Tuesday, June 17, 2014

Celiac Disease Research: Long Island, New York

June 17, 2014
My whole Celiac life has been full of research groups. I have been so blessed to know that I had Celiac disease before the symptoms started showing up. I have not spent a dime on being tested or anything else related to Celiac Disease because we got in with a research group from the get go which I'm truly blessed for!!
Whenever I find a celiac research study that I can participate in I feel like it is the least that I can do.
Since we moved out to New York I found a research group that I wanted to participate in. So I emailed them, they called me, and I went in for an exam and to meet with the doctor who is over the research group.
Part of this certain research group consisted of a "food diary" so they call it. I would say it was more of a symptom diary. I call in every night  between the time of after dinner and before I go to bed. The call lasts about 5 minutes asking questions about my bowel movements, if I have nausea,  have abdominal pain, bloating, or experience tiredness in the last 24 hours. I have done this everyday for the last month.
Everything that I answered to these questions, daily, has qualified me to the next step of the process which is a biopsy and endoscopy of the small intestine.
I have always wanted to get a biopsy done to see how well my intestines have healed up. Although I have had a hard time justifying doing it because it is not cheap. So once I found out with the research group that this is one of the steps, I was more than willing to help them out.
Today I went in for the biopsy. I was terrified because for some reason I have been afraid of being put under. This was the first time ever. They were so nice!! Once I got there I put on my gown, they rolled me into another room, gave me an iv, put in the oxygen tubes into my nose, made me lay on my shoulder, and gave me this round object with a hole in the middle of it  to bite on to protect my teeth.  And the next thing I knew I was back in the other room where I started.
I think they told me somethings but I hope they are not too important Kuz I don't remember them. If they are important I hope Dusty remembers. Haha
I came home to sleep it off and one side effect I have from it is a sore throat. But it should go away soon enough! Although they did pump me full of air... It has to come out some way right? :)
I'll get my results back in about a week to see if I qualify for the next step. Which will be that the doctor will give me enzymes to take with my meal(s) (I am not sure if I will take them with multiple meals or for just one meal.) for a certain amount of time and then I'll go back in for another biopsy and endoscopy to see if it has helps my small intestine heal up any better/faster!!

I am grateful for this opportunity to help further Celiac Disease Research and to be part of it. I am very hopeful that it will work out the way that they want it to. So we will be able to have more healthy people in this world!! 

June 25, 2014

So today I got the call from the doctor about my biopsy results. The great news in that the gluten free diet is working great for me!! Not so great news for them is there is not enough damage to the villi that they are looking for and so I will not be moving forward in this study. I'll meet with the doctor late July for him to explain what my results mean exactly.  
I am truly grateful that I was able to get this far in the study! And will be keeping an eye out for the next one I can participate in.