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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.

Bleeding
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17 posts in this topic

I was diagnosed years ago with IBS and gastritis but have often wondered if I really have celiac disease. I have multiple markers for having it, but the gluten antibody test was negative, and even though my gastro-doc scoped me everywhere, he never bothered doing biopsies.

Now, my PCP has sent me to another gastro-doc (supposedly a better one) because he's convinced that my symptoms actually come from something autoimmune. This is because we've discovered that a number of medications have triggered prolonged and significant (but painless) rectal bleeding.

I'm going to undergo scopes next week, and the doc is planning on doing multiple biopsies throughout my GI tract, but I wondered if anybody here has ever had this bleeding problem?

Judy

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That sounds more like colitis to me than a symptom of celiac disease. I think some people here have probably experienced this b/c a lot of us have other GI disorder, but I don't think this is a symptom of celiac disease.

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This is because we've discovered that a number of medications have triggered prolonged and significant (but painless) rectal bleeding.

The bleeding may be due to a number of things such as hemroids, ulcerative colitis, chron's, and I think some meds may cause bleeding. I believe that I experienced bleeding while taking one of the many exciting medications I got to try. I think the bleeding was one of the many reasons I stopped taking it.

If you are celiac it will show up in the biopsies. Make sure they take at least 4-5!

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If I get glutened pretty badly and have a lot of diarrhea, I have the bleeding problem. Once things settle back down again, it goes away. Mine is always bright and not black so it is not coming from too far up the pipes. It is also a family problem, so I am not certain if it is celiac disease or some other issue.

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I think I've finally found a really thorough, caring doctor. She says she's going to take multiple biopsies along the entire GI tract. She also sent blood off to Prometheus Labs in San Diego, which do much more extensive IBD and celiac screenings than are available locally. Have any of you had experience with them? Anyway, she's considered the best in the area I live in, so I feel like if this is due to some organic problem I have, she's the one that will figure it out!

I already have been diagnosed with osteoporosis, hypothyroid, and mitral valve prolapse, so I already have conditions that frequently come with celiac disease. However, it sounds like you guys don't think that having it would predispose a person to rectal bleeding in itself, so I'm curious about the other co-existing GI conditions that others have. For example, is it more common for people with gluten intolerance to also have Crohn's?

Thank you all so much for your feedback!

Judy

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Judy:

I did not say that I don't think the celiac disease has anything to do with the bleeding, just that it does not seem to automatically go with it. There are many other gi problems that seem to occur more often in celiac disease patients. I am glad you have a doc who seems to be caring and thorough. Maybe she will figure out which ones impact you. The bleeding can be a scary symptom.

I do not have experience with that particular lab. Some are definitely better than others.

Hopefully you will find that many of your other issues mediate over time after going gluten-free. My osteopenia has stabilized well as have my FMS, hypothyroidism, and neuropathy. I no longer have massive sinus and ear infections regularly either. The female stuff has leveled out also. It is almost as though my body was screaming for help from every direction. I have been gluten-free for two years now and am not "well" because of all the damage, but it is much better than it has been for a decade.

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Donna,

Thanks for the moral support. It sounds like going gluten-free is working for you, and no matter what happens with my diagnosis, I'm going to give it a trial myself. I'll let you know what happens after the test results come in.

Judy

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My husband used to suffer from bleeding before diagnosis of celiac disease.We now think it was made worse by the 'nsaids' (non-steriodal anti inflammatories)he was taking for rheumatoid arthritis.Avoids them now.

There are people out there with chron's and coeliac disease.Once you got one auto-immune disease,your more likely to develop another .Chron's tends to occur more in the large bowel(commonest symptom bleeding and pain)whereas coeliac is in the small bowel.

Hope you get some answers soon.Good luck!

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Thank you all for your feedback and support! It sounds like celiac disease could make a person more susceptible both to other gastro disorders and to the effects of medication. I would just so much like for this to be celiac and not Crohn's! Hopefully I'll have some test results within the next couple of weeks to share.

Thank you all again!

Judy

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I would just so much like for this to be celiac and not Crohn's!
at least with celiac you won't have to be on any nasty meds. I know someone with chron's and the med's sound worse than the disease :blink:

I just recently read that celiac can lead to intestinal hemorraging, which could be the cause of blood.

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Ohmigosh, Carrie! Where did you read it? I would be so happy if this were celiac and not an IBD! Of course, I guess it could end up being "none of the above". I'm trying to be patient!

I had my scopes yesterday, and they took a bunch of biopsies. It sounds like at least 7, from the whole gastrointestinal tract. The doc definitely saw GERD this time; last time I had an upper it was gastritis, but not this time.. So it's back to taking Aciphex for awhile. Sigh. I don't know if celiac people have more of these stomach acid things. Does anybody else know?

Judy

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I read it in Wheat Free Worry Free by Danna Korn on page 34.

"internal hemorrhaging" is on a list of atypical symtoms and associated conditions of celiac disease.

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I had the bleeding, too. After going glutenfree it never showed up anymore. I'm so happy :D . I hope they find out, what it is with you.

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Thank everybody so much! I'm going to check out that book, Carrie, and good luck with your tournament, Stef! I'm glad your hub is doing better without the gluten, Nikki. Y'all are giving me hope that maybe it'll work for me.

I'll let you all know when I get the path and blood test reports. Also, I'm scheduled to see a hematologist Monday, so maybe he'll be able to give some insights into it also.

No matter what the test results say, though, I'm going to give gluten free a trial and see if it makes a difference..

Judy

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Just thought I ought to let you guys know that my celiac panel came out negative. I'm going to try going gluten-free for a time to see if I feel better anyway, but my doc says the tests are 97% accurate, and it doesn't look like gluten is the source of the bleed. Thanks to everyone for the support and helping me to keep my anxiety level under control for a few days!

Judy

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I hope you feel better soon and get the right diagnosis... and yes the gluten-free diet is worth a try. You may be sensitive to gluten or wheat.

B)

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I'd definitely try going glutenfree. It might still help you, cause my oppinion is, that wheat isn't good for humans anyway. Just because manufacturers say it's good, we shouldn't believe it. They just say it's good, cause they can earn a lot of money with wheat. It's cheap!

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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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