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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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Behavior Is The Biggest Manifestation Of My Disease: Anxiety, Trichotillomania, Collecting/hoarding
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I just want to put this out here for other people who may be struggling with these issues: You are not alone.

I have been a hair-puller (trichotillomania) for all my adult life. I get intense itching and feel that the only relief I can find is to remove the hair at the source of itching. When I first went gluten-free, I noticed that the intensity of the itching and the urge to pull went away. Then I learned about DH. When I'm accidentally glutened, the bumps on my head come back, and the urge to scratch/itch/pull is uncontrollable. I don't get any relief, and by the time I'm done ravaging my hair, I've got a bald spot.

Glutening also makes me a demon-possessed acquirer of things. I will go on shopping binges. It doesn't matter what it is...shoes, scarves, pens, whatever comes up as a need at the moment turns into a day-long mission to find as many of that thing as I can come up with. A couple days later, I look back, and I'm like "what was I thinking?" When I don't have gluten, I'm fine, and can easily use "executive decision making" to determine what is really needed and what is not.

My dad, who also had undiagnosed celiac disease, was the same way. When he died, and we cleaned out his drawers of things, we found collections of watches, pens, eraser refills, tie tacks...You name it...there wasn't just one, two, or three of things...but dozens. And we also heard that his brother did the same thing, but his penchant was for coffee. He had chest freezers full of coffee imported from Costa Rica.

My anxiety levels pre-diagnosis of gluten sensitivity were off the charts. I would stress at everything, My heart rate would accelerate to 180bpm for no apparent reason. I was diagnosed with dysautonomia, but Ativan would bring my heart rate down and my thinking more clear. I had an overwhelming sense of dread at everything.

Depression? Don't even get me started...No amount of Lexapro or Amitriptyline could lift me up....

Migraines were the worst. It was as if my brain was dying one quadrant at a time. The fact that low cerebellar volume has been associated with celiac disease is not surprising to me. I can actually feel my brain being killed when I'm glutened.

I would get dizzy, unable to walk a straight line.

Fibromyalgia? Intense. Everything hurt. All the time.

After being 6 months gluten-free, I am a new person. I can exercise again. I don't go in the the blank stare/anti-able-to-concentrate state. But even the slightest amount of cross-contamination sends me into hell. Bumps on my head, a feeling of worthlessness and hopelessness, I start packing things away like a squirrel saves nuts, I can't focus, and I get migraine more intensely than I have before.

I don't think there is enough research being done on the neurological impacts of gluten. I believe in my heart of hearts that the damage is just as severe, if not worse, than damage done to the gut in celiacs. I am convinced that so many of the behavioral problems we see in society today are gluten-related. ADHD, autism, insatiable appetite (hence obesity), OCD, chronic pain, Alzheimer's etc etc....

So if you are suffering, know that you are not alone. Stay away from gluten, eat lots of green leafy veg, fruits, and you will be fine.

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The Costa Rican coffee, I can understand. It is SOOOOO GOOOOOOOOD! :)

I have noticed with myself that when I get glutened I get REALLY grumpy. I don't think the grumps are because I don't feel good either. A lot of times I just get a minor psoriasis outbreak which isn't that bad. But oh, you don't want to be around me then. If I drop something on the floor, instead of "Oops" and picking it up, I am more likely to use some of those words that always help mechanics when they are working on a car, while I kick the item across the floor. When I'm behind the wheel I am likely to be screaming, "Get out of my WAY!" at the driver in front of me. And when the neighbor's dog is barking incessantly, rather than saying, "Knock it off" I am more likely to point my finger at it and say, "DIE!"

I can't stand being around MYSELF when I'm like that, but I am helpless to stop it.

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    • I do have a referral to another GI at one of the top hospitals in North Carolina. I'm just waiting on the call to schedule an appointment. 
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    • Hello and welcome Its good that your doctor has ordered the celiac test, not sure why your GI didn't, as you say perhaps he was presupposing IBS... You mention cutting out food, you haven't tried cutting gluten yet have you? That can throw the results of any testing. You are best to stay on it for now at least, once testing is done it would be worth trying the gluten-free diet regardless of results. Dont lose heart, be persistent, get those answers and best of luck!
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