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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.

What Tests Should I Do From Enterolab?
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Hi, Im looking to get tested from enterolab to see if I have celiac or gluten sensitivities. I was wondering if anyone can give me any insight. Been suffering for years, and have had no luck with doctors in the past because they thought I was making all my symptoms up. A friend that has celiac mentioned it to me years ago, but I thought you only had gastro problems, which I did have as kid-very badly. But now, my whole body is really sick, as you all know how that goes, and after doing much reading up on it- I swear I've finally found out what it is. Not to mention, my friend was right! I just want to have conformation for myself before I go gluten free. I also am going to try talking to my new doctor to see if he can run some blood tests. BUT, will be getting tested by enterolab first. That way, I can show him my results-proof. Im desperate to figure this out, as I cannot stand being sick any longer. I am only 24, and have been suffering my whole life. "Trying" to keep this short, sorry. So I'll spare all the symptoms, but what tests should I order? Anyone else used enterolab before?

Thank you very much in advance! :)

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You should have your doctor run a full celiac panel first IMHO. There are false negatives but they have newer tests that are a big improvement over the ones we had even 10 years ago. Make sure they do the total IGA and the DGP tests. If you go with Enterolab order what you can afford. I did Enterolab (back when you could still order from my state) because I was still having issues post celiac diagnosis and wondered if I had another intolerance. I did, so if you can order the tests for other intolerances as well as gluten.

Not all doctors will take Enterolab testing seriously so it may not give any 'proof' to yours. If your doctor refuses to do a celiac panel on you then you may want to find another doctor.

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Thank you so much for responding! I will be following your advice and going to doctor first. I'll also be bringing my mom in so she can testify for all my symptoms. The list is long, but one that's really scary and I feel that it is somehow related is that I feel a mass in my lower right abdomen-kinda near my belly button. I've had it for about 4 years now or more. I also feel my most annoying symptom is my itchy skin that welts up after scratching with little bumps. I also get like little pimple looking things, but they're filled with clear liquid...so I was thinking maybe DH?

Once again thank you so much! I hope my doc will run those tests for me. :) Enterolab is pricey, but Im so desperate....but doc first!

Edited by freeme808
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There is no validated test for (non-celiac) gluten sensitivity.

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There is no validated test for (non-celiac) gluten sensitivity.

That is so true!! That is because doctors only accepted that there is such a thing a year or two ago. Haven't had time yet to figure it out.

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There is no validated test for (non-celiac) gluten sensitivity.

Yet..... only self-validation.... therefore, to thine own self be true. This trendsetting thing requires patience!

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Hi, Im looking to get tested from enterolab to see if I have celiac or gluten sensitivities. I was wondering if anyone can give me any insight. Been suffering for years, and have had no luck with doctors in the past because they thought I was making all my symptoms up. A friend that has celiac mentioned it to me years ago, but I thought you only had gastro problems, which I did have as kid-very badly. But now, my whole body is really sick, as you all know how that goes, and after doing much reading up on it- I swear I've finally found out what it is. Not to mention, my friend was right! I just want to have conformation for myself before I go gluten free. I also am going to try talking to my new doctor to see if he can run some blood tests. BUT, will be getting tested by enterolab first. That way, I can show him my results-proof. Im desperate to figure this out, as I cannot stand being sick any longer. I am only 24, and have been suffering my whole life. "Trying" to keep this short, sorry. So I'll spare all the symptoms, but what tests should I order? Anyone else used enterolab before?

Thank you very much in advance! :)

My daughters and I have had lots of luck with entero lab and I believe they are accurate with results. Call and talk to Kathy and she will tell you what test to take(99 dollars and 3 weeks later you get results). The number is972-686-6869. She is great and will help you. If you can find a doctor that gets the celiac gluten thing that would be helpful. In the wheat belly book by William Davis it tells you what tests to get for celiac panel. Another place that could help you find doctors and good infor is a celiac support group in your area. I go to mine once a month and it is great to get support from others that understand what you are going through.

I was very sick 2 years ago and 2 years later I am on no meds just vitamins and have great energy. I had acid reflux, joint pain, stomach pain, brain fog, fatigue, rashes on hands, feet, knees/elbow, depression, and more. That is all gone. If I eat gluten by accident I get some of it back but then goes away in a few days. I am so grateful that I know about celiac. Otherwise I would be taking a drug for crohns disease right now because that is what the GI docs told me 2 years ago. I am so glad I did not take that awful drug. Start getting well by taking vitamins and eating well. It may take a while but it is all worth it. Good luck!!

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Thank you so much for responding! I will be following your advice and going to doctor first. I'll also be bringing my mom in so she can testify for all my symptoms. The list is long, but one that's really scary and I feel that it is somehow related is that I feel a mass in my lower right abdomen-kinda near my belly button. I've had it for about 4 years now or more. I also feel my most annoying symptom is my itchy skin that welts up after scratching with little bumps. I also get like little pimple looking things, but they're filled with clear liquid...so I was thinking maybe DH? ahh, sorry. I've pretty much been nicknamed the sick girl....my brother used to call me Melman-the giraffe from Madagascar. Lol.

Once again thank you so much! I hope my doc will run those tests for me. :) Enterolab is pricey, but Im so desperate....but doc first!

With the skin issue you could see a derm. But do make sure they are familiar with DH. They need to biopsy next to an active lesion and do a particular test for it. A diagnosis of DH is a diagnosis of celiac. You would need no further testing for celiac if that is positive.

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Thank you all for responding! I will be getting some blood work from my doctor on the 22nd. Im hoping he will refer me to the derm as well. I will also be doing a couple of tests from enterolab. If I am not positive for celiac, I will still be going gluten free. :) Porkchop, thank you. I will be calling her.

I've been reading "Living Gluten Free for Dummies" by Danna Korn. In there she lists the blood tests to do.

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Hi, Im looking to get tested from enterolab to see if I have celiac or gluten sensitivities.

Don't bother with enterolab. Dr Fine makes a strong claim but he isn't willing to back it up with solid evidence:

"EnteroLab has developed a unique screening test for gluten sensitivity...that is more sensitive and specific than tests in current use. For more on the rationale and superiority of our method over pre-existing tests, please read an essay about this on this website."

AN ESSAY???? AN ESSAY??????!!!!!!!!!!!!!!!!! COME ON!!!!!!!! This is an insult to one's intelligence. I demand PEER-REVIEWED studies, not essays.

If Dr. Fine were so sure about the superiority of his testing method, why hasn't he submitted peer-reviewed medical literature for publication? He claims he has done one study, but his results have not been verified by other scientists and he won't allow them to be. Why is that?

I was wondering if anyone can give me any insight. Been suffering for years, and have had no luck with doctors in the past because they thought I was making all my symptoms up.

Ok. Anytime a doctor thinks you are making up your symptoms, you need to get up and walk out of that doctor's office immediately and get a new doctor. Especially if you are carefully logging your meals and corresponding symptoms. Log everything. Show the doctor your log. If the doctor still thinks you are making it up, get up and walk out right then and there. Demand quality treatment. Settle for no less. This type of thing makes me so mad.

A friend that has celiac mentioned it to me years ago, but I thought you only had gastro problems, which I did have as kid-very badly. But now, my whole body is really sick, as you all know how that goes, and after doing much reading up on it- I swear I've finally found out what it is. Not to mention, my friend was right! I just want to have conformation for myself before I go gluten free.

Regarding confirmation, I can't blame you, but confirmation might be limited. Here's why. There are currently tests that can tell you whether or not you have a wheat allergy or Celiac Disease. But that's about it. Other tests that can tell you whether or not you have non-celiac gluten sensitivity are not accurate and cannot be trusted. The gold standard for those who have non-celiac gluten sensitivity is going on a gluten free diet for a month or so. If symptoms disappear while gluten-free, but re-appear when gluten is introduced back into the diet, then you know you are non-celiac gluten sensitive; that is your only confirmation at this time, given the lack of knowledge that exists in the scientific community on this subject at this time.

I also am going to try talking to my new doctor to see if he can run some blood tests. BUT, will be getting tested by enterolab first. That way, I can show him my results-proof.

Don't bother. Dr. Fine has no credibility with other doctors, and rightly so. If your doctor refuses to run blood tests for wheat allergy and celiac disease, fire him/her and get a new doctor who will.

Im desperate to figure this out, as I cannot stand being sick any longer. I am only 24, and have been suffering my whole life. "Trying" to keep this short, sorry. So I'll spare all the symptoms, but what tests should I order?

You deserve to feel better, and you deserve to know whether or not you have celiac disease. Ask for the full celiac panel to be run. Doctors will vary in their knowledge of Celiac Disease; some will be clueless and not know which tests to order. Here are the tests that should be included in any complete Celiac Panel:

Endomysial Antibody, IgA

Tissue Transglutaminase Antibody (tTG), IgA/IgG

Immunoglobulin A (IgA), total

Deamidated Gliadin Antibody IgA/IgG

Thank you so much for responding! I will be following your advice and going to doctor first. I'll also be bringing my mom in so she can testify for all my symptoms.

You are a grown man; you don't need to bring a witness with you who can attest to your symptoms. If your doctor will not take YOU seriously, fire him/her and get a new doctor.

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Thank you, seeking2012. I am not a man, but a young woman. You've kind of scared me, like Im not going to get any results- which is frustrating because a couple of months ago, I wasn't going to even bother with the doctors again. But I figured, hey...at least I could try, and then move on with my diet changes. Regardless of the outcome of all my tests, I will be going gluten free. Fresh, living food gluten-free. No processed. These blood tests are to give me some kind of insight into my condition, cause I figured it wouldn't hurt to get checked-even if it turns out negative or false negative. At least he can check my vitamins and minerals.

I've read enough posts on here to see that some people get diagnosed by blood tests alone, some need a biopsy, some do trial and error(gluten-free), and some have had great results from using enterolab. I feel at this point, it really is up to me- regardless of what testing I choose to do and what results they turn up.

I would also like to add that I am not upset by your post, if that's how Im coming off. You've just given me some more to think about. As far as finding new doctors- it can be some what of an hassle. I live on an island, and although we have good doctors here...it can be more of a ring a round to find a good one. I believe the doc Im with now is very compassionate and will listen to me. I've only recently switched over a couple months ago when I had a VERY bad flare up in my TMJ. Rounds of meds later, I am sick, sick. If I don't have any luck with him, I will be changing my diet and moving on.

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Thank you, seeking2012. I am not a man, but a young woman.

I apologize; I don't know why I assumed you were a guy. I also am a woman on a similar journey to yours to see what is causing my health ailments (chronic fatigue, decreased cognitive function and memory function, etc).

You've kind of scared me, like Im not going to get any results- which is frustrating because a couple of months ago, I wasn't going to even bother with the doctors again. But I figured, hey...at least I could try, and then move on with my diet changes. Regardless of the outcome of all my tests, I will be going gluten free. Fresh, living food gluten-free. No processed. These blood tests are to give me some kind of insight into my condition, cause I figured it wouldn't hurt to get checked-even if it turns out negative or false negative. At least he can check my vitamins and minerals.

You should definitely get tested for at least Celiac Disease. I think most of us on this forum and forums all across the internet would love to have a lab test validate our symptoms, but sometimes there is not one that exists that can do that. But you can at least confirm or rule out Celiac.

I've read enough posts on here to see that some people get diagnosed by blood tests alone, some need a biopsy, some do trial and error(gluten-free), and some have had great results from using enterolab. I feel at this point, it really is up to me- regardless of what testing I choose to do and what results they turn up.

You are right; it IS up to you.

I would also like to add that I am not upset by your post, if that's how Im coming off. You've just given me some more to think about. As far as finding new doctors- it can be some what of an hassle. I live on an island, and although we have good doctors here...it can be more of a ring a round to find a good one. I believe the doc Im with now is very compassionate and will listen to me. I've only recently switched over a couple months ago when I had a VERY bad flare up in my TMJ. Rounds of meds later, I am sick, sick. If I don't have any luck with him, I will be changing my diet and moving on.

I'd recommend that you read up on the literature from Dr. Alessio Fasano (the doctor who discovered zonulin) and the Human Microbiome Project; very interesting and relevant material pertaining to celiac, gluten sensitivities, the microbiome and the role it plays in autoimmune diseases, etc.

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Seeking, I wish you luck in your journey and that you too find relief soon. My pursuit in testing is to see if it's celiac. Im torturing myself for one more week or so until blood testing. And unless my doc wants to do a biopsy, Im going straight to gluten-free. My jaw is slowly flaring up and I am SOOO scared!! I can't handle another round of that...Cause in the end, I usually have to go on antibiotics to clear up the infection. :(( I swear my gut and other areas are soo messed up from that. I take probiotics and it helps a little. Even my skin flares up from the antibiotics. Not happy atm. :( Switching to soft foods and icepacks in hopes of it helping.

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You can't just ask your doctor for the blood work? It always surprises me how many doctors refuse, especially in the states. It is your money, your health, so who are they to deny a simple test if it will at least "shut you up" if negative? When I requested my blood work my doctor said "there is no way you have Celiac but if it will make you happy than sure". If she wasn't willing to do the blood work I was going to say that I will go to clinics elsewhere until I got it and if it came back positive and the biopsy proves Celiac she could expect a malpractice lawsuit from me, as simple as that. Most doctors will do the tests on that threat, it is very serious to blatantly disregard someone like that and most will not be willing to take the chance on future troubles.

The funny thing with mine is that regardless of her assurance I received two positive blood tests and am undergoing the biopsy to confirm the diagnosis, even then she said she would feel awful for arguing against it if I end up in fact having the disease. I guess some doctors have more of a concious than others, just like anyone else in any other profession.

Here are the good tests that you want:

Total Serum IgA

Deamidated gliadin IgA

Deamidated gliadin IgG

Tissue transglutaminase IgA

Endomysial ab IgA/IgG (for this test both are done at the same time)

If your doctor is refusing to do the blood tests I will highly doubt he will take enterolab seriously, looks to me like you need to find a new practitioner.

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Hi trynottoworry,

I would have love to see the look on your doctors face when your results came back positive!

Yeah my last doctor wasn't good at all. I asked him to feel my stomach cause I felt a mass in there, and he barely pressed on it. My Gyn/Ob felt it RIGHt away! So she ordered an aorta ultrasound(I thought maybe it was bulging or something), but because I was over my GP, I did't have anyone to follow up with. Now I do. Im pretty sure he'll run the tests for me as this doctor is way more understanding and compassionate. However, I will still be bringing in that list for the blood work. I want to make sure he orders it all, not just some.

Thank you everyone for your help! :)

I will definitely be posting my results. But it won't be for a couple more weeks as my appointment isn't until the 22.

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