Spina Bifida and Celiac Disease

This scares me a lot:

Celiac Disease is a genetic disease, meaning that one or both of my parents passed this gene on to me. Untreated, those who suffer from CD, whether symptomatic or not, generally have a decreased absorption of many essential nutrients. One of the top 10 is folic acid.

A deficiency of folic acid in a pregnant women will cause a neural tube defect such as Spina Bifida. A severe form of Spina Bifida is called Meningomyelocele, which is what my mother has.

It seems that I am starting to connect some dots.


Clue number two that I may have Celiacs: I'm developing lactose intolerance. (wonderful... just like I need to cut yet one more thing out of my diet!)

Unfortunately, my Body Mass Index is just 2 points too high to qualify for a documented disability in the US. Kind of unfortunate since I have lost about 6 inches around my waist. I was a size 8 when I left for Germany, a 6 when I came home, and now I am a size 0. I guess if you have IBS for nearly 3 years, that will do it! On the other hand, in Canada if you are simply diagnosed with CD, you are eligible for reimbursement for all gluten-free products you buy, which can add up to several hundred dollars a year.

I have a friend who has CD. She had a hard time finding things to eat, and she didn't even have dysglycemia (hypoglycemia and insulin resistance). This is going to be hell trying to readjust to normal life.

Feeling Better

For the first time I as long as I can remember, I am starting to feel better. The new medications that Dr. Mazza gave me last week have been working wonders. I'm sleeping normally again! And my blood sugar is starting to stabilize! I can read and concentrate again. I almost feel normal...

The biggest thing for me has been using music therapy to help in the healing process. It has been amazing.

Overwhelmed

I'm feeling very overwhelmed. According to Dr. Mazza, its called decompensation. I met with the UCSD psychiatry center today for an entrance interview for a major research study. Despite becoming rather disturbed at the health care disparity in our country, I was relieved to find out that I DO NOT have anything seriously wrong with me and I really DON'T have everything in my head. What is overwhelming is that I have all these diagnoses flying at me from every direction, from multiple doctors, etc. Nothing too surprising; its just all a matter of acceptance. ... and learning to accept that my parents can/will do nothing for me.

I'm in this pile of shit, and that is where I am going to be. Just in case anyone is looking for me.

Good news... my new meds from last week are helping! I get hungry without going loopy. YEAH!

Celiacs Disease

A quick overview of what Celicas Disease actually is:

Like I said before, Caliacs Disease is an autoimmune disease (...your body's immune system attacks itself) triggered by gluten. Gluten is a protein found in Wheat, Barley, and Rye. Gluten wears down the protective defenses of the small intestines as an "allergen" and subsequently the entire immune system, but also destroys the villi. The villi are the small finger-like projections that line the small intestine and absorb all the nutrients that you ingest. Without villi, you don't absorb vitamins and minerals. this leads to malnutrition (and weight loss) and high susceptibility to diseases of vitamin/mineral deficiency, such as osteoporosis (calcium deficiency) for example.

Like most autoimmune diseases, there is no cure. Fortunately, unlike HIV/AIDs (the most well known in this class of diseases!), the disease can be managed and the debilitating immune attacks can be staved off, by diet.