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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.

Another Newbie W/lots Of Questions
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9 posts in this topic

I was just diagnosed with this a week ago. I couldn't get an appt with the dietary specialist until the end of the month, so in what little spare time I've had (I'm taking 10 credit hours in 2 months - can you say stressed out?!?!), I've been researching as much as I can. I've found a lot of things that are extremely confusing, though. Like on the list my doctor sent me about what I can and can't have - on the things I can have it says salad dressings, soups, pure instant or ground coffee, , cold cuts, yogurt, etc. But then on the list of things I can't have, it says commercial salad dressings, prepared soups, flavored instant coffee, cold cuts, flavored yogurt, etc. So I'm not sure what the differences are between those things. Also it says I shouldn't have buckwheat but then it says I can. Same thing with rice - it says I can't have packaged rice but then it suggests to have rice. It also says I shouldn't have anything that's seasoned but then it says it's ok. And oatmeal. I'm just very confused by all of this. Any help would be greatly appreciated!

~STARVING!!~

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You just have to check absolutely everything. Some salad dressings will be ok and others are not. Pretty much for everything that contains gluten, there is a gluten free version.

You can find info on so many great products on here and there are some brands that will clearly list wheat,rye,barley,oats on the label or will be safe. Those brands definitely help us out and they are listed on this site in numerous places(if you can't find it let me know)

Make sure products like makeup/shampoos/soaps and things that can get into your mouth in any way are checked for gluten.

I would stay away from oatmeal...Oats in the US are highly contaminated plus about 10% of people actually react to the protein called avenin in the oats even if they are uncontaminated....too risky for me.

If you need any help let me know and I would be glad to help you out. Hang in there though, it gets alot easier...you'll learn it very quick.

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Hi! Welcome to the board! Any questions you might have, fire away. Our motto is "No question is too stupid to ask", since navigating the gluten free world can be somewhat overwhelming at first. There's a bunch of really great people here who are always willing to help.

It sounds like you got a lot of confusing information! Basically, you have to live by one rule: READ EVERYTHING!!! There are some companies like Kraft who are really good at listing their ingredients and will clearly list if it has any wheat, rye, barley or oats in it. All of the salad dressings, bbq sauces etc. I use are Kraft, and their selection of things that are okay for us is really quite extensive!

Also, if you e-mail celiac3270 (our resident expert here.....), he has a list he can send you that is an extensive list from delphiforums of things that are okay for us. It's really useful and is broken down into convenient categories to make it easier.....

Make sure you read up on cross contamination also. There is a really good list on this site of ways to make your gluten free world safer (especially the kitchen.....).

Again, welcome to the board and I know the community here will be a wonderful resource for you.......

Karen

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So I'm not sure what the differences are between those things. Also it says I shouldn't have buckwheat but then it says I can.
I know that can be confusing at first. The safe list says you can have it and the forbidden list says you can't have it ;) When you see stuff like that, then you know that you have to double check the ingredients. For example you can find salad dressings, soups, pure instant or ground coffee, cold cuts, and yogurt that are gluten free and not gluten free. There are many companies that clearly indicate gluten in their ingredient lists like Kraft, McCormick, Hunt's-Wesson, Dove, ect. Some people on the board have the full list

Also it says I shouldn't have buckwheat but then it says I can.
Buckwheat by itself is gluten-free; however, it can be contaminated or mixed with wheat. I eat gluten free waffles made with buckwheat and have never reacted to them.

Also, I noticed that you had starving at the end of your post. I know at first it seems like you can't have anything at all and it seems like you are eating the same thing over and over. Trust me I've been there done that :D If you would like recipe ideas or meal ideas feel free to ask and I can give examples with all the safe products.

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You should try just eating fruits, vegetables, and plain meats to start with. That way you don't have to worry about eating gluten in processed foods while you are learning what you can and cannot have.

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Here is a link to a "A Gluten Free Diet Guide for Families" from the Childrens Digestive Health and Nutrition Foundation.

http://www.naspghan.org/assets/diseaseInfo...eeDietGuide.pdf

This will will help you get started with the gluten free diet and answer some of your questions.

I'll try to post some other helpful links later. Good Luck!

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Thank you so much, everyone. This is all a huge help. I haven't had time to get to the grocery store yet so pretty much all we have around here that I can eat is fruit (which I've been living on for a week!), rice and salad - none of which really fill you up so I've felt so hungry lately! I went through the fridge, freezer and pantry with my dad and showed him everything that he could have that I can't have anymore, plus I wanted to see what we had in there that I could have. Which isn't a whole lot! It's really amazing how many things have gluten in it. And it's no wonder now why I was so sick! All I lived on was gluten. I'd have cereal every morning, sandwiches every afternoon, and pizza or something like that for dinner, plus snacks like baked goods. Gluten gluten gluten!

I do have another question - I've seen whiskey on both the good and bad lists at various places online. Is that safe or not?

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I wouldn't be able to answer that as I am not a whiskey drinker (bad experience, drunker than a skunk in my teenage years from Canadian Club Whiskey - still can't stand the smell of whiskey...... anyway, enough of that!!!! :P ) Anyway, here is a list of alcoholic beverages that are gluten free:

http://forums.delphiforums.com/n/mb/messag...iac&msg=42463.1

It seems some are gluten-free, and some are not. e.g. Bushmills and Crown Royale are on there as okay.......

Cheers! ;)

Karen

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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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