The anxiety is still a bi^ch. I worry that this part may never get better. Is it damage? Is it from PTSD? I guess time will tell. I’m just focused on my food and trying to keep calm now.
A lot has happened since my last post. First, I did the SCD intro for 5 days and then I went Paleo (thanks Txxxx!) and haven’t looked back. I got in to see my GP and am on a non-narcotic drug for acute anxiety. It’s used for stroke patients. He has been learning about Celiac and Gluten and told me I was doing much better but that my emotional health is hurting my recovery. My brain wasn’t working too well at that point because yes- I was very upset that this GI I was sent to screwed up my diagnosis. He wants to see me in a month.
Went to the new GI Dr. Met the nurse and said “Please tell me you know about gluten here” She says “Oh Yes- we know ALL about that evil stuff.” Her nurse took my vitals- pulled her chair up to me and said “look honey, you need to calm down, you’re safe here. Your BP is off the charts- I am not even going to write that one down, I will take it again after you talk to the Dr.” New Dr was wonderful. She listened to me and asked all of the right questions about my family history. She tells me well your biopsy came back negative for celiac. I said I was 23 days gluten free and gluten light since Feb. You should’ve seen her reaction. (no words needed!) Then I told her the celiac panel was done on me when I was 50 days gluten free. Now they know why I am a mess!!!!
She says we can do 2 things…the first one you’re not going to like. Tells me I can do a gluten challenge. NO WAY can I do that with my neuro problems I tell her. She says THEN WE CAN DO A GENE TEST….I almost burst into tears- because I had been begging the other Dr to do the Gene test and here this knowledgable Dr offers it to me!! 🙂
Her nurse comes back in takes my BP again- much better, and sits with me and says “I have been nursing for 30 years and your BP was one of the highest I have ever seen, you’ve been through a lot but you have to try to stay calm or you’re gonna have a stroke”. Okay, I feel better now that I have someone competent on my side finally! Oh and my new GI was waiting on the biopsy results back from old GI Dr and I told her good, I’m glad she is going to look at them because I’m not convinced that other Dr has any idea what she is doing considering the way she messed up my testing!
Since then- the anxiety and shakes come and go. Definitely not under control completely but the edge has been taken off. I still have the shakes and anxiety attacks. Scary stuff.
I went back to my GP again and he gave me a pep talk and was very understanding. I flat out told him the other GI was WRONG and she did not test me correctly and THAT was part of my emotional problem- I told him I am possibly looking at 3 generations of misdiagnosis’ and that I am finding it very hard to trust Doctors right now. I told him I am scared! He was great. He thanked me for telling him of the other Dr’s mistakes and he told me that it helps him in his practice to get feedback- even negative. He also understands now that the anxiety is part of Celiac and that I’m not crazy. phew.
Waiting to go back to my new GI for the gene test results in 12 more days!! xxoo