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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, Symptoms, Symptoms! Help!
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6 posts in this topic

Hey everyone!

Sorry I'm new to everything here so I'm looking for some advice for you more seasoned pros.

About 10 months ago I went to the Dominican on a service trip and ended up getting a severe stomach flu or cholera. Since then, I haven't felt normal. Symptoms started with stomach churning and bloating all the time, most often at night or after I ate. It kind of feels like when you drink a lot of water and you can feel it sloshing around-- but it happens to me all the time. It also is SUPER loud. I also was experiencing constipation. So I went to gastroenterology and they did a whole bunch of blood tests (including celiac) and all came back negative and normal. Then I got an endoscopy-- also normal. They told me I had post-infectious IBS, and that I just had to wait it out.

So after months of waiting and still feeling sick I went back to the doctor. We did more tests (thyroid, food allergy) and all came back normal. My constipation had gotten worse at this point and I was still experience the churning/bloating all the time. Again they told me to wait.

After 10 months I decided to get a second opinion. The doctor mentioned gluten sensitivity but said the topic was very controversial and there was no way to test for it. He also explained that my chronic headaches (since I was 14) and skin eczema (specifically on my scalp) could also be symptoms of gluten sensitivity. Unfortunately he said he didn't know enough about the subject to tell me any more.

So after doing my own research I decided to try going gluten free on my own. The first two days I felt pretty good, the churning eased off a bit and my bathroom experiences weren't so bad. Day four however hit me hard. The churning was so bad it made me nauseous and I was so tired I couldn't do anything all day. Day 5 started with significant stomach churning/bloating, more constipation, and a migraine.

I'm starting to question my self diagnosis. Am I way off track here? Is it possible I'm not gluten sensitive at all? The day I started to feel sick I had a starbucks raspberry latte and some movie theater popcorn (as well as some stuff I cooked myself). Is it possible that one of those things had gluten in it and it's affecting me this severely?

Sorry for the long post, I'm just frustrated and looking for some answers. I'm new to this and I'm worried I'm doing it all wrong or I'm wrong in my diagnosis in the first place.

Any similar experiences or help would be very VERY much appreciated.

Sheri

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Im betting you got glutened. I have been glutened more times than I can count at Starbucks so I quit going. I thought I read on another post that movie theater popcorn wasnt safe but Im not sure. It also tales time to jave symptoms resolve.

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Your best bet in going gluten free is to eat only food you have prepared yourself. Eat whole foods, meats, fish, vegetables, fruits, nuts, seeds, rice, maybe some gluten free pasta with home-made sauce so you know what's in it. The chances of cross-contamination before you are thoroughly familiar with the diet are very high. So at least one month of not going out to eat, taking snacks with you to the movies (you don't have to advertise it!) and not eating at friends' houses unless it is something you have brought with you.

Yes, after you go gluten free it takes smaller and smaller amounts of gluten to upset you. Unfortunate but true; your body is so glad to be rid of it that it fights back if it detects it again.

Non-celiac gluten intolerance is actually more prevalent than celiac disease and the medical community is just coming to grips with this. Keep eating gluten free and learning where gluten hides. Here's to feeling better in no time. :)

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You do sound like you got glutened. I have had daily headaches like you, as well as the migraines. I had DH on my feet but the gastro didn't get to see them because I went gluten-free before going to him. I had eczema a bit on my head and my elbows were in horrible shape...sharp, rough skin. I was opposite in that I had D all the time, not C. But the rest sounds almost like my story.

Anyway, 2 days into gluten-free and I felt great. I wasn't healed, but I had just not felt that well in a long time so to me it was euphoric. After 4 days my skin cleared and my elbows were soft. Who has ever gone from nasty, rough skin, including rough heels and callouses, to soft skin in 4 days without heavy topical and other treatment? I sure did. All I did was I went gluten-free and started supplementing. That's it. And I got glutened at 5 weeks and it was horrible, just like yours.

If you're just intolerant, that's a bit of a blessing. You're suffering symptoms without having the severity of damage to the intestine. Sounds like it feels the same, but I imagine your blood work should look a lot better than if you had celiac. So if you can stay gluten-free that's the only real test for it. If you feel better gluten-free, the answer is easy. And it seems like it already had until something happened. I wouldn't trust things without either a certification from the establishment that it's gluten-free (and that can still be questionable due to CC) or a label you can clearly identify all ingredients as safe (as well as any mfg process that food went through). It'll get easier as you learn all the "gotcha" things that can trip you up. I'm still tripping regularly :)

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Just a thought -- have you been tested for amebiasis? I traveled a lot to Mexico in the past and found it very difficult to get properly tested and treated in the US for tropical parasites. Not unlike Celiac, doctors here have very little experience with it.

Once when I had a very bad case of amebic dysentery, the first round of Flagyl did nothing and it took almost a year of treatment to get rid of it.

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Thanks for all the help! I will continue to be gluten free and hopefully it'll get easier. I feel a little better today so maybe im starting to get over the starbucks mishap. I haven't been tested for amebiasis I don't think. I have an appointment with a gastroenterologist coming up so I will mention it to him. I took anti-parasitics after I got back from the Dominican though. Would they be strong enough to kill amebiasis?

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • 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!    
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