• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Guest figling

Bleeding

Rate this topic

Recommended Posts

Guest figling

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites
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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Guest figling

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

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites
Guest figling

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

Share this post


Link to post
Share on other sites


Ads by Google:


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!

Share this post


Link to post
Share on other sites
Guest figling

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

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites


Ads by Google:


Guest figling

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Guest figling

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

Share this post


Link to post
Share on other sites
Guest figling

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

Share this post


Link to post
Share on other sites


Ads by Google:


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)

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,429
    • Total Posts
      941,224
  • Member Statistics

    • Total Members
      66,358
    • Most Online
      3,093

    Newest Member
    Marcos
    Joined
  • Popular Now

  • Topics

  • Posts

    • Don't go gluten free until you find out if they want you to get an endoscopy which they should schedule. Eat gluten every single day until the endoscopy is done. 
    • Hi Johno,  fellow brit here. Crappy uk medical experience is par for the course unfortunately where this is concerned, so don't expect too much help from that sphere. Although with a positive diagnosis you should be eligible for dietician advice and monitoring of nutrient levels.  First, 4 month in is still early days. If you have cracked the diet and are not suffering cross contamination (v easily done) then you still have at least 2 and maybe 8 months of healing to come. So it's little early yet to be thinking that your celiac isn't responding to he diet.  1. Sleep issues. You don't mention what these are, but yes, celiac is definitely linked to sleep disorders. In fact it's linked with just about everything due to the way it impacts the body. Almost all systems can be affected. You may also find if the sleep issues are neurological in origin that they will be the last to go on the diet. I find neuro symptoms are the first symptom and last to go. Note also that although Gastrointestinal is commonly percieved as the major celiac presenting symptom, this isn't the case. So your not alone in not having major tummy issues.  It's not caused by mentality but it sure as hell affects it.  2. How long have you got? I tested negative so I'm in the ncgs category and some won't even accept that my condition exists. Even understanding of celiac is still developing. Research is ongoing as is levels of incidence. It's up 4 times since the 1950s so something is going on, better testing is perhaps revealing more. you have positive diagnosis, so you have good evidence to keep you strict on the diet. Eat as well as you can. Try to keep gluten free processed foods to  minimum  and eat fresh whole foods where possible. Treat this first 6 months as a one off healing period and help your body as much as possible. Take some good quality supplements, regardless of what the tests are saying. B complex, magnesium and a multivitamin are a good safety net if nothing else.  Read the newbie thread on this site and double check your kitchen etc for possible cross contamination sources. Could be seasoning, shared butter etc. You need to develop a sense of vigilance about this whilst staying on the right side of paranoia! finally, a warm welcome to a good site  
    • A freshly baked roll is as delightful as a soft, fluffy cloud on a summer's day. What gives bread much of its appealing texture is gluten, a group of proteins found in wheat, rye and barley. But in people with a serious autoimmune disorder called celiac disease, gluten damages the small intestine. View the full article
    • This disease is like a chameleon and seems to change symptoms on people and everyone is a bit different, heck some have no symptoms til it almost kills them with secondary issues like cancer, lymphoma, rupturing the intestines etc.
      I did not have ht classic D but constipation, I also had a bunch of other signs that I had grown into and considered normal. My big thing was neurological side of it. I had gluten ataxia where it attacked my brain and nervous system compounded by b vitamin deficiency, I had learned about the magnesium deficiency months earlier and was supplementing for that part of it. Anyway my health was getting bad, tired, random gut pains, brain looping on the same thought over and over driving me mad, bouts of anger and rage. I was running a bucket list before they got it diagnosed.
      Wish it was done earlier my immune system developed other issues like corn allergies, bunch of intolerance then years later learned I had also developed Ulcerative Colitis.

      There are some mental aspects to it, one part is the effects of vitamin deficiency like the b-vitamins, can be very detrimental to you mental health. Various others have cumulative effects or require others nutrients to work right. SO you have to find your balance and supplement til you heal, or sometimes for life. 

      There is also odd fight or flight responses I have noticed from me and others, your body starts to associate gluten and certain foods with discomfort, once off them starting to smell them or thing they might have contaminated your food brings out a panic like fight or flight as you subconsciously attribute that smell, thought, food, etc. with pain and discomfort.

      This disease is really not well understood, contradicitve....hell it is the only disease where you have to poison yourself to the point of causing major damage for them to learn you have it.....like "Here eat this poison so we can see if it makes you sick, but you have to be really sick for us to know it is this poison that makes you sick as it only effects some people"
    • I just quoted a little part but really much of your experiences could be mine. I won't bore you with it all, but chest pains came from 19, herniated disk came at 21, followed by 20 years of sciatic back pain. Depression at or about the same time. Brain fog little later. There was lots more, primarily neurological. Internally I expected to die in my 30s or maybe reach 40.  Nothing shifted any of it until I changed my diet and inadvertently reduced my gluten consumption. I went back on gluten for testing, confident I'd found my cause only to test negative. I did keep a diary however and that helped me and my consultant decide that gluten was off the menu for life.  Couple of things which may be helpful. There is more than one blood test. You may find that one of the others works for you. I never got them all and wonder sometimes if I would have tested positive on another one. You can post your results here if you would like some help in interpreting them. you mentions feeling relief when you ate less gluten. Are you sure you were eating it up to the test? Removing it may have altered the results. Finally, once testing is complete, go properly gluten free even if you tested negative on scope and blood. For some people, they test negative but still react. That could be you and give how closely some of my symptoms match to yours it may be the case. best of luck, you will find this site full of support and useful info. You are not alone in this. matt  
  • Upcoming Events