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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.

Outgrowing Celiac
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15 posts in this topic

Since my 3 1/2 year old daughter was diagnosed a couple of weeks ago, I can't tell you how many people have said they had celiac when they were younger and outgrew it. From everything I've read, this is impossible - right? I told them maybe it's because they were misdiagnosed; the tests back then can't be as good as they are now. But one relative said her husband was definitively diagnosed by a hospital (he's in his 50s now, I think).

So what can I say to these people? How do you explain these "diagnoses?"

Thanks!

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You can't outgrow celiac. You may go through a phase of your life where you have alot of symptoms then the symptoms go away in another phase of your life but no matter what it is still doing damage. Once you have it you have it...nothing you can do except follow the gluten free diet.

I've heard that alot too but they don't understand celiac. They obviously are misinformed. Tell them to come to this site and research it more to make sure they get their facts straight.

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One line from the National Institutes of Health consensus report on celiac says it all:

"The management of celiac disease is a gluten-free diet for life."

richard

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Here's something I just posted to another thread:

A lot of food sensitivities are often temporary. But gluten is not a food sensitivity, it is an autoimmune reaction which is a whole other ball of wax. Once your body is trained to react that way to gluten, it will never forget. It's like when you get a flu shot - you get a weakened version of the flu virus injected and your body reacts by building an immune reaction to it. So then in the future, if you are exposed to the same virus, like someone else around you is sick with it, your body is already trained in what to do with that virus - it has the antibodies built up inside, ready to go. Gluten is the same as the virus in your body - your body sees it and says, oh, where are those antibodies - and the antibodies attack your body, instead of the gluten. It never forgets how to do this, even though it is an inappropriate reaction.

Maybe that explanation will help?

Stephanie

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a few decades ago, doctors thought that you could outgrow it, since symptoms manifest differently in adults than children many times. we know now that this is wrong, but a lot of people were told incorrect information decades ago but still go by it.

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I usually tell people that there has been a lot of new research on celiac disease in the past decade and that we now have new information that children do not outgrow celiac disease. As Tarnalberry said, symptoms in adulthood often seem to resolve, but the autoimmune response is still occuring and still damaging the body. Teenagers often experience a period of having few if any symptoms and this is why doctors used to think that children outgrew the disease.

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We have run into this too and I usually just say "Yeah, doctors used to think you could outgrow it, but the research has proven them wrong and modern doctors know you need to stay gluten-free permanently" and then we move the conversation along. I'm not sure what motivates those kind of comments! But let's not get started again on the "stupid things people have said" thread :)

Joanna

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I have one person I have encountered multiple times who keeps telling me about how her son had Celaic when he was a child, but he outgrew it. I have tried to tell her differently, but she has no intention of hearing what I have to say. As far as she is concerned her son is fine now and won't have to deal with that difficult diet again! The worst part about it is that she is a nurse. I wish that she would at least be open to learning that if her son starts to have other symptoms that he should be tested again and go back on the diet, but she is not hearing me at this time. I wish I knew her son personally. He might be open to hearing the information. Who knows, he might be having symptoms, but what grown man wants to discuss his "bathroom problems" with his mom! ;)

God bless,

Mariann

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There are at least three (3) factors required for celiac disease to be present.

Presence of genes

Presence of decreased intestinal integrity (i.e. something that alters the bacterial balance in the intestine)

Presence of gluten

I believe that there is a fourth factor as well that I won't go into for now.

What's important to realise is that some cases of celiac disease actually have gone into remission (possibly through the regaining of full intestinal integrity). This is very different from 'outgrowing' the disease as it is likely that as soon as 'leaky gut syndrome' strikes again there will almost certainly be a 'relapse'.

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Exactly. I was one of those who had several periods of "remission" throughout my teenage and young adult years. I had been told by doctors that I had outgrown my "wheat allergy" and since it didn't make me sick anymore I believed them. But celiac stays forever, sometimes quietly lurking, waiting for the next illness or stressful event to make it active again. It is frustrating when you talk to people who swear they or their children outgrew it. I simply tell them that doctors only recently learned that the disease never actually goes away, even when it seems dormant, and suggest they look into some recent research. Its pointles to send them to thei doctors- few of their doctors would even recognize the fact.

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No, it cannot be outgrown. It does not go away. Some allergies may, asthma possibly can, but not Coeliac Disease, not diabetes either. I encounter this with my daughter's Autism too, people telling me they knew someone was "a little bit autistic" as a child who outgrew it. No, they may have learnt to manage it, but it never goes away. Some things are for life. People need to keep up with the current research.

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I don't feel the risk of lymphoma or melanoma or another type of cancer is worth the risk of letting my child eat gluten again. Even if he has no symptoms from eating it one or twice .... Could just be that he isn't that "sensitive" to it.

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The risk if lymphoma and infertility is why I keep my 12 year old silent celiac gluten free. She could eat a loaf of bread with no problem. I understand how 98% are undiagnosed. However, sometimes I wonder if I have traded one cancer risk for another. I cook her food on aluminum foil and supposedly that's bad. She also eats rice in some form almost every meal. Now I read about arsenic. I hope I am not just trading one thing for another.

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The risk if lymphoma and infertility is why I keep my 12 year old silent celiac gluten free. She could eat a loaf of bread with no problem. I understand how 98% are undiagnosed. However, sometimes I wonder if I have traded one cancer risk for another. I cook her food on aluminum foil and supposedly that's bad. She also eats rice in some form almost every meal. Now I read about arsenic. I hope I am not just trading one thing for another.

If every day you followed the health advice for that particular day, you would drive yourself crazy. :blink: You would be doing what you weren't doing yesterday, and not doing what you were doing yesterday. All you can do is apply a reasoned mind and weigh the balance of the evidence and do what you think is best. :D

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The risk if lymphoma and infertility is why I keep my 12 year old silent celiac gluten free. She could eat a loaf of bread with no problem. I understand how 98% are undiagnosed. However, sometimes I wonder if I have traded one cancer risk for another. I cook her food on aluminum foil and supposedly that's bad. She also eats rice in some form almost every meal. Now I read about arsenic. I hope I am not just trading one thing for another.

In my opinion, we'll all die of something someday. So it isn't worth worrying over such things (such as the rice).

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    • celiac disease is psychosomatic
      I was diagnosed a couple years ago and started gluten-free diet then. Test also showed damage to my small intestine. I explained to this doctor how I was barely able to get out of bed when I ate gluten in the pastand my intestines are still recovering from the damage. I only discussed this briefly. I consulted with this doctor concerning my dizziness explaining that I get dizzy/migraines when I eat gluten due to my celiac disease. I further explained that my dizziness has been cut in half since I went on a gluten-free diet so I am better able to get out of bed. The consult was about taking tests to figure out if something in my brain was causing my dizziness or this doctor specialized in testing the brain for impairments. In her summary, she stated that my memory impairments were probably due to being precoccupied with thinking about my psychosomatic symptoms. However, I only though about the test when I took it. And I only think about whatever task I am trying to remember when I try to remember it! I feel my symptoms rather than think about them all day long.
    • celiac disease is psychosomatic
      If you don't get the diagnosis you are happy with go to another doc.  Try to find a Celiac Friendly doc.  OR you can do what i did and give up and just go gluten free.  I didn't need a doctor to confirm that if my gas, bloating, migraines, depression, joint pain, rash, dry skin and brittle nails went away when i went gluten free that i must have celiac.  AND 6 months after i went gluten free on my own i had some blood tests repeated that i had done when they were trying to figure out what was causing my severe rash, all the things that were "wrong" with me or abnormal in the the first blood tests, went to normal on the second test.  INCLUDING MY THYROID LEVELS! Oh, i didn't mention that during this time they diagnosed me with early hashimotos.. 6 months later i was miraculously cured from this progressive thyroid disorder according to the blood test results.  I didn't have hashimotos to put it bluntly.   I am almost 10 years gluten free with no positive Celiac diagnosis.  But let me tell you this,  My daughter's neurologist did a DNA test on her 1 year after she too went gluten free and it came back positive for Celiac.  so.  js.     That's my story..  in short.
    • celiac disease is psychosomatic
      Were you officially diagnosed with Celiac Disease at the time she wrote that?  And, if so, for how long were you diagnosed & gluten-free but still complaining of those symptoms?
    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.   I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by celiac disease, another medical condition or it just turns out to be a stand alone problem, one book that I would recommend that really helped me understand the condition is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
    • celiac disease is psychosomatic
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