After I was diagnosed with highly advanced stage celiac in April 2009, my gastroenterologist ordered a bone density scan. The results showed full blown osteoporosis (I believe around -2.4) in my spine. I was shocked. No middle-aged man ever thinks about osteoporosis. My doctor referred me to an endocrinologist. She decided to treat me with a regimen of maximum calcium supplements (600mg three times daily) and see if that in combination with strict adherence to a gluten free diet would suffice. She noted that none of the medicines for osteoporosis are tested on middle-aged men and there’s no clinical data of any significance. She didn’t want to make me a guinea pig and I wasn’t inclined to be one.
The following year, my bone density scan had improved to the osteopenia range (-1.9 or -1.8, I believe) so my instructions were to continue my treatment plan. Last year, there was no significant change, but since it didn’t get any worse, my doctor wanted to continue the regimen.
This year my numbers improved to -1.1 (anything under -1.0 is considered normal). It’s still osteopenia, but barely. My doctor wants to wait two years for my next bone density scan since at this point there’s unlikely to be significant change in a year. But it looks like I beat osteoporosis! That’s good news in my book.
It’s now been roughly two months since my diagnosis of celiac and thus two months attempting to eat and live free of gluten. It’s definitely continued to be a learning experience. I’m still not certain how well I’ve done in my efforts. But I think I’ve done pretty well. We’re still learning how to avoid cross-contamination, the art of reading labels, and techniques for dealing with restaurants (though I have not gone out to eat very much since my diagnosis). I’ve certainly not intentionally ingested any gluten. And I am getting more proficient at this life each day.
It seems most of the short-term benefits were the ones I experienced in the first month. There have been no dramatic or even noticeable additional improvements this past month. I suppose I’ve now settled into the long haul of healing and recovery where progress is measured in months rather than days or weeks. I can live with that.
I met with the dietitian and in addition to outlining the types of food I need to be certain to eat, the frequency with which I need to eat something as my intestines recover, and similar advice, she has me taking a lot of vitamin supplements (and refrigerated probiotics capsules) to try to compensate for my damaged small intestine over this interim period. That too is beginning to settle into a routine, though I’ll be glad when I don’t have to take so many pills every day.
I’m not yet finished with my rounds of new specialists, though. While the results from my bone density scan weren’t horrible, they did show some osteoporosis in my lumbar spine (lower back). So the gastroenterologist is referring me to another specialist. (I believe she’s an endocrinologist.) I think (or at least hope) that we’re done discovering the various things that are wrong with me as a result of celiac disease and can move on toward the part where I start getting better.
As a middle-aged male, osteoporosis was not even on my radar. However, it’s one of the significant risks for an adult celiac of any age or gender, especially if the disease has been active long enough to significantly damage the small intestine and cause nutritional deficiencies. I’ve had a bone density scan, though I don’t have the results yet. And I’m gathering additional information. I’m a sponge. When I want to learn about something, I tend to learn a lot and learn quickly. In this video, Dr. Vikki Petersen answers a question from a 34 year old woman with osteoporosis that is not getting better on a gluten free diet. That’s a concern, of course, after any diagnosis like this. What if you do everything “right” (or as well as you can) and your body still never fully recovers?