Blood test

[KittyKat66]

I was tested 3 years ago blood work and told I had celiac I had no idea what it was I had not had any symptoms of celiac so I stopped eating gluten I don't feel much different except perhaps less bloating and gas I had a colonoscopy and D gastroenterologist also questioned the fact that I had Celiac because I had 0 damage so I quit gluten anyway and today I still question the fact that I was diagnosed with Celiac so I went to have another blood test and they would not give it to me because I have been off of gluten for 2 years if Celiac is genetic why would it matter if I'm on or off gluten for blood work?

[Scott Adams]

So if you have gluten sensitivity your body will produce antibodies that can be detected, but only after you've been eating gluten daily for 4-6 weeks. More about the blood tests are here:

 

Feel free to share your test results, but if you were diagnosed with celiac disease you need to be gluten-free, even if you don't have any symptoms.

[Ennis-TX]

The blood test checks for antibodies, if your not eating gluten then your body does not go on the attack and produce the antibodies.
A colonoscopy would not show any celiac damage as it is for the large intestine, a endoscopy is used going down the throat, through the stomach and checks damage in the small intestines, many times the damage can only be seen under a microscope and requires biopsies to be take,.

If you want to get the blood test again and a endoscopy with biopsies you would need to do a gluten challenge eating 1-2 slices of bread a day for 6-8 weeks.

Also double check the newbie 101 thread to be sure, I learned over the first years no to trust eating out if not dedicated, and how to read labels, throw out contaminated cookware, and which brands were safe for me.
 

[cyclinglady]

Get your celiac blood tests that you had a few years ago.  Everyone should maintain their own medical records.  What if you were arrested?   If you had the documents, you could insure that the jail would be required to give you a gluten free diet — at least in the US.  I waived my diagnosis (letter from my GI) at the high school stadium when they refused to let me bring in my own food.  Pretty handy.  

 If your results were indeed positive, then ask to have those same celiac disease tests repeated.  If the tests show this time as negative, you have your answer — you probably have celiac disease.  You have healed or are healing.  

Why no damage on your endoscopy (I assume you meant endoscopy which is down your throat)?  Well, either you were just starting to develop celiac disease, your damage was not found (small intestine is the size  of a tennis court), or your GI did not take enough biopsies.  Again, you should have the GI and pathologist’s report in your possession.  

Genetic?  More than 35% of the population carries the celiac genes. That is a ton of people!  But only a few actually do develop it.  In the entire population it is about 1%, a bit higher if you have the celiac genes.  

Why isn’t the gluten-free diet working?  Some 60% of celiacs fail to really follow a gluten-free diet.  Google that statistic.  People still eat out, maybe get cross contamination in their own kitchens, kiss their girlfriend who just had a beer, failed to read labels, had gluten in their medication, did not identify other food intolerances that feel like a gluten exposure, but are not,  or consumed oats.  All kinds of reasons for failing.  

Get your medical records.  Best place to start.  

Edited May 8, 2020 by cyclinglady