Is Gluten Intolerance Stage One Of Celiac Disease?

[CCM]

I called the Celiac Hotline at the Univ of Chicago to ask about a study I saw described on Celiac Disease Research Center that is examining whether gluten intolerance should be considered a precursor to celiac disease rather than an independent condition.

What do folks on this forum know of this? I am guessing I am gluten intolerant (and dairy) because my blood test, and biopsy were negative, as were food allergy tests. Yet a gluten filled diet has been doing horrible things for me for years. So I am transitioning to a gluten-free diet.

I am wondering whether confirmed celiacs here went through a separate distinct phase of gluten intolerance that just got worse over time? Worse enough to be diagnosed as celiac?

Should I be concerned about the potential for long term health effects from untreated (or undiagnosed gluten intolerance) as someone with a confirmed case of celiac disease may be concerned about increased cancer risks, etc.?

Does anyone know how many people are gluten intolerant as opposed to celiac? I would think that more public education on the issue would lead to more cases of gluten intolerance.

Univ of Chicago seemed to have more celiac research posted on its website than other centers. Any good referrals to the latest research, especially on gluten intolerance vs. celiac disease?

[Jodie2DQ2]

I have been wanting to ask the same question...as I was only tested for celiac after I was already gluten free and was negative. However my allergist did genetic testing and I have double DQ2 which is about the worst genetics for celiac from what I have learned. It is amazing to me that I can't say I have celiac disease....but I can't even eat one bite without my stomach feeling like a bomb went off inside. It seems to me that you are gluten intolerant until you have done enough damage to your intestines for the test to be positive. It does not matter anymore as I would not go back on gluten for any testing..I get too sick from the accidental glutenings as it is. Great post though. I will be interested to see the responses. Jodie

[dbmamaz]

Thats an interesting question . . i know people here have talked about a genetic test that shows which of 2 celiac genes you carry, and i guess if you have an intolerance and carry one of those genes, you could be likely to develop celiac. I havent seen any numbers for how many people who are negative for celiac but positive for food trials have the gene, that would be interesting.

[HAK1031]

I know that both my brother and I have violent reactions to gluten, yet our bloodwork and his biopsy were clear. I didn't have a biopsy, however. I had the genetics test and I have the DQ2 allele, so my GI feels I am likely celiac or at least "pre-celiac" as he called it. I was only seriously ill for a few months before diagnosis, though I have had scattered symptoms all my life.

[CCM]

I noticed you are from CT. I grew up there and will be heading back this summer to visit family, the first time visiting on a gluten-free diet. Are there any active local groups there (preferably in the New Haven area) that I could get in touch with regarding places to shop for food, restaurants, etc.? I am trying to get as much info on gluten intolerance/celiac as I can before I head out because it would not surprise me if some other members of the family have this problem.

[HAK1031]

I'm not from near New Haven, but I think I do remember hearing about support groups around there. I'm in the Greater Hartford area, and as of yet there's no support group near me. But I found this website: Open Original Shared Link

good luck!

[HAK1031]

ok i guess this site won't let you post other sites...but google it. PS- I totally lied about there not being a group in my area. after 5 seconds of googling i found one right in my TOWN!! on this website no less!!

[trents]

Your question points not only to the fact that the state of the research and understanding of gluten-related disease is in flux but so is the terminology. It's getting more complicated all the time. The one thing that is becoming clearer to me is that gluten-containing grains (or at least their modern hybrids) may not be good for anybody and they are very bad for a certain percentage of the population.

Steve

[Tim-n-VA]

Is there a standard medical definition of "gluten intolerance"?

I've seen the term used here to cover a variety of situations some of which are probably pre- or early celiac.

[hathor]

I don't think there is a standard medical definition of gluten intolerance because the condition isn't even generally accepted. I think once there is an accepted test, the definition and the good statistics will follow.

I've heard 30% of the population. I've heard 10%. I've heard four to five times the number of people with celiac. Hard to tell. I believe Dr. Fine found that roughly 30% of the population gets a positive score on his tests. I don't know where these other folks' figures come from -- perhaps their own practices.

I think quite a bit of gluten intolerance is preceliac. But then there are people who react to gluten, not in their villi, but elsewhere in their bodies.

My position is that you shouldn't eat anything that makes you feel bad, whether the doctors have a name or test for your condition or not. Remember the doctors, with the then available testing and their accepted medical definition, used to think that celiac was very rare and presented nearly always in infants who had certain symptoms. Now that view is accepted as wrong. But the disease hasn't changed any.

[CCM]

I think quite a bit of gluten intolerance is preceliac. But then there are people who react to gluten, not in their villi, but elsewhere in their bodies.

Thanks for the feedback. I am guessing I could fall into that category of folks whose gluten intolerance reactions occur elsewhere than their villi. I deal with excessive gas intestinally, but that's it. The rest is my joints, bones, muscles, mood, reproductive tract, as well as fatigue and brain fog (so bad that I now finally understand why I was unable to complete graduate school).

I feel like my brain is finally starting to wake up now that I am going gluten-free.

[Rosebud710]

This is an interesting topic . . . when I tell people I can't eat gluten, some will ask if I'm celiac. This is where I'm sure I confuse them. Since I don't have immediate, digestive disturbances when I eat gluten, I never consider myself celiac. But I've learned (from this forum) that that's not the case. From what I've learned, based on the condition of my villi is how you determine celiac disease. Well, the only test I've had to determine my gluten intolerance is an antibodies test my doctor requested from my blood work. My antibodies were high, therefore, my body was fighting something and my doctor recommended I stop eating gluten. Well, since I've stopped eating gluten, I'm more healthier, my panic attacks have dramatically lessened (that could also be from me cutting caffeine out of my diet), and the bloating and gas has ended. I'm still at a loss as to whether I have an intolerance or if I have celiac.

In the meantime, I'm avoiding the confusion in the explanation of my dietary limitations. Whenever someone asks me if I'm celiac, I now say "yes, I am". It's just easier.

[Nancym]

Don't bother getting technical with people who ask, they're usually not really interested in a detailed answer and they're likely to think you're a hypochondriac if you explain that you're not a celiac but... Just leave it at "yes, I'm a celiac" or for the people that really are clueless tell them you're allergic to wheat, barley, rye and oats.