My doctor won’t test me for celiac even though I have many symptoms

[GBear]

Hello! Today I was met with stress because of dealing with a doctor who seemed like he knew nothing about celiac or similar diseases. 
 

a couple months ago, I started to lose a lot of weight. About 30lbs and then after I lost the weight, I began to get extreme stomach pains and bloating whenever I consumed gluten. I now get extreme nausea to the point of almost throwing up, migraines, acne (could be unrelated), bloating, sickness like stuffy nose and bloated face, the list goes on. I contacted my doctor when I realized this was an issue and began to change my diet immediately so I could attend classes and function as consuming gluten would prevent me from being healthy. 
 

my doctor signed me up for many exams including a blood attg test. He told me to continue being on a gluten free diet and not to consume gluten if it hurt. What he didn’t tell me is that not consuming gluten for about two months prior to the test would result in my test being negative. Because he told me to go gluten free before the blood test, I was unable to find any antibodies. 
 

after discussing things with him today, he told me that I “probably have something like celiac” so I shouldn’t eat gluten but since my tests came back negative (because I didn’t eat gluten, so my antibodies didn’t show up), he didn’t want to give me the biopsy to confirm the disease. Further, I asked for vitamin supplements or other things to help with coping with my new lifestyle and all he said was to not eat gluten since it was helping me already. 
 

Has anyone else had this issue? I feel like my doctor won’t even help me. I have no clue what to do and I really want a diagnosis of something. I do not know if I have gluten intolerance, sensitivity, celiac or something else because he refused to guide me in what to do or even have a referral to a biopsy so I can get an official diagnosis. 
 

[trents]

Gbear, welcome to the forum!

Your experience is the same as innumerable other participants on this forum. Many doctors are very ignorant with regard to gluten related disorders and just don't know enough to tell their patients to continue eating regular amounts of gluten until testing is complete.

You did not say whether beginning the gluten free diet had any effect on your symptoms. If there was definite improvement then it is likely you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity). The symptoms your describe would be common to both. The difference is that unlike celiac disease, NCGS does not cause inflammation that damages to the villi that line the small bowel. The only way to tell between the two is to rule out celiac disease either through antibody testing of the blood and/or an endoscopy with biopsy of the small bowel lining. Since there is no inflammation and damage to the small bowel, those two diagnostic procedures will be negative. But since you were already eating gluten free your antibody test was invalid.

Personally, I would get another doctor and push for retesting after going back on gluten. The Mayo Clinic recommends eating two slices of wheat bread or the equivalent for 6-8 weeks before having the antibody test and for at least two weeks before the endoscopy/biopsy.

Another option is to purchase a home test antibody kit from Imaware for around $100: https://www.imaware.health/at-home-blood-test/celiac-disease-screening

Hope this helps.

[Scott Adams]

I agree with everything @trents mentions, and if your symptoms went away on a 100% gluten-free diet do you really need a piece of paper saying you have celiac disease? Just stay gluten-free if the diet offers you relief.