Thursday, April 11, 2013

Curing Celiac Disease

A few years ago, I was in my I-am-going-to-read-every-medical-article-on-celiac-disease phase. So many articles and definitions of celiac disease are wrong or incomplete. I was really frustrated. After getting through a few studies, I realized that there is so so so much that "we" don't know about celiac disease. It was really refreshing. It made me a lot less angry at lot of people. There just isn't a ton of research on celiac disease (or wasn't 5 years ago, that is changing a bit now) and the gut is very complicated. Did you know the digestive system has its own nervous system?! Fascinating right?!

A very good friend, who is a scientist, fielded a lot of my questions. One night, in his kitchen, I was asking with all seriousness: well why can't people with autoimmune diseases just get bone marrow transplants?

This came about after a really lengthy discussion about T-cells, they are the pesky cells that make the antibodies that cause the problem for persons with celiac disease. (There are a lot of T-cells that do great things, like creating antibodies to fight infections, but the T-cells that create antibodies that "attack" gluten, cause significant damage to villi in the small intestines, plus a whole lot of other problems - over 300 symptoms have been acknowledged.)

T-cells are created in the bone marrow, and while they create the antibodies that cause damage in the small intestines, they travel throughout the body. So say you got rid of all the T-cells in your digestive tract, if there is still one in your blood stream, you still have the capability of making more T-cells, and more gluten-attacking antibodies, and continue the cycle of active celiac disease.

So this knowledge was probably the most liberating thing for me. It made me feel stronger. For me, understanding celiac disease, made me truly feel like I wasn't going nuts. It made me feel like I had a clue as to what is going on in my body. (I am going to acknowledge that this is only one way of knowing or understanding things, but it is the kind that helped me a lot.) I cannot tell you how grateful I am to have such awesome friends!

Back to the bone marrow...
After this pretty detailed explanation about how T-cells are made, how they chemically "communicate" and how they synthesize antibodies - I sort of blurted out "can I just get a bone marrow transplant?!"

I realize how ridiculous this might sound. Bone marrow transplants are very risky and only work if you basically kill all of the "bad" cells before you add in new bone marrow. That is why it is not done unless absolutely necessary as a treatment for certain cancers or blood disorders. You literally have to compromise your entire immune system, making you susceptible to a lot of things a lot worse than celiac disease - diseases and disorders that can be fatal.

My friend was very kind and let me go down this path of hypothetical bone marrow transplants and talked about how it may or may not work. It was really exciting. Not because I actually wanted the procedure, but because for the first time since being diagnosed in 2007 I felt like I had a true understanding of what was going on, and of the research that had been done so far. Super cool right?! And knowledge is a decent start towards finding a less risky option for treatment and a cure.

I bring this up because there is actual success story! Bone Marrow Transplants Appear to Cure Celiac in Two Patients. Again, these patients had a need, aside from celiac disease, for the transplant. The ability to consume gluten post-transplant, was a bonus. Hopefully this will inform more research. This is so exciting!

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