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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

Feeling Insane, Pre-Diagnosis, But On Track
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Hi! I'm Jen and I might not be crazy.

I've been struggling with weird symptoms for years and years, I'm 31 now and strange things have been happening since I was a little baby. As a baby I was treated as though something was wrong, the older I got the more I was told I was nuts and my symptoms didn't make sense.

Over the last couple of years I've been feeling worse and worse. Test after test after test after test. Testing for lupus, rheumatoid arthritis, thyroid disorders and much more.

I was tested positive for Hashimoto's disease, and I thought I finally found the answer, but I met with an endocrinologist and he told me that regardless of having incredibly high anti-thyroglobulin antibodies, that my thyroid function is normal and that none of my symptoms are related. However, today he ran the blood tests to see if I have Celiac disease.

Now I'm just terrified that this isn't the answer and I don't know what else to do.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

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Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

You are going to need that patience, both with yourself and others, if your tests come back positive, or even if you trial the gluten free diet if they are negative. And the Ah ha moments continue - I still have at least one new one every day :rolleyes: Yes, patience is a virtue designed especially for celiacs, and those without it have a hard time. Bonne chance on your test results.

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    • His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded.  Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months.  Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.
    • You finally know what has been slowly and painfully killing you. Recovery will not be quick but it will come. You will find yourself running up the stairs in 6 months and will sit sobbing at the top for half an hour. It will be about 5 years and lots of PT before you will walk normally again but not long ago you remodeled the bathroom because you were told you would be in a wheelchair soon. The nightly agonizing hours in the bathroom will be replaced with a solid eight hours sleep now except when you accidentally get glutened. Those glutening will come farther and farther apart though as you get better at the lifestyle.  It seems like there is nothing you can eat right now but that will change as more folks are diagnosed and more foods become better labeled.  Your skin will heal and your hair will grow back. That early gray isn't going away but eventually you will prefer it to having to dye it every three weeks or so because it now grows faster than it has at any time in your life. You will have lots of times that you feel sorry for yourself but a quick trip to look at that tackle box full of meds you no longer need will be a comfort. You will have some residual damage even years later but nothing you can't handle. You will be able to work again and to go back and finish those degrees but you will go back to school too soon. Don't be too hard on yourself as a couple years after that you will have recovered enough to take and pass those classes. Your life isn't over with this diagnosis it is just going to be different. But it will be a better different without the pain and moodiness. Eventually your family will understand and stop the eyerolls because they will see you healing. It will be hard socially but your social life was always tough anyway.  The important thing is you will get your health back and that is more important than grabbing a quick meal at a take out joint. Hang in there.
    • I can understand doctors being cautious and wanting certainty before diagnosing a youngster with a lifelong condition that will limit their already limited dietary choices. Even so, his figures seem to make a very strong case and I wonder what their rationale is for waiting 3 months? That seems to be time that could be better spent getting him healthier on a gluten-free diet. I wonder if you can ask them what clinical advantages the delay will bring? Either it could speed the process along, or at least you'd get a better understanding of why they advocate a delay? 
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