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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.

Two Docs With Differing Opinions
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My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

I do not want to ignore something that might being neglected if this truely is not celiac but I am wondering why I am continually getting better off glutens, and why all the other stuff I have been thru that I have answers for in connection to celiac if this is not celiac??

It would be nice if I could locate a doc with some expertise on celiac.

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Can you stay with the new doc? If you also have something else going on being gluten free isn't going to mask it or prevent it from being picked up in tests. It sounds like your old doctor may not like that after your being ill for a long time and him not being able to figure it out someone else has. Might not be the case but I would change to the new more celiac savvy doctor if that is possible.

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It sounds like this doctor has no real experience or knowledge of Celiac Disease or even auto-immune diseases. Can you stick with the 'new' doctor? If not, did you ask the 'old' doctor why you feel better and have improving symptoms since going gluten-free? If he says it is "all in your head" (I got that one from one of the docs I was seeing prior to diagnosis?!?!) you NEED a new doctor!

Also, I've dealt with military doctors in the past and while some have been great some have been absolutely the pits -- if they can't figure it out right away it obviously isn't a 'real' problem at all (back to "all in your head!") A couple of them also did not want to admit they did not know absolutely everything about illness and injury, as if admitting a lack of knowledge diminished their worth or something. Personally I'd rather have a doctor who will admit to not knowing something (as my GP did once I was diagnosed with Celiac Disease -- he's been amazing, doing lots of research on his own and always listening to anything I say that I've learned about Celiac myself!) than be dismissed out of hand because they were less than an expert in an area.

Where are you located? Any Celiac specialists in your area?

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Can you stay with the new doc? If you also have something else going on being gluten free isn't going to mask it or prevent it from being picked up in tests. It sounds like your old doctor may not like that after your being ill for a long time and him not being able to figure it out someone else has. Might not be the case but I would change to the new more celiac savvy doctor if that is possible.

For some reason, doctors have this idea that being gluten free is an inhumane and profound hardship. It is baffling to me, since other people willingly eat fad diets or kosher diets or vegetarian or vegan. No one gets more crap for their diet than celiacs do, and it is a complete mystery.

From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.

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My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

Let me get this straight. You are asking whether to trust a liar? Stick with new doc. He sounds good.

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Sounds as if he does not like being contradicted by NEW doc. :rolleyes:

Weren't you improving and finding relief from being gluten-free?

What do you think explains this improvement???

What did he make of that???

How are you lab tests now?

Not sure what the dilemma is here, hon!!

New doc, new diet = you feel better.

:)

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There are good docs and not-so-good-docs...and it's not always intentional. For too many years we put doctors on pedestals and assumed they were always right and we did what they told us to do. Unfortunately, or fortunately (!) the human body is a very complex thing.

In my very humble opinion, 100 years from now we may very well look back on on medical knowledge and think we were in the dark ages in 2011. I also believe that as patients, we need to take an active role in our care...which is exactly what you've done. Trust your own instincts. Listen to your body.

Stay with the 'new' doc... ;)

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And you're wasting your time with this incompetent person, why ?

I don't "officially" have much of my auto immune diseases, either, because of the way the health care system in the United States changed in the late 1990's and began to reward incoherence and shuffling patients from one doctor group to the next, and I moved from one state to another without taking full medical records.... not that it would have mattered, I have had deliberate crooks, aka medical specialists, only interested in the initial consultant reimbursement look at x rays showing damage and declare "you don't have arthritis" when I've had one who wasn't so in on this racket be shocked that I am not a complete invalid with this much visible damage. At least this one (who also tested me for antibodies after years off of gluten ) humors me on the "gluten intolerant" part. And I was diagnosed in the 1980's with this supposedly "no cause" condition. That's 30 years of idiots, some of which who were shockingly nasty about it, telling me there's nothing wrong or that I'm making it up, and there is no end in sight for my lifetime. Thanks, insurance industry !

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My old doc is now back from his deployment (military), and met with me today. I have been seeing a new doc for the past several months, the one that diagnosed me with celiac back in Sept. Old doc looks over everything new doc had in my records, he smurks and then he says, "No, no, no this is not an autoimmune disease. I don't know what you have, every test we have ran has come back negative, but it is not celiac." However, this is the doc that ran a celiac test on me after I went off gluten, knowing I went off. He is also the one that told me nothing about all my low marks on my bloodwork.

I do not want to ignore something that might being neglected if this truely is not celiac but I am wondering why I am continually getting better off glutens, and why all the other stuff I have been thru that I have answers for in connection to celiac if this is not celiac??

It would be nice if I could locate a doc with some expertise on celiac.

Did this genius suggest what the problem is if it isn't gluten? Offer any new tests?

You're a smart lady. What do YOU think?

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Time to FIRE a Doctor, case closed...!!!!!

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pretty simple. if being off gluten is working..then...well...you got your answer. every doc has their on beliefs, biases, and proclivities. it sounds to me that you already have your answer but this quack has you bothered a bit.

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It sounds like this doctor has no real experience or knowledge of Celiac Disease or even auto-immune diseases. Can you stick with the 'new' doctor? If not, did you ask the 'old' doctor why you feel better and have improving symptoms since going gluten-free? If he says it is "all in your head" (I got that one from one of the docs I was seeing prior to diagnosis?!?!) you NEED a new doctor!

Also, I've dealt with military doctors in the past and while some have been great some have been absolutely the pits -- if they can't figure it out right away it obviously isn't a 'real' problem at all (back to "all in your head!") A couple of them also did not want to admit they did not know absolutely everything about illness and injury, as if admitting a lack of knowledge diminished their worth or something. Personally I'd rather have a doctor who will admit to not knowing something (as my GP did once I was diagnosed with Celiac Disease -- he's been amazing, doing lots of research on his own and always listening to anything I say that I've learned about Celiac myself!) than be dismissed out of hand because they were less than an expert in an area.

Where are you located? Any Celiac specialists in your area?

I am in Gerany and I have thought many times of going to a German doc. I am sent off base for certain things and it was thru the University hospital in Heidelberg that a German doc determined I diod not have hypercalcemia which my old doc thought this was. German doc took one look at me and said I can tell you witghout running any tests that you do not have hypercalcemia. However, he did tests that the military docs did not run and it was determined. Since being on a gluten-free diet my calcium levels have never gone back up again, all my parathyroid tests have turned out fine.

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Did this genius suggest what the problem is if it isn't gluten? Offer any new tests?

You're a smart lady. What do YOU think?

Thanks Prickly, I have done way too much research and did everything possible, mostly on my own and with the help of you guys here to figure everything out and there is no way I am taking steps backwards at this point. My husband and I sat last night and the very first question he asked was the very question you mentioned here. In all the tests that I went thru for 7 months with no answers, this man (old doc) could not, and still cannot give me an answer.

If this is not celiac, that leads me to MS (still have not seen my MRI, only know I do not have tumors), Parkinson's, alcoholism, or HIV due to the improvement on the gluten-free diet and the neuropathy isses I have. I know I can rule out HIV and alcoholism. Ugh, ugh, ugh.

I am going to see what I can do to get my primary health care provider switched to the new doc that diagnosed with celiac.

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From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.

This chain has so far been an excellent critique catchall of some of the worst our medical system has to offer. I am enjoying reading everything.

However in response to the quote above, I will say that a doctor - and an old school doctor at that - diagnosed my celiac disease. It was almost through luck, so I won't attribute it to an open mind necessarily. Still there are things that drove me to distraction about his practice, so I started to look elsewhere for a GP. I wanted less wait time (less than 1.5 hours, let's start with that, shall we?), a doctor who spent at least 20 minutes with me. I got online, read the reviews, and found one of whom lots and lots of people had written glowingly about, most especially those with celiac disease. The 'experience' of it was so good. So I went. And yes, she did spend a lot of time with me and the wait time was blessedly short. But when I brought up celiac disease and how I had dealt with one doctor in a different city who had dismissed my concerns about gluten-free medication, she seemed to also dismiss that as a concern. She started on about how the gut needs to heal and the implication I was drawing was that once the gut heals that there is less and less need to be concerned about gluten. We did not continue down that path much (I was actually there about something else), but that never stopped tickling me.

So now my choices are: a doctor who spends time with me but seems a little fuzzy about celiac disease (even though those with celiac disease have recommended her!) and a cattle-call doctor who knows about celiac disease but makes me wait 2 hours in his waiting room and sees me for 7 minutes.

Plumbago

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From doctors, when I've said flat out that I have celiac and I literally CAN NOT eat gluten, I get responses ranging from disbelief, to confusion, to downright annoyance and anger. The ONLY person who accepted it no questions asked was my chiro. And my rheumy wanted me to stop seeing him because he was "dangerous". Not likely, sweetheart!

Doctors in the U.S. are profoundly biased against diagnosing celiac. They literally will not consider it as an option. Usually, it won't even occur to them. I just outdiagnosed a new case of celiac in a friend over a panel of literally fifteen doctors who were all scratching their heads. They had given up on him as a malingerer. I used to have this idea of the medical profession as well intentioned, striving towards healing (too many episodes of Star Trek and E.R. I think!). The medical system in this country is sick and misguided.

This chain has so far been an excellent critique catchall of some of the worst our medical system has to offer. I am enjoying reading everything.

However in response to the quote above, I will say that a doctor - and an old school doctor at that - diagnosed my celiac disease. It was almost through luck, so I won't attribute it to an open mind necessarily. Still there are things that drove me to distraction about his practice, so I started to look elsewhere for a GP. I wanted less wait time (less than 1.5 hours, let's start with that, shall we?), a doctor who spent at least 20 minutes with me. I got online, read the reviews, and found one of whom lots and lots of people had written glowingly about, most especially those with celiac disease. The 'experience' of it was so good. So I went. And yes, she did spend a lot of time with me and the wait time was blessedly short. But when I brought up celiac disease and how I had dealt with one doctor in a different city who had dismissed my concerns about gluten-free medication, she seemed to also dismiss that as a concern. She started on about how the gut needs to heal and the implication I was drawing was that once the gut heals that there is less and less need to be concerned about gluten. We did not continue down that path much (I was actually there about something else), but that never stopped tickling me.

So now my choices are: a doctor who spends time with me but seems a little fuzzy about celiac disease (even though those with celiac disease have recommended her!) and a cattle-call doctor who knows about celiac disease but makes me wait 2 hours in his waiting room and sees me for 7 minutes.

Plumbago

Isn't it something? I am floored actually. I realize that celiac has symptoms very similiar to many other diseases however, one by one we have eliminated several and I think I can ake MS off that possible list. I'll just press forward with what I know works and assume my new doc is correct.

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So sorry to hear you're having such issues with these Dr.s. Is there a posibility of seeing a third?

I've been dealing with a positive DX from a GI (through scope) and disbelief of the DX from my PCP. No explanation for my symptoms from the non-believer though.

It's so frustrating to have those in charge of our care having such opposite views! :(

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The thing is she mentioned she is getting better gluten-free. That is not going to happen if the diagnosis is wrong. Sure there might be additional issues going on, but a positive response is a great diagnostic tool. I just read an article that someone posted from an MD in the child thread where the doctor even stated using it as the simplest and very effective diagnostic tool for celiac.

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That's right--A reports she does feel better!

Best "diagnostic" tool? Symptom resolution.

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i liked that article. the doctor was speaking about latent celiac and negative biopsy celiac. He even mentioned how the old way of thinking is no longer valid.

Unless i am mistaken and missing something, i do not think a non-celiac (i do not differentiate celiac vs gluten intolerance, allergy, etc since tests fail so often) will have symptom relief with the removal of gluten. And if that is true, then BINGO.

Doctors can do a lot of emotional damage as well. How many of us have been told to live with this IBS or it was in your head or it was .. Things like that stick with you and hamper recovery.

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Doctors can do a lot of emotional damage as well. How many of us have been told to live with this IBS or it was in your head or it was .. Things like that stick with you and hamper recovery.

Yes, that is so true. The lack of validation of symptoms and suffering, and being written off as a head case by one's doctors, is a pretty shattering experience. And it does discourage one from seeking the truth, whatever the truth may be (but it is not what the doctor is telling you). Given how many people have put doctors in the GOD status box, these patients are being condemned to ill health by the ignorance of their physicians, not to mention the loss of self esteem and other emotional side effects. Good point Chad. Glad I was disillusioned with doctors quite early on :rolleyes:.

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You do not want me to get started on doctors. <_<

They literally kept me ill by misdiagnosing me. I could sue 2 of them, but I won't.

I have no faith in the AMA anymore...except, I DO like my new GI doc, but only because he is celiac-savvy and is willing to listen, follows through on my after care every 3 months--- and actually likes it that I BRING him current articles to read! :) He wants me to speak to celiac groups because he does-- and says these people need to hear your experiences so they see their symptoms are real & they are "not crazy" --as they have been told for years.

Just makes me nuts sometimes.... :rolleyes:

Have any of you read the book How Doctors Think? The first chapter is about a woman who was ill for 15 years. Misdiagnosed and ill with "anorexia and bulimia", thin hair, etc. --so the doctors thought....but she swore she ate plenty! They had her in psychiatric care...but, Guess what she had???

yup....

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So sorry to hear you're having such issues with these Dr.s. Is there a posibility of seeing a third?

I've been dealing with a positive DX from a GI (through scope) and disbelief of the DX from my PCP. No explanation for my symptoms from the non-believer though.

It's so frustrating to have those in charge of our care having such opposite views! :(

Really? This makes e feel a little less frustrated with the situation knowing someone else has been thru the same. I wonder why the hesitation among doc for celiac diagnosis.

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The thing is she mentioned she is getting better gluten-free. That is not going to happen if the diagnosis is wrong. Sure there might be additional issues going on, but a positive response is a great diagnostic tool. I just read an article that someone posted from an MD in the child thread where the doctor even stated using it as the simplest and very effective diagnostic tool for celiac.

Good to know, thank you. I have been racking my brain and researching more, eliminated MS in the process. I do not have diabetes or Lyme disease so I am thinking what else could I have neuro issues, bone loss, malabsorption along with all the gastro issues, and show improvement by taking gluten out of the diet? Something makes no sense. I have read that kidney stones can be related to celiac and I ahve had kidney issues since I was 24, have 2 lodged stones that have beenthere for over 20 years.

I am planning on taking a copy of my original labwork into my new doc and ask for an explanation for all the low marks conected to my immune system, the labwork my old doc did not share with me. The new doc is the one who gave me a diagnosis of celiac and I just want to see if he thinks those lab results coudl indicate anything else.

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You do not want me to get started on doctors. <_<

They literally kept me ill by misdiagnosing me. I could sue 2 of them, but I won't.

I have no faith in the AMA anymore...except, I DO like my new GI doc, but only because he is celiac-savvy and is willing to listen, follows through on my after care every 3 months--- and actually likes it that I BRING him current articles to read! :) He wants me to speak to celiac groups because he does-- and says these people need to hear your experiences so they see their symptoms are real & they are "not crazy" --as they have been told for years.

Just makes me nuts sometimes.... :rolleyes:

Have any of you read the book How Doctors Think? The first chapter is about a woman who was ill for 15 years. Misdiagnosed and ill with "anorexia and bulimia", thin hair, etc. --so the doctors thought....but she swore she ate plenty! They had her in psychiatric care...but, Guess what she had???

yup....

JUST CRAZY! And I do appreciate the sharing. I have asked myself a ton of questions since my appt with old doc. What I do know for sure, is that sine going off gluten there has been more than a change in my digestive system, I contribute my emotional health now to a gluten-free diet. I have been troubled with depression and have had times of great anger and have just losts it and all of tha has improved, definately not over night but I don't tend to sink so low and I can let go better than I was better. I think when gluten really messes with your body, the damage is all too hidden.

Thanks! for all the responses ansd the wonderful support here everyone!! Mushroom is exactly right, what a ride docs can put you thru emotionally. IrishHeart, keep being strong and thank you!

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The thing is she mentioned she is getting better gluten-free. That is not going to happen if the diagnosis is wrong. Sure there might be additional issues going on, but a positive response is a great diagnostic tool. I just read an article that someone posted from an MD in the child thread where the doctor even stated using it as the simplest and very effective diagnostic tool for celiac.

A positive response as a diagnostic tool! Not only does that make perfect sense but it is used all the time. In fact, the true mechanism of action--how it works--in most pharmaceutical drugs in unknown. In a very simplified way, it is hit and miss process. Rogaine (rx to treat baldness) was originally develope to treat hypertension. And if it's not necessarily diagnostic, it's certainly treatment.

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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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