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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.

Cyclical Celiac
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9 posts in this topic

I was posting about how mine seemed to start. There are some times in the past when I had bad spells and then appeared to be back to normal for a year or more in between. Withing the last 10 years I can count maybe 3ish that I can recall. I was relatively normal in between until this last one that hit hardest last year. That is when I figured things out. Has anyone heard about anything like that before? It seems like it was building up over time but I never went gluten-free until this year. Of course as a self diagnosed person you ponder if you got it wrong, but I have been greatly improved since going gluten free. I do not doubt the diagnosis, but question if there was more to it or how it started like this.

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Simply put, celiac can wax and wane throughout a person's lifetime. Even though mine was triggered when I was 11, I went through periods of feeling quite well followed by periods of poor health. Since it's an autoimmune disease, celiac can vary over time.

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Simply put, celiac can wax and wane throughout a person's lifetime. Even though mine was triggered when I was 11, I went through periods of feeling quite well followed by periods of poor health. Since it's an autoimmune disease, celiac can vary over time.

This was my experience also until the symptoms became a steadily increasing torture when I was in my thirties. I was triggered at around 4 or 5 years when I developed severe DH but I had C since as long as my Mom could remember.

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My symptoms got better and worse too, from when I was very small until diagnosis.

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I would go through periods of 10 months to a year feeling fine. But this last year they have come much closer and with less breaks in between. Like having the stomach flu 5 times a year. Along with C for as long as I can remember.

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I think this is pretty standard for various autoimmune conditions.

richard

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I am glad to hear this. I expected everyone to say they were hit hard from the start with no let up and that it may not be celiac that i am having issues with. Right now my main issues are determining what I am intolerant of right now, soy and milk so far. boo. celiac sux.

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That's what it seemed like for my daughter. She had a really bad case of stomach flu (her trigger?) and had acid reflux with regurgitation issues afterwards. She went on a prescription strength antacid. It cleared up. It came back. Back on meds. It cleared up. It came back but quicker . . . repeated until it no longer cleared up.

Likewise, when she was healing, she was doing well, then she would have a few days of regurgitation, then she was fine for a month, then a few days of regurgitation . . . until finally she was symptom free. It was frustrating because every time that happened, I assumed she had gotten glutened somehow. In hindsight, she was just still in the process of healing.

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I had good periods too. I've had it my whole life but after I had my first child was when it got really bad. I started getting other things like constant sinus and bronchial infections due to the inflammation too. So there were times when my GI symptoms weren't there but I had other stuff going on.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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