is

RIDICULOUS. I cannot believe people have been urged to do this making

them sick and developing other illnesses. That is tragic. You know,

now I think I remember them mentioning this at Stanford 2 years ago,

and it was the model for diagosis developed around 1970. So lots of

MDs still REALLY need to be reeducated. Anyway, keep in mind that if

you have CD, you may also have some other allergies or sensitivities

that affect you (that's where I'm at). Just keep paying attention,

read, read some more, and enjoy all those gluten free snacks

Best of luck,

Naren

On 10/24/06, Newbury <pknewbury@...> wrote:

>

>

> 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

>