Frustrated

[Jmartes71]

Im not being heard by my previous doctor I had for 25 years. I switched in May of this year.I was half told of my celiac disease in 1994 and to stay away from wheat and Ill be just fine.Im not.Was on tramadel from I think 2006 til 2023.In 2007 still gluten-free had blood test and showed other food allergies. I have been avoiding and reading labels so I don't get sick.Im 54 years old, my right eye feels as if pressure ( seeing eye specialist) saw dermatologist and had skin graph was told ulcers but since I was disregarded of my celiac disease and it was previous doctor who sent me to dermatologist, its now " undetermined ".I pushed for the first and second ANA panel and negative. I had my 5th colonoscopy July 9 this year and colon looks great, BECAUSE IM gluten-free for 31 YEARS.Waiting on biopsy.My only celiac proof on medical was 2014 that i physically have, i don't have original. How do I get my new doctor to understand the severity of pain Im dealing with, daily flare ups.Exhausted and allergic to everything. Menopause has intensified, i feel but then again I had my 3rd covid in March 2023 and I can't bounce back.Pain down left leg always in the bathroom when I barely eat.Its affecting my life and frustrated with doctors not knowing.To be far my new doctor is having me see two specialist but how do I get him to understand its my false negative celiac disease????

[Scott Adams]

 It sounds like you’ve been doing everything right—strictly avoiding gluten, managing food allergies, and advocating for yourself—yet you’re still dealing with severe pain, exhaustion, and other debilitating symptoms. The fact that your colonoscopy came back clear after 31 years gluten-free is a testament to your diligence, but it doesn’t erase the very real struggles you’re facing daily. It’s concerning that previous doctors dismissed your celiac diagnosis, and now you’re left fighting for validation while dealing with unexplained symptoms like eye pressure, skin issues, and relentless pain. Menopause and long COVID may be complicating things further, making it even harder to pinpoint the root cause.

Are you sure your diet is 100% gluten-free? Do you eat in restaurants...if so, this can be a source of contamination. Trace amounts of gluten over time could explain your symptoms.

Many people with celiac disease have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful: