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.
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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
Where can I buy gluten-free stuff?
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I was just diagnosed a little over a month ago, so I'm not sure if I'm the best person to reply, but if I were you I would get the panel redrawn and make sure they include EMA and DGP.
I am a 24 year old female and had a similar (although not nearly as drawn out) situation about a year before my diagnosis. I had been having symptoms for several years with no answer, and went to another primary care doc who wanted to test me. I'm not sure if she ordered the wrong thing by mistake, or didn't know enough about it, but she ordered 1 test-- just the TTG IgG (instead of IgA) and it was positive. I was referred to a GI who said that test wasn't the best one, but he would do a biopsy anyway. It was negative so he said I didn't have celiac. I wish I had asked him to redo the whole panel back then, but I hadn't done enough research at that time. This past December I went to another doctor for the same problems, still trying to find an answer, and my blood work showed anemia and other vitamin deficiencies, so I asked her to run the full celiac panel and I was positive on everything. I went to a different GI to have the biopsy done it was positive (he said he would be very thorough so nothing was missed and took 11 biopsies).
Anyway, long story, but if I had pushed to have all the tests done and found the right doctor, I would have had my diagnosis a year earlier. Keep fighting until you get all the answers you need (and before you give up gluten for good). I've read some posts on this board of people who are only positive on the DGP. Its interesting that you had a high positive before and now its been low or negative, but I would think that has to mean something.
Palvyre- There are a lots of things that contribute to osteoporosis. I am wondering if you had your testosterone levels checked as well? There are many treatments for osteoporosis, depending on the cause. Fosamax (bisphosphanates) are certainly not the only ones!
Hormones, Prolia, Forteo and there are several new ones ready to be approved by the FDA right now. If you haven't seen an endocrinologist, you could consider it. I figure it never hurts to ask a specialist a question. They could say there's no extra treatment right now or they could know of something that was meant just for someone like you.
My fourth grade teacher taught me there are never any dumb questions!
An antibody flare up will keep causing damage for weeks or months after a exposure even if you have no symptoms, I am sure someone else will show you the document ion on this on another post. My suggestion is invest in a testing kit or a Nima kit to test stuff if you have to. Pack some sealed nuts, seeds, dried fruits, bars, or a container of meal replacement shake for the trip. Nuts.com for nuts, Gerbs for dried fruit and seeds, and I would suggest kind, julian bakery, or many other bars, as for shakes pioneer labs makes a celiac shake, MRM makes some good shakes and there are several others.
I'm a young 20-something living a gluten-free life in the UK. Socialising can be very difficult as I don't like wine and don't trust the distillation process used on liqueurs such as Jack Daniels (previously my favourite option).
Does anyone with a severe gluten sensitivity have any trusted mainstream brands of alcohol which are 100% gluten-free (aside from wine)? Preferably ones that can be found in a typical UK pub.
Thanks in advance!