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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.

Atypical Symptoms (?), 1 Monthly Attack
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I was Dxed with hypothyroidism in 2008 and lost my once fabulous memory as of late '07 (26 at the time). Since then, I'd always assumed my memory was related to my thyroid, questioned doctors about supplemental T3, had neuropsych testing only this past spring which I'm pretty sure confirmed that I had definite short term memory losses (it was certainly obvious to me), and a clean MRI. Hashimotos encephalopthy was being considered, but never pursued (no other neuro symptoms).

I've had a good gut all my life.

I had a severe gut pain attack in October 2011 that I chalked up to food poisoning. Throwing up, diarrhea.

I had another attack January 2012, another in March, May, June, July (the latter two were a month and a day apart). In June, I had gone to another endocrinologist for a second opinion about the memory thing - He recommended being tested for CELIAC'S, sleep apnea, B12 (its always been fine), maybe some other basics. He suggested celiacs without even hearing about my gut.

I also had a terrible rash on my foot which no salve could cure.

After the July attack, I knew it couldnt possibly be constant food poisoning and went to my GP who suggested trying the gluten-free diet. My antibody tests and others were negative including abdominal ultrasound.

I did the diet July 19-Aug 10 and avoided my august attack. My foot rash pretty much disappeared, so I had to cancel my august dermatology appt.

Started back on gluten. Got the attack again mid-september (1 month and a week after re-starting gluten). The pain was so bad, I called the gastro doctor's office in tears, begging for an earlier appointment. The pain is so nauseating I'll make myself throw up because the constriction offers some relief. I'm on the toilet every 10-15 minutes. Episodes usually last a whole day 7am-5pm, but I have had some shorter.. 7am-2pm. I re-started gluten-free after september. Early october, I had a club sandwich and had a much more minor attack on Oct 16th - which I truly wanted to believe was food poisoning because I had eaten 1.5 week old cheesecake (gluten-free, no less - ha!) - the pain was "different", I was able to sit comfortably for a few minutes, I also didnt have the mental and systemic fatigue that I usually do, and it lasted only a few hours.

My theory is that possibly I have the ill-understood "gluten intolerance", where it builds up to unacceptable levels throughout the month until it reaches threshold and explodes.

IS THIS PLAUSIBLE? ANY OTHER THEORIES?

I see the gastro on Dec 10 and have been gobbling gluten since end of November in preparation.

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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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