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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.

Confused...hurting...
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7 posts in this topic

Hello everyone,

I am new here and have not had official gluten testing done because I am unable to see a GI until 2/4. My symptoms all seemed to start (or get progressively worse) about a month ago. The symptoms include abdominal pain which was located right under the rib cage mainly on the right side which would occasionally also occur on the left side. Diarrhea has been common and I haven't had a "normal" bowel movement in forever. I have also been experiencing chest pains which feel like really bad heartburn. I have been in the ER twice because of these pains where they have done a EKG, CT scan, ultrasound and different blood work. Everything has seemed to come back normal minus high white blood cell (13) and slightly elevated blood pressure. My family seems to have a trend of gluten intolerance and a cousin who is confirmed celiac. I have tried since Sunday to go gluten free and see if it helps with my issues. The first couple days I felt better, only using the restroom once per day which made me very happy and excited, thinking I may have a better idea of what's going on and stop some of the anxiety issues that have accompanied this whole process. Last night I started to develop a pain in my lower left abdomen, which I had not felt before, and today my bowel movements have gone crazy again starting off with what seemed to be darker than normal in the morning and diarrhea since then. I'm so confused as to what is going on and would just like to know of others have experienced things like this or if it sounds more like I am suffering from a different illness :(

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You shouldn't be trying to go gluten free until all celiac related testing is done. That will mess with the results by causing a false negative. Your regular GP can start the process by doing a complete celiac panel. It is a good idea to have vitamin and mineral levels also checked at the same time. That is a good place to start and your GI appointment is only a couple weeks away. That you had such a good initial result with you short time gluten free is a good sign that you need the diet. Since there are many ways to be cross contaminated it is possible that caused the 'bad' day as we often have ups and downs when healing and learning the ins and outs of the diet. So stay on gluten for now and call your GP this morning so you can pick up a lab slip and the GI can have the results in hand on the day of your appointment.

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I agree with Ravenwood, see your GP and get tested right away. The blood tests are a quick and easy thing. The most common celiac tests are:

TTG IgA and IgG

EMA Iga

total serum IgA

DGP IgA and IgG

The first two tests are the most common. The third test is not actually a celiac test but it checks whether you have enough IgA to register a positve Ttg IgA or EMA IgA test if you are a celiac. Keep eating gluten until you are tested

Be aware that approximately a quarter of all celiacs seem to have negative blood tests and are diagnosed by the biopsy.

If all the testing comes up negative, try the gluten-free diet for 6 months and see how you feel; it sounds like you were having good results with it already. :)

Best wishes.

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Upper right area of the abdomen is where the gallbladder is located. Have you had it checked? Ask for a HIDA scan at your appointment to make sure its working right. I passed with flying colors on the bloodtests that were used to check it but when i got the HIDA it showed that it was only working at 5%.

Just a thought :)

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Ravenwood, you mention staying on gluten for blood work, which I did and still got a negative. Surprise surprise. That was three and a half months ago. After the test I went gluten free, but still make mistakes and it seems to be getting worse. Saw my doc last week, she is sending me for a gastroscope and told me I'd have to be on gluten for 2-3 weeks before the scope. I can see why she would want me to, but if I'm having symptoms while doing my best (still learning) at being gluten free I keep wondering if that should be enough for the test. When it comes right down to it I'm scared of being in that much pain for that long, and the accompanying depression. I feel like it can't be good to do to my body/mind.

Any opinions would be welcome. For the record, I definitely plan on asking my doc these questions as well now that I've had time to let the implications of her instructions sink in. Don't have an appt date for the scope yet.

Thanks for reading.

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Diagnosis of celiac disease can be difficult and even having a diagnosis and going gluten free may not solve all of your health problems. In addition to the tests your doctor and others here have recommended, I suggest you meet with an allergist and have a complete allergen panel done (food and environmental). Most people with celiac or other forms of gluten intolerance / sensitivity, will have other food allergies / sensitivities - corn and dairy (lactose and / or casein) are the most common. Until you eliminate all allergens / contaminants from your diet and environment, you will not start feeling better and will continue to be frustrated with your health situation. Trust me - I am speaking from experience.

It is no fun learning that you have to avoid foods that you enjoy, but it is also no fun to suffer from mystery ailments all the time.

Hope you feel better soon.

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my whole family just did the stool testing at EnteroLab. we got tested for gluten antibodies, tissue damage, nutrient malabsorption, as well as multiple food sensitivities. VERY sensitive tests!!!

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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