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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.

The Long Awaited Appointment Is Near
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4 posts in this topic

After about a 2 month wait, my appointment with the highly recommended celiac specialist is on Friday (10/8). Yeah!! I met him during a local GIG meeting and spoke with him for a few. He's a GI spec and is head of nutrition at one of our leading hospitals. He'll be running the HLA tests (gene typing) and will probably repeat the endoscopy (since I got it 2 years ago and only 3 samples were taken). I've been in gluten limbo for all this time, so it will be nice to get all these tests done and possibly get some answers. I've been reading much and feel well-prepared by the forum community.. so my thanks.

PS... anyone in doubt of whether they should change their current doctor should request a copy of their medical records. :lol: My previous doctor totally lied about continuing tests and made it out like I didn't want to do them... he's the one that suggested I not.

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Good Luck and I hope all goes well. Please let us know how it goes on friday.

Lisa :)

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I must say that I'm very pleased with my visit to the doctor... he was extremely thorough. I spent over an hour in his office speaking with him about everything I knew and why I was there... I didn't leave out a thing! I even mentioned my recent vertigo spells (which haven't occured in a while). They drew about 4 vials of blood and he is re-running the thyroid (because I'm very cold intolerant), a complete metabolic panel w/ sed rate, will check for b12 & some other common deficiency which I can't remember, he'll also re-check my liver (because my ind. bilirubin is always high), re-run some celiac tests, check for intestinal inflamation and here's my favorite and the most anticipated... the HLA (gene typing)!! It will be a couple of weeks before these results come back. In the meantime, he gave me his card with his e-mail address and told me if I had any questions or concerns that he'd be sure to get back with me asap.

My anti-gliadin antibodies are positive, but low-positive... he's wanting to make sure that celiac is not down the road for me.

I like this doctor and the downtown trip was certainly a pain in the butt... but so worth it.

Gretchen

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I received a call from my doctor today (less than a week from the test date!!). Anyway, it's good news! He performed the HLA (gene typing) and I'm negative for both DQ2 & DQ8. Apparently I will never develop full blown celiac.

After the wedding sometime (which is 11/6), he might want to perform the ELISA testing to see if that's where the cause of my symptoms are coming from.

Gretchen

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    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • 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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