Research Advances May Help Prevent And Improve Diagnosis Of Celiac Disease

[pricklypear1971]

Very interesting.

Specifically the section about dx criteria.

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[Skylark]

Yeah, that's Maki's big prospective study I keep mentioning when people who have antibodies and a negative biopsy want to ignore it and keep eating gluten. There was a pretty convincing metabolomics study published after that article was written that also supports the hypothesis that people who are EMA-positive with negative biopsy are still celiac. Unfortunately EMA is being phased out in favor of TTG and DGP (for good reasons) and a prospective TTG or DGP study hasn't been done yet.

[pricklypear1971]

I give up, really.

I'm not giving up on my health or gluten-free, but I am giving up on thinking about getting a dx.

I've been going around in circles wondering if I should get this "very light" new rash (DH) biopsied.

I've pretty much arrived at "no", because if it comes up negative I'm going to join the ranks of "tested but negative" and quite frankly that will just make me angry.

I KNOW gluten is playing a major part in that rash...it's the ONLY THING I'VE CHANGED. My theory is there's less iga in my skin now, so the rash was minimal and well controlled with iodone withdrawal. Normally I'd have penny-sized oozing sores. Now I have pinprick sized. I'm 5 months gluten-free and it can take up to 2 years to completely clear DH.

I'd be insane not to think gluten is an issue.

I'm just going to get my son tested and see where it goes....

I do know if he's positive on blood I'm researching where to get the scope and it will be a university hospital. That article a few days back about community hospitals and labs having lower dx rates made me mad. I wonder why the dx rates are better at university hospitals??

Maybe I'm just in an angry phase???

[pricklypear1971]

Ok, so I've obviously spent my day reading stuff...

But here's one thing I noticed about "gluten sensitive" vs. "Celiac".

You get the label of "sensitive" if you don't have "intestinal damage". But intestinal damage CAN be present - the person reading the test can determine it isn't enough to qualify as Celiac.

So, when you read articles saying "sensitives" don't have intestinal damage, that may be incorrect. They may not have enough damage.

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[Skylark]

Agreed that correct reading of biopsies is an issue in published research. In fairness, the full text papers usually state the diagnostic criteria for biopsies. You need to look up Fasano's stuff, though. He makes a big distinction between gluten intolerance and celiac disease.

[Gemini]

Ok, so I've obviously spent my day reading stuff...

But here's one thing I noticed about "gluten sensitive" vs. "Celiac".

You get the label of "sensitive" if you don't have "intestinal damage". But intestinal damage CAN be present - the person reading the test can determine it isn't enough to qualify as Celiac.

So, when you read articles saying "sensitives" don't have intestinal damage, that may be incorrect. They may not have enough damage.

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You'll never convince me that having gluten sensitivity "only" does not lead to intestinal damage. My husband is presenting EXACTLY the same way I did and I am a confirmed by diagnosis, full blown Celiac. He has always had low body weight, was losing weight until he went gluten free and tried to have blood work done but the doctor screwed the panel up and he's not going to start eating gluten again for an official diagnosis. He did test positive for a double DQ-1, which is sensitivity. You don't lose weight like he did if your small intestine isn't compromised.

Sensitivity or full blown Celiac doesn't matter....you need to dump the gluten!

[Skylark]

You'll never convince me that having gluten sensitivity "only" does not lead to intestinal damage. My husband is presenting EXACTLY the same way I did and I am a confirmed by diagnosis, full blown Celiac. He has always had low body weight, was losing weight until he went gluten free and tried to have blood work done but the doctor screwed the panel up and he's not going to start eating gluten again for an official diagnosis. He did test positive for a double DQ-1, which is sensitivity. You don't lose weight like he did if your small intestine isn't compromised.

Sensitivity or full blown Celiac doesn't matter....you need to dump the gluten!

You can't assume your husband is not celiac based only on genetics. There are people with DQ1 and biopsy-confirmed celiac disease.

[U Gluten Free]

But here's one thing I noticed about "gluten sensitive" vs. "Celiac".

You get the label of "sensitive" if you don't have "intestinal damage". But intestinal damage CAN be present - the person reading the test can determine it isn't enough to qualify as Celiac.

So, when you read articles saying "sensitives" don't have intestinal damage, that may be incorrect. They may not have enough damage.

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Yes, unfortunately, celiac disease is diagnosed once there is substantial intestinal damage. This leaves a number of individuals with less damage and only mild inflammation in a grey area. In my opinion, since there are a large number of genes involved in celiac disease risk (beyond HLA types), it seems plausible that celiac disease is more of a family of related conditions, with varying risks and triggers.

There has been a lot of talk about the prevalence of "gluten-sensitivity", but since there is no consensus on exactly what this is, and there is no positive diagnosis, it's not surprising that different people throw around estimates of 0.5%, 6% or 30% of the population. Unfortunately, I think that this adds to the confusion about gluten intolerance.

Surprisingly, there is almost no published research on this topic.

[Skylark]

As I mentioned, Fasano is doing the nicest work. There are also some interesting in-vitro studies on innate immunity and gliadin peptides.