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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?  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
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kaygato

My Enterolab Results

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I finally got my results back.

The results of my gene test were:

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic eqivalent: HLA-DQ 3,3 (Subtype 8,7)

My fecal IgA was positive for gluten and eggs.

I'm curious about the gene stuff. Can someone who is smarter than me tell me what it means?

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I finally got my results back.

The results of my gene test were:

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic eqivalent: HLA-DQ 3,3 (Subtype 8,7)

My fecal IgA was positive for gluten and eggs.

I'm curious about the gene stuff. Can someone who is smarter than me tell me what it means?

Usually Enterolab results include an interpretation and recommendations. What did Elab say about your results? If you paid money for those tests, you may just as well trust their interpretation and recommendations.

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I did read what it means. It said that I have one of the main genes that predisposes to gluten sensitivity and celiac sprue. It also said I have a non-celiac gene predisposing to gluten sensitivity.

I guess I was just curious if anyone knew more about the specific genes I have, but it doesn't matter too much.

This might be a stupid question...but why exactly do I feel so bad when my results don't look very serious? My anti-gliadin IgA is 14 units (normal is <10). And my anti-ovalbumin Iga is at 17 units (normal range is less than 10 units). I probably shpuld be glad that it's not serious yet, but it feels really serious to me. My symptoms are primarily mental (I've had brain fog and depressive ADD since as long as I can remember), and around punerty I became nervous, brain fog increased, and I pretty much lost enjoyment of everything. It's made life hard for me for the last 5-7 years.

I guess I was wondering if there is any other testing I should look into? I read somewhere on here that having low total IgA can give the IgA results a false negative. I've just felt off for so long. Should I look into IgG testing for gluten as well? I want a definitive diagnosis if gluten is a problem for me.

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I did read what it means. It said that I have one of the main genes that predisposes to gluten sensitivity and celiac sprue. It also said I have a non-celiac gene predisposing to gluten sensitivity.

I guess I was just curious if anyone knew more about the specific genes I have, but it doesn't matter too much.

u have a DQ8 and a DQ7. (that's their simply subtype name- which i understand better).

the DQ8 is a Celiac-specific gene, doesnt necessarily mean u will have Celiac- but you definitely have a gene for it, so it's possible. (DQ2 is the other "specific" gene).

your DQ7 is a "Gluten sensitive" gene... predisposes u to gluten sensitivity or intolerance. **but keep in mind, this is still just the tip of the iceberg. in Europe they are already diagnosing Celiacs who do not have the DQ2 or DQ8, but the other numbers - perhaps even a DQ7.

thats all i know... it's been a while since i paid attention on here, and understand the fecal tests at Enterolab.

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I did read what it means. It said that I have one of the main genes that predisposes to gluten sensitivity and celiac sprue. It also said I have a non-celiac gene predisposing to gluten sensitivity.

I guess I was just curious if anyone knew more about the specific genes I have, but it doesn't matter too much.

This might be a stupid question...but why exactly do I feel so bad when my results don't look very serious? My anti-gliadin IgA is 14 units (normal is <10). And my anti-ovalbumin Iga is at 17 units (normal range is less than 10 units). I probably shpuld be glad that it's not serious yet, but it feels really serious to me. My symptoms are primarily mental (I've had brain fog and depressive ADD since as long as I can remember), and around punerty I became nervous, brain fog increased, and I pretty much lost enjoyment of everything. It's made life hard for me for the last 5-7 years.

I guess I was wondering if there is any other testing I should look into? I read somewhere on here that having low total IgA can give the IgA results a false negative. I've just felt off for so long. Should I look into IgG testing for gluten as well? I want a definitive diagnosis if gluten is a problem for me.

Enterolab testing is not particularly reliable. Fine's own data show that the test is not very predictive of how you will feel gluten-free. You have borderline results on a borderline test.

Assuming you've had a celiac panel blood test through your doctor, the definitive test is to go off gluten and see how you feel. The celiac panel should have included total IgA and if you are low, the IgG versions of anti-TTG and probably anti-gliadin. Anti-gliadin is older, but preferable if your problems are primarily neurological/mental. As far as non-celiac gluten intolerance, there is no diagnostic test other than eliminating gluten from your diet and then challenging later. You need to abandon your search for a piece of paper that tells you what to do and simply trust your body and how you feel. There is nothing more definitive than recovering your health off gluten.

You have the DQ8 (DQB1*0302) gene, which is associated with celiac. It does give some reason why you might be gluten intolerant. DQ7 (DQB1*0301) is an interesting one, as you can sometimes have the celiac gene, DQA1*0505 with it. Problem is, Enterolab only tests B subunits and not A and the non-celiac DQA1*0303 is also reasonably common with DQ7. There is no way for you to know without a more detailed genetic analysis. It's not worth wasting money, as the genetic tests are in no way diagnostic; they only asses risk.

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Enterolab testing is not particularly reliable. Fine's own data show that the test is not very predictive of how you will feel gluten-free. You have borderline results on a borderline test.

Assuming you've had a celiac panel blood test through your doctor, the definitive test is to go off gluten and see how you feel. The celiac panel should have included total IgA and if you are low, the IgG versions of anti-TTG and probably anti-gliadin. Anti-gliadin is older, but preferable if your problems are primarily neurological/mental. As far as non-celiac gluten intolerance, there is no diagnostic test other than eliminating gluten from your diet and then challenging later. You need to abandon your search for a piece of paper that tells you what to do and simply trust your body and how you feel. There is nothing more definitive than recovering your health off gluten.

You have the DQ8 (DQB1*0302) gene, which is associated with celiac. It does give some reason why you might be gluten intolerant. DQ7 (DQB1*0301) is an interesting one, as you can sometimes have the celiac gene, DQA1*0505 with it. Problem is, Enterolab only tests B subunits and not A and the non-celiac DQA1*0303 is also reasonably common with DQ7. There is no way for you to know without a more detailed genetic analysis. It's not worth wasting money, as the genetic tests are in no way diagnostic; they only asses risk.

We have a lot in common. I'm also taking the EmpowerPlus supplement. Although it's expensive, I'll probably only try one bottle. I also have hashimoto's but my Frees are still in the normal range. I'm curious if I have thyroglobulin antibodies as well, since I have a great aunt who had graves and got a thyroidectomy in her 50's. I know I should just bit the bullet and try gluten-free. I'm planning on doing it in the near future. I never had the Celiac panel done. I'm hoping my doctor could order it.

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We have a lot in common. I'm also taking the EmpowerPlus supplement. Although it's expensive, I'll probably only try one bottle. I also have hashimoto's but my Frees are still in the normal range. I'm curious if I have thyroglobulin antibodies as well, since I have a great aunt who had graves and got a thyroidectomy in her 50's. I know I should just bit the bullet and try gluten-free. I'm planning on doing it in the near future. I never had the Celiac panel done. I'm hoping my doctor could order it.

Your doctor can order it. Don't go gluten-free until you've had the bloodwork. I'd be surprised if it comes up positive with the low Enterolab results though. Just remember that you can be very sick from gluten without much in the way of antibodies. In some people it has a natural inflammatory action that causes a lot of havoc.

I'm sorry to say, but most people can't evaluate EMPowerPlus with one bottle. If you're trying to treat bipolar, you need to be on the loading dose (15/day) for three months to really get an idea of whether EMPowerPlus works for you. You also may go through a time of feeling worse before you feel better. TrueHope will explain all this if you talk to someone at the call center, and they carry the probiotics, free aminos, phosphatidyl serine, and mild yeast treatments that help you get through the rough spots. I started on it in mid-June, and all hell broke loose in July with detox and yeast. I started to improve overall in August, and I finally felt really good with normal mood in September. I understand the cost issues, but you just can't get an idea in two weeks, especially if you are taking it below the loading dose.

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Enterolab testing is not particularly reliable. Fine's own data show that the test is not very predictive of how you will feel gluten-free. You have borderline results on a borderline test.

What research tells you that? I didn't think there was any research that predicts how you will feel after gluten free. "How you feel" is very subjective. Changes in intestinal villae and presence of gluten antibodies and/or Ttg antibodies are measureable. "How you feel" (except by psychological battery) isn't measurable.

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What research tells you that? I didn't think there was any research that predicts how you will feel after gluten free. "How you feel" is very subjective. Changes in intestinal villae and presence of gluten antibodies and/or Ttg antibodies are measureable. "How you feel" (except by psychological battery) isn't measurable.

It's right on his website. Perhaps you should take a look?

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It's right on his website.

Now I'm confused ... I agree that Elab's stool test doesn't predict how you feel after going gluten free. However, I don't believe ANY test (blood test, endoscopy, etc.) can predict how you will feel after abstaining from gluten. "How you feel" is subjective. Also, people (like me) may have other allergies (or intolerances) or even gastrointestinal infections from bacteria, parasites and/or candida, which can affect how they feel. I went through many tests and treatments before my IBS symptoms completely resolved. Gluten free was just the first step for me. Nevertheless, Elab tests show the presence of gluten and Ttg antibodies, which is similar to standard blood tests, which show antibodies. For many people, who don't want to return to eating gluten just so they can damage their intestines enough to let gluten antibodies leak into their blood stream, Elab stool tests are a viable, noninvasive alternative.

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Now I'm confused ... I agree that Elab's stool test doesn't predict how you feel after going gluten free. However, I don't believe ANY test (blood test, endoscopy, etc.) can predict how you will feel after abstaining from gluten. "How you feel" is subjective. Also, people (like me) may have other allergies (or intolerances) or even gastrointestinal infections from bacteria, parasites and/or candida, which can affect how they feel. I went through many tests and treatments before my IBS symptoms completely resolved. Gluten free was just the first step for me. Nevertheless, Elab tests show the presence of gluten and Ttg antibodies, which is similar to standard blood tests, which show antibodies. For many people, who don't want to return to eating gluten just so they can damage their intestines enough to let gluten antibodies leak into their blood stream, Elab stool tests are a viable, noninvasive alternative.

You are making the assumption that small amounts of fecal anti-gliadin are meaningful. I don't believe any research has proven that or even come close. To the contrary, published studies suggest that only very high measurements are meaningful. Fine has his cutoff set far too low.

http://www.ncbi.nlm.nih.gov/pubmed/16377644

I had another study where the authors suggested that fecal anti-gliadin comes and goes, but I'm sick and I can't find it right now. They suggested small amounts of fecal anti-gliadin IgA are a normal immune function. (Fine's data suggest that too, since he gets it in so many gluten tolerant people.)

Anti-TTG is more worrisome, but but the whole reason Fine developed that test was to find microscopic colitis, not celiac. Fecal anti-TTG comes up in any bowel disease where there is inflammation, including infection, Crohn's, or microscopic colitis. Fecal anti-EMA is diagnostic of celiac, but that test would not be practical for Enterolab becasue it's done manually. So, you can have small amounts of fecal anti-gliadin no matter what, and anti-TTG from just about anything that damages the intestine. This is not necessarily diagnostic of celiac and the one certain test, anti-EMA, is not available at Enterolab. If your anti-gliadin is well above Fine's ridiculously low reference range and you have anti-TTG, yes, you need a celiac workup. If your results are borderline, it's anyone's guess what's going on.

As far as wellbeing, are you really going to tell me that if you ask 100 people "do you feel better gluten-free, yes, no, or maybe"? you will not get a useful metric? Give me a break. People know when they feel better and you don't need a sophisticated QOL measure to capture it. That fallacy of thinking you need to quantitate well-being has lead to insanity like endocrinologists treating people with only T4. Funny, when someone asked "Which did you prefer, treatment 1 or treatment 2" in a double-blinded, crossover trial with T3/T4 and T4 you get the answer you would expect - people preferred T3/T4 over T4. QOL measures were not different, nor was Hamilton. (Turns out there is one item on HDI that does come out different for folks on T3.) These measures are broken, in dangerous ways.

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As far as wellbeing, are you really going to tell me that if you ask 100 people "do you feel better gluten-free, yes, no, or maybe"? you will not get a useful metric? Give me a break. People know when they feel better and you don't need a sophisticated QOL measure to capture it. That fallacy of thinking you need to quantitate well-being has lead to insanity like endocrinologists treating people with only T4. Funny, when someone asked "Which did you prefer, treatment 1 or treatment 2" in a double-blinded, crossover trial with T3/T4 and T4 you get the answer you would expect - people preferred T3/T4 over T4. QOL measures were not different, nor was Hamilton. (Turns out there is one item on HDI that does come out different for folks on T3.) These measures are broken, in dangerous ways.

I never said you can't quantify well-being. Plenty of psychological tests already do that. I just responded to your comment that Enterolab tests couldn't predict how you will feel after going off gluten. Elab considers the contents of stool samples and DNA swabs. They don't use psychological tests to predict well-being. So Elab tests as well as blood tests and endoscopies can't predict how people feel after going off gluten. However, all those tests are still helpful to persuade people with IBS symptoms to abstain from gluten.

However, I do like your example concerning T3/T4 preference. Many people don't easily convert T4 to T3 (which the cells utilize). So they need T3 as well as T4. However, medical practices are very slow to change. Despite evidence to the contrary doctors very slowly accept new ideas. SIGH ...

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SIGH is right!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
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