@theresap, I am so sorry to hear this. I was diagnosed about 1 1/2 years ago at Mayo Jacksonville and recently just met with Dr. Murray in Rochester. I have not yet had success with budesonide and several other medications but Dr. Murray is trying me on a different way to take the compounded budesonide. I have been on a ppi for heartburn for about 2 years. Per Dr. Murray I am now weaning off of protonix. It has been a difficult transition but I am determined to see if this will help me. Like you, my symptoms are not impacted by what I eat. I feel badly after I eat almost anything. I have never felt bloated; I get terrible stomach aches, sometimes cramping. I also get an overall "sick" feeling and weakness. I tried a gluten free diet but it did not help. I am curious why you were gluten and lactose free for so long? Did it take you a long time to get diagnosed with CG? I have been frustrated that nothing really helps the pressure that I feel all along my digestive tract. I am now trying to drink aloe water and eat ginger. Have you tried this?

Sorry to hear @theresap about your diagnosis. That is good you can attend Mayo Rochester as it appears Dr Joseph Murray Is seeing more CG sufferers than anywhere else.
I cannot attend Mayo due to location but I am interested to know what all the tests are that a few of his patients have mentioned on this site.
I expect Endoscopy and some blood work checking iron stores and basic blood work. I have endoscopy on annual basis and iron stores checked every four months plus have had one colonoscopy. The colonoscopy showed no changes in colon. Confirmed problem only in stomach. However, would like to know if there are other particular tests I should ask my Dr to do.
Are any of you included in the microbiome study with Dr Murray Kanaaz mentioned?
pvb can I ask how you were taking Budesonide and the different way now taking?
kellye5 that is relief for you your son will be seen by Dr Murray.
Thankyou

I have taken budesonide in several different forms. I originally took it 3x daily, each a different way. Capsules were opened, placed in syrup and taken. Then the 3rd dose was taken as whole capsule at bedtime. The syrup was at one point changed to applesauce and one capsule opened and the second capsule was opened and crushed and both taken with applesauce. I am now taking compounded budesonide, made only by Mayo twice a day. Once at breakfast taken as whole capsule and second at bedtime whole capsule. Hope this helps.

Welcome to Connect, @theresap. Thank you so much for joining and sharing your information. While incredible progress has been made in medicine, there are still some conditions where cure remains elusive. But sharing stories and experiences helps us cope with our struggles, helps us learn from each other, and to know that we are not alone – this is what Connect is all about.
Please let us know if you have any questions or if you would like to share your insights; we look forward to getting to know you.

Thank you @pvb for explaining. I am taking capsule form.