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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Enterolab Test Results
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So, below are my results and I can happily say that I finally have an answer... Well, sort of. From the interpretation, it appears that I am producing anti-bodies so I should go on a strict gluten free diet. Also, my body has not received any damage from gluten and is still absorbing nutrients. Am I correct? Now I am curious if I should even bother going to my MD with these results and ask for additional tests for Celiac Disease. Should I even bother?

Additional notes: I have a suspected autoimmune condition called Vitiligo and I suffer from chronic constipation. I'm wondering if maybe I have a Fungal overgrowth and/or bacterial overgrowth of some type that may be causing an anti-body reaction (Candida, H.Pylori, etc...). Any type of digestive stress and/or dysfunction would logically cause me to have problems digesting a protein such as gluten. Anyone that would like to comment should because I would appreciate many perspectives :). Thanks!

Kenneth D. Fine, M.D.

Medical Director

10875 Plano Rd., Suite 123 Dallas, Texas 75238

Final Laboratory Report

Date: 6/16/2010

Name: Kline, Kameron

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA 19 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 7 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow

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Correct. Your Elab results indicate nonceliac (intestinal damage) gluten sensitivity. So you need to abstain from gluten to prevent further damage somewhere in your body. Gluten sensitivity reactions could cause your constipation. You also might have other undiagnosed allergies which cause constipation. Not everyone gets diarrhea from allergy reactions. My usual reaction is constipation.

Also consider getting a stool test for bacterial dysbiosis. You may have deficient good bacteria or even an overgrowth (infection) of bad (even pathogenic) bacteria, parasites or candida (fungus). Candida classically causes constipation. However, I initially reacted to 5 different bacteria and 2 different parasites (as well as candida) with constipation.

SUE

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Yes, you should ask for standard celiac bloodwork from your doctor if your insurance covers it before going off gluten. Enterolab is not a substitute for a proper celiac panel. You need to be sure you don't have anti-endomysial antibodies, or anti-tTG antibodies in your blood, which would indicate a clear need to go off gluten permanently.

Your serotype is DQ6 and DQ9. As your test results note, neither of those are really associated with celiac disease. That's actually really good news. Having only anti-gliadin IgA is not necessarily a clear-cut result either. Enterolab is the only place that recommends a permanent gluten-free diet based only on fecal anti-gliadin IgA, and it seems to be a very extreme stance that is not supported in the scientific literature. It would be more compelling if you had a celiac allele, because then the anti-gliadin IgA might be an early sign of autoimmune gluten reactivity in your intestine.

Here is a study showing that the anti-gliadin IgA by itself doesn't mean much.

http://www.ncbi.nlm.nih.gov/pubmed/16607144

By the way, you might find it interesting that your DQB1*0303 allele is linked to the gene for vitiligo in people of Chinese ancestry.

http://en.wikipedia.org/wiki/HLA-DQ9

Once you have a celiac panel done, the positive anti-gliadin IgA is a decent reason to at least try a gluten-free diet and see if it helps. Tests are not nearly as good as listening to your body.

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I would say, don't bother. You wouldn't ask your doctor before going vegetarian, so why do it to go gluten-free?

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Your serotype is DQ6 and DQ9. As your test results note, neither of those are really associated with celiac disease. That's actually really good news.

As someone who is a double DQ9 I can say from personal experience that it can have devestating effects on the body and brain when combined with gluten. That gene is not to be taken lightly IMHO. If you read my signature the reason I say that is obvious.

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As someone who is a double DQ9 I can say from personal experience that it can have devestating effects on the body and brain when combined with gluten. That gene is not to be taken lightly IMHO. If you read my signature the reason I say that is obvious.

I forgot about your DQ9! I wonder what the mechanism of DQ9 celiac is. The structural biology studies that are so compelling are on DQ2, and DQ8 is structurally similar enough that the pathway to celiac is fairly clear.

Hmmm... There is some real science I could possibly do there... You've just inspired me to do a little research.

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I forgot about your DQ9! I wonder what the mechanism of DQ9 celiac is. The structural biology studies that are so compelling are on DQ2, and DQ8 is structurally similar enough that the pathway to celiac is fairly clear.

Hmmm... There is some real science I could possibly do there... You've just inspired me to do a little research.

Finding that our lead me to a lot of research also. It was how I found out it is linked to RA which was no surprise to me since my arthritis has been in remission now for many years. Since many RA patients are also diagnosed with IBS it makes me wonder how many are suffering needlessly and taking toxic meds like I was prescribed that they wouldn't need gluten free.

It also made me very angry because since my DD does not carry DQ2 or DQ8 she was told she could never be celiac and she is now back on gluten. She had been diagnosed by both positive blood test and biopsy but since she is an RN and my child I of course can't tell her anything. LOL I hope someday she realizes her need for the diet before as our GI told her after her diagnosis 'she ends up just like me' on the gluten diet.

I should note that most of the research I found was done in Europe, the Middle East and Asia since it is an uncommon gene, or thought to be, in the US caucasian population and found in rather technical medical journals. I unfortunately had a computer crash and lost all my saved links but hopefully you will be able to find some info.

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Bummer about the computer crash. I'm sure I can find what I need if I know there is some info out there. I mostly read biological and medical journals for information so "technical" is not a problem. (To me they are not technical. Scary, huh? :lol: )

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Just pointing out that this was done in silico, which doesn't mean it's wrong, it just hasn't been tested biologically.

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Just pointing out that this was done in silico, which doesn't mean it's wrong, it just hasn't been tested biologically.

Pointing out to whom? It says so in the abstract. *looks confused*

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DQ9 is common in Japan, and DQ2 uncommon.

Now DQ9 differs from DQ8 by just one base I think and therefore can present gliadin kinda like DQ2 or DQ8 can.

Even DQ7 is a celiac gene in Sicily, and there is research on that too, and how it does it structure-wise.

About gliadin, this is very important re. neuro issues with gluten, just google hadjivassiliou and you get explanation about the significance of antigliadin antibodies, AND DQ1 (DQ6 and DQ5 are DQ1, and DQ1 was the old name before they could discriminate between them)

Another thing to google regarding the significance of antigliadin, is Ford Gluten, you get to Dr. Fords website where he explains the significance of the antigliadin test.

You know gluten intolerance is NOT a gut issue, it is an immune issue, and has got a lot to do with the brain.

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To people just reading the thread that don't look at the link.

Gotcha! B) I'll put a wee bit more detail in the thread next time. I was excited to find something that fast on DQ9. I haven't had time to chase down whether DQ9 got put into an in vivo system to validate those computational models. I don't think it's been crystallized like DQ2 and gliadin.

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Here is one article that says DQ7 (beta 0301 and 0304) and DQ5 (beta 0501) have been found in celiacs:

http://www.clinchem.org/cgi/content/full/44/8/1755 note the conclusion is different from what we read out of the article......researchers probably are not allowed to publish they found other genes in celiacs.

another thread about non-typical genes and celiac

yes, I found the link to THE article about DQ9 in the above thread:

http://intimm.oxfordjournals.org/cgi/content/full/12/8/1157

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Gotcha! B) I'll put a wee bit more detail in the thread next time.

:) Thanks. We're working on making this an excellent forum, not just a great one and links and explanations go a long way towards that.

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Here is one article that says DQ7 (beta 0301 and 0304) and DQ5 (beta 0501) have been found in celiacs:

http://www.clinchem.org/cgi/content/full/44/8/1755 note the conclusion is different from what we read out of the article......researchers probably are not allowed to publish they found other genes in celiacs.

Allowed by whom? I get very upset when people say things like that because it impugns the integrity of scientific work. Studies are a lot of work, and getting journal articles through the peer review process is even more so. This comment reads as if there is some imaginary council of overlords controlling what scientists can and cannot publish. I assure you that this is not the case. Individual journal editorial boards absolutely have bias, but you can always eventually find a journal that will take a well designed study. With Pubmed indexing and the Internet, even low impact factor journals are useful.

I don't agree with you that their conclusion is different from the data. The researchers are testing the hypothesis that their rapid genetic test for DQA10501/DQB10201 (DQ2.5) can be used as a laboratory diagnostic marker to help find people who are celiac. Their conclusion shows that their hypothesis was correct, and that DQ2.5 has some predictive value. They don't rule out other alleles, and even present an association of DQ7 with celiac disease.

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Skylark I hear you, but I speak for myself I am double DQ5 and they actually use the gene test for DQ2 and DQ8 to absolutely exclude a celiac diagnosis for the likes of me.

I even have DH, and my migraines stopped after stopping gluten, and I had to double thyroid hormones because of malabsorption, and then go back on the original thyroid hormone dose after the gut got more normal, and so on.

I am in Norway, where Sollid and Lundin have gotten a lot of gluten about how the DQ2 works re. celiac, so they do not want to hear anyting about other genes here. I was even tested at their lab.

I ahve been on thyrod forums for ages, and read the research, and it is all rigged to get the results they wanted in the first place. Example: they postulate that t3 is ineffective, so they give some subjects some t3 AFTER reducing the dose of the t4 so the TSH gets even higher, and the free t3 and the free t4 gets lower than before, and conclude it was ineffective. They did such things in several studies. Jorde in Norway did a similar thing, they screened the whole population in Tromso for undiagnosed male hypos then they gave them t4 in small doses and noone got a TSH lower than 2,5, and they did not improve, so t4 to subclinical hypos was ineffective. Go figure, they wer all grossly underdosed. TSH should go to 1 or lower before anythign happens, everyone knows that.

Again: they use the gene test to rule out celiac.

(my back hurts this morning and I am a bit cranky, this will pass)

Nora

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I'm so sorry to hear you had a bad experience getting your celiac diagnosed. I think a lot of us are angry around here, me included. I had diagnoses of food allergies, gastritis, borderline anemia, IBS, and depression, all of which resolved when I stopped eating gluten. No doctor I saw even suggested I be tested for celiac.

I looked at Sollid and Lundin's articles and they do seem to suffer from some tunnel vision about celiac alleles. I see why you wrote what you did. Please don't extend your very legitimate anger over bad experiences to all scientists. Some of us try really hard to stay objective (and even spend time on message boards trying to be helpful as we look for a little company and emotional support).

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skylark, I am not cranky today, and my back does not hurt, and I have been in the garden doing some gardening, and managed to get the flowers planted in the pots (urns) that are supposed to sit around the porch here. Nice.

Thank you for your answer.

What science do you do?

Lundin is the expert connected with the norwegian celiac society and he says wheat starch is okay for celiacs, but other doctors in Norway shudder at the thought of wheat starch.

I cannot eat most gluten-free items here, since most are based on wheat starch.

I guess DQ2 celiacs with mostly symptoms in the gut tolerate wheat starch, whereas we who have DH and DQ1 (which have gluten intolerance in the rest of the body, including the CNS) are very sensitive.

I have yet to test the new gluten-free wheatstarch that they have started to make in accordance to the new rules, it is below 20ppm. I will try it and post here some day.

I do find it interesting that there are two kinds of celiacs, those that tolerate some ppm gluten, and those that are very sensitive. There is little talk about that.

I also tolerate oats (gluten-free oats) and some percent of celiacs do not.

Nora

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I do find it interesting that there are two kinds of celiacs, those that tolerate some ppm gluten, and those that are very sensitive. There is little talk about that.

I find that very interesting too. I'd love to hear what the experts have to say about it.

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Nora, I'm not going to talk about exactly what science I do because I have spoken so openly about my bipolar illness here. It's very important to me to spread my story of gluten-related bipolar illness in case I might help someone else who is suffering the way I did. Bipolar illness carries a tremendous stigma and job interviewers regularly Google search people.

I have a Ph.D. and most of my work these days is computational. I am studying a protein that might be involved in Lupus, and another that is involved in cancer. I come here sometimes while my computer is chugging away. I did about ten years of laboratory biochemistry, and I've done some clinical trials statistics as well.

As for the gluten tolerance, there is a classic study on Codex wheat starch where they fed it to 17 celiacs for a year. Nobody in the study became positive for anti-gliadin IgG or IgA. Two had no symptoms at all, and four others had only mild symptoms with a little occasional diarrhea. The other eleven had fatigue, GI trouble, DH outbreaks and other discomfort. Only the two people without symptoms wanted to keep eating the stuff at the end of the study.

http://www.ncbi.nlm.nih.gov/pubmed/9183321

Maki did a recent study where he biopsied a random series of celiacs and DH patients, most of whom were eating Codex wheat starch products regularly. Only those celiacs who admitted to cheating with normal bread had villous damage. There were six in his group of 52 who didn't eat any wheat starch products and instead chose to follow a naturally gluten free diet. Nobody eating the Codex starch showed villous damage, which is good. In the conclusion he writes "However, we agree that there will always be some patients who require a naturally gluten free diet to remain symptom-free." In this cohort, that was 11% of the people.

http://www.ncbi.nlm.nih.gov/pubmed/10192194

So, even in the studies scientists see a range of sensitivity and it's not correlated to mucosal damage.

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The old wheat starch many years ago had 200 or more ppm, so they did find some damage according to the canadian celiac society webpage.

I believe tehre is another study showing damage from wheat starch, I will have to mail someone privately to get that one.

me, I get DH and I throw up from wheat starch, but I do not try it often. Several people on the orwegian forum never got better, or their antibodies stayed high, while eating codex wheat starch. One person had to stop eating other grains and starches before the antibodies went down. (that is interesting, since there was a huge outcry about a newspaper reporter who wrote about something similar, that some have to stop corn too, on another forum and tey even wrote to the publisher to stop spreading nonsense, yet we had someone with a similar experience here)

So there are a very few patietns who must eat even stricter before their antibodies go down.

I must say 17 people is a small trial.

Interestng about the 11%, we had stipulated the percentage to be around that, like 15%.

Mäki is interesting, http://www.ncbi.nlm.nih.gov/pubmed?term=%22M%C3%A4ki%20M%22[Author]

they have wheat starch in Finland as far as I know, and i found out they have that in Poland too.

I was there last week-end and got some DH from the rolls. There was very very little gluten in them, though otherwise my intestines would have felt like barb wire in them.

The celiacs here actually want the wheat starch.

nora

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As someone who is a double DQ9 I can say from personal experience that it can have devestating effects on the body and brain when combined with gluten. That gene is not to be taken lightly IMHO. If you read my signature the reason I say that is obvious.

This is very interesting. I am a researcher working on celiac disease in Norway. I have recently published a paper suggesting that DQ9 seems to predispose for celiac disease, based on studies from one single patient. Obviously investigation of more patients would be useful to confirm this association and how celiac disease manifests in this rare patient group.

Best regards,

Michael

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It seems this thread has gotten away a bit from the OP's question.

My advice, if you can, is get a celiac blood panel done while you are eating gluten. Expect it to be negative, but do it anyway.

Then, go gluten-free. Ipersonally feel no one is benefiting by eating it!

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