Samantha Jones

Sorry , I just reread you reply again. The “Fasano” diet. That’s the doctor that my specialist consulted about my biopsy clonality to see if I have refractory celiac disease. I do have anemia. My labs just came back. I’ve had my DNA checked and I do have MTHFR so I’m working on also fixing my b-12 as it was low too. how do I get someone to test m...

Hello, so I saw another specialist which was a referral from the specialist that told me I have refractory celiac disease. The new specialist conferred with a “top doctor in the Celaic community “ and they both concluded that I do not have refractory Celaic disease based on the cell clonality of my biopsies. I don’t know what to believe anymore. I fe...

Hello, i recently had an enteroscopy and I was told that my villi are no longer atrophied however I do still have refractory celiac disease. I don’t understand what this means. I continue to not eat out, cook everything from home, eat 85% organic. I was told that I could try budesminde for 6 months to remove the inflammation. But I don’t have an app...

I don’t think so. They know each other because they both work for Hopkins. But it’s done. The stress from all this mess and trying to heal. I just don’t believe he would do this. It’s because of the lab values he missed and I had to keep asking to see him. He acted very weird on a conference call saying “is anyone in the room with you ?” So weird.

Yes- it says t in the letter. That I questioned his wording. I didn’t understand some of the words l- so I asked. What is most distressing is the enteroscopy is a very important test and for him to have another GI doctor at Hopkins cancel the test is wrong. I could Have taken those results and moved on. But now it will take months to start over etc. and t...

Hi- I’ve seen my celiac doctor since 2017. We had a wonderful relationship. In May 2019- my iron dropped by 50% and my ferritin tripled - inflammation. My celiac antibodies are still trending down. I couldn’t get the doctor to see me. Finally he did. When he did he started ordering a lot of tests. Turned out I had a GI bleed. Anyway - we also did a capsule stu...