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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
InterestsSkiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)
Most folks are back in normal range after a year....if completely gluten free.
Folks that remain positive either started off with extremely high positives or are not completely gluten free. Compare results to original antibody levels. If you don't know them, as for a written copy from your doctors.
As mentioned, it is a very good idea to check that nutrient levels are all good
The celiac antibody tests are IgA and IgG based. With deficient total serum IgA, the IgA based celiac antibody tests are not valid and make the IgG tests that much more important.
Another important item you mention was deficient Vitamin D...celiac disease prevents proper absorption of many nutrients.
It takes a doctor that understands the combination of symptoms, nutritional deficiencies and proper celiac antibody testing to diagnose celiac disease in many cases.
I agree with the diagnosis, but highly suggest further nutrient testing as many need to supplement until the digestive system has a chance to heal and begin to properly absorb nutrients.
All that said...if you are not comfortable with the diagnosis, I suggest you seek out a gastroenterologist with celiac experience to discuss the possibility of further testing.
Undiagnosed celiac disease can cause all of the symptoms known as Fibromyalgia....as others have mentioned, it can take time for these symptoms to improve.
The complete removal of gluten is not an easy transition, but once you are past the learning curve it becomes much easier to live gluten-free.. Do read the newbie thread others have linked to.
If you are thinking of consulting with Gastro...do not remove gluten until you do. Further testing (endoscopy with small intestine biopsy) requires continued gluten consumption until the endo has been completed.
I have had virtually NO cold or flu bugs since I was diagnosed with celiac disease five and a half years ago. I have had many autoimmune flares that can feel worse than the worst flu....yet, knowing I wasn't catching every bug flying by....was and is comforting.
I drink Red Wine with no issue...suprisingly as it is high in histamine, but I don't question it...I just enjoy it
Have you already lost other alcohols like vodka?
And you aren't a whiner because you are frustrated, but same rule...keep trying to find something that works with your body.
Glad to hear you are able to attend social events...it's been difficult for me to attend anything after 3pm for most of the last 15 years so I celebrate every time I can go out...with or without wine in tow
I could have written your exact post many times...as recently as a year ago.
For better or worse we have learned to never think we have solved the complete puzzle...I have had three major periods of improvement since diagnosed with Celiac Disease in 2009. Each was followed with a flare that was worse than any previous flare which made us beyond frustrated that each time we thought we had the solution I was struck back down.
What I have learned after the last two periods that I call my "Human Amoeba" stages (months of severe flare and brain fog that becomes brain numb along with loss of all use of muscles and tremendous joint pain) that I need to accept making adaptations to my world while continuing to research and work with the best doctors I can find to gain more usable hours in the day.
How's that for a bummer? Amazingly, I remain extremely hopeful and eager to learn as much as I can about how this silly body of mine works -- added bonus is my kids and grands all have symptoms similar to mine throughout my life so I am excited that their lives will be greatly improved by what I continue to learn.
Hang in there and keep researching...none of us is identical, but many of us have common symptoms and issues. You aren't alone in this struggle.
In my opinion, those that do not improve with strict removal of gluten after six months need to find what the right group of foods is for them. It took me nearly four years to find the optimum foods for me....beyond frustrating, but worth the effort.