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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.

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Hello, I have been reading through the boards with a lump in my throat on the verge of tears. it makes me happy to find so many people have found out what is wrong, and are improving, however I have had no such luck. In the past month three people have called me to diagnose me, and I have told them the same thing: I was tested years ago, and I don't have it!

But everything I read suggests i do. It has been seven years, after a road trip around the country, that I have been "ill". What started with "my stomach hurts" has turned into years of increasing agony, testing, and no relief. Years of prescribed meds have done nothing but turned me off to medication. My gallbladder has been removed, and i have been poked and prodded more times than i care to count. I have been told "IBS" and i REFUSE to accept that.

I started with small amounts of stomach discomfort, bloating, pains. Those pains became more frequent and turned into all-out episodes of excruciating pain almost daily. Then the diarrhea started. Every day for years now, I have been in the bathroom more than 5 times a day. Then started the food restrictions, some at the doctors orders (following diagnosis after diagnosis) and the medications. I took more and more pills, ate less and less, and went to the bathroom more and more. Then the first panic attack hit. It has been downhill ever since. For two years I have been

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Assuming your doctor did the right tests, which is a HUGE assumption, you may still have a false negative. And that's EVEN if he/she was being generous reading the results. (For instance, four out of my five tests came back "negative" - the lab doesn't have a quantitative number. Only my antireticulin IgG (I think) came back positive. Not exactly a classic diagnosis, and most docs would have said "Oh, you're not celiac." But my doc labeled the results "inconclusive", and I tried a gluten-free diet, and even though I'm close to asymptomatic, I still noticed a difference.)

Honestly, the easiest thing to do is to just try the gluten-free diet. If you keep things simple, it's really not as hard as it sounds. Particularly if you focus on eating whole foods that are obviously gluten free, like rice, vegetables, beans, fruit, meat, etc. You may find that - with a bit of help and advice - "trying" a gluten-free diet isn't hard. It's likely - at this point - going to be easier than getting a doctor to help you figure out what the problem is! It could mean a month or two of bland, boring food. But that may lead you to your final answer.

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Mindy,

You sound like me, only more so! I'm 27 years old, too, and I feel like my body has been slowly betraying me ever since I was born. Doctors have never been able to figure me out. I didn't have digestive symptoms until recently, though, so I fortunately haven't had to deal with the "cop-out" diagnosis of IBS.

Let me reassure you of one thing: NONE of this is in your head! It is all real, and it most emphatically DOES sound like celiac disease. It is definitely possible for blood tests to come back negative and be wrong--and the same is true of a biopsy. Tests for thyroid function are also of questionable value, since they say nothing about what is normal for YOU--just the mythical "average" individual. Allergy tests will not detect celiac disease, because allergies and celiac disease are mediated by different elements of the immune system.

I am sure you will want to have a look at Enterolab.com. They offer a panel of tests for celiac disease that are reportedly MORE sensitive than blood work or even a biopsy, and the price ($100-$400) is reasonable when you stop to think about it. I believe these tests are fairly new, which explains why they are not used by mainstream doctors yet--most doctors continue to operate on research that is ten to fifteen years out of date! As soon as I can afford it, I will be having myself and my children tested (and my husband as well, if I can convince him to play along), even though my intuition tells me I have found the problem and we are all doing much better on a gluten-free diet.

If you get to the point where you are ready to try going gluten-free, a nutritionist or dietitian FAMILIAR WITH celiac disease would be invaluable to you. Remember, too, that we are all here to help you through the adjustment process--just let us know how we can help!

I have noticed that celiac disease has been getting a fair bit of press time recently, which is wonderful! Now, perhaps, doctors will catch on that this "rare" disease isn't so uncommon after all, and people won't have to suffer needlessly for 27 years--or longer--before getting an accurate diagnosis! Good luck to you!

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    • 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.  
    • Will my doctor test me? So many symptoms...
      Hi! I was hoping some of you might be able to tell me if my symptoms seem like good reason to be tested for celiac disease... I actually asked my doctor to test me (years ago) and she told me she would not test me because the test is expensive... However, I am now desperate to figure out how to manage my health issues and am willing to find a doctor that WILL test me if my symptoms seem to point to celiac...Here they are:
      I have been diagnosed with all of the following over the last 12 years (I am 22 years old, and have always been a healthy weight/slightly underweight, and quite active):
      Irritable Bowel Syndrome Fibromyalgia Anorexia (started when I was 10, I have been mostly recovered since I was 14) Depression Anxiety Panic Attacks Horrible mood swings (from suicidal to totally fine in a matter of minutes)
        Chronic constipation and bloating Acne   HOWEVER, no one in my family has been diagnosed with celiac....am I wrong to think I have it??
    • Weird Reaction
      Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest.  Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says. In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox. Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research. My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date.  I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and nausea seems to have returned to. It's funny that as I get older any little thing I get I seem to think it's life threatening even though all the tests I get back say I'm in good health. I guess that's part of that dread and doom and gloom feeling I mentioned earlier. Wish that would go away.  
    • Gluten and panic attacks
      There are great gluten-free pizza crusts out there, as well as good dairy free cheese. I find the key is to add good toppings, e.g. meats, carmelized onions, other veggies, white anchovies. Life goes on. Congrats. Hope the good feelings keep up. 
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