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?


Two Months Gluten Free

Posted: June 10th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , , | Comments Off on Two Months Gluten Free

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.


One Month Gluten Free

Posted: May 11th, 2009 | Author: | Filed under: Celiac | Tags: , , , , , , , , , , | Comments Off on One Month Gluten Free

It’s been more or less one month since my EGD and since I began working to be gluten free. With the help of my wonderful wife, I think I’ve been mostly successful at it. It’s been quite the crash course learning curve. I thought I would pause for a moment to compare the state of my physical health, or at least the things I’ve noticed so far.

Like many of those with celiac, I did not have major digestive symptoms or any intestinal pain. My intestines and nutrient deficiencies will take more than a month to heal, so nothing major on that front. I do think now that some of the things with my digestion that I had considered normal may have been related. I’m certainly adapting to a radically changed diet! Time will tell the rest here.

The place of biggest surprise, though, are in the improvements I have felt in a host of other areas unrelated to digestion. Celiac is an autoimmune disease, so its impact and symptoms are not limited to the digestive tract. I’ve been gradually learning some of these other symptoms and its in these areas that I’ve seen dramatic change.

My hands and feet no longer go numb and tingly frequently and easily. I just thought they went to sleep easily, but it turns out this is a neurological symptom. And its mostly stopped for me. I can lean on my arm or elbow without my hand ‘going to sleep’. Same with my feet when sitting crosslegged or in a chair with one leg curled up. It might seem very minor, but it’s so nice.

I’ve almost stopped having sharp, shooting muscle pains. I didn’t realize how bad these had gotten until I went skating with my daughter again. Right before my diagnosis, it had gotten so bad that when she went as fast as we go in the rink, my back and side and leg hurt enough that I couldn’t even come close to keeping up. A week ago? I was going as fast as she was and had no pain at all. No limping. No sudden back pain. I guess I thought I was out of shape or getting old or something similar. They didn’t cripple me. They just hurt enough to slow me down. And they are almost gone.

I used to almost constantly have canker sores inside my mouth. After the ones I had at the time of my EGD healed, I’ve had only one.

My mind has been noticeably less ‘foggy’. And my overall mood has been greatly improved. I simply have more energy. I’ve been recovering little things I thought lost forever. This past week, for instance, I’ve started waking up again many days a few minutes before the alarm goes off. I used to do that all the time and haven’t in a very long time.

It’s only been a month and already the change has been greater than I ever expected. This autoimmune stuff is nasty.