Celiac Family

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.