Celiac Update – Osteoporosis

Posted: July 23rd, 2012 | Author: | Filed under: Celiac | Tags: , , , , , , | Comments Off on Celiac Update – Osteoporosis

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.


And If I Don’t Heal?

Posted: June 17th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , , , , , , , | 1 Comment »

I prefer the best and most accurate information I can obtain. At all levels and circles of my life I try to interact with reality as it is rather than as I desire it to be. That does not mean that my understanding of reality does not adapt or evolve. It is constantly doing both — anything less would simply be another form of hiding from reality. I think I understand some of the reasons I am shaped that way. Some of it probably has something to do with developing some sense of control in situations where I often had very little.

But sometimes reality can be a little disheartening.

I’ve read this article, When Celiac Disease is Diagnosed in Adulthood, Intestines Don’t Always Heal Completely, several times now. The article reports on two studies presented by two different research teams at a recent medical conference.

The Irish study is not too bad — though I do have a lot of Irish in me, so that catches my attention. In it, at least two-thirds of those who did not have intestinal healing at the two to three year mark also had poor compliance with the gluten free diet. They did not stick to the fast. That stresses the importance of strict adherence to a gluten free diet over the long haul, but I had already absorbed that. Believe me, I am taking this seriously.

The Mayo Clinic study, though, does not share that problem. Most of their participants had good adherence to a gluten free diet. But their percentages were not markedly different.

In one presentation, Dr. Alberto Rubio-Tapia and colleagues from the Mayo Clinic in Rochester, Minnesota described their study of patients whose celiac disease had been diagnosed (and confirmed with a biopsy) during adulthood and who later had additional biopsies to determine whether or not their intestines had healed.
— Of 141 adults who had been gluten-free for less than 2 years, only 79 (56%) had healed intestines.
— Of 65 adults who’d been gluten free for 2 to 5 years, only 37 (57%) had healed intestines.
— Of 27 adults whose intestines were examined more than 5 years after they became gluten-free, only 14 (52%) had intestinal healing.

It seems that my odds are about even that my small intestine will heal completely. I can do everything I’m supposed to do and it still comes down to a flip of a cosmic coin. I do not appreciate the irony.

It seems that two of the factors that appear to influence recovery are age when diagnosed and the extent of villi damage. Neither of those are in my favor. I’m a middle-aged guy in my forties and my villi were basically gone when I was diagnosed. Visually, instead of white shag carpet, my small intestine looked like pink tile. Under the microscope, my doctor said it looked like my villi had been mown down by a lawnmower on its lowest setting.

On one level it doesn’t really change anything. I have to continue to develop the rythms and patterns of a life free from gluten. I will continue to work to shape my life with the rythms of prayer, not because I believe it is some form of magic or that I can somehow manipulate God, but simply because I know I need help to maintain this fast. It goes back to that integration between body and spirit I’ve discussed elsewhere.

I’ve already seen some of the acute symptoms, including ones I had no idea might be related, subside. And as I maintain the fast from gluten, I will heal at least some. And some healing has to be better, even if I remain at greater risk for complications associated with celiac. And who knows? My particular coin might still be heads. I might heal completely. If these studies had not been done, I wouldn’t even know that it’s something we need to monitor.

Still, I would be lying if I said the study didn’t bother me. I had more of a sense of control before I read it. And at least when it comes to my closest circle, the circle of my mind and my body, I strongly dislike loss of control. I suppose I find it threatening.

Oddly, I’m already doing as well as I know how on the gluten free diet. I will try to make it even healthier to the best of my ability. And I will continue to learn more. But there is little more I can do in that arena.

I can, however, do much better at developing and maintaining the rythms of my practice of prayer. Perhaps a place to start?