Hello @kaliwebster, welcome to Connect. We are also glad you found this discussion. You mentioned that you were one of the first cases, if you feel comfortable, would you mind sharing with the group a bit more about that? It sounds very interesting!

Hello @JustinMcClanahan! Yes of course. I wish I knew more about it myself, but before I was diagnosed, I had severe stomach pain whenever I ate anything. Each day would get a little worse, until it reached the point that I couldn't stand after I ate something. I had numerous tests done for any allergies, Celiac, or Crohn's disease. Every test came back negative, so I went on with the pain. Until one day I came home from school with severe stomach pain (a combination of nausea and stabbing). I went to bed early and soon woke up when the sensation that I needed to throw up. I went to the bathroom, and that's all that I remember. My parents ran and found my in a pool of my own blood. They said that I threw up over a liter of blood, when unconscious and had a seizure in their arms. After being rushed to the hospital and spending some time in a children's hospital, many more tests were done. There happened to be a staff member (this was in Vermont) whom wrote a paper on Collagenous gastritis and tested me for it, and here I am! That's kind of the shortened version, but ever since I've had a very sensitive stomach and autoimmune conditions popping up right and left. I'm currently a senior pre-med student, so the genetics involved really interests me. Do you know of any clinical trials/test being done on this disease?

Thank you for sharing @kaliwebster! Are you trying anything diet wise or taking medications that is helping? I suggested to my daughter's doctor that I think it's autoimmune related, but they were quick to say they didn't think so. Has anyone tried or heard of the Wahl's Protocol? We're thinking about trying it.

Hello @buckeyeliz, I have idiopathic small fiber peripheral neuropathy and in my search for things that would help, the Wahls Protocol diet was one of the first things I looked into after reading Dr Terry Wahls story (http://terrywahls.com/about/about-terry-wahls/).

I followed her basic diet pretty strict for a couple of months and felt a lot better although it did not help my neuropathy. I still try to follow her basic diet, buy organic when possible and I started having a green smoothie for breakfast 4 to 5 times a week using some recipes in her book. The first couple of months of staying on the diet was definitely a change for me. It helped me lose some of the extra weight I had picked up due to being on prednisone and now helps me better control the weight. IMHO healthy eating plays a very large part in healthy body.

I really wouldn't call it a diet. I tend to look at it more as a life style change. I definitely feel it would be worth while to give it a try.

John

Thank you @johnbishop. Hoping it will help all of us. I agree, seems like a lifestyle choice and change. Appreciate you taking time to respond.

Hello @buckeyeliz! I used to take prescription antacids everyday, but have recently just taken them when I have pain. I've definitely changed my diet though. I don't eat anything fried, or heavily fattened. I've found that, in general, foods that are hard to digest cause the most problems. I've actually never consciously cut foods out (as I'm a huge foody), but looking at my diet now compared to 7 years ago, a lot has changed subconsciously just to avoid pain. I've heard that a lot of people try a gluten-free diet though!