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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.

Celiac Vs. Gluten Intolerance
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19 posts in this topic

One thing I've noticed since my celiac diagnosis is that there seems to be this division between confirmed celiacs and gluten intolerants. I'm new to celiac and I'm only wanting to get well and be well. I've had several conversations with people about the gluten free diet and several of those with gluten intolerance get defensive of their illness. You don't have to prove to me or anyone else that you don't feel well. If the gluten free diet is working for you then by all means continue. We are all in this together and we ned to support each other regardless if the medical community gives you a certain stamp, or not. It took the medical community 34 years to give me any kind of real answer to my issues. Honestly, I've little faith in modern medicine. I don't think we should let someone else confirm If we're ill or not. I don't know if others have experienced or sensed this as well but let's all come together on the war against gluten.

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Thank you for your comments, BZBee.  There is sometimes an "Us vs. them" attitude between the doctor-diagnosed and the self-diagnosed, but really we are all in this gluten mess together, all fighting the same issues the best we can, some with labels on their foreheads and some without.  Those without (and I am one and have sometimes experienced this myself) do sometimes feel that  a diagnosis seems to endow some who have it with a greater sense of right to claim the gluten sensitivity than those who are either NCGI (i.e., tested negative) or who could not get anyone to test them before they stopped eating gluten out of desperation.  But we all have to do what is right for ourselves given our own situations and life sometimes cannot be neatly wrapped up in little packages with labels.  Respect is deserved for each suffering indvidual and as much help as we can give them.

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I agree too.

 

I think the only difference between celiacs and NCGI's is that celiacs have the intestinal damage... and I have no idea why that is such a defining factor when we share every other symptom and inflammatory response. My only guess is that emphasis on celiac disease comes from a focus on autoimmunity (celiacs tend to get more autoimmune diseases) but if you are just looking at how gluten affects our lives, it's about the same. There are a LOT of NCGI's who appear to have much worse and obvious symptoms than I do.

 

Gluten is just bad stuff.  :ph34r:  Too bad it that it tastes good. ;)

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I am one of those celiacs who got the "label" the hard way (years of painful symptoms, complications, etc.)

and even if the docs had not finally confirmed it, I would still have gone gluten-free and never looked back.

 

I do not care much for labels anyway and if gluten makes someone sick, then I believe that person is INTOLERANT of it, period....

and we are all part of one giant spectrum of gluten sensitivity. 

 

Gluten is poison to us. Same boat. Same team---- and the same solution. Don' eat it! 

 

Welcome to the forum, BzBee. :)

Cheers!

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The only reason I know I have an issue with gluten is by accident and how I got my "label" of celiac. I had an accidental biopsy with emergency surgery, otherwise I would still be horribly ill and not know why. I would probably also still be stuffing my face with more and more things like whole grains such as wheat in an attempt to be more more healthy only making myself more sick. Who cares what it is called? If it makes us all sick, it makes us all sick. So what if one of us called celiac because we got a diagnosis and another didn't or couldn't get a diagnosis. Frankly, I don't think it freakin matters. We're all in the same boat together. But I have also noticed that some people on both sides of the fence get super pissy and it seems completely silly to me.

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 But I have also noticed that some people on both sides of the fence get super pissy and it seems completely silly to me.

 

There are a few "celiac elitists" out there  I saw one on another site who made me laugh out loud. (She was like the mean girl in HS who would not let certain people into her special group) It caused the NCGIs to defend themselves and it got ugly. Why should people have to defend their conscious choices to take charge of their own health?

<_< The things people get their panties in a bunch over gives me pause.

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I joined a Facebook group for Celiacs in my area thinking they would be able to provide support, they know the area, the stores etc. the lady running it has been driving my crazy. Someone asked about tax returns as in Canada you can get some of the money back. I mentioned my experiences with the tax people and she kept going on about celiac this and celiac that. Which unfortunately is the way the tax people are, it's either you have celiac disease or no issue with gluten all. She seems to be unaware of the term gluten intolerant, it's all or nothing. When you mention ncgi she goes off about celiac disease.

I got mad and let rip, telling her that not everyone is (un)lucky enough to get a clear cut diagnosis, the testing is not always accurate and in our case when you have young kids seriously ill you can't wait and hope for a diagnosis you sometimes have to say screw it and go with your gut. She does not get that celiac disease and ncgi is not a black and white issue, and belittles the people that are self diagnosed.

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I do think it's silly that these division lines exist. We've all been there when we know there is something wrong with our body and a stranger tells you how you really feel. No one knows your body like you do. I also feel that now I do have a label everything will be contributed to Celiac Disease. Instead of trying to investigate other causes for certain symptoms. Most of the information I've received for living a gluten free lifestyle has come from gluten intolerant's, and I appreciate the help, advice, and support.

Remember the old Dr. Joke.

Patient: "dr. My arm hurts when I move it this way."

Dr.: " Then don't move it that way."

If gluten hurts you, don't eat it!

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I so agree with you!  (And welcome, by the way.)

 

I just read an article this morning that ended with this: "Celiac disease can be diagnosed with a simple blood test. It's possible some people have a mild intolerance to gluten, but most doctors say if you don't have celiac disease, you don't need to avoid gluten."

 

Huh??

 

I am so glad my GI is more enlightened. He is absolutely convinced I have gluten intolerance, even after all my celiac tests were negative. He even warned me about cross contamination the other day, which made me feel great that he isn't doubting the diagnosis.

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That's an enlightened doc , for sure!

 

If Dr. Fasano ( who in my mind is the celiac guru) says gluten sensitivity is a broad spectrum, with celiac at the extreme end--then

why would anyone in the medical community think otherwise? They are the "unenlightened", that's why.

 

There will always be nay-sayers, but to me, anyone who feels remarkably better off gluten, with symptom-resolution--is likely gluten intolerant to some degree.

Why else would it be so apparent?

IMHO

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Had any doctor thought to test me for celiac disease at any time in my first 43 years I would have likely tested negative - when finally diagnosed all of my antibodies were positive - yet weakly in most cases. All of my children and grands tested sero-neg with the exception of oldest that only had one positive DGP.

I don't care what we call it - gluten was destroying our bodies - so four of us now have "official" diagnosis and two remain labeled NGCI - will any of us touch gluten ever again - we would rather eat ground glass and have suggested to one GI that perhaps he should eat just a little bit of glass each day until we can measure the damage it "may" cause in his digestive system.

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we would rather eat ground glass and have suggested to one GI that perhaps he should eat just a little bit of glass each day until we can measure the damage it "may" cause in his digestive system.

 

Perfect analogy (and pretty much what glutening feels like for me, too)!

 

And for the OP — one thing I love about this forum is no one judges the others based on who has an official diagnosis and who doesn't. I think many of those here WITH a diagnosis remember what a long hard road it was to get one!

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 I think many of those here WITH a diagnosis remember what a long hard road it was to get one!

 

That's the truth, Gatita!!. 

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That's the truth, Gatita!!. 

 

Ditto :)

 

PS...Welcome BZBee!!!

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this is a great thread. I agree it does not matter to us if we have a confirmed diagnosis. we know our bodies and that's what counts.

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I got really lucky in finding my diagnoses also. I was getting a full work-up from a back specialist for my extreme muscle spasms. Muscle relaxers and naproxen weren't even touching it. The doc found a softball size bubble in my stomach and just so happen to suggest I might be gluten Intolerant. So I was like "what is that?" and "so what are you gonna do for my back?". I started reading about celiac symptoms and thought I'm not crazy after all about all of my random issues. GI doc confirmed Celiac with endoscopy biopsy, but I couldn't keep consuming gluten before my blood test which was negative because of that. I got all children tested and my oldest child has extreme Gluten Intolerance. Extreme meaning he tested very high for intolerance. We are still fighting his vitamin Deficiencies and Accelerated OCD from the lack iron and vitamin D. He struggles with fatigue and irritability daily. We are both on the right track to wellness now and hope for the best.

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My daughter has two blood tests that will only claim a "sensitivity."  Her doctor let her decide if she wanted the more invasive procedure to determine damage/inflammation.  She declined the biopsy.  He said either way she MUST eliminate all gluten.  We have. :)

 

It's family members that scoff.  Even with the two separate blood tests showing positive results. 

 

Since going gluten-free (I joined her in support -- I am a confirmed IBS sufferer--I did have that awful scope), we are MUCH healthier.  Took a couple of hard long years to get here but --  YAY.  IT WORKS!!

 

Best of health and good vibes your way.  Gluten is a mess.  Don't deal with it :)

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They (them researcher-heads) only confirmed that non-celiac wheat sensitivity is real last year (2012).  They think it is related more to the innate immune system.  Celiac is a response by the adaptive immune system.  They think Crohn's is also a response by the innate immune system.  So it is still an immune response, just not the same immune response.  The long term or short term ramifications of non-celiac wheat sensitivity are unknown right now.  Other than the immediate symptoms that is.  Heck, they didn't even admit it existed until last year.  So, it's not like they have any real idea what it does to people over time.  It might turn them into little green men with antennas for all we know.  Well, probably not.  But we just don't know that it is less serious than celiac disease right now.

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Getting diagnosed on paper isn't at all important other than one reason (you need to, to get help from a doctor). Problem is by the time you get a test you wouldn't have eaten gluten in years anyway.. why? because people tend not to eat things that make them sick in the guts.. maybe a couple times,, maybe ten years like me lol but eventually you will say enough is enough. In that case you can still have the gene test like I had and I had all the right genes, no anti bodies though as I'd been off gluten for 3 years.

 

My doctor refers to gluten as "poison" when talking to me and isn't that the truth. He would never ask me to eat it in order to show up on the anti body test because it's already dam near killing me from previous damage as it is.

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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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