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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.

New York With Gluten Ataxia/ Place To Avoid-Advice
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"Gluten-Free New York"
I'm sorry to have to say this but I had a terrible visit at this store. Could be that the gal there was having an off day, I don't know, but my time there nearly spoiled mine. I had heard such good things about the store too. My story-I have GLUTEN ATAXIA- quite rare, my brain is damaged by gluten and I must stay away from all cereal grains, even "gluten free" because even 1 ppm of gluten is too much for me. I'm  fine with whole foods, moderate dairy, proteins, organic soy, nuts, veggies, fruit etc...Needless to say, I could see most of the stuff in the shop was made of gluten free cereal grains...fine for most but not for me. Once I nicely explained  this to the lady in the shop she showed me a few items then "switched off. She offered no help or suggestions ie. lost interest once she could tell I wouldn't be purchasing anything. A family came in and bought lots- my son ( he has no dietary restrictions ) and I were  ignored. Don't get me wrong, we weren't treated rudely, we just became invisible! We left, walked back out to Columbus and bought humus, veggies, plain yogurt and fruit. There also were selling  some of the identical gluten free stuff there for much cheaper. Lesson learned:don't be bowled over by glowing reviews, have a plan B. Oh, the shop is VERY awkward to  get into ( stairs up to a door that opens out and knocks you off the step) and very small ( tough if you have mobilty problems ). You'd have better luck at markets if you have more severe dietary restrictions :  Trader Joe's, Zabar's, Whole Foods, and Gracefully (East Village ) are all good.

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I guess I don't understand.....if your diet is that restricted that you feel you cannot eat any cereal grains and 1 ppm will make you sick, why would you go into a gluten free store and expect to find a lot to eat?  These places cater to replacement gluten-free foods that the vast majority of Celiacs can tolerate just fine.  Besides the fact that no one is going to guarantee that gluten-free foods are 100% gluten-free, even though most are pretty close or actually are 100% gluten-free.  For liability reasons, they will not do that.  If you are basically following a paleo diet, then a grocery store would be the better place to shop.  The woman in the shop probably did not know how to help you.  Most people do not know that much about paleo type diets.

 

I had gluten ataxia when I was undiagnosed and it is not that rare at all.  Many Celiacs suffer from this symptom.  You will heal, if you follow a strict gluten-free diet.  I did and have the problem no more.  My father has it also but he is not gluten-free...that's too long of a story.

 

I'm sorry you were disappointed as NY is usually excellent at gluten free offerings!

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Clevercate, have you tried Against The Grain products? They make breads and pizza using absolutely no grains at all, yet their stuff is delicious. They are located in Vermont and their website says that even the employees are not allowed to bring anything with gluten in it for their own lunches. You could probably find some of their stuff in a local health food store, but if not you can order online.

 

I have an intolerance to corn and soy as well as gluten so it is wonderful to find something that I know is absolutely safe for me to eat. I can only get their baguettes (I get the ones with rosemary) and their cheese pizza here where I live. I usually buy some Mulay's gluten-free sausage and put that on the pizza. SO good!

 

From what I have read, gluten ataxia takes longer to resolve than any other symptoms, and I know that for some folks the damage is permanent. Here's hoping that YOURS is better soon and COMPLETELY goes away with time. :)

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      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
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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
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