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Bleeding
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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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