Everyday Eating with Celiac Disease

Living with Celiac Disease

Finding Some Answers at Mayo Clinic August 19, 2014

Filed under: Everyday Living with Celiac Disease — Michelle @ 10:33 pm
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For the last year, I’ve been struggling with fatigue, nausea, and a lot of GI issues. I was diagnosed with Lupus in April and then collagenous colitis in July. However, most of my GI issues have remained problematic.  I’ve lost 15 pounds in 2 months, mainly because I can’t eat without getting sick or have abdominal pains. So, I barely eat and when I do eat, it has to be small amounts. Sometimes, I don’t feel hungry. So, I decided (with my local doctors) that I will go to Mayo Clinic for some specialized, coordinated care. I’m in Rochester, MN now and I’ll be here for the remaining of the week. So, here is my synopsis for Day 1.

It was a busy day. The sight of Mayo Clinic just screams amazing, dare I say moderately intimidating. Everyone here is nice and very helpful. My appointments started this afternoon. I met with a Research Study Coordinator first. Because of the Celiac Disease, my blood samples will be entered into a Celiac Registry. That way, it can be used for clinical studies whenever it’s needed. I’m also potentially eligible for a current clinical trial for treatment of Refractory Celiac. We still don’t know if I have Refractory Celiac, but I’m sure I’ll find out later this week. Refractory Celiac is when the small intestines no longer respond to a gluten-free diet. Let’s REALLY hope I don’t have Refractory Celiac. The prognosis is VERY poor.


I also met my care coordinator. She’s pretty much in charge of scheduling all of my appointments and coordinating with each doctor on my care/treatment team. Each doctor reviews all of medical information and they work together as a team solving “my puzzle.” It’s rather impressive.


I was seen by an Internal Medicine Resident, who basically reviewed all of my medical information. We’re still waiting for my local hospital to send the biopsy slides, so he’s pretty much relying on the pathology notes. Then, I met with Gastroenterologist, who is my lead doctor. She did my initial gastroenterology consult. During this time, both doctors were reviewing my medical records from my local hospital, all of my images, and the patho reports. They were also consulting with another gastroenterologist who was supposed to be on vacation. (I won’t use names) In the Celiac world, he is THE Celiac expert. He is actually the Principal Investigator for the Refractory Celiac clinical trial. I can’t emphasize enough about the level of coordinated care!


My lead doctor  was very thorough. She added a couple new tests for my visit. With the lupus and knowing that it has already affected one of my cranial nerves (the optic neuritis), she’s exploring gastroparesis, which would affect another cranial nerve (vagal nerve). Gastroparesis is pretty much “paralyzed stomach”. The smooth muscle around the stomach and small intestines isn’t functioning. This would explain my symptoms well. There is no cure for it, just the control of symptoms. It would either mean 1) a restricted diet (on top of my already restrictive gluten-free diet), or 2) a feeding tube. Both options would not be fun. I have my gastric emptying test tomorrow. We will know for sure after that’s done.


I ended the day with a Bone Density Scan. That was pretty easy. After today, I feel really good about this process and how Mayo handles cases.


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