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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.

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Hi Everyone,

I'm a new poster, and I'm also writing from England! I was diagnosed as a celiac 7 years ago when I was living in the U.S. I manage a strict no wheat, no gluten, no oats, rye etc. diet.

Over the last month or so, I've been having some medical problems, and I (and my doctors) are struggling to figure out what is going on. I wanted to post in case anyone had any ideas or suggestions for when I go back and see my doctor on Thursday.

I have been having pain in my lower right abdomen. It is there all the time, but it changes in its intensity... right now it's a dull ache, but it can be like a knife digging into me, or feel like I've been bruised. I've also had sharp pain at times under my left breast, and there is a twisting feeling going on there, too. I have constant watery stools, and I haven't been able to eat anything really for the last two weeks, due to nausea and also some vomiting.

The doctors have eliminated anything to do with my gallbladder, kidneys, liver, spleen, lungs. So now they are focusing on stomach and intestines.

I'm just wondering if any of you might have suffered similar symptoms at all, or have any idea what this could be. I was supposed to fly to the States on Saturday for a 3 week vacation, but I think I'm going to have to cancel :-(

Any help at all would be greatly appreciated!

Stann2 :-)

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More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

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More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

Thanks so much for your response. Yes, the doctor actually had me on the FODMAP diet for about 2 weeks before the symptoms got worse... that pretty much eliminated everything except fresh fruits and veg. All I have eaten in the last 3 days is soup, but even that is proving to be problematic. I have noticed over the years that I have gotten more sensitive, but I am a stickler in what I eat. I write everything down and look for trends etc.

In 7 years, I have only ever gotten glutened twice, and both times were bad enough to warrant a hospital visit, so I'm not keen on that happening any time soon! I don't even know if these current symptoms are linked, but in my world when something goes on with the stomach and intestines, wheat/gluten is the first place I go to!

Thanks again for your suggestions :-)

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Okay, let's see what's in your soup and see if that provides any clues?? :) Any new supplements or meds or toiletries? New partner? Anything different?

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Have they done stool testing to rule out any nasty food borne illnesses like Salmonella? If not ask that be done ASAP. While that should have been one of the first things they did doctors sometimes don't. I had salmonella once and had symptoms similiar to yours. The doctor just kept saying my 'IBS' (wasn't diagnosed yet) was just acting up. It was 2 weeks before I could get them to test. I got an apology and a script for an antibiotic the next day.

I hope you figure out what is causing the problem soon.

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I agree that it sounds like an additional food intolerance. Soy does that to me. It's in all sorts of things.

Did the broth you used for your soup have MSG or autolyzed yeast extract? They can give me trouble too.

Sometimes we know to look to our food logs for certain foods, but seasonings, spices, and additives aren't as obvious.

I hope you can get this sorted out. A hydrogen breath test might be a good idea to check for SIBO?

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If you go through the salmonella, sibo testing and are clear I'd look at the more difficult things like food groups - sals, histamines, amines, lectins. They are tricky to figure out but can be super problematic. From what I've read by posters here they can be as bad or worse to deal with than gluten.

I have a few other food issues - preservatives, colors, msg - but for the most part are easy to identify and avoid. When you get into salicylates its hard because they are in almost all foods. And they are especially in HEALTHY foods (fruits, veggies). So you can eat tons of healthy stuff and get sicker and sicker. Same with the histamines, amines, lectins.

I certainly hope you get relief soon. Best of luck to you.

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Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

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Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

Your diet wouldn't have had to change for it to be a salicylate, amine/histamine, etc. reaction. It would be a new intolerance, so to speak.

And no, I don't have experience with Crohn's /UC.

They do advise a low residue diet for Crohns-perhaps try those foods?

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I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

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I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

Excellent. I thought that was in his checked list but I don't see it.

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