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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.

Need A Reason Not To "cheat" On Diet
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6 posts in this topic

I know that some of us here (like myself) went through horrendous experiences and will therefore never knowingly touch gluten again. However, I know some people were diagnosed and didn't have many symptoms to speak of and don't get a physical reminder if some gluten slips in.

I'd like to be able to offer something concrete to someone I know that cheats once in a while since they don't get a reaction. Are there stories here or elsewhere I can point her to? She's smart, but young, away from home, and invincible. I can't just say, "you might get cancer" (like trying to tell a smoker to quit...). I don't think she'll come on here and browse on her own.

Thoughts?

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If she knew there were a violent man who hated women, and loved to torture them, loose in the neighborhood, who had just escaped from jail, would she walk the streets alone at night? That is the equivalent of what she is doing, the kind of risk she is taking, if she continues to eat gluten. He may not find her, but if everyone else is indoors safe, he very well might. That is the kind of risk she is taking. If she is not afraid of harm, is not afraid of dying a tortured death, well I guess that is her business. There is nothing you can do to protect her. She may say she is a karate master and can defend herself - well, good luck. You can only fight back against gluten by avoiding it.

Not much help I am afraid for someone who won't listen.

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and unfortunately you cannot make anyone do things they don't want to...i was clearly sick for a LONG time without symptoms since the damage was so horrendous but if I had known sooner, I maybe could have avoided the HELL i am in right now. When it hit, it hit me hard and I was 42. Thought I would end up in a wheelchair from neurological symptoms. This diagnosis is a GIFT. She can avoid SO much trouble...Too bad she can;t come live in my broken body for a bit to see what her future likely holds.

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Well, I lost almost 6% of my bone density 14 months, and of that time I was only clearly symptommatic for 2. Do the math, and she'll have stress fractures and non-traumtic breaks within 10 years. Yay, hip fractures in your thirties and forties! (Those results were very weird. Scared me silly, and it was just incidental that I worked in a research center and happened to demo/teach the scanner twice.)

Anemia is also insidious-- you adjust to the new "normal" but it is not normal to be out of breath after going up two flights of stairs at a normal pace.

Or maybe she'll develop a higher sensitivity and that problem will solve itself? Not that I actually wish that on anyone.

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Well, I lost almost 6% of my bone density 14 months, and of that time I was only clearly symptommatic for 2. Do the math, and she'll have stress fractures and non-traumtic breaks within 10 years.

Wow. That's a frightening rate - I had no idea that such bone loss was possible so quickly. I meet w/ my GI doc in 3 weeks and the gene test and a bone scan for a baseline on my list.

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Well, cancer isn't as far out as she might think. I just lost a friend to cancer at 35. He had Crohn's not Celiac, but it's similar enough to be scary (I have another friend with Crohn's that manages her disease by being gluten free).

He was sick at 32 with cancer, got it to go into remission and then it came back right after he met his girlfriend. He passed away a month ago.

It's just not worth it to mess around with your life. It might seem ok when you're young....but it will bite you in the butt later.

This from a girl who NSAID her way to leaky gut at 15 {braces hurt!} and suffered through 13 years of chronic pain, illness and allergies before discovering what the underlying issue was.

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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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