Tag Archives: Celiac Disease

What’s Not Linked to Celiac Disease

Every week it seems I hear a new theory to explain the dramatic rise in autoimmune disease incidence in general and celiac disease in particular. I’m glad researchers are testing these theories, which seem to gain immediate traction and get shared as fact as soon as someone says it out loud. Just because it sounds plausible doesn’t make it probable. I learned that in my first statistics class along with the equally important gem correlation is not causation.

I especially appreciate Beyond Celiac, formerly known as the National Foundation for Celiac Awareness, for its emphasis on research. It its own words, “Beyond Celiac unites with patients and partners to drive diagnosis, advance research and accelerate the discovery of new treatments and a cure.” Frustration with the lack of treatment options beyond the gluten free diet for people with celiac disease, and excitement around new research efforts to better understand and ultimately cure celiac disease prompted the reorganization and rebranding of NFCA. I am thrilled.

Sure, I need support and I absolutely need as much information as I can find about living well with celiac disease. For the newly diagnosed, the many celiac help organizations out there are powerful sources of empowerment, especially given the poor job many doctors do educating patients about how to live well once they’ve been diagnosed.  Mine said, “Follow the gluten free diet,” and that was it. Thank God I had a computer and knew how to mine the treasure chest of information online.

I also need more. If you’re like me, navigating the daily world can be treacherous when you’re trying to avoid gluten. When I’m at home I can control what comes into the house and what goes into my body. When I’m out in the world, it’s another ball of wax. Gluten lurks everywhere. I once got glutened by hand soap in an office restroom. Turns out the soap had wheat germ oil in it. Yikes! I also have been contaminated by gluten in nearly every coffee shop I’ve gone to meet clients. There are crumbs from someone else’s blueberry muffin on the tabletop, crumbs on the barrista’s hands from handing that muffin to the customer before grabbing my coffee cup to fill it with the house joe. I’ve gotten glutened by people’s dogs and cats (if they eat food containing gluten and then lick their fur and then I pet their fur and then forget to wash my hands before putting something in my mouth, ta da! Gut wrenching.)

I long for some kind of medication I could take when I accidentally ingest gluten to minimize the repercussions. I don’t want to “cheat” and deliberately eat gluten–it’s not worth the pain and agony–I just want to be protected in case gluten gets in me. I’ve become so turned off by gluten I don’t think I ever could ingest it, even if someone handed me a pill and said, “This will prevent you from getting a reaction so go gluten!” I just want to be healthy and spend less time in the bathroom.

All that said, I’m glad to hear this bit of research news from Beyond Celiac:

A large-scale, international study concludes development of celiac disease and type 1 diabetes is not associated with drugs used to treat common childhood infections.

You can read the full story here.

Whew! As a kid, I never went a year without at least one bout of strep and at least one ear infection and one other respiratory infection. I took at least two courses of antibiotics every year and sometimes more. It all started with a severe case of gastroeteritis when I was 18 months old. I still have the scar on my ankle where they had to insert an IV for antibiotics because my arms were too tiny for the IV. I had lost half my body weight from throwing up by the time our pediatrician agreed with my mom I was really sick and they rushed me to the hospital.

Of course, the copious quantities of secondhand cigarette smoke I inhaled on a daily basis contributed even more to the sad state of my respiratory health, but that’s another story.

In any case, I’ve registered with Beyond Celiac to be part of clinical and meta research trials. I want to help researchers help me. That’s what started this blog, to share my experiences as a clinical research subject. I urge you to register, too. We have to help those who want to help us. They can’t find treatments and cures without us. Register at https://go.beyondceliac.org/

And in the meantime, rest easy. The antibiotics didn’t make you sick. At least not with celiac disease.

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Morality and Medical Issues, Part 2

Tuesday’s post challenged the notion, debunked by gobs of science, that illness and disability somehow are the results of moral failing. After I posted, I went running–it’s my primary treatment for fibromyalgia and for guarding against a host of other ailments–but I couldn’t escape a nagging feeling about the post.

A few blocks into the run it hit me: I feel guilty about being sick.

Again.

Still.

Damn.

I really do believe the God of my understanding isn’t doling out diseases and disabilities as punishment. I absolutely can’t get behind a god who zaps a beautiful baby/child/youth/adult/mother/father/sister/brother/friend/foe with ___ (insert name of a disease or a disability) because he or she or his or her kin didn’t read the bible enough/didn’t attend church enough/wasn’t pure enough/wasn’t repentant enough/ committed some litany of sins. I’d like to think God has better things to do than play whack-a-sinner, although whack-an-a*hole has a certain dark appeal, at least in the abstract. Continue reading Morality and Medical Issues, Part 2

Illness Is Not A Moral Failing

Screaming loudly from more than a corner of the quest to repeal and replace the Affordable Care Act is this notion that moral, upstanding people take care of themselves and do not get sick; therefore, they do not need guaranteed health insurance or subsidized premiums to make insurance affordable. This line of thinking suggests we who have chronic illness somehow bring the malaise upon ourselves. We don’t lead clean, healthy lives; instead, we make bad choices which lead to our illnesses. If we put our money on organic food instead of smartphones, I’ve heard said, we’d be healthier. If we pulled ourselves up by our bootstraps and worked to become wealthy like regular Americans, rather than laying around bemoaning our ailments, we’d stop being a drain on the economy . . . and we wouldn’t need to see the doctor so often.

The trouble is, science doesn’t support this kind of thinking. Having a chronic autoimmune disease like celiac disease as I do, or Sjogren’s as my sister does, or ankylosing spondylitis as my other sister does, is more a fuction of genetics plus environmental risk factors than of moralilty. Continue reading Illness Is Not A Moral Failing