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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.

Symptoms Several Days Later
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7 posts in this topic

I should have titled this "Symptoms Appeared Several Days Later?"

Okay, so my situation is slightly complicated. Maybe someone can wade through it enough to advise me.

I was never officially diagnosed celiac disease. I am hypo-thyroid (due to Hashimoto's Thyroiditis) and was going through some depression and fatigue, but my thyroid levels were all normal. My doctor suggested testing for celiac disease. I had elevated levels of one of the celiac disease antibodies, but not the other two. He recommended going off gluten to see how my body would feel. I did an elimination diet for 2 weeks, but felt no difference upon reintroducing gluten (or dairy, or corn, or anything else).

So, I decided to see a specialist. He did genetic testing and found that I have the Celiac gene. But he said I probably have not yet activated the disease and that I should continue to eat gluten.

No biopsy was done.

My primary doctor heard this, and convinced me that my body probably doesn't react well to gluten, even if I haven't triggered the disease yet. He suggested that I go gluten-free for six months to see how I feel.

Last Tuesday, I went to a very special anniversary meal at an extremely expensive restaurant. In a moment of weakness, I decided to eat a tiny amount of gluten for one night.

I have never had gastro-intestinal symptoms.

On Friday morning (2.5 days after ingesting gluten), I felt really sick and kept burping all day. In the afternoon, I threw up. I continued feeling sick that night. Saturday and Sunday, I was fine. I ate rice noodles and broth to calm my stomach.

But then, on Monday, I got really bad diarrhea - worse than I've ever had it. It has continued through today and shows no signs of stopping.

Is it possible that my symptoms are related to celiac disease? Everything I've read has said that symptoms are nearly immediate - could they really be delayed by three days? What has been your experience when you've accidentally consumed gluten?

Sorry this is so long. Thanks in advance for all of your help.

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Oh, I forgot to add that I've been gluten free since April 22 - about 2 months.

Also, any general thought/opinions regarding my situation are appreciated - don't feel limited by my questions.

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I'm not even going to try to understand the medical stuff, but all I know is that they don't have to be immediate. First, every Celiac has unique symptoms. Most got their symptoms shortly after eating gluten. For example, if they had diarrhea, they'd get it after eating a gluten lunch, or something. Another Celiac I know would be eating dinner and then have to run to the toilet and throw up. Then, he'd come back, be fine, and even eat dessert. My symptoms, which included cramping, vomiting, bloating, gas, and occasional diarrhea, didn't come at any particular time. I always ate a big NYC bagel for breakfast and had no symptoms from it. Rather, I'd get sick once every 1-2 weeks...vomiting, cramping, for about 24 hours...could it have been build-up of gluten? The diarrhea was random, the bloating was constant, and the gas was constant. I had other symptoms including floating stools, and stinky stools, but I noticed no connection between symptoms and the time of my meals.....it doesn't need to come right after....mine didn't. Most importantly, everyone's symptoms are different: for example, with weight, many w/celiac disease are really thin from malnourishment, yet others are overweight until they start the diet. Everyone is unique. Good luck.

-celiac3270

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Many thanks -- I guess I just wanted confirmation that it could be the gluten even though the response was delayed.

I guess my post was too long for most people! :)

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I've heard of people reacting as much as 48 hours later, but I think that's pretty unsual. Your could be a gluten reaction but it also sounds like a possible stomach virus. It's not unusual with a virus to go through the throwing up stage and then have the diarrhea.

richard

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I would push for more testing. It sounds like your symptoms are too varied and persistant at this point to rule anything out until you've been properly tested, including an endoscopy, maybe colonoscopy, and barium X-rays. Ask your dr. about some of these.

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I agree... just keep pursuing the answers until the answers come.

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    • does your diet have to be like a perfection?
      Yes.  You have to be 100% gluten abstinent when you have Celiac Disorder.  It gets easier to be gluten abstinent, not because you get used to it but because of the negative effects that ingesting gluten causes when you accidentally eat something with gluten.  Nothing tastes good enough to go through a glutening.  As your system heals it will become less tolerant of your occasional lapses into gluten consumption--accidental or otherwise. You have to take this seriously.  You get used to it and there are some wonderful gluten-free options out there.  But you can't go back to gluten and stay healthy.  It just doesn't work that way. Good luck.
    • does your diet have to be like a perfection?
      I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.   "The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve. The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road. However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits." http://www.cureceliacdisease.org/living-with-celiac/guide/treatment    
    • does your diet have to be like a perfection?
      FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).   I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!   Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!   Take care and welcome to the forum!   
    • does your diet have to be like a perfection?
      Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?   As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.
    • 3 months gluten-free still feeling cramps
      First of all, your doctor does not seem to be celiac savvy.  It is so easy for a GI doctor to miss patches of intestinal damage on an endoscopy because the small intestinal wall, if spread out is the size of a tennis court!   How many samples were taken and submitted to a pathologist?  A visual look from the GI often results in nothing!  For example, my endoscopy visual was recorded as normal.  But my biopsies revealed moderate to severe intestinal villi damage (Marsh Stage IIIB).  GI's are supposed to take four to six tissue samples.  I would suggest getting copies of all your lab/procedure reports.  Don't trust me.  Here's the research: http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ http://www.cureceliacdisease.org/living-with-celiac/guide/diagnosis Next, three months of eating gluten free is not very long.  The reality is that there is a steep learning curve to going gluten free.  You can get "glutened" by kissing someone who just consumed gluten.  You can get it from a shared toaster, coated frying pan, wooden spoon, etc.  Gluten can be hidden in prescription medications, etc.  Do you EVER eat out?   I can tell you that it took me a year to feel pretty good and another to feel really normal!  My learning curve was not so steep since my hubby had been gluten-free for 12 years prior to my diagnosis, so I knew the drill.   You could have something else besides celiac disease.  Like SIBO, Crohn's, etc.  You might consider going back to your GI for another celiac antibodies test to see if you are diet compliant  before looking into other illnesses.   You could have developed intolerances (lactose is a huge one).  These can be identified by keeping a food diary.  They develop because your gut has been damaged (or is continuing to be damaged by gluten).  You might consider digestive enzymes (use certified gluten-free ones) and stick to whole well-cooked foods (including fruit) for a month or so.  I can tell you that I could not eat eggs for years.  Now I eat them daily.  Same for hard-to-digest things like nuts and crunchy fresh veggies!   Check out our Newbie 101 section pinned under the "Coping" section of this forum.  Review it to be sure you really are gluten free.  Then give yourself some time to heal.   I hope you feel better soon! 
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