Category Archives: Health

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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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

Gut Instinct: Finding Stealth Gluten

I’ve delayed writing this post because I wanted a big reveal. Last post I talked about the surprising news from the gastroenterologist that my serology showed evidence of ongoing gluten exposure. I’ve been reeling, trying to find the source. Where is the stealth gluten?

Where, oh where, is the stealth gluten?

After emailing several manufacturers to get reassurances on some beloved faves, and getting no reply from a few (I’m talking about you, Dial soap: just because you’re my husband’s fave doesn’t mean I can’t kick you to the curb), I put my new Nima sensor to work. Continue reading Gut Instinct: Finding Stealth Gluten

Gut Instinct: In Search of an Answer

My gut has been roiling for the past two months and not because of national politics. I got worried about the persistent pain and the degree to which my abdomen appeared to be swollen, so I made an appointment with a new gastroenterologist.

If you have gut issues, you probably understand how stressful it can be to go to the doctor. An MD is no guarantee the person you trust with your health is kind or even competent. As my mother used to say, there’s a top 1/3 and a bottom 1/3 in every medical school’s graduating class, as well as the top 1/3 and bottom 1/3 of medical schools themselves.

The gastroenterologist who diagnosed me with celiac disease in 2009 did so by mail. A week after the endoscopy I received a form in the mail with the following words scribbled on it: Evidence of celiac disease. Restart gluten free diet.

That’s it?

Continue reading Gut Instinct: In Search of an Answer

Planning a Gluten Free Wedding on a Budget

Apologies for the dearth of posts the last two months. I wasn’t sick or in jail, thank goodness. I was super busy planning a wedding. My wedding. Yes, I planned and pulled off an entire wedding—from appetizers, bridesmaids, and cake to tuxedos, underthings, a veil and white gown…and everything in between—for 100 guests in four months.

It wasn’t that hard. I mean, what else is there to do while recovering from surgical removal of one’s womanly innards and resulting complications thereof?

Sure, I could have wallowed in self-pity: woe is me (or, more correctly, I) for being in pain for five months and counting (I have gotten a bit peevish about the pain on a few occasions). How awful to be in menopause when I’m not even fifty (I got over this pretty quickly). Rue that I’ll never have children of my own (this does prickle me with sorrow from time to time and then I think of all the kids I’ve helped as a teacher or adviser in the past twenty years plus being an aunt is pretty danged awesome). Wallowing is boring and surprisingly exhausting. I prefer to look on the bright side of things.

There were and are a lot of bright sides to the surgery. Number one, I don’t have cancer. We can end the gratitude list right there. What else do I need to feel immensely grateful? The surgery and cancer scare reminded me that life is unpredictable and short. There are no guarantees that I’ll have next year or any years after that, or even next week. Life can change in an instant. The doctor could have found cancer and I could be dying or dead right now.

Given that uncertainty, as well as the good news that, at least for now, I’m not dying, why not go for it and get married to the most wonderful man in the world? And why not do it sooner than later? Continue reading Planning a Gluten Free Wedding on a Budget

Drink This

Contrast tastes terrible. Flavor it berry, banana, vanilla, even Thanksgiving Dinner, and it tastes like, well, nothing like berry or banana or vanilla or anything remotely like food. It tastes so terrible, it makes one hate berry, banana and vanilla, whichcontrast is not fair because berry, banana, and vanilla are quite tasty as ice cream or pudding and don’t deserve such bilious wrath. It’s liquid chalk, aptly named contrast because it contrasts starkly with anything you want to put in your mouth and swallow.

Okay, the gallon of saline laxative you have to drink in preparation for a colonoscopy is worse, so I’m grateful that this is only a pint of berry chalk. Continue reading Drink This

22 Years a Survivor

The slanting of five o’clock sun through the branches of trees with turning gold and red leaves pings the bowl of my soul with hollow sadness. I love autumn with its crunchy ground and vibrant sound, the textured weaves of color wound in scarves around craning necks and sweaters pulled down from shoulder to waist so as not to waste any warmth on shorter days and indigo nights.

That same kind of light poured down the afternoon I spent stuffing envelopes with invitations to the Lupus Foundation’s annual fundraiser. On such a mundane Sunday the riot of light lightened my step, filled my heart with cautious joy. Here I was, just four months post grad school graduation, volunteering for the good of good people with a very bad disease. Come on sun, rain down your light! Let the crisp air in cloudless sky blow my heart that much wider. That’s what I thought, fairly skipping into the building. Continue reading 22 Years a Survivor

Miss Diagnosis

A blogger I follow and admire, A Southern Celiac, recently posted about the need to check your medical chart for stray misdiagnoses and other errors. It sparked my own memories of doctors who misdiagnosed me, suggested or provided improper/crazy treatments, put the wrong information in my chart, or otherwise blundered.

This is not to beat up on doctors. I’ve had the privilege of being treated by some of the best and most competent doctors, doctors who really improved my health and well being. I’ve also seen some really bad doctors.

Dr. P diagnosed me with endometriosis when I was twenty. I was in college and the severe pain and wacky bleeding were wreaking havoc. I missed classes, did poorly on exams because the pain was so bad. His recommendation? He said I should get pregnant. I said that was a ridiculous treatment recommendation for my age and condition. He shot back, “Who do you think you are, Miss Diagnosis?” Continue reading Miss Diagnosis

The Secret to Successful Surgery

Dr. W looked oddly casual in his surgical scrubs and snazzy black sneakers, which he confessed would come off–the sneakers, not the scrubs–during surgery. It gave him better balance, he said, while he operated using the daVinci robot. He chatted amiably with us while we waited for the signal that the OR was ready, until the lead surgical nurse came in, scowling. The surgical plan wasn’t in my chart, she said. Dr. W looked, and sure enough, the printed plan wasn’t there.

Yikes. Continue reading The Secret to Successful Surgery

Losing Pieces of Me

“Your surgery is set for August 20th at 10:30 am. Please arrive two hours early. Nothing to eat or drink after midnight. You’ll need someone to drive you home the next day. Call Monica for a cost estimate.”

DSC00597I was riding a bike through the woods of coastal Georgia when the call came. We just had stopped to swig some water and to admire the beautifully dissonant scenery. I’d never before seen woods composed of palmettos and pines, Spanish moss and yaupon holly.

It became real as I stood on a rise overlooking the salt marsh: I’m losing several organs.

We’re not talking your run-of-the-mill organs like the spleen or a kidney or a section of the colon. No, I’m losing the ones that make me a woman, the organs that separate the female from the male and even the women from the girls. I’m losing my ovaries, fallopian tubes, uterus, and cervix. Continue reading Losing Pieces of Me