Is This Diagnosis Accurate

[Leeloff]

I went to the celiac center at Jefferson in Philadelphia today and I have to question their analysis. I want to run it by the group here and get some opinions.

I tested positive for a gluten sensitivity via a test from Cyrex labs. I've been eating gluten-free for 4 months now and feel slightly better. Less gassy, more energy. But nothing earth shattering. The reason I was tested and decided to go gluten-free was because of sleep issues I've had for 15 years. Nothing else has worked, so after the blood test showed I was sensitive, I went gluten-free. Despite felling better in general, being gluten-free has not improved my sleep issues at all.

So, I went to the celiac center to show them my positive bloodwork showing I had a gluten allergy. I don't think I have celiac, but why not ask the experts. From my symptoms they didnt think I have celiac either, but want to test via endoscopy as well as do bloodwork for the genetic markers for celiac.

The Dr. said that if the genetic markers come back negative, I will never get celiac. Fine, I'm not predisposed to it. Here's where I have qestions. She also said that if its negative, and I do have a gluten sensitivity/intolerance that eating gluten will do no long term damage. Those who are sensitive/intolerent have short term reactions (headaches, gas, bowel issues) but that there is no long term damage.

That doesn't sound right to me. From what I've read there are few long term studies on gluten sensitivity and the long term health implications. How can seh definitively say there are no long term effects? Isnt is safer to not eat gluten and play it safe until we have further information from long term studies?

Any thoughts?

[Skysmom03]

People who have celiac disease who continue to eat gluten do have a chance of having long term effects of the gluten damaging their system. Non celiac people have a sensitivity to gluten but it does not damage the intestines as the gluten does with a celiac. Celiac disease is an autoimmune response to gluten. It sees it s an enemy and therefore has an adverse reaction on the intestines.

[mushroom]

I would respectfully point out that there are also diagnosed celiacs who have no intestinal damage, in whom the gluten has reacted upon their brains causing among other things migraines and gluten ataia, and in whom it has reacted on their skins causing dermatitis herpetiformis. Some unfortunates have all three reactions, but some only one.

Since up until a couple of years ago (or less) nobody had ever studied those gluten intolerants who did not have intestinal damage (they were told they could eat all the gluten they wanted because they did not have celiac disease), I believe the jury is still out (or the case is being retried, if you will) as to whether gluten intolerants suffer any other adverse damage from gluten. The unfortunate part about medical science is that what was seemingly irrefutably true yesterday may no longer be true tomorrow. It is going to be really interesting when these new studies come out.

[tom]

...

The Dr. said that if the genetic markers come back negative, I will never get celiac. Fine, I'm not predisposed to it. Here's where I have qestions. She also said that if its negative, and I do have a gluten sensitivity/intolerance that eating gluten will do no long term damage.

...

I'm with you on this one Leeloff - there's no way for her to really know this.

And also, the Dr's genetic comment is wrong. US just using 2 genes, while I've seen talk of 8 or 9 found to be involved so far, and have seen ppl here say that in Europe they already use more than the 2 we look for.

We have a few members here neg on the 2 genes but pos through testing .. .I think .. .details fuzzy right now ....

Anyway, I'd call it short-sighted & premature to definitively claim ANYTHING about long-term effects of gluten on NCGI folks.

[Leeloff]

Thanks everyone. Based on the way I feel after being gluten-free, I will probably still maintain a gluten-free lifestyle even if I come back negative for celiac. I just don't think there is enough long term data out there to say that someone with gluten sensitivity/intolerence can eat gluten with no long term impact. I'd rather play it safe. And as much as I support medicine and doctors, the best proof is how my body feels. Being gluten-free has helped

[cavernio]

"I would respectfully point out that there are also diagnosed celiacs who have no intestinal damage, in whom the gluten has reacted upon their brains causing among other things migraines and gluten ataia, and in whom it has reacted on their skins causing dermatitis herpetiformis."

I don't believe it's celiac disease then? Yes, this is purely semantics I'm talking about. It makes sense to me to categorize things as much as possible, if there are differences. (Not like 'gluten sensitivity' is any better in explaining things, we should just call it what is it, 'gluten-induced intestinal damage' or 'gluten induced migraines and nausea', etc.)

Reading about gluten ataxia reminds me of reading the studies that show that Alzheimers might just be insulin resistance in some brain cells. Is it diabetes if the pancreas isn't involved?

If you haven't found studies that show long-term impact of eating gluten for a gluten sensitive individual is negligible, or not immediately reversed or stopped or some such, then absolutely the person should not have said there is no long-term impact. I mean an answer like 'we haven't studied that, however at this point we don't know of any long-term or irreversible effects' would be minimal. But even then, it doesn't make much sense to me that continual use/eating of somethign that causes immediate bad effects would not, at some point, start to cause more longterm problems.

From mushroom's post I wanted to read about gluten ataxia (haven't before yet) and the first hit in google for gluten ataxia talks about current research that looks like it may have even found the why of it, and it really does look like a 'celiac disease of the brain', which of course involves different cells which, in the worst case, may not grow aknew or regenerate as easily as villi do.

[shadowicewolf]

I'm one of those without signs in the intestines. I only had one of the blood tests come back positive and the genetic test.

As you can tell with my sig, i have other issues. I have noticed that i am doing much much better since the dx. I can sit still for a little bit, i can pay attention in class, no more "IBS" crud, my GERD is under control, my weight has stabilized and i'm still sort of loosing, and my knees have been doing better (right now as i type this the badder one of the two is throbing ). I also had major issues with absorbtion of calcium when i was a child. It caused the heel on my left food to grow jagged (was not fun to have a foot wrapped for month(s)). It eventually did what it was supposed to but still.

The thing is, the doctors just don't know. Celiac has sooo many symptoms and whathave yous that its kinda impossible to have a set example (this is what it is, etc).

[GFinDC]

There is a recent study confirming the existence of 2 forms of NCGI. They call it non-celiac wheat sensitivity in the study. The study does not show any conclusions about possible long term effects of the conditions. It did identify 2 possible forms of the condition, one with more severe symptoms similar to celiac disease, and one with less obvious symptoms. Where did your doctor get her information? It is not known at this point what long term effects these 2 new conditions may cause,

http://www.celiac.co...ists/Page1.html