A Question About Gluten Intolerance V. Celiac

[emcmaster]

I've not been formally diagnosed. I had a colonoscopy & endoscopy in July 2005, but the doctor said he didn't find anything. I went gluten-free as a last resort to heal my pain in April '06.

My question: Is it possible that there wasn't enough damage done when my doctor did the tests? Does gluten intolerance (because I'm positive I have at least that, if not celiac) do damage to the villi as well? Is it possible my doctor missed it?

Thanks

[CarlaB]

It is possible your doctor missed it. The blood tests and biopsy can prove you have celiac but cannot rule it out. Dietary response is the best indicator. The current tests only can pick up celiac when it is relatively progressed -- the intestine is already damaged badly. Even then it can miss the damage as every square inch of intestine is not necessarily affected ... they can take the biopsy from a healthy spot. If you stopped eating gluten and got healthy, you need to be gluten-free. Whether it's celiac or gluten intolerance is only a matter of semantics. Technically speaking, since they found no damage in me (I was already gluten-free and did an inadequate gluten challenge), I'm gluten intolerant. However, my symptoms are those of a so-called classic celiac and I have autoimmune antibodies, so the gluten is doing more damage than just causing me discomfort.

[oceangirl]

It is possible your doctor missed it. The blood tests and biopsy can prove you have celiac but cannot rule it out. Dietary response is the best indicator. The current tests only can pick up celiac when it is relatively progressed -- the intestine is already damaged badly. Even then it can miss the damage as every square inch of intestine is not necessarily affected ... they can take the biopsy from a healthy spot. If you stopped eating gluten and got healthy, you need to be gluten-free. Whether it's celiac or gluten intolerance is only a matter of semantics. Technically speaking, since they found no damage in me (I was already gluten-free and did an inadequate gluten challenge), I'm gluten intolerant. However, my symptoms are those of a so-called classic celiac and I have autoimmune antibodies, so the gluten is doing more damage than just causing me discomfort.

Hi, Elizabeth!

I had an endo and colonoscopy after being mostly gluten-free for 3 months and they were negative. I, too, did a gluten challenge, but lasted only three days as the pain was so severe I almost went to the hospital. I was "diagnosed" by Enterolab as "having two genes for gluten intolerance." (same as Carla- DQ1,1 subtypes 5, 6) No one can convince me that gluten is not damaging to me. My list of symptoms prior to giving up gluten has twenty things on it. I am still not great, but at least 3/4 of those symptoms are gone.

Good luck and feel well.

lisa

[emcmaster]

Thanks Carla and Lisa!

I have autoimmune thyroiditis/hypothyroidism, which was diagnosed when I was in high school. I hadn't had my thyroid tested in a while when I tested last fall. The tests came back that my antibody levels were in the 600's (from what I understand, normal is 35 or lower). Do you think this is a cause/effect of the celiac/gluten intolerance? Both of my parents have hypothyroidism.

[oceangirl]

Thanks Carla and Lisa!

I have autoimmune thyroiditis/hypothyroidism, which was diagnosed when I was in high school. I hadn't had my thyroid tested in a while when I tested last fall. The tests came back that my antibody levels were in the 600's (from what I understand, normal is 35 or lower). Do you think this is a cause/effect of the celiac/gluten intolerance? Both of my parents have hypothyroidism.

Elizabeth,

Ooh, I don't know but it seems there have been people on here talking about their thyroid issues. Do you have a knowledgable celiac/intolerance doctor? It seems you should check with a doctor. Sorry I'm not more help- maybe someone else will post.

lisa

[emcmaster]

Elizabeth,

Ooh, I don't know but it seems there have been people on here talking about their thyroid issues. Do you have a knowledgable celiac/intolerance doctor? It seems you should check with a doctor. Sorry I'm not more help- maybe someone else will post.

lisa

I don't have a knowledgable doctor right now, but I'm looking around for one. I'm going to see another thyroid specialist next week, and I'll definitely ask him, too.

Thanks for all your help, Lisa!

Elizabeth

[melie]

Hey Elizabeth,

I do not have a 'formal' celiac diagnosis from the med. community, but one from Enterolab, and that combined with my response to the diet told me all I needed to know. It is very possible a healthy spot was biopsied, and if you had a blood test too, false negatives are very real. I also have autoimmune thyroiditis which was diagnosed 8 years before the celiac, and they are strongly correlated one to another. IE, it is recommended if you have thyroiditis, you should also get checked for celiac. I don't know which one came first though, if the celiac 'leaky gut' thing somehow triggers another autoimmune response or the other way around? I am still pretty new to all this...

Melie

[Aerin328]

Elizabeth,

Not sure about the thyroid issue but as Carla articulated an endoscopy can definitely miss celiac disease damage. Go to Enterolab if you need test results: www.enterolab.com . Otherwise try going gluten-free for a few months and the results on your health should be proof enough.

Good luck!

Christian