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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?  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

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I was here a while back asking about celiac, my first/original post here.

I had blood tests done, they were negative. I had a scope done last May. I was told I had an ulcer that was likely due to NSAIDs and everything else was normal, including negative biopsy. I never saw lab or patho reports, never thought to ask.

My new problems are this: I thought noticed some swelling in my neck and mentioned it at my physical last month. I had a thyroid ultrasound done and the results were overall enlargement of the gland and there is also a small cyst. I had my dr do blood tests again, I've always felt my symptoms were hypothyroid-like, my TSH was normal, though I am now reading that's not unlikely? I also had her test my sex hormones because I am still on a quest to find out what the hell is wrong with me. My estrogen was very low, and FSH very high, indicating premature ovarian failure/menopause, but I am 28.

I have had somewhat irregular (for me) periods since they returned 9m ago. Shorter and lighter, one only lasting a day. My last period was normal. I had a miscarriage between my 4th and 5th baby, but overall have had no problems with fertility, have 5 children.

My "celiac" symptoms were worse at the end of my last pg and I wonder if that pregnancy is what threw my body into complete turmoil. I have an appt with an Endocrinologist on the 28th, to find out the next step and what all this means.

As soon as I found out my thyroid was messed up and potentially my fertility, my mind immediately went back to all I had read about celiac. Just curious if anyone else has dealt with POF and how possible it is that my negative tests were wrong or if NCGI can cause all of this too.

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Welcome Back Kendra!

I read your first post and the most important statement to me was this:

Everyone brushes all my symptoms into stress of having 4 kids and going to school, but I believe I handle it all quite well and feel like crap all the time. It's not stress. I don't care what anyone says. I know my body and I just don't feel good ever.

You are not imagining the correlation between all of these symptoms. I could have written this myself 20 years ago. Don't let the doctors dismiss you. Make a list of all your symptoms along with their progression to take along to all doctor appointments - this along with a written list of questions and the blood tests you think you need really helps to make sure you get the care you need.

Request written/electronic copies of ALL previous tests - blood, endoscopy/colonoscopy reports, pathology of all biopsies. Post them here if you are unsure what they all mean. Many of us can help interpret celiac, autoimmune and thyroid tests - I doubt there is a medical test that someone around here can't help with.

It is quite possible you did not have a full celiac panel, nutrients tests or enough biopsies of the small intestine to properly diagnose Celiac Disease. Regardless of previous results it would be wise to have both celiac and nutrient tests repeated now.

TSH is not a sufficient test for thyroid. Thyroid Stimulating Hormone is actually a pituitary hormone. You'll need to have Free T3, Free T4 along with thyroid antibody testing.

Autoimmune disorders like to play together - often we have more than one and you are not alone in having many "normal" tests that don't reveal the problem.

I am not saying you have Celiac Disease, but I do know without a doubt that the malabsorption caused by Celiac can cause ALL of your symptoms. There is not a system in the body that can function properly if the body does not obtain the nutrients it needs from food.

Hang in there...it can take a bit of work, but you will get this figured out :)

Oh...don't remove gluten until you are sure all celiac testing is complete.

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I don't know what the cause of my infertility was, but I know it has been 15 years from the last one. All of the while we desired some more. I hope you will return to good health.

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Hi,

The article linked below describes a study done in Italy on non-celiac wheat sensitivity. It confirms the existence of the condition. What we don't know right now is what all the effects of non-celiac wheat sensitivity are.

Non celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

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I'm sorry you've been feeling unwell.

I agree with what Lisa (Gottaski) said. Double check all your celiac tests (get copies) and finish testing if need be. As GFinDC said, it could be NCGI, which is just about as nasty (minus intestinal damage) but harder to diagnose.

Thyroid problems like Hashimotos causes symptoms similar to celiac disease. I have both, and went I went gluten-free, the main improvement was with my stomach aches and headaches; they were much less frequent. But I still felt so tired, achey, hair thinning and still had a slow gut; hashimotos causes that. And with an enlarged thyroid and cyst (nodule?) it sounds like your thyroid is under attack.

I had hypo symptoms and normal (but slightly high between a 2 and 7, a 1 is ideal) TSH tests for almost 15 years. If the doctors had tested my free T4's and T3's, and my TPO Ab levels, I'm pretty confident that I would have been diagnosed years earlier.

Best wishes.

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