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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.

Severe Diarrhea Cant Stop It.
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23 posts in this topic

I am new at this and have had alot of malabsorbation problems plus severe diarrea. I have lost 15 or more pounds and now down to 92 pounds with diarrea and just came from an ER visit last friday. They had me take 3 days of antibotics and said that it would stop the diarrea. I have had this for a month now and am off all gluten and wheat etc. I have ran out of insurance and on vitamin supplements but still sick. I am going to a county hosiptal for help with a new doctor on Monday. I cant get this to stop and 3 years ago I was so sick I got down to 69 pounds ... If you think you could help please let me know because all the stuff I am reading is getting a little over stimulanting. Thank you Kim Pelton

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I am new at this and have had alot of malabsorbation problems plus severe diarrea. I have lost 15 or more pounds and now down to 92 pounds with diarrea and just came from an ER visit last friday. They had me take 3 days of antibotics and said that it would stop the diarrea. I have had this for a month now and am off all gluten and wheat etc. I have ran out of insurance and on vitamin supplements but still sick. I am going to a county hosiptal for help with a new doctor on Monday. I cant get this to stop and 3 years ago I was so sick I got down to 69 pounds ... If you think you could help please let me know because all the stuff I am reading is getting a little over stimulanting. Thank you Kim Pelton

Hi Kim :)

Have you been tested for celiac disease??? (blood tests or endoscopy with biopsies)

Have you had any other bowel diseases ruled out? (e.g Crohns disease)

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Here I am on a Celiac Sprue site trying to find some questions and don't even know where to start. My name is Kim and I am 48 and cant seem to find any help with this disease. I was diagnosed in 2005 with Celiac Sprue and at that time in the hospital weighing 69 pounds. Took my gall bladder out and cant remember everything that went on but now here I am again with severe diarrhea losing weight one week at a time. Doctors have given me antibotics and still no luck plus have no insurance left from all the doctor visits. I am going to the county hospital on Monday to start new Doctors but if you have a way to help stop this diarrhea or relieve it alittle please let me know. I am on a gluten free diet and only eating meat, veggies and fruit. Right now not eating very much because I am to scared too. NEED YOUR HELP Kim

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Have you tried Imodium? Many of us consider it a life-saver.

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Agree with peter on the Immodium. That's not much help, but I hope you feel better soon.

Susan

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Have you been tested for lactose intolerant?? That usually comes with having celiac disease. I hope you get your self tested for celiac disease. And you are describing alot of the sysmptoms I had before I realized I can't have dairy any more. Take the dairy test because of your insurance you speak of. Cut all dairy out of your diet for a week or two and see how your body does with out it. If it stops all your symptoms that is your answer.

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Have you tried Imodium? Many of us consider it a life-saver.

Yes I live on the stuff. I quess I will go to the doc on monday and find out what else I can do. They also put me on belladonna which I hate to take because of the drug relation. I really hate meds and would like to stay out of that realm. Thank you so much for answering I am really feeling helpless

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Here I am on a Celiac Sprue site trying to find some questions and don't even know where to start. My name is Kim and I am 48 and cant seem to find any help with this disease. I was diagnosed in 2005 with Celiac Sprue and at that time in the hospital weighing 69 pounds. Took my gall bladder out and cant remember everything that went on but now here I am again with severe diarrhea losing weight one week at a time. Doctors have given me antibotics and still no luck plus have no insurance left from all the doctor visits. I am going to the county hospital on Monday to start new Doctors but if you have a way to help stop this diarrhea or relieve it alittle please let me know. I am on a gluten free diet and only eating meat, veggies and fruit. Right now not eating very much because I am to scared too. NEED YOUR HELP Kim

Hi Kim

I saw an article a few weeks back that a lot of people with celiac also are lactose intolerant, maybe this is the case for you

Hope you feel better soon (hugs)

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Fish, rice if you can do it for some fibre, applesauce, no raw fruits or vegetables, cook everything. Make it very easily digestible; meat is not easy. See if that helps.

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Yes I live on the stuff. I quess I will go to the doc on monday and find out what else I can do. They also put me on belladonna which I hate to take because of the drug relation. I really hate meds and would like to stay out of that realm. Thank you so much for answering I am really feeling helpless

If you're living on immodium and still having severe diarrhea, my guess would be Chron's (it's possible to have both celiac disease AND Chron's). Have you looked up the symptoms?

I agree with mushroom about keeping your diet very simple while you're waiting... are you also drinking enough water? :(

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Hi Kim :)

Have you been tested for celiac disease??? (blood tests or endoscopy with biopsies)

Have you had any other bowel diseases ruled out? (e.g Crohns disease)

Yes they ran every test imaginable and I have Celiac Sprue. It has been 5 years since I have had very much trouble but now it is like it was when they diagnosed me. I haven't been checked for Crohn's or anything else. To be honest I hate the Doctors office thing and try to help myself with things like Imodium etc...... But I cant do this alone anymore. It is causing me to just stay home and now I am on leave of absence from work. I am seeing a doctor on Monday. Also have you ever had alot of sound in your stomach like gurgling but it never stops. Its very loud and is almost continuous at all times.

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Have you been tested for lactose intolerant?? That usually comes with having celiac disease. I hope you get your self tested for celiac disease. And you are describing alot of the sysmptoms I had before I realized I can't have dairy any more. Take the dairy test because of your insurance you speak of. Cut all dairy out of your diet for a week or two and see how your body does with out it. If it stops all your symptoms that is your answer.

Thank you for answering and I will try what you say on the dairy for 2 weeks. I love milk but not at the expense of my health. I had the tests for celiac and they were positive but haven't had anymore problems until now.

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Hi Kim

I saw an article a few weeks back that a lot of people with celiac also are lactose intolerant, maybe this is the case for you

Hope you feel better soon (hugs)

I am going to try the lactose free and see if that helps. Thank you so much for replying

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If you're living on immodium and still having severe diarrhea, my guess would be Chron's (it's possible to have both celiac disease AND Chron's). Have you looked up the symptoms?

I agree with mushroom about keeping your diet very simple while you're waiting... are you also drinking enough water? :(

No I have just resently started drinking water supplements but tonight I went out and bought bottle water and am starting to drink alot. I have never liked water but I am over that....haha thank you

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This may sound simplistic, but have you been tested for rotavirus or any other virus or bacteria that commonly causes diarrhea? It could be an illness, not related to the celiac sprue.

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while other food sensitivities could cause it i really would think it is something more serious. while i dont know much about chrons i would think that could be it. i know one person that i had in a class in Highschool that i TA'ed who had it and my freshmen year roommates sister had it. i know the kid that was in my class had to be on a feeding tube with special foods injected into it and that was the only thing he "ate" for 3-6 months. not exactly the best thing to hear but if, IF, chrons is what is causing it that is what may need to be done to help your body heal.

it is possible that you had celiac for such a long time undiagnosed that it caused so much damage to your body that you have not healed from the gluten-free diet, it is very rare that this will happen and usually, from my understanding, it is seen more so in older people than you.

since this is soooooo bad you basically need to try an elimination diet probably, and if that still doesnt help look to other illness or infection

i understand how bad you can feel when you have the big D for such a long time since that was the thing that caused my alternative medicine person to investigate more and figure out it wa probably celiac, so i hope you can get this resolved

-matt

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I am new at this and have had alot of malabsorbation problems plus severe diarrea. I have lost 15 or more pounds and now down to 92 pounds with diarrea and just came from an ER visit last friday. They had me take 3 days of antibotics and said that it would stop the diarrea. I have had this for a month now and am off all gluten and wheat etc. I have ran out of insurance and on vitamin supplements but still sick. I am going to a county hosiptal for help with a new doctor on Monday. I cant get this to stop and 3 years ago I was so sick I got down to 69 pounds ... If you think you could help please let me know because all the stuff I am reading is getting a little over stimulanting. Thank you Kim Pelton
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So how are you doing now, Kim? Your post was from May but it looks like you're back. Have you had any improvement?

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PLEASE DO NOT TAKE ANYTHING TO STOP THE DIARRHEA: HERE IS WHY

You have been on antibiotics. They can cause an overgrowth of c. difficile a toxin that can be deadly. I know this because I almost passed on years ago from this problem. Had I taked immodium I would have died because it would have let all the c. difficile toxins stay in my system.

I ended up VERY seriously ill in the hospital for a week taking the strongest antibiotic (vancomycin) to get rid of the toxin.

DIARRHEA AFTER ANTIBIOTIC USE IS NOT ALWAYS HARMLESS AND MUST BE INVESTIGATED

Not trying to scare you but only want to help.......

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I am new at this and have had alot of malabsorbation problems plus severe diarrea. I have lost 15 or more pounds and now down to 92 pounds with diarrea and just came from an ER visit last friday. They had me take 3 days of antibotics and said that it would stop the diarrea. I have had this for a month now and am off all gluten and wheat etc. I have ran out of insurance and on vitamin supplements but still sick. I am going to a county hosiptal for help with a new doctor on Monday. I cant get this to stop and 3 years ago I was so sick I got down to 69 pounds ... If you think you could help please let me know because all the stuff I am reading is getting a little over stimulanting. Thank you Kim Pelton

Hi Kim

I am a severe celiac and I have had problems post diagnosis similar to yours. I am 6'5" and was down to 130 lbs possibly less at my lowest point. I understand you have insurance issues in the states but if you can afford it I use PREDNISONE to stop my flare ups. Some people will say I am wrong doing this, but I can't afford to lose any weight by letting the diahorrea run it's course. Prednisone is NOT a nice drug to use, there are long term effects if you use it for longer then 5 days at a time. But I have worked closely with my Doctor to figure out the best way to treat the situation.

Best Wishes

Mike Irwin

P.S. I am up to 155 lbs through hard work

Also becareful going through a health food store for "natural remedies". Some stores out there are just there to sell product. And if they know nothing about celiac disease then who knows what ur getting.DO NOT BE AFRAID of asking them basic questions to see if they know what celiac disease is.

Best of Luck

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I am new at this and have had alot of malabsorbation problems plus severe diarrea. I have lost 15 or more pounds and now down to 92 pounds with diarrea and just came from an ER visit last friday. They had me take 3 days of antibotics and said that it would stop the diarrea. I have had this for a month now and am off all gluten and wheat etc. I have ran out of insurance and on vitamin supplements but still sick. I am going to a county hosiptal for help with a new doctor on Monday. I cant get this to stop and 3 years ago I was so sick I got down to 69 pounds ... If you think you could help please let me know because all the stuff I am reading is getting a little over stimulanting. Thank you Kim Pelton

Kim,

I had the same unrelenting diarrea and other symptoms (nausea, weakness, etc.) and was down to 89 lb. After four hospital admissions in less than six months, I went to the Harvard Medical Center in Boston -- Beth Israel Hospital, Celiac Research Center -- and confirmed that I had REFRACTORY Celiac Sprue. That is a rare type of Celiac disease that does not respond to the gluten-free diet. This can be fatal if you don't get it under control. The doctor from Harvard put me on 8 capsules of Pentasa daily (4 AM and 4 PM) and on Codene Sulfate , 60 mg. 4 times a day. The Pentasa was for inflamation (which did not show up on any tests) and the Codene Sulfate was for the diarrea. FINALLY, the diarrea stopped. I went from 240 mg. of Codene down to just 60 mg. now (30 mg. twice a day) -- it took almost a year for this progress, and from 8 Pentasa capsules to 4 capsules daily -- I'm now 113 lbs. It was like a miracle. Note that the Codene is a narcotic/controlled substance so it takes a special prescription from the doctor -- is not addictive when used medically. ASK your doctors about this treatment. The Harvard doctor was Dr. C. Kelly -- a nationally recognized Celiac expert. I do have to follow a strict gluten-free diet, but it now works for me!

Good luck.

Edie H.

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There is a medication they give to people with microscopic colitis to help them control their diarrhea. It's called entecort. The most common symptom of microscopic colitis is constant diarrhea. You might want to check out the MC support board (link below) and ask some questions there. I'd recommend having a colonscopy and biopsy to check for MC. Lots of drs don't look for it.

http://www.perskyfarms.com/phpBB2/index.ph...41e8b6b4d3b1658

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I had it for months following the diagnoses of my diabetes. I do not have celiac and didn't know of my food allergies back then. I drank a lot of weak black tea, chicken broth and of course, water. Ate mostly chicken and rice, boiled eggs, cottage cheese, some applesauce and did eat white bread, toasted, with no butter or margarine. Perhaps you could eat rice or tapioca bread, toasted, instead? Bananas would also be good if you can handle the carbs. I can't. And my SIL who is a nurse also recommends plain yogurt with active cultures. I just can't stand yogurt!

Mine was so bad I couldn't stray far from the bathroom or leave the house. The Dr. gave me something to make my stomach feel more settled, but it didn't work. I tried Imodium and Kaopectate. They didn't help.

I know there are prescription meds you can take. My mom used to take something called Lomotil. However, they are difficult to get these days and I think they are considered a controlled substance.

I still don't know what caused my problem, but one day it just went away.

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