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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.

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Hi everyone, I haven't visited this board in a year because I started to deny that I had a gluten problem last year and started eating gluten again. I even had Enterolab tests done last year and was positive for everything, so I don't know why I can't convince myself to stay gluten-free. I realized that I was doubting my own "self-diagnosis" and decided to go to a "real" gastroenterologist for the full Celiac blood panel and possibly an endoscopy. I guess I want the "real" diagnosis to get myself more committed to gluten-free and to make it easier to say to my friends and family that yes, I did go to a "real" doctor. I hate how people doubt this disease. And I hate how people call it an allergy! I am eating gluten right now because of the testing coming up, so my friend and I got a pizza last night and I said, "well, I have to eat some because I'm getting retested," and she said, "oh, yeah. I forgot about your little allergy." UGH! LITTLE ALLERGY??? But you know, I was the same way 10 years ago. I didn't understand why people couldn't have peanut butter from a jar that had bread crumbs in it. It seemed paranoid to me, but now I know better.

Anyway, I'm tired and cranky and gassy and itchy because of all the gluten I ate yesterday. I see the doc on the 29th. I wish they'd consider celiac testing an "emergency" and test us sooner than the weeks and weeks they make us wait--and eat gluten!

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Hi wwebby (((((((hugs))))))))) to you!

I could not imagine eating gluten, even the slightest bit sends me to the moon! :( You poor thing, I do hope the testing is right around the corner and that you will not have to eat gluten much longer. BUT remember an improvement on a gluten-free diet is also a good test, even some docs will tell you that!

Hang in there and get better soon! :D

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I second that, my son had positive blodd test and complete recovery on the gluten-free diet, so his doc decided the biopsy wasn't necessary and I am very thankful. I wholeheartedly believe that recovery on the diet is the biggest indicator for diagnosis there is.

Feel better soon!

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your little allergy."  UGH!  LITTLE ALLERGY??? 

I had a woman call it "a little sensitivity" and tell me that eating whole wheat 4 or 5 times a day would cure it. A man kept trying to tell me that I could just take shots for it! I hope those people do not have to learn about it the hard way!

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I agree with the annoyance of having a serious auto-immune disease mislabled as an "allergy." I try to calmly explain to people that the difference between an allergy and an auto-immune disease is: when you ingest something you're allergic to, your body attacks what you've just ingested. When you ingest something and you have an auto-immune disease, your body attacks ITSELF. That is the very nature of auto-immune. It drives me crazy that people can't at least be respectful of things even if they don't fully understand them!

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I'm traveling this week and all meals are being eaten in a restaurant. The servers and chefs have bent over backward to accomodate me and I haven't gotten sick at all. Yet. But, I am nervous about it.

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Gillian,

I agree with your statements about "allergy" not representing our auto-immune condition - but what out Terri, who is eating out in restaurants all week? That's where the rubber hits the road for me - what do I say in a restaurant? My experience is that restaurant staff snap to attention when they hear the word "allergy" and that "gluten intolerance" and (rather controversially) "gluten allergy" are the operative words in the restaurant world.

If any of you have had experience making the whole "eating out" scene work in other ways, I would love to hear about it.

Terri, I just survived 10 days away from home and (miraculously!) returned home well. Yet another disaster averted - at least that's how it feels.

Laurie

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The restaurants here in Seattle have been incredible! I have my gluten free dining card which I laminated at Kinkos and last night the chef came to my table 4 times! They usually poach my salmon as that requires a special pan, and give me veggies and a salad. Last night the chef fried me some potatos and onions in the same pan as he backed my fish. For breakfast I've been ordering egg white omelets as that gets cooked in a pan and not a grill. Hard boiled eggs and fruit have worked out fine. Lunch has been the very hardest. Usually a salad with whatever grilled meat that is cooked over a flame that they have. I think I've lost 3 or 4 pounds this week though. Oh well, I'll have fun putting it on at home. Everyone feels sorry for me but they don't understand. I feel great! For the first time in years!! I've been gluten-free for 3 weeks now and what a difference!!!!!

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Terri,

I live in Seattle - and I'd love to know the name of the restaurant you went to where the chef came to your table 4 times! I highly recommend Wild Ginger downtown - the majority of their menu is either already gluten free, or can easily be made gluten free. Also, try to make time for a trip to Flying Apron Bakery in the U District. You won't believe their gluten-free, vegan chocolate cupcakes.

happy travels, Laurie

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    • 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
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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