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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.

Alert! Csa Guide Misinformation!
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11 posts in this topic

For those of you who purchase and/or reference the CSA Gluten-Free product listing, be WARY!! On page 189, I found beer listed as a gluten-free product for Chipotle. When I asked the CSA execs to send out a warning to people, they ignored my request and claimed that the information had been changed for future issues of the product guide.

The fact that a blatent gluten-containing food such as beer is put in the guide and no one there second guessed it or caught it is scary to me. I am using my guide with a grain of salt.. I've always been a label reader... but I thought this guide could help me as well as family members purchase gluten-free foods. I am worried about what else CSA didn't catch.

katelynn

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When I was first diagnosed I bought this guide (last year). I found it to be expensive and not very helpful. I realized much of what I needed could be found on the internet or by making a phone call. I was not impressed.

Hez

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I did the same thing! I bought it last summer--I have looked up a few things, but most of the brands in there are not available in my area. The best source of info about products, in my opinion, is either here or contacting the companies directly. The second is kind of a pain, but you get the most up to date info that way. I looked up page 189 in my copy, and it was not the restaurant section. And the restaurant in question was not listed at all in mine. I thought that they mailed out updates, but in the 10 months I've had the guide, I have received none. And I did pay 1 year's dues!

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I plan to get the Clan Thompson Food SmartList for Pocket PC (brand new! I helped beta test it!), I have been impressed with them so far, and they seem stay on top of the updates. Its $59 for it with a years updates.

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What is CSA Gluten-Free product listing?

Sounds like it was written by a few too many beer drinking guys, or perhaps they were drunk when they wrote it? HA! It's all about the almighty dollar.

Perhaps I've become skeptical -- well I'm more cynical -- I was NEVER like that until I came down with celiac disease. I don't believe anyone for their word anymore. History has proven almost everyone lies and gets away with it. This is a prefect case in point.

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We had purchased the CSA product guides for 3 years and while they are ok, the products that they show as gluten-free cannot be found in the NJ area; most of the supermarkets noted in the CSA book are not in NJ either, so while it might be a good publicaton for the mid-west or west coast, it is not the proper publication for NJ area. So I stopped buying it this year. I am very interested in Clan Thompson....how long (in hours) does it take to download when you buy it for the first time?

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We had purchased the CSA product guides for 3 years and while they are ok, the products that they show as gluten-free cannot be found in the NJ area; most of the supermarkets noted in the CSA book are not in NJ either, so while it might be a good publicaton for the mid-west or west coast, it is not the proper publication for NJ area. So I stopped buying it this year. I am very interested in Clan Thompson....how long (in hours) does it take to download when you buy it for the first time?

The beta version for Pocket PC that I tasted was only a couple of megs, so un a dialup should take around 15 mins, 30 mins at extrem worst. Dunno how big the full version is. But you you email them they can tell you. They are very helpful. For average 56k dialup you can use about 3 mins per megabyte as a rule of thumb. For averag 28k you can use 5mins per meg. Thouse are rough ideas only, not exact, but getyou ball park at least.

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What is CSA Gluten-Free product listing?
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What is CSA Gluten-Free product listing?
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Ms. SS--Vincent posted a link to it above. It is a 3-ring notebook of current gluten-free foods, as reported by the manufacturers--put out by the Celiac Sprue Association. I bought it shortly after I was diagnosed. I had no idea where else to get info--I had not yet found this board, and my doctor was no help. I would not buy it again--it is far from a complete list and a lot of the stores are not in my area. It was of some help in the beginning--and the list of company phone numbers did come in handy a few times. I think I paid $35 for it, and another $25 for dues to become a member. I am dissapointed, though, as they told me they printed updates and would mail them out to members. In the entire year I was a member, I did not get one update.

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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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