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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 Stomach Cramps
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Hi, I've had some weird things happen to me in the last month. Several weeks back, I got what looked like food poisoning, & wound up in the hospital, where I had to get rehydrated with an IV. So there was that, then a few days back, my fiance & I were on a road trip, when I started to get these waves of stomach cramps. They soon became terribly severe & started migrating to my intestines. Pretty soon, both my stomach & intestines were cramping in waves, so bad that I was screaming into a pillow. I felt like I'd been shot. This went on for an hour & 1/2. I honestly thought I was dying. We were in the mountains, nowhere near a medical facility, so we just pulled over & I hoped they would pass. All in all, I had the cramping for 4 1/2 hours. It was a nightmare. I've never had anything like that before. I've been gluten free for about a year & wonder if I got contaminated in both instances. Blood tests showed that I didn't have food poisoning after all in the 1st instance. Has this stuff happened to others here?

angel

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I was in the ER 4 times before my diagnosis because of what they thought was dehydration. Blood tests found nothing wrong with me either. I thought I had food poisoning and it turns out before I was diagnosed I had not only ecoli(from a McDonalds Big Mac <_< ) but I also had mono...so there was my trigger

Anyways I know what you have been through(haven't had severe stomach cramps but I have had alot of other stuff)...since being gluten free that hasn't happened at all so maybe you were contaminated...did your fiance eat something then kiss you and you got contaminated that way? Have you checked lipsticks, shampoos, and lotions already? Try to track down every possible way you think you could have been contaminated.

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I also had the same thing happen. I wound up in the hospital several times with stomach pain, diahrea, dizzy, muscle pain, fatigue....each time I was rehydrated by IV and told it was probably the flu. Once they even told me I had Giardia and put me on Flagyl for it. when the stool test came back it was negative. I was actualy tested a few times and each time was negative for parasites and ova.

In hindsight it was probably gluten or some other food intolerance that I never suspected. I never thought I had a food intolerance but am realizing more and more that diet is key.

hang in there til you figure out what you can eat and try to scrutinize everything.

B)

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I have also experienced those kinds of pain attacks throughout my years, both before and after the gluten free diet. Mine also passed after about the four to five hour period. The only thing that helped me was my heating pad, on the floor, rocking back and forth, humming to myself, trying to get myself into a "place in my mind" where I didn't feel the pain...... I have never figured out through what has brought them on.... For me, it kind of felt like there was a vice grip in my abdomen pulling it apart.....

Karen

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That's the kind of pain I had last time I was in the ER, before the final diagnosis of celiac disease. I had that kind of pain once before when I had a bladder infection with spasms, lasted about four to five hours and they think I passed a kidney stone. Might want to have a UA and be checked for an infection. Hurt like childbirth. :o

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just FYI... the only time I get stomach pains that bad (WAY worse than getting glutened) and literally want to die, is when I eat something with aspartame. even suger free gum is enough to give me a little tummy ache. sounds weird, I know, but it happens to my mom and aunt too. maybe on your road trip you were eating different than usual?

just a thought

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Thanks, everyone, for your views. It makes me feel better to know that I'm not alone in this.

On another note, I downloaded the radio show on Celiac called "Gut Reaction," from Audibles.com & gave it a listen. It's very moving & powerful, but left me confused. Everyone at the end of the show was saying that the gluten-free diet was a like a miracle cure & that they feel so much better. I've been on the diet now about a year, as strictly as possible, & although I've seen a decline in bowel problems & migraines, I still have a lot of other problems, like joint/muscle pain & fatigue. I definitely cannot call the gluten-free diet a miracle cure, but it's certainly helped some.

angel

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Every one responds differently. Some people take longer to heal than others. I would have to put myself into the group of people who call the gluten free diet a miracle. I didn't heal overnight either. My life is now the polar opposite of what it was. Keep at it, it will get better.

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Have you been tested for food allergies? Sometimes that can cause the symptoms too. Rice kills my stomach.

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ok.......suffering here too......I am learning that soy is worse for me than gluten!

last night I had a gluten-free cookie that clearly stated on the package that it is produced in a facility that also uses dairy, eggs, soy, peanuts and tree nuts! Unfortunately I didn't bother to read that part but hubby read it this morning only AFTER I was so sick. I must be THAT sensitive! I am trying to stay positive but feeling so poorly just gets me down. I can't seem to get it right. there are so many things to watch out for! soy is a killer for me! :blink:

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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