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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Enterolab - Gluten Stool Test - Were Your Results Accurate?
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10 posts in this topic

If you used EnteroLab for the gluten-sensitivity stool test, were you satisfied with the results?

Did the results ever say negative when you knew you had Celiac Disease or gluten-sensitivity?

I plan on doing this test. I've already had a blood test and it was negative. I heard that a stool test is more sensitive.

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Well I'm new to all of these, but my results say I have some fairly extensive malabsorption, which I believe to be true. But all the other tests were negative, so it makes it more confusing to me, is there another reason for it? Is it leaky gut?

I'm still trying to figure out my genes and what it means (see my post further down, if anyone can add to Nora's posts, I would greatly appreciate it)...It looks like I'm a 7 and 5, but then it seems that I'm also a 3 and 1, not sure if I understand that or what the implications are.

I want to get my kids tested, I have one who tested posted on a skin test to wheat (IGE) so it would be interesting to see how that corresponds to the genes.

I've been doing searches over the last week (with all the snow, I'm not doing much else) but find it hard to search for the specific genes, the engine says I can't search like that.

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If you used EnteroLab for the gluten-sensitivity stool test, were you satisfied with the results?

Did the results ever say negative when you knew you had Celiac Disease or gluten-sensitivity?

I plan on doing this test. I've already had a blood test and it was negative. I heard that a stool test is more sensitive.

Yes, I was satisfied with the enterolab results even though I had tested negative by blood test. This is the first time I had used enterolab, so no I had never gotten a negative result from them. Yes, I have heard that the stool test is much more sensitive and accurate than the blood test that is why I did it.

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Yes, I have heard that the stool test is much more sensitive and accurate than the blood test that is why I did it.

Please note that Enterolabs can not and does not diagnose for Celiac Disease. Stool testing, at this time is not an accepted form of diagnosis regarding Celiac. They can test for gluten sensitivity, but then most, already suspect a gluten/food sensitivity in contacting Enterolabs.

Here is some additional information on Genetic Testing for Celiac Disease:

http://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

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Please note that Enterolabs can not and does not diagnose for Celiac Disease. Stool testing, at this time is not an accepted form of diagnosis regarding Celiac. They can test for gluten sensitivity, but then most, already suspect a gluten/food sensitivity in contacting Enterolabs.

Here is some additional information on Genetic Testing for Celiac Disease:

http://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

Hmm, then what is an accepted form to diagnose Celiac Disease/gluten-sensitivity? I already had two negative blood tests. I've read the biopsy gives negative results for people with severe Celiac Disease. Is the genetic test the best way to assume one has Celiac Disease?

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Hmm, then what is an accepted form to diagnose Celiac Disease/gluten-sensitivity? I already had two negative blood tests. I've read the biopsy gives negative results for people with severe Celiac Disease. Is the genetic test the best way to assume one has Celiac Disease?

Unfortunately, there is no perfect method of diagnosis. Serologic Blood Panel, Endoscopy/Biopsy, in combination with a positive dietary response, can be diagnostic.

Many times, these methods fail to pinpoint a severe sensitivity, and some turn to Enterolabs. A gene test will not tell you that you have Celiac, but it can indicate and increased risk of developing Celiac. I believe, it's 70% of the people with the Dq2 Dq8 genes will never develop Celiac. It can also tell you that you genetically cannot develop the autoimmune Celiac Disease if you do not carry the specific genes. So again, gene testing can only be a piece of the puzzle.

Many people here are self diagnosed and found that compliance with the diet is good enough for them. I can empathize with the quest for answers, though.

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My daughter tested positive with an 11 through Enterolab but she has not had any improvement in the 4 months that she has been off of gluten. Her only symptom has been severe insomnia. She has never had GI symptoms I'm really starting to question whether or not she is truly sensitive to gluten. Is there another way that we can find out?

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I think that's a hard situation....if you aren't experiencing symptoms, then how do you know if it's gluten? We are facing the same issues, we don't have the classical symptoms. I have tried convincing the kids to go gluten free, we tried it for about 30 days and no one thought it make a difference for them. Now, long term, it might reduce lots of things, but then again, it might now...so without a positive biopsy or blood work, how do you know? Enterolabs seems to think that all the genes can cause sensitivity or intolerance except DQ4, so I am not sure that's a help at all....

Unless it comes back DQ2 and 8, it seems that it's hit or miss...then what to do? If it can take 1=2 years to see improvement for some symptoms, that's an awfully long time to be on a restrictive diet with no answers. And there are so many other things that could be contributing like corn, dairy, food colorings, MSG, how does one differentiate?

I was hoping to be able to search these boards and get more definitive answers from people who have my gene types, but I am learning that it doesn't seem to matter so much what gene types you have, but whether you improve on the diet. And trying to manage 5 kids and myself on a gluten free diet for two years is going to be so stressful, I'm not sure I want to try that without more definitive proof.

I'm still confused about my particular gene types and haven't been able to really get straightforward, easy to understand answers in the literature, much work needs to be done there....

I considered testing all the kids, but the cost is ridiculous and may not tell us anything new....the blood work has been all negative and one daughter had a biopsy that was negative...so I'm not sure what to think...

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I think that's a hard situation....if you aren't experiencing symptoms, then how do you know if it's gluten? We are facing the same issues, we don't have the classical symptoms. I have tried convincing the kids to go gluten free, we tried it for about 30 days and no one thought it make a difference for them. Now, long term, it might reduce lots of things, but then again, it might now...so without a positive biopsy or blood work, how do you know? Enterolabs seems to think that all the genes can cause sensitivity or intolerance except DQ4, so I am not sure that's a help at all....

Unless it comes back DQ2 and 8, it seems that it's hit or miss...then what to do? If it can take 1=2 years to see improvement for some symptoms, that's an awfully long time to be on a restrictive diet with no answers. And there are so many other things that could be contributing like corn, dairy, food colorings, MSG, how does one differentiate?

I was hoping to be able to search these boards and get more definitive answers from people who have my gene types, but I am learning that it doesn't seem to matter so much what gene types you have, but whether you improve on the diet. And trying to manage 5 kids and myself on a gluten free diet for two years is going to be so stressful, I'm not sure I want to try that without more definitive proof.

I'm still confused about my particular gene types and haven't been able to really get straightforward, easy to understand answers in the literature, much work needs to be done there....

I considered testing all the kids, but the cost is ridiculous and may not tell us anything new....the blood work has been all negative and one daughter had a biopsy that was negative...so I'm not sure what to think...

I don't know the age of your children, but I would be willing to bet that you can cook daily meals totally gluten free, and no one would know the difference. If you need assistance doing that, the Baking, Recipe Thread has many suggestions.

Most meals can be cooked gluten free, and a substitution needs to be made for bread and pasta. I really is pretty easy, once you get the hang of it.

Your gene testing cannot tell you if you have Celiac. It can only tell you that you might be an increased risk...that's all.

Sometimes the diet is an epiphany to some. If it works, you know there is an issue of some level. If it does not work, there are places that can test for food sensitivities. Tackle one issue at a time.

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Thanks for the suggestions....I made up a weeks worth of menus tonight, that wasn't too difficult. But the problem is that all but one are school age, so I need to have total support and cooperation on their parts because they have school lunches, treats at school, birthday parties, sleepovers, boy scout activities, etc. And all of these events have gluten. I came up with a list of breakfasts, treats, snacks, etc. that are gluten free for the house, but it's all for nothing if they disregard the diet outside the home.

I am afraid that I'll go to the expense and trouble to make our house gluten free only to have them eating gluten on almost a daily basis outside the home.

That's why I'm searching for some answers about my gene test results, Nora was able to help me, but I still have questions and I'm not sure if there just aren't any answers...

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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