(cross posted on my livejournal)
So. My mother has celiac sprue disease which is actually an allergy to gluten that, unchecked, has damaged her intestines to the point that she nearly died from malnourishment. Read, she had to have two blood transfusions and weighed around 70 pounds. She now has such weakened bones that she has to give herself injections daily and take a battery of vitamins on top of it, plus following a restrictive gluten-free diet. Aside from that, she’s basically OK now.
To avoid this, I am getting tested for gluten intolerance since I am the only first degree relative. (Well, actually my mom has a sister and both parents are living but all of them have enough health problems that honestly it doesn’t make much difference to them in the long run) I am phobic of doctors and needles and such so my parents decided to get me this kit off the internet that will allow a company in Texas to determine if I have the genetic marker or not. Of course, the problem being that the results can come back three ways:
1. No genetic marker, no disease
2. Genetic marker, no disease
3. Genetic marker, disease.
At least that’s how I understand it. The problem (and what is most likely going to occur, although I could get lucky genetically since I have a 50-50 shot) is if I have the genetic marker but no developed disease. Since I am not very old, the likelihood of me having the disease is low since it would have to be even more virulent than my mother’s type to create enough damage for me to register with the disease. But genetic predisposition and no disease means that I can:
Go on full-fledged no-gluten diet for the rest of my life with the chance that I will never develop the disease because I’ve taken preventative action. No harm done, no disease, but I would have if I hadn’t followed the diet. Or I could do the diet for the rest of my life and would never have developed the disease even if I HAD eaten gluten. Which is a HUGE sacrifice. Go to a restaurant dinner with my mom and when you realize that only two items on the menu are gluten-free and you’ll sort of, kind of, begin to get the picture. But there is no cheating, “cutting down” means you shouldn’t bother in the first place. It has to be cold turkey, right away and forever. Maybe it would make a difference, maybe not. It’s a BIG lifestyle gamble but I also saw what my mom had to go through.
So, that’s the scary depressing part.
Slight upside is the hilariousness of the testing equipment.
My mother thought that the stool sample would be like getting your dogs tested for worms. There’s the stool, poke a little straw-like device through to collect the “material” and done. Um. No. It’s like margarine container sized. Deposit, freeze, and then mail overnight. FREEZE? Um. Most people don’t have separate freezers, with one for food and one for biological waste. We only have one. Ours holds food. FOOD. STOOL SAMPLE. Oh, dear lord. Then they helpfully include a little piece of paper explaining how to do this that helpfully suggests “taping around the container.” Um. No shit!
Ahaha.
But what’s really hilarious is that if you don’t want to go the blood test then colonoscopy route for testing, the only other option other than what I am doing is something called “the rectal CHALLENGE.”
The Rectal Challenge.
Now you ALL know me way, way, WAY too well but cross your fingers that my “challenge” winds up without the genetic marker.
