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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 To Gf Diet
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9 posts in this topic

I have only been on a gluten-free diet since Feb and would like some advise from people that have been on the diet longer. I was at the hospital overnight and the next day for testing. I had informed them that I follow a gluten free menu. I had done some homework so I sort of know what contains gluten.

Decaff Coffee

Corn Flakes (Kellogg's had told me that they have no gluten-free products)

Egg (scrambled looked like in might have some ham or something in it)

Cream of Wheat (was told that it was ok to eat because they cook it in water)

I did complain or at least voice my concern with this gluten free choices lol that I was given. The tech had given me a piece of fruit as I was going to leave because I was hungry. How would you have handled this situation?

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A gluten-free friend of mine was recently in the hospital for an extended stay before her son was born, and she told me she had to lecture the nurses about what was involved in a gluten free menu. She couldn't believe that they tried to tell her that WHITE BREAD was gluten free and so was Cream Of Wheat!!! What is wrong with the level of education about this VERY important diet, that these nurses can be so nonchalant and uneducated about it.

Her husband had to take some gluten-free bread to her, and some other goodies, I brought her some stuff too, but after about a week of being there and continually getting delivered food trays with GLUTEN all over them, she told me that obviously they weren't interested in GETTING HER WELL, but in keeping her sick so that they could keep her in the hospital.

I think how I would have handled the situation is to educate them about gluten. Obviously Cream of Wheat is not Gluten free... Corn Flakes, yeah, well... that takes a little label reading, but if you already know it's not safe, tell them WHY.

I think maybe the celiac community needs to start an effort to educate hospital staff about the gluten-free menu... Get nutritionists involved, etc... start with your own local hospitals.

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Fortunately, when I had to stay about 5 days at the hospital, it was Columbia Presybterian, also home to the largest celiac program in the US, so they knew what they were doing.

I got gluten-free bread, Jello, a kozy shack gelatin thing that had "GLUTEN FREE" on the label...uhh...a cup of hot water with a HerbOx....mix thing to put in it, also gluten-free.

Definitely complain, though.

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I was told pretty much the same stuff. I explained to them why it was not and they really did not want to hear it. Whether they think we make celiac up or what I don't know but it seems like they aren't very afraid to gluten us. If they had someone with a severe life threatening wheat allergy I would like to see if they handle it the same way <_<

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That's one of my greatest fears... that when I'm old, I'll end up in a nursing home and they'll feed me white bread (cause it's not whole wheat bread) and I'll have terrible diahrrea all the time and they'll get really mad at me and I'll get terrible bed sores.

My doctor laughed when I told her this. She said it'll be written all over my chart in such a case. But, we all know how that can go!!

Cream of wheat is okay cause it's cooked in water??? YIKES!!!

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Yeah that is very scary to me in my mind to. Even if it would be on my chart you now how some people are..they might say its too inconvenient and feed me whatever...maybe by then it will be out there more and we won't have to worry about that....

Hello what do they think cream of WHEAT is??????

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I was in the hospital recently also and my husband brought me almost every meal. I could eat breakfast fairly well, cream of rice, and hot tea and jello. But my lunch and supper were brought by my husband, I even asked for a credit on my hospitla bill and they laughed at me.

BAM

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I don't think there is any reason to be quiet about this. I think you should be quite vocal. The hospital would be liable if they killed someone with a peanut allergy by telling him to eat his peanut soup after they had been informed, and this is no different. Once the hospital is informed, they have an obligation NOT TO HARM YOU!

Please do speak up, perhaps even writing a letter to the administrators of the hospital so they are aware of the problem.

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I actually had to go to the ER about a month ago for some abdominal pain that wasn't going away (thinking appendicitis, yikes!) it ended up being nothing, but while I was there, they hooked me up to an IV. Of course, beforehand I had talked to the doctor, explained my conditions ("I have Celiac." "What, sprue?" "Errr, yeah." [never mind that "sprue" is an OLD term that is rather a misnomer these days....] "Oh yes, I know all about it...")

So, what do I see when they bring in the IV equipment? A bag of Dextrose. I mentioned to the tech that Dextrose IVs can be dangerous to people with my condition, depending on the makeup of the dextrose, and that it's not controlled. He raised his eyebrows at me, almost protested, then went out to check. About 15 minutes later, he came back with a saline bag.

Of course the question is, after I had talked to the doctor, why he sent the tech in with a dextrose drip? I thought he "knew all about it..."

Needless to say, that particular visit to the hospital ended up being a nightmare, due to several other issues, like drugging me to the gills with some narcotic, when I mentioned that I had pain of about a 2 on a scale of 10, and my poor wife sitting in the hospital with a completely incoherent husband. We've filed a formal complaint with the hospital and Blue Cross, we'll see what happens... But imagine if they had changed staff, and someone had hooked me up to a dextrose drip while I was incapacitated??

-Pat

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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.  
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      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? 
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      I have not. I'll talk to my doctor about it
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