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Need Clarification

sore joints

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sore joints Apprentice
sore joints
Posted

O.K. probably another stupid question but I'm still just not getting it! Since I'm still waiting to see a GI (14 mth wait) I can't ask anyone else. Everyone on this board has been so helpful. Sorry though for another question.

If someone is gluten sensitive and does NOT stay off of gluten, could they potentially become celiac due to damage being done to the small intestine? Is being gluten sensitive as serious as being celiac?

Any responses are greatly appreciated.

Alison

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lovegrov Collaborator
lovegrov
Posted

I'm not an expert in this area but some who ARE experts believe that gluten sensitivity or intolerance is just an early stage of celiac. However, I don't think anyone has absolute proof that everybody who is gluten sensitive goes on to celiac.

richard

jayhawkmom Enthusiast
jayhawkmom
Posted

My GI said the same thing. It's not always the case... but he said that in many instances, going on a gluten free diet after realizing gluten sensitivity, can prevent Celiac if one has the genes and predisposition.

happygirl Collaborator
happygirl
Posted

Right now, I don't think that we know enough about gluten yet. I think for *some* people, it could be the case (as in the case of those who have the genes). For others, I do think it can be entirely separate.

The other thing to think about is that sometimes people who don't think that they have Celiac, but think they are gluten sensitive, are actually Celiacs, but the testing did not catch it. (or, it could be the other way: they could be Celiac and didn't get tested).

As you can see, there are many possibilities out there. Its hard to say if it is one continuous spectrum, two specific problems, or both.

However, if you don't have the gene(s), you have a very low chance of having actual Celiac (1-2% of Celiacs don't have HLA DQ2 or HLA DQ8).

GlutenWrangler Contributor
GlutenWrangler
Posted

People with gluten sensitivity can develop celiac disease. My genes dictate that I should only be gluten-sensitive, but I have celiac disease. 1% of the diagnosed celiacs don't have the two main genes. I know that one celiac researcher is trying to eliminate the word celiac disease from medical vocabulary and just have gluten-sensitivity all-encompassing. The main point is the celiacs and non-celiac gluten sensitives cannot tolerate gluten.

-Brian

tarnalberry Community Regular
tarnalberry
Posted

Mainstream medical science just doesn't really know, unfortunately. There isn't even much recognition of non-celiac gluten sensitivity. My feeling is *yes*, that it just means that you're aware of the effects on your body before there's much damage to the intestines, but what any one doctor will say on the subject...

darlindeb25 Collaborator
darlindeb25
Posted

I agree with Richard and Tiffany. There isn't enough known yet about celiac disease. I feel it's similiar to diabetes. You can be pre-diabetic, then actually be diabetic. First you are gluten sensitive and develope into full blown celiac disease. The treatment is the same for both, either one, you must be gluten free. I think they are advancing in knowledge, I do believe that some people have certain genes, yet I also feel they may not know enough as of yet about genes.

Some people heal completely, some do not, doctors do not no why or why not.

I think it is great that finally it is being diagnosed and the word is getting out there. If my sister had not been diagnosed with it, I wonder where I would be right now. Her husband researched and researched on the internet to find anything that would help her. One doctor called her a walking dead and still didn't go any further than to tell her that she was depleted of vitamins. She was on weekly, 3 hr. iron iv's for over a month when Steve finally found an answer. She had to insist that her doctor check her villi and he still just kept saying she could not be celiac. He was wrong.

I think we are forcing doctor to see this disease for what it is finally. I also feel the name should remain "celiac disease", it is getting recognizable now.

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