People just love to give advice, as much as we want or don't want it! First, let me say that people, even doctors, are always telling me to do or don't do something that because I have scleroderma or the kidney transplant doesn't work for me. :emoticon-dont-know:
To your topic, Marsha: All of this has come about due to testing for a lung transplant but I have found out my esophagus is not working, that I have reflux, it is dilated, that after fasting for 12 hours it is still half full, that I have a huge hiatal hernia, and the latest is that I have SIBO (small intestine bacteria overgrowth.)
I followed a total elimination diet (no gluten,no dairy, no soy, etc.) from June until September with no relief of symptoms, actually an increase. I was eating very healthy, whole foods but still having up to 20 bowel movements a day. After 21 days when I introduced a food I really didn't notice a difference. I wrote down everything I ate and my symptoms until I got tired of tracking how many times I had been to the bathroom. I've been eating gluten, but not as many salads and fruits as summer has come to an end and strangely I am doing better.
I recently had a Hydrogen Breath Test showing the overgrowth of bacteria in my small intestine. The diet for SIBO is very similar to the elimination diet but eliminates even more things like all the fruits and raw vegetables I was eating from June until Sept. Hmmm. My doctor wants me to take an antibiotic for it but we are on hold right now.
I don't know what the answer is. The gold standard for diagnosing celiac disease is biopsy during endoscopy, which I will be having in the next few weeks. The blood work test is not always accurate. All I know is scleroderma has wreaked havoc with my body.
I'm tired. Tired of all the testing. Tired of all the doctor appointments. Tired of there always being something new that's wrong. Tired of medications. Tired of getting better and getting worse. I'm also happy. Happy I am still here today to write this, happy that I had a kidney transplant and am no longer on dialysis, happy that I can use my hands again, happy that there is oxygen that helps me breathe, happy that I can still do things I love to do, happy for all of you here who support each other so well.
I wish I had the answers. I wish that somebody did. Don't we all?