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 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?
Support this site by shopping at The Celiac.com Store.
My question was were you 100% gluten free, as in tossed out your contaminated cook ware, cutting boards, and used clean non contaminated cook ware, utensils etc. Did you get rid of all contaminated spices, condiment, jars with crumbs, clean out the house check your lotions, shampoo, etc. Stop eating out, changed to a whole foods diet. and supplemented for the common nutrients that cause issues for celiacs? Did you get tested for nutrient levels? Did you try removing dairy, and oats? On another note many of us develop food intolerance and random issues with other foods that normally has to be identified by keeping a food jounel and going through a elimination diet seeing how you feel eating different foods and eliminating the ones that cause you to feel bad.
Alessio Fasano at Mass General. or Maureen Leonard. Mass General has a Celiac disease program at the Children's Hospital there in Boston. You literally could not be any closer to the best. Good luck.
I went there as an adult and they do provide virtual visits once you're established as well. So if you're not very close to Boston that is probably also an option.
You need to get a full celiac panel including ttg, dgp, ema and overall iga. all of those should be ordered I would be suspicious of a doctor who did not order the entire panel.
a lot of people on here including myself started off with a GI doctor who was not too Savvy with celiac disease and ended up having to get second opinions.
you may want to consider getting the genetic tests as well however know that 30 to 40% of the population carries the gene it does not mean it will be activated. If you do not carry the gene It practically rules out Celiac. If you do carry it you will need to undergo further testing.
do not stop eating gluten until all the testing has been done. a lot of folks make that mistake as well.
Keep us posted.
you should probably get some vitamin levels done as well iron, vitamin D, B12 to start.
These results, assuming you have been on a gluten free diet since the original tests in 2015, likely mean you are still being exposed to gluten which is why you still feel shitty.
Go see a GI or go on a non processed gluten free no going out to eat strict diet for 3 months and see how you feel.
Kitty! Thank you so much! Reading these words is so reassuring.... I've had a horrid weekend googling 'white spot on tongue' - so many horror stories about such a symptom. I then read a few more articles which were more balanced and gave other things - such as teeth grinding and sharp teeth being a cause, which for my sanity's sake I'm trying to focus on! Esp. as said sore is remaining stubbornly on my tongue!
I must thank you for the links, too.
Fascinating: In one it talks about 'Crazy muscle cramps in the form of stabbing pains in toes, calves, arches of feet, and backs of legs.'
The Deficiency: Magnesium, calcium, and potassium. "If it's happening frequently, it's a tip-off that you're lacking in these,"
That's absolutely incredible - I never knew that, as at night I am being woken by these pains in my toes and feet. Thank you so much. I did used to supplement these things and have stopped. I will look into this and try to eat more healthily and supplement too in the short to medium term while I recover.
I'm off to see my doctor tomorrow so having this information that you have sent in mind will be so helpful.
My tongue is the weirdest colour - my dentist spotted it straight away and said, 'Wow, you are anemic'. So if my ferritin is low - which I know it is - I'm probably running other deficiencies too.
Thank you so much again for taking the time to post.