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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.

Desperate! Exhausted! Upset Stomach! And Overwhelmed!
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Ok, This is ridiculous. Gluten Free for 9 mos. Found out some foods had gluten along the way. I cannot get rid of the exhaustion. I've had it for seems like most of my adult life. I've seen natropathic drs and no one really helped. I had such brain fog and stupor that I didn't know if I was coming or going so took myself off gluten and it was amazing. Stomach cleared up pretty well. The exhaustion never left. Very low cortisol levels through saliva testing plus wondering if I have other food allergies? Don't know if thyroid is in question but most drs say it's fine even with extensive testing. I've had it! I watch labels and it seems now whatever I eat bothers me. I've cut out gluten (9 mos) and sugar for 3 weeks. No chg. I thought that maybe the fresh veg juices might be giving me Diarrhea so I cut that out. I have had horribly low iron and ferritin issues in past and those are now up, maybe gut starting to heal. I also thought that i might have a casin allergy from what others say here. I use mot cheese and cottage cheese and yougert as mainstays in my diet so I can take in enough protein. I've cut all that out except for the butter for about a week and no difference. Stomach churns and upset and the more I worry about all this, the more upset it is! I'm losing weight, it was gradual at first but can't keep it on now. I don't have a huge appetite but it seems if I do eat more (like I used to ) I get an even worse stomach. Everyone comments on the wt loss and I feel like I don't even look well anymore. I'm discouraged BIG TIME! Sure appreciate your comments. I've had a colonoscopy and that was fine about 1 1/2 years ago. HELP!

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Sorry that you are having a difficult time! :( Have you considered keeping a food diary?

I don't want to be redundant, but have you checked you meds, shampoos, lotions....work place environment, shared kitchen equipment.......gluten can be a tricky opponent. :angry:

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Yes, doing food diary too---I didn't think I'd have to be so cautious with the lotion. Waiting to hear back from Burts Bees on the lip balm but I think that's okay. We all eat gluten-free here - even though they don't have the problems but I just don't know! I'm gonna ditch the Rice Dream, I heard it has barley malt- very low - but that could be if I am super sensitive.

Sorry that you are having a difficult time! :( Have you considered keeping a food diary?

I don't want to be redundant, but have you checked you meds, shampoos, lotions....work place environment, shared kitchen equipment.......gluten can be a tricky opponent. :angry:

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Yes, doing food diary too---I didn't think I'd have to be so cautious with the lotion. Waiting to hear back from Burts Bees on the lip balm but I think that's okay. We all eat gluten-free here - even though they don't have the problems but I just don't know! I'm gonna ditch the Rice Dream, I heard it has barley malt- very low - but that could be if I am super sensitive.

There is a NEW Sensitive Thread that has just started up. You might get some good suggestions over there. :)

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You are right to ditch the Rice Dream. Many people react to it. I don't get near it. You can get other "milk" to drink. Pacific has a rice drink and Hazelnut. You can get coconut milk also.

Susan

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Yes, doing food diary too---I didn't think I'd have to be so cautious with the lotion. Waiting to hear back from Burts Bees on the lip balm but I think that's okay. We all eat gluten-free here - even though they don't have the problems but I just don't know! I'm gonna ditch the Rice Dream, I heard it has barley malt- very low - but that could be if I am super sensitive.

Do ditch the Rice Dream and also check all your toiletries for gluten ingredients. Also check all meds and supplements you take. With supplements you need to read all ingredients as some will be labeled gluten free but still have wheat and or barley grass and you will react to those.

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    • Weird Reaction
      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'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • 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? 
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