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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Intolerance Is It The Same As Celaic?
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15 posts in this topic

Hey guys i was diagnosed with celiac disease via blood and biopsy in sept.Agood friend of mine has since been having alot of the same problem i have and i suggested she get a celiac test well what do you know the doctor said she was probably gluten intolerant and borderline diabetic that he wants her to loose 30 lbs and try the gluten-free diet.My question is from a blood test can you tell if someone is just gluten intolerant???If shes making any antibodys on a celiac blood test wouldnt that suggest it??Also what is the difference between the 2, i was told by gp that they were both the same but then heard from others that they were in fact not. Cant gluten intolerance cause celiac??and will gluten intolerance ever go away??I know celiac wont:( Thank you i just want to address my friend correctly as it seems her doctor is confusing her xoxoo

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Personally I agree with your GP. Both are autoimmune, both need to be just as strict with the diet although sometimes it is different parts of the body that are attacked by the antibodies. Some consider blood test and/or biopsy negative folks to be gluten intolerant rather than celiac although the both tests have a high false negative rate.

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hey raven

My gp is awesome!!!But i heard from other sources that celiac disease is autoimmune which causes the damage and in turn the worst case cancer and other autoimmune diseases, and gluten intolerance is not an autoimmune which only causes symptoms but not the actual damage its soo confusing:(

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hey raven

My gp is awesome!!!But i heard from other sources that celiac disease is autoimmune which causes the damage and in turn the worst case cancer and other autoimmune diseases, and gluten intolerance is not an autoimmune which only causes symptoms but not the actual damage its soo confusing:(

I personally would not agree with that but I am not a doctor. Some would consider me to be gluten intolerant rather than celiac because I don't show up in blood work and am not DQ2 or DQ8. I had a great deal of autoimmune problems that cleared up on the diet.

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hey raven

My gp is awesome!!!But i heard from other sources that celiac disease is autoimmune which causes the damage and in turn the worst case cancer and other autoimmune diseases, and gluten intolerance is not an autoimmune which only causes symptoms but not the actual damage its soo confusing:(

Hi Mama Melissa,

I have been dx'ed with non-celiac gluten sensitivity. It has led to my next dx of Hashi's which is autoimmune. So even if gluten sensitivity isn't auto immune, I still ended up with an autoimmune disease from it anyway. So what's the diff? Still have to be gluten free to be healthy.

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Hey guys i was diagnosed with celiac disease via blood and biopsy in sept.Agood friend of mine has since been having alot of the same problem i have and i suggested she get a celiac test well what do you know the doctor said she was probably gluten intolerant and borderline diabetic that he wants her to loose 30 lbs and try the gluten-free diet.My question is from a blood test can you tell if someone is just gluten intolerant???If shes making any antibodys on a celiac blood test wouldnt that suggest it??Also what is the difference between the 2, i was told by gp that they were both the same but then heard from others that they were in fact not. Cant gluten intolerance cause celiac??and will gluten intolerance ever go away??I know celiac wont:( Thank you i just want to address my friend correctly as it seems her doctor is confusing her xoxoo

I saw a doc at the University of Chicago Celiac Center, and she told me that they don't actually know a lot about gluten intolerance. All they can tell for sure is that gluten intolerance mimics many of the symptoms of celiac disease, but doesn't cause the actual intestinal damage. Gluten intolerance could be a precursor of celiac (at least in some people) but they just don't know for sure yet. U of C is conducting a lot of research on the issue right now. She also said that if someone is just intolerant they should still stick to a gluten free diet. personally, I've had blood test indicative of celiac, as well as a positive genetic test and family history of it. I was already gluten free, so I opted not to have a challenge for the biopsy. After all, I'd still stick to the diet whatever the result, as I feel a lot better!

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I refer to myself as gluten intolerant simply because I have never officially been diagnosed. I started gluten-free to see if it helped, and yes, my symptoms did go away, so now its too late to get a diagnosis... unless I want to gluten myself to do so... and I don't.

I don't want to claim a disease that has not been diagnosed by a doctor, so "gluten-intolerant" works for me. Either way, I don't think it matters to me. The diet doesn't change.

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yes i agree the diet does not change.But if you get a celiac panel and one or 2 things look a little elevated and the doctor decided you are gluten intolerant or celiac how do they determine from bloodwork is what i want to know cause from my bloodwork they told me i was celiac right away.just curious how it works???but my friends they said the level/levels looked A little elevated then they said gluten intolerance anyone have similar experience??

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I was told that when gluten intolerance causes extensive damage, it is then termed Celiac; if you are gluten intolerant it acts more like a regular food allergy than an autoimmune response. I consider myself simply gluten intolerant because blood work and endoscopy were negative for Celiac. It is still a possibility since I had already been off gluten for a few weeks when I had the tests and I am not willing to do a 1-3 month long gluten challenge just to confirm that I do indeed have trouble with gluten. But I often do my grocery shopping with Celiac in mind, not just gluten intolerance.

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On the celiac lab tests, each lab has ranges for the results (which are measuring antibodies). To give a hypothetical example, let's say that under 7 is definitely negative, 8-15 is mildly positive, and anything 16 and over is celiac. If you score an 8, you are neither negative nor positive. Same if your score is 14. But if you hit the magic 16 number, you are celiac. And what do these numbers represent? Specific markers in the blood for a specific autoimmune reaction to gliadin. Sometimes, if you wait long enough and then are retested, you will score high enough to be called celiac :blink: But do you really want to ace this test? Well, it doesn't really matter to the patient whether they pass the test or not, because the patient is still being affected by gluten whether they pass or not, but it seems to matter to the doctors that you have to score the magic 16. Many of them will tell you, if you don't pass the test, to go away and eat gluten and be happy. The smarter ones will tell you to try the gluten free diet and see if it makes a difference for you. Because, as OP's have said, the research is in its infancy and they really don't know a lot about gluten intolerance :unsure:

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wow soo interesting i told my friend she should stick to the diet for life as i do to be honest she seems to be having more problems than me and i am celiac and taking into account her borderline diabetic whicch could possibly be from being overweight and extremely low vit d dosent help her either i just hope she takes it as seriously as i do.Cause to be honest the results sound like they could both be the same

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On the celiac lab tests, each lab has ranges for the results (which are measuring antibodies). To give a hypothetical example, let's say that under 7 is definitely negative, 8-15 is mildly positive, and anything 16 and over is celiac. If you score an 8, you are neither negative nor positive. Same if your score is 14. But if you hit the magic 16 number, you are celiac. And what do these numbers represent? Specific markers in the blood for a specific autoimmune reaction to gliadin. Sometimes, if you wait long enough and then are retested, you will score high enough to be called celiac :blink: But do you really want to ace this test? Well, it doesn't really matter to the patient whether they pass the test or not, because the patient is still being affected by gluten whether they pass or not, but it seems to matter to the doctors that you have to score the magic 16. Many of them will tell you, if you don't pass the test, to go away and eat gluten and be happy. The smarter ones will tell you to try the gluten free diet and see if it makes a difference for you. Because, as OP's have said, the research is in its infancy and they really don't know a lot about gluten intolerance :unsure:

Those... in a nutshell... are some very wise words!

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So basically Mushroom theres a heck of a lot of celiacs out there just not on paper but it causes the same ill effects.Boy ,am i glad to be offically diagnosed and not misguided i really feel for the people who really aren't sure :(

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So basically Mushroom theres a heck of a lot of celiacs out there just not on paper but it causes the same ill effects.Boy ,am i glad to be offically diagnosed and not misguided i really feel for the people who really aren't sure :(

Well, like I say, most doctors wouldn't even call them gluten intolerants, let alone celiacs. They tell them they have IBS :P

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Well, like I say, most doctors wouldn't even call them gluten intolerants, let alone celiacs. They tell them they have IBS :P

Lolzz soo true mushroom!!!I love your realizations and really like your sense of humor it helpss soo much in life :D

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    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
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