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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.

Constant Unsettled Stomach No Matter What
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15 posts in this topic

I've had celiac for about 3 years and i have a constant unsettled stomach. When i wasnt diagnosed i was eating gluten obviously because i had no idea, i was 15 at the time but then i got diagnosed and stopped completely. For the first two weeks my stomach was really normal you know? like no stomach aches no random trips to the toilet and no i wasnt eating anything different i was eating everything gluten free nothing out of the ordinary and nothing in specific. After that two weeks my stomach just went down hill like i wasnt eating gluten anymore but i was. Now everyone tells me it takes awhile for your stomach to heal, but im a 18 year old kid and i have to plan my life on how my stomach is feeling. I could eat the same food one night and have a good stomach the next but then eat the same thing then be grounded because i'll have stomach aches and have to constantly go toilet. To put it simply sometimes i get diarrhea for no reason  at all. Everyone says maybe i'm sensitive to other foods and should keep a diary but i eat the same food and feel good then the next day if i eat the same food ill get diarrhea or something or an unsettled, uneasy stomach. 

Sorry for the lengthy post, but please this is ruining my life. I dont care if i have to occasionally watch my friends eat at restaurants while drooling but when i get celiac i was under the impression that when you eat gluten free you will have regular stool and normal bowel movements..... and notice when your about to need to go toilet. This is kind of ruining my life, no doctors can help and yes i've been to dietitians. I would really much appreciate a reply because i don't know what to do. 

BTW: IBS medicines don't work, i have tried celiac enzymes, no improvement.

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Did you check your hand soaps and lotions to make sure they're gluten free? What was the last result of your blood tests? Have your antibodies gone down? It could be another intolerance. I know that I'm also lactose intolerant but I can manage small amounts of dairy, but if I have too much I get an upset stomach and the big D. So you might eat a large amount of something your intolerant to on a certain day to give you that reaction. Just a thought.

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Did you check your hand soaps and lotions to make sure they're gluten free? What was the last result of your blood tests? Have your antibodies gone down? It could be another intolerance. I know that I'm also lactose intolerant but I can manage small amounts of dairy, but if I have too much I get an upset stomach and the big D. So you might eat a large amount of something your intolerant to on a certain day to give you that reaction. Just a thought.

last time i had a blood test the doctor said the antibodies have gone down so much that he didnt need to schedule another blood test with me. Ive been checked for fructose intolerance, dairy intolerance but results come back saying i'm not either.

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your reactions may be more delayed then the time span you have checked.

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In my case, I felt all better just stopping eating bread and Cheerios.  Then I started noticing reactions to lower levels of gluten.  I researched where else gluten might be and I'd feel all better and then start reacting to even lower levels.  Then I'd research more.  This went on for some time until my diet is mainly unprocessed.  If you are like me, you may be reacting to gluten cross contamination.  Are you living at home?  Does your family eat gluten?  Could you bet getting cross contamination there?  Do you eat in restaurants and could cross contamination there be a problem?  Do you eat a lot of gluten-free processed foods?  Small amounts of cross contamination can build up.  

 

Try more produce and unprocessed meats and see if that helps.  I wish you the best.

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Sorry to hear that.  I can relate.  I am 54.  I have random stomach things and I don't always know what is going on.  But I do know now that I am intolerant to things I never would have dreamed of.  Lovage, cloves, mint, thyme, tarragon, chamomile, coffee...  Plus a whole slew of foods.

 

You might try eating very plain foods for a while.  No seasonings except perhaps for salt and pepper.  Or maybe just salt because I suppose pepper could cause a problem.  Watch any and all cosmetics you use.  Try brushing your teeth with baking soda.  Try something generic like castile soap on your body and hair.  See if that helps.  Then if it does, try adding things back in slowly to see what you react to.

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For me, next to gluten, I found I don`t digest rice well. Effects hit me up to 48 hours later sometimes. It can be confusing. I also avoid sugar.

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I'm kind of going threw the same thing, I was doing great for awhile and then I would have a problem with a meal that I eat frequently with no problems. I could literally eat a safe meal on Monday and then eat the exact same meal on Friday and be sick for the rest of the week. It's been like this for a couple months, then I started taking B complex and got probiotics from Young Living and so far I have been better. I started thinking maybe it was a deficiency, since Celiac pretty much promises us that. So I looked it up and vit B deficiency can cause upset stomach and D. Since I have been taking these, everyday gets better, my stomach doesn't hurt anymore, no more nausea or D (crosses fingers) hope this helps.

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I'm kind of going threw the same thing, I was doing great for awhile and then I would have a problem with a meal that I eat frequently with no problems. I could literally eat a safe meal on Monday and then eat the exact same meal on Friday and be sick for the rest of the week. It's been like this for a couple months, then I started taking B complex and got probiotics from Young Living and so far I have been better. I started thinking maybe it was a deficiency, since Celiac pretty much promises us that. So I looked it up and vit B deficiency can cause upset stomach and D. Since I have been taking these, everyday gets better, my stomach doesn't hurt anymore, no more nausea or D (crosses fingers) hope this helps.

Interesting!  I was having problems that seemed to be caused by *excess* B vitamins.  I take quite a few supplements and just kept adding and adding based on things that I read or that people told me to do.  Only after the Dr. wanted to put me on Metanx for numbness, did I take notice.  I can not take it as it contains dairy but it also contains very high levels of B vitamins.  I was particularly concerned about B6 because I know that excess can cause neuropathy, which I already have.  I was like...  Why would he put me on more when I already take so many?  Then I realized that he probably wasn't looking at my chart and didn't know how much I already took.  So I added up the numbers and whoa!  I was taking mega doses of all but B6.  And too much B can cause the same sort of symptoms as too little.  So I stopped taking all of the individual ones except for B12 and only because I take Metformin and that can deplete it.  But I backed down from 1,000 mg to 500.  Dr. had told me to take 1,000 mg daily but...  Again, I don't think he knew of the multi and the B and C Complex.  I do still take those.

 

Then a couple of weeks ago as I was doing up my pills, I mistook the Pantothenic Acid for HCL.  I put it in the morning and night compartments.  But the capsules look the same as many others.  Wouldn't be able to pick them out.  I did look up the dose and it wasn't in the danger range.  But...  My blood sugar was raised for two weeks.  Now I am not taking it and blood sugar is mostly in normal range again.

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Hmmm, do you take any probiotics? I started the B and the probiotics at the same time. 

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I also sometimes get random problems, like being fine after you eat a perfectly safe meal at home, but feeling rotten after the leftovers, etc. I've been trying to "rotate" my foods somewhat, not eat too much of the same thing at once or the next day. I'm not strict about it, but it does seem to help a bit. I also take digestive enzymes with meals which helps.

 

If you're having problems all the time, then best to look at possible sources of cross-contamination, and then figure out if you might not have another intolerance or something else going on.

 

in any case, good luck!

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Hmmm, do you take any probiotics? I started the B and the probiotics at the same time. 

 Yes.  I take Culturelle.  The dairy free kind.

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i was under the impression that when you eat gluten free you will have regular stool and normal bowel movements..... and notice when your about to need to go toilet.

 

it isn't always so simple.   Try reducing your diet back to the basics and really see from there what upsets your stomach and what doesnt.   For example, starting tomorrow just eat meat.   Plain meat.   Hamburger, no ketchup, no seasoning, no bun, no gluten free bun, no lettuce, no onion.    Eat one for breakfast lunch and dinner.    Feel okay?    The next day you can add potato.    Just plain baked potato.    no toppings, no salt, no chives, nothing.    Add literally one thing at a time back to your diet and see what the tipping point is for you.   

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don't worry about the B12, you are not absorbing what is in the multi any way....are you taking it (the plain B12) on an empty stomach?

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last time i had a blood test the doctor said the antibodies have gone down so much that he didnt need to schedule another blood test with me. Ive been checked for fructose intolerance, dairy intolerance but results come back saying i'm not either.

Feel sorry for you, I have similar problem, may be even worse. I cannot eat anything but rice, potato, meat, bananas, olive oil, and some walnuts. Anything else I try to add causes loose stool in 1 day eventually D. I had negative lactose intolerance test, but cannot eat dairy (even goat milk). I cook everything myself, and do not know what to do next.

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