U Of C, Irvine Celiac Study

[chrissy]

we got the first set of paperwork from the celiac study we are involved in through the university of california, irvine. no one else in the family has developed celiac disease since our original tests almost a year ago---but the tests confirmed what we knew---that our girls have celiac disease even without positive biopsies.

i had a long discussion with the woman over the study about genes and testing. they do not feel that dr. fine's tests are accurate since they have never been reproduced by a third party. she said that they cannot accept anyone into the study that has been diagnosed by enterolab. she said that besides DQ2 and DQ8, they feel that there is a third gene involved with celiac which would probably account for biopsy-proven celiacs with out the 2 main genes. she said they have about 8 people involved in the study that fall into that category. they don't recognize gluten intolerant genes----does anyone know how dr. fine has come to the conclusion that so many genes are gluten intolerant genes----especially since no one else in the world recognizes these? also, i only questioned the validity of fecal testing, and she knew exactly what i was referring to---she was the first to mention dr. fine.

we will be getting the results of the gene testing on our family eventually---they just take a little longer to get done.

[trents]

Why do you say that you already knew that your girls have celiac disease, despite negative biopsies? My understanding is that the positive biopsy has always been the gold standard of celiac diagnosis. Do your girls have other symptoms that you have definitely connected to gluten consumption?

Steve

[Rachel--24]

Why do you say that you already knew that your girls have celiac disease, despite negative biopsies? My understanding is that the positive biopsy has always been the gold standard of celiac diagnosis. Do your girls have other symptoms that you have definitely connected to gluten consumption?

Steve

Celiac Disease can be diagnosed on positive bloodwork alone. Especially if there is noticeable improvement when going gluten-free....the diagnosis is Celiac Disease. Biopsies are hit and miss....not very reliable. A positive biopsy = Celiac...but a negative biopsy does NOT rule it out.

[trents]

My understanding from what my GI doc told me and what I have read is that it is the other way around. That is, the presence of positive antibodies from the blood work is not necessarily conclusive since there can be false positives - and that - the definition of Celiac disease is villous atrophy in the small bowel caused by autoimmune reaction to gluten over time. Until then, it is just a potential condition.

Chrissy, how old are your girls? Is it possible there just hasn't been enough time for the villous atrophy to show up?

Steve

[tarnalberry]

I haven't ever actually had a doctor, research study, or even random website *specifically* say what a positive anti-gliadin antibody test (either IgA or IgG) could possibly be for, other than gluten intolerance, and there isn't really any recognized gluten intolerance outside of celiac disease by the mainstream medical community. While it's true that the tTg antibody tests can have false positives, this tends to be the case primarily in patients that have other autoimmune conditions, and is highly dependent upon the choice of assay. It's not enough to say "it has a high false positive rate, so a positive doesn't tell you anything."

The biopsy is losing favor as the end-all, be-all of testing. While it is true that Celiac has been classically defined as "a particular extent of villious atrophy, caused by gluten", doctors are starting to say 'oh, hey, maybe you shouldn't have to be really sick for us to say that you've got something wrong' and are looking at indicators ahead of time, before there can be significant villious atrophy. If you want to stick to the strict classic terminology, you'd have to then call anyone without significant villious atrophy, but who could it due to gluten, celiac-prone or something else equally hair-splitting.

[Nantzie]

What I was told was that the damage to the intestines is very patchy. Picture spattering paint on a wall. And then blindfolding yourself and trying to take samples of only the paint areas. That is why a person can have a negative biopsy (non-celiac) but still might have damage to their intestines.

There are also people like me, who have negative blood tests as well as negative biopsy, but have dramatic and life-changing improvement when going gluten-free.

There seems to be several gluten-related problems. Celiac (positive biopsy) seems to be only one of a larger group of problems.

Before I went gluten-free, I had all the classic GI issues to the point where I was pretty much house-bound. I also had painful neurological issues to the point where I was on my way to a wheelchair. If I hadn't found out about gluten-related issues, my next doctors appt would have been to discuss how I get a handicapped placard for my car, as well as how to get a Lark-type scooter. My pain and mobility issues were so bad that it took me a couple hours to do some limited grocery shopping and I'd have to use the grocery cart as a walker.

All of it went away after I went gluten-free. ALL of it. It was like somebody flipped a switch.

My regular doctor and my GI doctor both told me that they had several other patients who had negative blood and negative biopsy (therefore not celiac) who happened to try the gluten-free diet for whatever reason and had "immediate and life-changing improvement" on the gluten-free diet. Both my regular doctor and my GI doctor have told me that they now recommend that people who come in wondering about celiac, no matter the resulst of testing, try the gluten-free diet just to see what happens. Sometimes, people who have negative testing, just happen to have amazing results.

Call it what you want. But when I eat gluten I can't walk. And that's not acceptable to me. Or to my kids.

At this point, to me and to my doctors. Biopsy-positive celiac or not biopsy-positive celiac is just splitting hairs. If you feel better gluten-free to the point where you're willing to put up with the inconvenience, the cost and the headache of the gluten-free diet... Then you belong on the gluten-free diet.

Nobody would go through all of this without having specific and definite life experience telling them that this is the best thing for them.

Nancy

[pixiegirl]

Well now that Celiac is being diagnosed more readily I'm sure the medical communtiy will grapple with how and when to say who has it and who doesn't.

For me the Gold Standard was the diet. I never heard of Celiac but due to all my GI issues my Dr. tested for it. Immediately after taking the test I went gluten free and in 2 days I felt wonderful, my runs of 11 years were gone, so was the stomach ache, the itching, I felt like a new person. Imagine my surprise when the Dr. called me a week later to tell me the blood test was normal.

I told him how every symptom I had was virtually gone and he said its in your head you do not have Celiac disease. I found a new doctor.

I did have Dr.Fine's testing done a year or so later and it did turn out positive, but I knew that, because my gold standard was the diet. Its just been so obvious if I accidentially eat gluten I'm sick, when I don't I'm better, that seems pretty golden to me.

Susan

[Guest nini]

I was dx'ed on bloodwork alone since it was SO HIGHLY POSITIVE it was the only thing it could have been... My Dr. said that the biopsy was just redundant at that point. Anyone who is clinging to the "biopsy as gold standard" of dx methodology is sadly missing the point, the larger picture of gluten intolerance. Celiac is just one small piece of the puzzle when it comes to Gluten Intolerance and villous atrophy ONLY occurs in the final stages of the disease (when it is LIFE THREATENING) do we want everyone to continue to consume gluten until they test positive with a biopsy and have potentially irreversible neurological and autoimmune disorders? Or do we want to be proactive and get them off gluten when the bloodwork indicates a serious problem and then is confirmed with positive dietary response?

[chrissy]

steve, we actually discovered our girls had celiac by chance. one of my twins had been sick and had had a biopsy for reflux---but continued to be sick after treating the esophageal thrush that we discovered---we didn't even suspect celiac. while we continued to test for other things on her, i took her twin sister to the allergist because of some rashes she had. i had read about dermatitis herpetiformis and knew her rashes looked suspicious. the allergist ordered a celiac screen which came back positive---the only test we got back was the EMA. our ped gi did a scope and biopsies and discovered she also had reflux esophagitis----the biopsies did not show villious atrophy, but they did show an increase of intraepithelial lymphocytes in one area (which would be seen with celiac). we were going to leave her on gluten for 3 months and retest to see what her antibody levels were doing. in the meantime, we tested several other family members because i knew it was genetic. when 2 more of my girls came up with positive TTg tests---the ped gi said to put them gluten free---he did not biopsy my 10 year old. from what i understand, positive TTg tests are 97% accurate at diagnosing celiac disease. when i asked the doc about my girls not having any intestinal damage, he told me that with their test numbers, they probably did have damage. the small intestine is about 22 feet long and the scope can only go about 6 feet into the intestine.

since going gluten free, kassie's nausea has gone away and tianna's rashes have improved----molly never had any symptoms that were obvious. all three girls have had their TTg levels drop to either normal or almost normal on the gluten free diet, depending on how strict they have followed it.

crohns disease can raise antigliadin antibodies.

my twins are 15 and molly is 11. they were diagnosed last december.

[trents]

I certainly agree with those of you who point out that gluten intolerance can have many facets and that one of them MAY NOT BE villous atrophy. That is exactly my point. If it's not damaging the mucosa of the small bowel, we shouldn't call it celiac disease. Historically, the terms sprue and celiac were applied to villous atrophy in the small bowel caused by an autoimmune reaction to gluten. A matter of semantics? I guess you could say that.

Steve

[zansu]

no Steve, they're not saying it hasn't damaged the small intestine, they're saying the biopsy did not find/confirm it. There are 22 feet of samll intestine, the scope used for my biopsy only went into the duodenum. and he randomly chose a spot to biopsy. So, unless ALL the villi in the small intestine were damaged, or until we get a mechanism to scope the entire small intestine, there's a distinct possibility that people with intestinal damage will continue to have negative biopsies.

I had 4 polyps removed from by colon. If they only looked at a third of the colon and hadn't found them would that have meant I was clean? No. It would have meant they didn't find anything.

[Guest nini]

Steve, it also doesn't mean that if people with these other symptoms continued to eat gluten they wouldn't have villous atrophy... my point is if they have the overall propensity to be intolerant to gluten, the likelihood of eventually developing full blown villous atrophy if they continue to eat gluten is much higher and wouldn't it be stupid to tell someone (or shall I say irresponsible) that they can without any shadow of doubt continue to eat gluten just because they don't currently show villous atrophy, despite other indications to Celiac and gluten intolerance?

No, not all gluten intolerance is Celiac, but I betcha a vast majority of gluten intoleance that currently is thought to not be Celiac, WILL eventually develop into full blown villous atrophy if the individual continues to follow ignorant Dr.s advice and continue to consume gluten just because they did not have a positive biopsy BUT DID HAVE POSITIVE BLOODWORK or positive dietary response.

[Nancym]

celiac disease is much more than just villious atrophy. Those are just the people where the antibodies are attacking in the intestestines. Since it can attack any organ in the body, you might have celiac disease and never have any villious atrophy.

[trents]

Thanks for the clarification nini and zansu. What you said makes sense to me since it does not separate celiac disease from villous atrophy.

Steve

[Generic]

I was diagnosed 19 years ago, there was no blood test back then. I had 2 biopsies and they were both "inconclusive". I had ALL the classic symtoms of a celiac. I was litterally dyeing from malnutrition and the other side effects of celiac. We did the gluten challenge and it almost killed me. My pediatrician Dr. said there was no doubt what so ever that I had celiac. Like it was said there is over 20 feet of intestines, and if they randomly choose a section it can give false negatives or inconclusive results.

-Laurie