Sunday, July 24, 2011

This sickness doth infect the very life-blood of our enterprise

I'm sick. This is going to be one of those personal self-disclosing medical blog things, so if you don't like those, you can go look at this instead. Really, I don't mind.

October 2009 (slightly over baseline: 155)
The last few years haven't been good ones for me, medically. I've had three surgeries in two years related to my endometriosis, and for longer than I can remember I've thought there was something wrong with my immune system--something that came and went. But it went often enough that I could sort of ignore it, and so I went with that.

Then, around Christmas-time this year, people started asking me if I was losing weight. I was pleased. I'd put on some weight at the desk job I had before this one (2008-2010), and was at the heavier end of my regular weight spectrum. And I didn't think much more of it. I figured my body was leveling itself off: I had had major surgery in September 2010, and I guessed it could be related to that, somehow.
July 2010 (About average: 145)

Until... (and there's always an until in medical stories, right?) I noticed that some glands were swollen on the right side of my neck all the time. And my weight kept sliding down, more and more quickly. I got thrush. I was exhausted all the time. The doctor kept testing me for scarier and scarier things. I got poked, prodded, CT scanned, X-Rayed, and had enough blood drawn to feed a healthy-sized vampire.  Nothing showed up. Nothing. And I wasn't feeling better. I started to relate to the people on MYSTERY DIAGNOSIS, which is never a good thing.
April 2011 (130 lbs)

I was shrinking out of my clothes, but the doctor seemed pretty sure that it was just stress, and it seemed plausible, because I've certainly had my share of that in the last 12 months.

So we tried a psychotropic med change, which is its own special kind of fun. Ha.  That helped my mood a bit, but not the appetite or the weight.

Then, in June, after sounding out my theories with my massage therapist and a couple of friends, I brought them to my doctor.
1. The estrogen prescribed to me wasn't working somehow, or the weight loss was a side effect.
2. Stress. Possible, although I'd never experienced this particular side effect of stress. Usually I eat a lot when I'm stressed. But I am open to the effect that emotions and mental health can have on the body.
3. Gluten. I can hear the collective eye-rolling. I have done some of that myself, which is why I never suggested it to my doc before. Gluten is the new darling of the health-food nuts. People want to connect it to everything from weight loss to autism. But several people said that they had friends who gained weight on a gluten-free diet, because the gluten was affecting how they absorbed nutrients. So I asked my doc, and she gave me the blood test.

June 2011 (125 lbs)
And guess what? My blood tests were literally off the charts: Celiac disease. Which explains a lot about the weight loss and fatigue (I've been literally starving), the immune problems, the bruising, the swollen glands.

I've been on a gluten-free diet since July 5, and I haven't gained any weight yet, but I'm hoping that it will help.  I still have some procedures to be performed (hello, invasive camera down my throat!). The fatigue was a LOT better for the first week and has come back, and I'm still learning how to eat in a brand new way. This causes me no small amount of anxiety, because my celiac symptoms are atypical--I don't get the GI symptoms that many people experience, so I don't have any way of knowing if I'm accidentally eating gluten and further damaging my insides. This is terrifying.

I'm also in a bit of mourning for the things I can't have, although there are now (expensive) gluten-free alternatives for most foods. But I'll probably not ever be able to leave my house expecting that I can just pick something up on the way someplace. I'll have to bring my own food to family meals (gluten AND dairy free is a lot to ask of someone cooking a big holiday meal). It's not the end of the world, but there's a definite sadness around eating right now.

 I promise that this won't become a celiac blog. There are plenty of those. But I may, from time to time, update my health condition here.  Mostly I don't think about it, except at meal times. I like the challenge of learning new ways to cook and eat, and I feel blessed that this is happening at the height of fresh food season, so I can gorge on fresh fruits and vegetables without completely breaking the bank while getting all the calories I need.

Also, big shout-outs to some gf friends who have guided me through this tough time. You know who you are. If you want to be known, post your links in the comments. :)

1 comment:

Bridge said...

Good luck! I hope you feel better and get healthy soon. I can't imagine it'll be easy, but think of your fortune in you misfortune, in that: 1) you've finally figured out what's wrong so you can get better and 2) the market is ever growing of gluten free things so your options aren't as limited as someone who might have discovered they had this disease decades ago, which is what happened with my friend's dad. All the best!