Who Am I?

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.


Celiac Family

Posted: July 12th, 2010 | Author: | Filed under: Celiac | Tags: , , , , | 1 Comment »

It’s been a rough couple of months. Since celiac has a strong genetic component, we decided it would be wise to have our two younger children screened for celiac disease as part of their annual physicals. My wife and I were shocked when both of their blood panels came back not just positive, but strongly positive for celiac. (The most specific celiac test was literally “off the chart” for both of them. It exceeded the maximum measurement used by the test.) It’s been an emotional roller coaster. The odds that any first degree relative (parent, sibling, or child) of someone with celiac disease will also have active celiac are roughly 1 in 22, so we didn’t really expect either test to be positive, much less both. It was enough of a statistical oddity that my wife decided to get screened as well, just to make sure they weren’t getting a genetic double-whammy. But her celiac panel was normal, which means they both got it from me.

Of course, there isn’t anything I could have done about it. I didn’t control my own genetic makeup, much less the genes I passed on to my children. Rationally, I know that. But it still feels awful to know that you passed an incurable (though manageable) disease on to your children.

We’ve now gone through the cycle of gastroenterologist appointments and small intestine biopsies. The biopsies confirmed the celiac blood panel for both of them, so there’s really no room left for doubt. I’m proud of my kids. They’ve both handled the diagnosis surprisingly well. Obviously, they aren’t happy about it, but they are putting as positive a spin on it as possible. My son, who is headed off to college, commented that it would force him to avoid most fast food, which he called one 0f his “weaknesses”. He’s something of a fitness nut and was happy to confirm that his preferred protein shake powder was gluten free. College will be a challenge for him, but he’s going to a university that seems to have a pretty high degree of awareness about celiac and other special dietary needs, so that’s a plus.

Our youngest is just entering her teen years. I imagine the next few years will be particularly challenging for her. And she’s more visibly upset about the diagnosis than our son. Still, she tries to be more positive than not.

This does demonstrate the importance of screening, especially if someone in your family is diagnosed with celiac disease. The one positive from this is that neither of my children yet have any celiac-related health problems and if they maintain a gluten free diet, they will never develop any of them. The immediate effect of celiac disease — damage to the villi of the small intestine — rarely produces visible symptoms until significant damage has been done. So if you wait until visible symptoms appear to test for celiac, then you’re waiting for the person to be hurt enough by the disease that it will take a lengthy period of time to recover from both the primary and the secondary effects of the disease. My kids have had relatively little damage done to their bodies at this point and do not yet have any of the secondary symptoms. With a moderate amount of self-discipline, they’ll never develop the myriad problems I developed. That, at least, is something positive.  I try to reinforce that with both of them.

A negative celiac blood panel does not rule out the possibility that you will develop the disease. Only a genetic test can do that. So if you have an immediate family member with celiac, it’s probably a good idea to still be screened every 3-5 years after a negative blood panel. It’s a simple blood test and trust me, it’s much better than having the disease ravage your body undetected for years.

I guess I would say that I’m crushed both kids inherited this from me, but glad that we caught it before it really hurt them. I’m also really glad the new health insurance law allows both kids to stay on my insurance until they are 26 and prohibits coverage denial for pre-existing conditions.

On a personal note, I had my first annual follow-up appointment today for the celiac-related osteoporosis in my spine. After a bit more than a year gluten free and taking 1800mg of calcium spaced out three times each day in 600mg doses, my osteoporosis has improved to the less serious osteopenia. Basically, I’m gaining bone density without medication, which is a really good thing. (Nobody tests osteoporosis medication on middle-aged men.) Hopefully next year I’ll be at or near the normal bone density range. That was really good news to hear. I’ve been as careful as I know how to be and it’s good to have my effort validated. I’m also feeling better than I’ve felt in years. Now I need to get back on a more disciplined diet and exercise regime. I used to be really good at both, but that’s one of the things that fell by the wayside as I felt worse and worse before my diagnosis.


May Is Celiac Disease Awareness Month

Posted: May 4th, 2010 | Author: | Filed under: Celiac | Tags: , , , | 2 Comments »

May is designated Celiac Disease Awareness Month. As I’ve gradually healed and continue to heal since my diagnosis roughly a year ago, I’ve begun to understand how important it is to raise overall awareness of this disease. While celiac disease is an autoimmune disease that affects roughly the same percentage of the population as type 1 diabetes, it has had a much lower level of recognition. In large part, that’s because it tends to have a more gradual onset presenting with over 300 possible symptoms. While some people are impacted so severely by celiac disease that they experience major distress, like kidney failure, in a fairly short period of time, most of us experience the slow development over time of a bewildering array of seemingly unconnected symptoms. In fact, I didn’t even recognize some of my symptoms as symptoms until they began to fade when I eliminated gluten from my diet after my diagnosis.

Study after study tells us that the vast majority of people suffering from active celiac disease remain undiagnosed. In that sense, I’m one of the fortunate few. My family doctor was alert enough to tie unusual blood work with several other seemingly unrelated things and referred me to a gastroenterologist even though I was not specifically complaining about any digestive tract symptoms. (I did and do have a number of such symptoms, but they developed so slowly that I didn’t notice the onset and were not severe enough to trigger any awareness that something was seriously wrong.)

The blood tests for celiac disease have now been improved to the point that, given its prevalence and difficulty of diagnosis, it should become one of the things for which we routinely screen. We know that 95% or more of those with active celiac are undiagnosed. We know that they have a 500% higher risk of developing certain cancers, are at a greater risk of developing other autoimmune diseases, and are at risk for a host of other long-term health problems. Further we know the disease is notoriously difficult to diagnose correctly from symptoms alone. Since we have pretty accurate blood tests now (which was not true as recently as 10 years ago), why would we not screen for it?

The Celiac Nurse has posted a great article for Celiac Disease Awareness Month that, among other things, provides the links to her year-long, in-depth articles on the categories of symptoms associated with celiac disease. I strongly recommend taking the time to read her post and the linked series. It’s very likely that somebody reading this post has celiac disease and doesn’t know it.


6 Months Gluten Free!

Posted: September 28th, 2009 | Author: | Filed under: Celiac, Personal | Tags: , , | 5 Comments »

This marks my first six months on a gluten free diet (or within a couple of weeks of six months, anyway). Since I got the results of my blood tests today during my appointment with my gastroenterologist, it seemed like a good time to post a status update.

I had great results! One test (I’m not sure what it measures) went from >160 to <1:10, which the doctor tells me is a dramatic improvement. Of the two TTG auto-antibody tests, one went from almost 100 to 2.8. The other went from almost 40 to 10.3 and was the only test that was still a little out of the normal range.

My doctor told me that I’m obviously complying with the diet, that what we’re doing as a family is working, and to keep doing it. He’s going to have the tests reworked annually to monitor my progress. He was a bit impressed at the rate of improvement. He mentioned that everyone has ‘cheater’ days on a medical diet. I actually don’t. While it’s very hard to be certain you have completely avoided gluten in all situations, I have never yet consciously eaten anything I knew to contain gluten. Any gluten I’ve consumed has been accidental. However, my wife and I have worked hard to avoid such accidents. It’s nice to see those efforts pay off.

For whatever reason, I’m less prone than perhaps some people are to ‘cheat’ once I have actually decided to do something. A friend once told me that most people aren’t like me. They don’t decide something and then do it. Or something to that effect. I didn’t and don’t exactly understand his comment, but perhaps my lack of ‘cheating days’ fits in there somewhere.

I was worried that I was missing something somewhere and that my blood work would not show significant improvement. Changing to be gluten free has not been the easiest thing I’ve ever done. While it takes significantly less willpower than quitting smoking did, eating gluten free is much more complicated. There is so much to check and it’s so easy to make a mistake, misjudge a restaurant or product, or even end up with a contaminated product. I was extremely relieved at the results today.

And, a couple of weeks ago, my HDL (good cholesterol) tested high enough to be in the normal range for the first time since they started testing it some years ago. So I’ve really had two good blood tests in a row.

It seems I really am getting better. 😀


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.


Not the Fast I’ve Chosen – Part 9

Posted: May 16th, 2009 | Author: | Filed under: Celiac, Fasting | Tags: , , , , , , , , , , , , , , , , , , , , , | 1 Comment »

I closed my train of thought in my last post with the idea that, though God has not given me celiac disease for any reason whatsoever, he has been quietly at work preparing me and giving me the tools, should I care to employ them, to stand and perhaps even grow in the face of this disease. For the reality is this: though the diagnosis is still so new to me that I have a difficult time truly wrapping my head around it, celiac disease has been working havoc in my body for years now. My gastroenterologist can’t even say how long it’s been active, but from the visible evidence and the other physical effects, it has clearly been a long time. That means that for at least some significant portion of the journey of discovery about Christian fasting that I have described in this series, I was actually suffering from this autoimmune disease.

I may not have known I had celiac disease, but God certainly did.

Now, I suppose I could be angry at God for knowing I was sick and doing nothing to heal me or somehow making me aware of it sooner. But that seems rather pointless to me. Further, I know that God’s purpose is to bring me into his life, to have me and all humanity participate in union with God and with each other, to conform us to the image of his Son, who lived the life of the faithful man God intended each of us to live.

My core cultural formation was such that the center of my being was shaped in more hedonistic and narcissistic ways than not. Would God physically healing me, especially if I didn’t even know I was sick, move me closer toward the center of the life of God? Or is my true and holistic healing to be found in the proper ascetical practice that allows me to heal from the effects of this disease? Might not that path carry healing not only of body, but also of spirit and will? I see the possibility. I see it through the lens of all I have read and heard and encountered of Christian fasting. No, I’m not angry at God at all. I know him. I know how much he loves all of us. And I’m beginning, just beginning, to understand something of the way of life. I understand enough to know that I desire more than simply a body which functions properly. I want to become truly human.

So no, this is not the fast I’ve chosen. It’s not a fast I want. But this is the fast I’ve been given. Will I have it be a fast for the physical and spiritual healing of my whole soul? Or will I have it be a fast of misery and destruction? Will I take advantage of the tools that God has graciously prepared me to use, even if I am still a neophyte and clumsy in their use? Will I choose instead to fast the fast of demons, a narcissistic fast, a fast that is all about me? Or will I ignore the fast altogether and destroy my body? Those are truly the only real choices I face at this  juncture. As the Didache says, “There are two ways, one of life and one of death, but a great difference between the two ways.” Narrow is the way of life. Broad is the way of death and destruction.

I choose life, in the fullness of the sense of the word.

This is my fast.