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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Testing For Hashimotos
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In short, two questions: what tests should I ask my doctor to run to test for Hashi's? Is it possible to have "normal" TSH, T3, T4 and still have it?

Longer version if you have time to read: In 2005 I was diagnosed with chronic idiopathic urticaria (hives) and angioedema (swelling). I spent a hellish year on heavy antihistamines (don't remember much from that year!) I was able to taper off and the hives didn't come back except for a two or three strays. A couple times I'd get a hive on my eyelid, but only in the next couple of years.

Fast forward to Celiac Diagnosis 2009. Three years later I'm still very fatigued (a bit better, but not well enough to fuction independently). My body temp is often low, I'm underweight although I eat a lot. Most of the heavy anxiety I experienced just before dx has gone away with gluten-free, but I still have stray anxiety when I'm in need of food or during PMS. Tonight I had eaten and it's not that time hormonally when my eyelid started to itch pretty badly. It made me anxious (adrenaline) and I got up to look. I had a hive! Just one-like in years past (chronic urticaria tends to strike eyelids and lips most, and it's not an allergic reaction, but an autoimmune one). So, I'm a little freaked out because I don't want to go back to that issue.

I spent a lot of time researching chronic idiopathic urticaria in '05, but seven years is a long time in the current autoimmune world, so I thought I'd look it up again. Tonight when I looked, two of the first three hits said that many people with chronic urticaria have autoimmune thyroid issues. By many I mean 30-40%. That's pretty huge.

I'm currently on GAPS diet (grain free, etc), and have tested for food allergies (98-skin prick) and have none (although there seem to be a few foods I can't handle for other reasons. I'm fairly certain my eye hive wasn't a food or environmental allergy. If you've dealt with chronic hives you'll know what I mean. I've also started reading about histamine intolerance. Fascinating.

Thoughts? At least I hope to get my questions on Hashi's answered.

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I don't know about Hashimoto's testing (just that my doc said I did NOT have autoimmune thyroiditis--however that was determined). But, I do know a bit about chronic hives. I had them (for the second time) from about October 2010 until October 2011. Ultimately, the only drugs that worked were a combination of zyrtec and a zantac each day. Going cold turkey off the zyrtec also caused hives (I had to make that change very gradual, stopping in December). I started seeing a homeopath in the winter of 2011. Finally, the correct remedy was found in fall 2011. I did this because allopathic medicine did NOTHING. It was a year of misery, I hear what you're saying. One theory I have is that I had a lot of ibuprofen after my third child was born (may 2010) and triggered something. I knew a few other women who also got random hives after having IV ibuprofen at the hospital (or just ibuprofen in general). My lip swelled when having advil in may 2011, and I haven't had any since. (Btw, the first bout with hives was in 2003, starting about eight months after my first child was born, and about four months after I was diagnosed with postpartum thyroiditis. I also saw the homeopath then. They definitely weren't as bad that time, lasting only five months or so and even disappearing completely in Florida--sun can do that, but not the bout I had last year.)

Allergy testing: blood tests were largely negative (some mild inconsequential allergies), and I couldn't do skin tests because I couldn't go off the antihistamines at all

Skin patch testing: nickel allergy, balsam of peru allergy (I eat foods containing those things, but don't wear anything with nickel, still don't eat raspberries or food dyes, and don't overdo citrus)

The celiac tests were NORMAL in November 2011. I had been gluten "lite", but not in the 30 days prior to the tests. Then, I was eating gluten every day. I tried gluten-free, sort of. Nothing really seemed to make a difference hives-wise. Some things made them obviously worse.

Anyway, I recommend skin patch testing (with a dermatologist who knows about this), and seeing a homeopath.

For other reasons (inability to lose weight despite exercise, gaining more around the middle), I'm trying gluten-free for real right now. It also occurred to me, after reading an article here, that my thyroid meds (levoxyl) are a higher dose than they should be for my weight. I guess I should be at 75mcg, but I'm at 100mcg. It's not a huge difference, but just one more thing that is a bit off. With the hives, I felt like I could do nothing--no exercise, anything I did with eating felt obsessive since it was obvious I still had the hives no matter what I did. There was a definite connection in the "literature" between gluten, hypothyroidism (of course, autoimmune hypothyroidism, which apparently I don't have), and chronic hives, but I wasn't seeing any difference and it was just too depressing.

Good luck!

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They need to run an antibodies test for Hashimoto's. It is possible to have normal levels as the thyroid works in overdrive trying to overcome the attack.

http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Oh, that's interesting. I was negative for Test #2 on that list, but Test #1 was not run. Thanks for that information!

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In short, two questions: what tests should I ask my doctor to run to test for Hashi's? Is it possible to have "normal" TSH, T3, T4 and still have it?

Thoughts? At least I hope to get my questions on Hashi's answered.

Yes, you can have normal TSH/T3/T4 and have Hashimoto's. Hashi's tests are anti-thyroid peroxidase (anti-TPO) and anti-thyroglubulin (TgAb). If they did not do both, they cannot diagnose Hashimoto's.

Which T3/T4 tests have they run? They should have done "free" T3 and "free" T4, totals don't tell you much.

And just how normal is your TSH? Have you gotten copies of your lab reports? If you post them here someone can take a look and give better help. Many doctors will tell you your TSH is normal, but they may be using a range that is far too wide for most people. If you are a high normal on TSH, you could be progressing to an ever higher number. And you could be miserable until the docs decide they are ready to treat you.

I don't know much about chronic urticaria, but my cursory reading indicates that thyroid treatment helps a LOT of people who have it.

There is always the possibility that there is more going on. Autoimmune people have very complicated issues!

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