Tuesday, March 5, 2013

Celiac Research

I’ve recently started following information from a University’s Celiac Center, and I am so grateful for the research they are doing and the information they are putting out there.  However, something I read before popped up in this Center’s information the other day, and I find it bothers me, a lot.  It’s the fact that time and money are being used to research a “cure” for Celiac. The thing is, there is a cure: don’t eat gluten. Of course, tons more effort goes into healing the damage that has already been done, but it’s still a cure. The idea that jumping into bed with a major pharmaceutical company so Celiacs can eat gluten, which has been found to be damaging for pretty much everyone in the world anyway, and then risk the long term effects of whatever the meds cause does not sound like a solution to me.  It doesn’t sound like progress.  Add to this that Celiac can be responsible for many other conditions requiring medication such as diabetes, cancer, thyroid disease, etc. If embracing a gluten-free diet heals the gut where 80% of the immune system is found, it stands to reason Celiac patients could possibly be taken off of medication for diseases caused by eating gluten, as well as avoid future health problems. Dealing with Celiac just the way it is dealt with now could help people STOP taking drugs for other diseases, and possibly not need to be put on more drugs in the future.  Why is this solution not good enough?  It's like Wren's pediatric GI said the day I thought I was going to get arrested for punching her: "Your kid got the best GI disease possible.  Good for her!  The cure is way simpler than most!  High five, Mom!"  I can appreciate that now. 

I’m no doctor, but I would like to humbly present my top three choices for where we should be putting funds and time for Celiac research:

1. Refractory Celiac: Read about it here. Basically, refractory Celiac does not go away on a gluten-free diet, and those with it can and do die from malabsorption, cancer (a specific type I cannot recall right now), and other complications of not being able to absorb food. There are treatments, but no cure. This stuff is scary. We thought Wren had refractory when she was still struggling on a gluten-free diet, but we found out she just had E.coli. It was a weird day when I was calling D at work and saying, “Thank God, D! She has E.coli! Woo hoo! Best day EVER!!!!” I don’t recommend you get E.coli, but it was a relief over refractory Celiac if that tells you anything.

2. Better diagnosis tools for Celiac: I have blogged about this here. Currently, an estimated 97% of people who have Celiac do not know it. The sad part is, some of those people may have been tested and given a negative result, so they aren’t doing anything about it. We need a better way to diagnosis this disease, and we need to educate doctors, especially those who specialize in one particular area of medicine, to see the red flags and look at the whole picture of a person’s body to see if they should be tested.

3. Ways to have naturopath and nutritionist care covered for Celiacs: Not sure how a Celiac Research Center can pull this off, but it would be awesome. True healing for Wren did not come without supplements, Asyra testing, and time spent with someone who knows how the whole body works and functions as a unit. And insurance covered zilch. And we couldn’t claim the supplements. But, have no doubt, I’m sure a pharmaceutical drug with questionable side effects would have been covered, no questions asked. And yes, bitter would be an accurate word to describe my feelings about this.

Maybe I am missing a big part of why this research is being done, but I can say as someone who lives in a house where we all have or are suspected to have Celiac, and where we all live with very strict gluten-free guidelines, the payoff is worth it. I don’t want my family dependent on prescription drugs. We’ll just stay away from gluten.

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