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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.

Is There Any Other Way!?
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25 posts in this topic

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to! :(

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover :( I really don't want to suffer like that for 6 weeks!

Thanks

K x

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Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.

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Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.

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Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.

I am in England but we also get money off here, so yes that is an incentive! :)

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Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.

How likely is getting a negative test result? Do you know why this happens?

Thanks :)

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Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.

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It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.

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Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.

Thanks for that info! I wasn't aware that just intolerance doesn't show up on a test, but that makes sense.

I think I'll try gluten for a the month, keep a food diary and compare my symptoms on gluten to the diary I kept when I was gluten-free!

The in-office test is also a great idea, thank you very much! :)

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After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to! :(

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover :( I really don't want to suffer like that for 6 weeks!

Thanks

K x

I went through pretty much the exact same thing, except I was four or five months gluten free. I decided I HAD to know if it was celiac disease, and did do a gluten challenge. In the end, my celiac diagnosis was negative, but I have an enlightened gastroenterologist, and was diagnosed with gluten sensitivity.

In the U.S., this is still not a formally recognized diagnosis, although it's gaining a lot of traction in the established medical community. My primary care doctor is aware of it, and many of her patients are gluten free.

I've since found out that I have gluten sensitivity on both sides of the family, including tendencies towards alcoholism, depression, and Alzheimer's.

Probably the most direct evidence of gluten sensitivity is my brother, who tested positive for Ankylosing Spondylitis, and is now eating primal to get the inflammation down. I'm convinced I have it too, and have triggered a flare by going back on gluten for testing. Both my shoulders, my lower back, and my hip are stiff and sore to the point of not getting restful sleep at night. I'm going to see a rheumatologist next week to confirm the diagnosis, which is actually more of a diagnosis of elimination.

I'm glad I got my diagnosis though, because I feel I can help contribute to the research surrounding gluten sensitivity. Understanding this disorder, or disease process, is still in it's infancy. I'd say getting tested depends on your need to know, as well as the potential value you see a diagnosis adding to your life.

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Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger. :D

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.

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I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!

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Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger. :D

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.

Wow what a strange way to be diagnosed! Glad to hear you've been successfully diagnosed and now know what's best for your health :)

I tried last evening to re-introduce gluten and woke up vomiting for an hour, ate cereal this morning nevertheless and although I don't feel nauseas from cereal, suffering cramps, fatigue and aches :( Can't believe there isn't another way!

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I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!

I understand how you feel, after suffering painful vomiting last night and now fatigue, cramps and aches after eating just two gluten containing meals, I am re-considering ever listening/visiting a doctor with this again!! :(

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It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.

Very true, I was just hoping there was some other way to be diagnosed that doesn't include poisoning myself for 6 weeks and dealing with sceptical doctors that treat me like a silly little girl! :angry:

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Kirstie, my mom had the same experience as you. She was gluten free for 2 years (sans diagnosis) and was still anemic. Her doctor convinced her to do the gluten challenge so they could do a scope. She was vomiting and (TMI alert) couldn't even get out of bed to go to the bathroom after the first gluten meal. She called the doctor and talked to the nurse, who was insistent that she needed to continue so they could get a diagnosis. Finally the doctor heard about the conversation, called my mom back and told her "For God's sake, stop! No more gluten." Hopefully your doctor gets it.

Sorry you got sick. I'm not one bit surprised though. Hope you're feeling better today.

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For me personally I would never do it. And I haven't. B) I know that when I eat gluten I feel awful. If I don't eat it I'm fine. My doctor agrees, and based on "somewhat conclusive" blood work (weird, I know) she says "most likely celiac". I don't care if it is, or if it isn't. If it isn't then it's definitely gluten intolerance. Which amounts to the same thing in my book: giving up gluten entirely.

And if your doctor says to have the test because he's still convinced it's "only" IBS... well, why does it matter? I mean, if going gluten free has cured your "IBS" symptoms, or if it has cured your "celiac/gluten intolerant" symptoms, it seems to me that the main point is that your symptoms are cured! That should be the bottom line, in my non-medical opinion. :lol:

So like I said, I couldn't do it. I don't have time to be sick for that long, and I don't care if I don't have the biopsy. I feel great and that's all that counts!

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Wow what a strange way to be diagnosed! Glad to hear you've been successfully diagnosed and now know what's best for your health :)

I tried last evening to re-introduce gluten and woke up vomiting for an hour, ate cereal this morning nevertheless and although I don't feel nauseas from cereal, suffering cramps, fatigue and aches :( Can't believe there isn't another way!

Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life! :D

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. :( Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have. :)

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I was in the same situation. I went off it for about a month and I was starting to feel better, but my doctor wanted me to go back on gluten for a month to get the test. I decided to get the test done and I am happy that I did. It was kind of a relief when I found out that I was celiac because I finally had an answer to why i had all of these problems! And like someone else said, I get a tax break (I am in Canada) so I thought that was beneficial since gluten free foods and much more expensive.

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I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!

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Good luck, yes the challenge stinks, but I do think it's the only way.

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I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!

I'm sorry to hear that you've struggled with doctors too! I completely agree with your decision, at the end of the day its your body and you know better than anyone what hurts it!

I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!

Thanks for taking the time to share everyone! I'm so lucky to have found this board full of wise and helpful people! I too hope that one day a better way of testing will be available, until then I will eat what makes me feel good, and be weary before ever asking a doctor again! (sad but true.)

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Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life! :D

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. :( Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have. :)

I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x

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I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x

Thanks for your kind post! I cannot really say I feel much better physically (a little bit less muscle pain that I have been told is fibromyalgia) but the biggest thing is that I feel better mentally, knowing I am taking care of myself better. You know what? A diagnosis like this also forces you to take inventory of all aspects of your life (at least it did me) and I knew it was time to stop making poor, non-nutritious health choices.

Your symptoms are so horrid and sad. I really feel for you. Good for you for making the right choice for you! :) Remember that your body is very precious.

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I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!

6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon :)

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6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon :)

That is true. My doctor told me I must eat gluten for at least 3 months and eat the equivalent of 3 pieces of bread per day. It was easy for me but not for many of you. :(

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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