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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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arocchio

Can Going Off Gluten Be Dangerous?

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So I have been off gluten for about a month.  I feel better than ever.  I went off gluten before thinking of being tested for Celiac or sensitivities.  I slowly became convinced that all my health problems were related to gluten.

 

So I have a friend who is telling me OVER and OVER and OVER. That going off gluten without a diagnosis can be very dangerous.  Her doctor said it can make a person very sick once they eat gluten again even if they have no allergies.  My nutritionist said, "IF you feel better not eating, it don't eat it. IF you feel sick when you eat it, don't' eat it."  Apparently my friend read a study that showed that people who were not gluten sensitive or celiac became very ill with celiac-type symptoms after going off gluten and then reintroducing this to their diet.  

 

Has anyone heard of this?  Have you read these studies?  Have you heard that gluten can make you sick if you illuminate it and then eat it?

 

 

 

 

 

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Going off gluten is not dangerous.

 

A gluten-free diet is not missing anything you need, although getting enough fiber can be a challenge. Most of the fiber in a typical diet comes from grains such as wheat and oats.

 

Cases such as your friend describes are rare, but do happen. They happen because sometimes your body develops an ability to cope with something. If you remove that for a while, then the latent sensitivity may become overt. Gluten sensitivity is NOT an allergy, although some people (including some with celiac disease) have an allergy to wheat.

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Ok so I know this conversation from below is LONG.  But maybe some one can give my some prspective that what "apple" and "orange" are saying.  Who is correct?  


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    Anita Rocchio Williams Never been through the testing for Celiacs. But 100% certain I have an intolerance. I ate a bite of Jax's food at a restaurant forgetting it had flour is a thinkener for the sauce. Pretty sure that caused me to have the abdominal pain yesterday and some of today.
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    Hermes Sounds like the symptoms. My sister in law has it, so I know a little about it. It does get difficult when trying to figure out good recipies for the bready stuff, but it's mostly consuming a diet of fresh foods and produce.  It definitely helps you eat cleaner! I've thought about trying it for that reason alone! Lol.
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    Apples I use a bunch of applesauce for gluten-free baking.
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    Oranges You might want to think about getting tested, Anita. See what your medical nutritionist says. I've heard that anyone who cuts gluten for a while and reintroduces it can have symptoms like those you describe.
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    Apples IMO, the testing is likely unnecessary at this point. It's just an extra expense and the outcome is the same - you can't have gluten either way. Plus, getting tested means that you'll be miserable for a few weeks because you must have lots of gluten in your system for them to test for a reaction.
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    Oranges Anita, as you know, my mother-in-law just went through testing and was diagnosed with Celiac's. She had a very different experience and very different advice than Apples. Which is probably why you should leave it to an expert to determine what you need to do. 
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    Apples I'm curious what the difference was, Orangesl. If you have Celiac's, you cannot have wheat or gluten. There is no cure. If you have a wheat allergy or a gluten intolerance, you cannot have wheat or gluten. There is no cure. If you have any of these things and you do eat the offending food, you will be sick.
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    Oranges I'm quite familiar with Celiac disease as my mother-in-law was just diagnosed with it and I have several friends who have it as well. Without getting into too many details, the doctors indicated that she should continue to have a small amount of gluten up until her diagnosis (not lots), and that eliminating gluten completely from one's diet can cause an adverse reaction upon reintroduction (in anyone, not just those with Celiac's or an intolerance). His advice was not to eliminate it unless and until it became necessary. In my limited research, I've read a number of articles indicating the same and providing specifics as to why this is the case. But again, I'm not an expert. 
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    Anita Rocchio Williams It is hard to decide what is best. When you go to the Celiac website and forum there are a lot of reasons to get tested. But if you do not have celiac and are just intolerant the only way to know is to go off it, see if you symptoms improve, then take it. If you do have a reaction, you are sensitive. At least that is what the forums say. There is a medically recognized difference between gluten sensitive/intolerant and celiacs disease. One is more like an allergy the other is an auto immune disease. The nutritionist as already told me to stay away from gluten. Since I have started down this path and feel better I can continue this way for a few month and let me body heal. Then I might introduce gluten by eating just a little. One cracker/ day for week is likely to get positive test results without having a huge reaction (if you have allowed your gut to heal). However, per advice of a Medical Professional, I am not having gluten. I have known for at least 10 years that I am sensitive. But have never cared enough to stop eating things I like. The only advantage of getting a true medical diagnosis is so that the hospitals, and jails legally have to prepare gluten free food for you. And if you are ever in a stadium/concert or venue that does not allow food you are allowed to bring in your own gluten-free food (with Dr. note).
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    Anita Rocchio Williams I know a lot of people have very strong opinions of Gluten free. and Celiacs. I have gotten my information from Celiac.com (the website that webMD refers you to) and two different nutritionists.
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    Oranges I just hate to see anyone going gluten free if they don't have to!  It's tough! And, if you're diagnosed with Celiac's, it's even tougher! Let me know if you need any resources... my MIL (and all of us, really) are learning quickly!
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    Anita Rocchio Williams Oranges, I guess I am wondering why someone would ever go off gluten if they didn't need to? If there weren't already sure they were at least sensitive. I have seriously had at least 4 doctors tell me to stop eating gluten and/or get tested. Had I not already known I am at least sensitive I would never give it up. It is inconvenient and not very fun. However, when you go off gluten for a few weeks, headaches are gone, back no longer hurts, brusies heal, RLS is gone, you sleep better, you acne clears up, you anxiety lessons, and other great things happen. It is motivation to continue with the lame ass food restrictions. All of the above are symptoms.
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    Apples But even a small amount of gluten for those with an intolerance, allergy, or Celiac's (diagnosed or not) can be extremely painful for weeks and it can cause symptoms for months. Anita said she had a bite of food with flour in it. And that was enough for her to feel sick. I think that if you know it makes you sick, then why have it at all? I haven't done limited research. I've done extensive research. My little one cannot have wheat or gluten. I don't know if she has Celiac's. It doesn't matter - the result is the same. If she has gluten, she's sick for days or weeks regardless of the diagnosis. I work for a company that trains food services professionals (cafeterias, restaurants, schools) on serving people with special dietary needs. Celiac.com is a great resource and what your nutritionist is telling you to do is very typical. Identifying the culprit making you sick is the hardest part. No one is going to ask you for a note that says you cannot have gluten - it's like asking someone to prove that they cannot walk so they need a wheelchair.
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    Anita Rocchio Williams Oh, and yes I went off Gluten before realizing the the smart path was to get tested first. But after being off it for a week (and feeling better) there was no real advantage of getting sick again for a positive test. When I can get tested in a few month when I am more up to feeling horrible for a diagnosis.

 

OK so I would love it if someone could give me insight as to what "Oranges" is talking about.  

Edited by arocchio

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"Gluten sensitivity is NOT an allergy, although some people (including some with celiac disease) have an allergy to wheat."

  

Thanks for the clarification.  I think I continually use misuse the term "allergy"  That also explains why all the Allergists tell me I am not allergic to anything even thought I seem to always have allergies.

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Nope, not at all.

 

If, all of a sudden, you got tired from eating too many oranges and decided to stop eating them, would that be dangerous? Nope.

 

Allergies can happen at any time, of course. There is no predicting those. However if you feel better off of it, then by all means, don't eat it.

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If you stop eating gluten for a while then start again and it makes you sick, chances are you are you are either gluten intolerant or an undiagnosed celiac. Having celiac type symptoms from gluten is exactly what gluten intolerance is. Your friend either made up the study, misunderstood the study, or the study was done by complete morons.

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For many people with gluten sensitivity, their reaction to it does indeed get worse the longer they are off gluten.  They will react to smaller amounts and their symptoms will be more severe.  However, if they do not have a sensitivity, they will not notice a change at all.  It only happens if your body is sensitive in the first place.  Giving up gluten will not make you suddenly develop an intolerance.  If this happens to you, you already had an intolerance.  You already should not be eating it.   

 

You do not need gluten in your diet to be healthy.  Many will argue that you would be healthier if you eliminated all grains . . . not only wheat.  

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I only eat cauliflower when it's in season. Same as asparagus. So for many months of the year, I don't have even a trace of these foods. When they're back in season, I can eat them no problem.

My husband has gone months eating gluten free, then eats it again if he's out with friends or craves fast food. He does this no problem.

But.. I can't touch gluten. He can't touch cantaloupe. We each have our own food sensitivities. Not eating a particular food doesn't create intolerances; but elimination diets can and do make underlying sensitivities more obvious.

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