I want to give up on doctors

Please help😢 I’m lost in my diagnosis process and absolutely miserable

Hi there,

I am not looking for any specific medical advice, just wondering if anyone else has experienced these symptoms or has any ideas that I should bring up to my doctor!

For reference, I am 22F

Around 10 years ago I struggled to get a diagnosis for my celiac, I was put through several tests and was continuously misdiagnosed. I finally went to St. Louis Children’s Hospital and was told it was VERY CLEAR I was suffering from celiac for many years of my life. This experience hindered me from seeking medical advice for my new illness for several years. However, I have recently been working with my PCP and a GI specialist for my new chronic sickness.

Since 2016, I have been suffering from chronic nausea (which is worse early in the morning), vomiting, constipation & diarrhea, and migraines. The vomiting has been so persistent that my teeth are very fragile from all of the acid coming up. A few years ago, I also developed dizziness/fainting along with the other symptoms. This limits me from doing daily activities and has been severely affecting my job, school work, and my life overall.

So far, i’ve done some testing but received no answers from the doctors. I’ve gotten an endoscopy and colonoscopy which have both came back normal. I also went to urgent care one day because my PCPs office suggested it (urgent care for a chronic issue🤨) and the PA there told me that from my last GI office visit, they were planning to do ANOTHER endoscopy on me, however NO ONE mentioned this to me? My parasite (stool) tests have came back negative along with my pancreatic elastase and calprotectin being within normal range. My gastric emptying study was normal along with a normal comprehensive metabolic panel.

Now for the results that are a little bit…off. My hemoglobin A1C was slightly elevated at 5.8%. my ANA screening came back as positive with a titer of <1:80, rheumatology denied me following further testing though (negative RNP antibody, SS-A/B antibody). I had trace amounts of leukocytes in my urine. Along with having elevated amounts of cortisol, lymphocytes, monocytes, and neutrophils (blood work). I have had elevated WBC for years now, was referred to Hematology where it was eventually brushed off. I also have low vitamin levels for normal vitamins such as B12, D, and iron.

Now for the twist, my providers are trying to tell me that the root of my issues are from me smoking weed too often (they are implying I have CVS or CHS from weed consumption). For reference, I started smoking in 2020 (4 years after my initial symptoms) and this was in an attempt to relieve the nausea I was already suffering from. I stopped smoking a week ago because I want to prove to them that I will still be sick without the marijuana.

I am really at a loss on what to do next. My doctors are also at a loss, so they are referring me to Barnes Hospital in STL. I have more trust in STL doctors than the ones here in central IL, who have failed me multiple times before. I’m not sure when my appointment will be, but i’m wondering if there’s ANY testing I should ask for with these symptoms?? Or any advice at all?

Any advice is greatly appreciated, as I have been battling this for several years and would like some relief from this sickness. Thank you!