Tag Archives: Dermatitis Herpetiformis

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

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Let’s Makeup

When’s a good time to try new makeup? A) When the dermatologist tells you the ridiculously itchy, scarring rash on your elbows, knees, shoulders and shins is dermatitis herpetiformis, an autoimmune disease linked to celiac disease; B) when the gastroenterologist tells you the DH diagnosis is spot on because the biopsies of your small intestine plus the blood tests all say celiac disease; C) it’s the holidays; or D) you’re getting married.

I go with E) all of the above.

When dermatologist said I had DH, I had no idea how radically my life would change. When the GI doc handed me the celiac disease diagnosis–wait, he didn’t hand it to me or even tell me face to face. I got the happy news in a form letter sent by snail mail: “the results are consistent of a celiac disease diagnosis. Start the gluten free diet,” was all it said.

Given no guidance by the doctor, I dug up everything I could about the two diseases on the Internet. I ordered books from IMG_7865Amazon. I subscribed to magazines like Living Without, the Gluten Free Living, and Simply Gluten Free.

I learned that I had to change not only my diet, but also every pot, pan, utensil, and dish with which I cooked and ate.

After a month of constantly being glutened and having no idea how it happened, I realized I had to change all my health and beauty aids, too. Some posts and pamphlets I read said not to worry about your soap, shampoo, body lotion, facial moisturizers and even makeup, except for lipstick, because you don’t ingest them. Others said absolutely be fanatical about them because, honestly, how many times a day do you touch some part of your skin or hair without even thinking about it and how many times do those same fingers put something into or touch your mouth?

Plus, how do you keep the rinse water away from your mouth when you cleanse your face or wash your hair? I can’t.

If there’s a chance that even tiny bits of something could end up inside me, it has to be gluten free. End of GF soapboxing. Continue reading Let’s Makeup

A Touchy Subject: Intimacy

Here’s a touchy subject: intimacy. Intimacy as a person with one or more chronic diseases/conditions/illnesses is a challenge, at least it’s been for me. It requires hefty doses of humility and humor, both of which chronic pain can deplete even in the most positive person.

I have fibromyalgia and celiac disease, which means fits and flares of debilitating symptoms that contribute to a rolling landscape of pain. With celiac disease, the pain comes from being accidentally glutened. There’s the crampy pain, the inflammation pain, and the stabbing pain inside the intestinal tract that can frog-hop for several days. The accompanying GI disturbances–first, there’s no movement and then a few days later, there’s way too much movement in said intestines–are anything but sexy. I also get the DH rash and not just on my arms and legs. It pops up on the orbs with which I might moon someone if I was inclined toward such behavior. That rash creates an itch that must be scratched: not the kind of self-touch that excites one’s date, let’s just say. Continue reading A Touchy Subject: Intimacy

Ten Lessons Sans Carols: #7 Glögg Glug Gluten Free Good (With Frogs)

I’ve been gluten free for five years now and it’s greatly improved my health. I became alcohol free (AF) nearly three years ago and that also has improved my health…and saved my life. Alcohol’s a deadly chemical for me, far more deadly than gluten, so consuming any amount of it is akin to jumping out the window of a tall building into a mound of ravenous fire ants. If the fall doesn’t kill me, the ants will, and the dying process will be excruciating for me and my loved ones. By the way, alcohol totally aggravates dermatitis herpetiformis, the skin rash some of us with celiac are extra winners to have. It won’t bring on an outbreak, but if you have an outbreak, it will itch more and spread more and bleed and scar more. My poor legs and arms bear witness to this. Once I went alcohol free, the outbreaks were much less severe in intensity and in damage.

Two weeks before Christmas, Crate and Barrel put all their holiday food fare on sale with free shipping. At 30-50% off and delivered to me for free, I settled down for some serious online shopping. I immediately snapped up seven adorable boxes of chocolates shaped like mice to give as gifts. I’m glad I did because everyone who received a box squeaked with delight at both the cuteness and the yumminess, although my cousin’s son wanted to know if she had any more chocolate rats after scarfing half the box. No? Rats. Continue reading Ten Lessons Sans Carols: #7 Glögg Glug Gluten Free Good (With Frogs)

Putting Your Health Stats In Your Pocket

When I received the diagnoses of celiac disease and dermatitis herpetiformis, I already had a self-concept Jerry-rigged so the bent Person With Chronic Incurable Illness identity sprang from the conventional High Achiever boxed self  taped to the scaffolding of People-Pleasing-Worryer and criss-crossed with labels like  Short White Yankee Gone South. Here was yet another aspect of me that needed labeling, another imperative to redefine myself.

Anyone with celiac disease has a multitude of labels and identities to choose from. I could emphasize the food aspect and self-identify as GF or gluten free. I could focus on the autoimmune aspects of the disease and say I’m multiply autoimmune impaired in a nod to all the ways my body attacks itself: fibromyalgia, asthma, celiac disease, Raynaud’s, etc.. I simply could be a celiac but this one makes no sense to me. The disease is celiac disease. How can someone who has it be it? This one also irks me because it highlights how society likes to use a single label to define all the parts of you, as if having celiac disease explains everything about you, from heart to soul to bones to skin. Continue reading Putting Your Health Stats In Your Pocket

This Is a Test: The Wellness of Failure

Test results change lives. They can define and redefine a person in a flash. Remember how you felt when you first passed the test for your driver’s license? In a matter of minutes you went from kid passenger to Grown Up Driver. How about the SAT or the GRE or the MCAT? Those scores sealed your academic fate: told you and whoever else accessed them what tier school you could or could not attend and how many degrees you could pursue. One minute you’re dreaming of climbing the steep hills of Ithaca in a Cornell red jacket and the next you’re standing in line with a mountain of textbooks, sporting the muddy colors of Whatsamatta U.

I still remember the moment the dermatologist came into the exam room to tell me the skin biopsies came back with a diagnosis of dermatitis herpetiformis. My face lost its color as I thought this meant I’d acquired some horrific contagious disease that would render me dateless for the rest of my life. Continue reading This Is a Test: The Wellness of Failure

The Failure of Wellness – Part 2

Last week I completed my last clinical visit for the trial. Maybe to prolong the experience, I lost my way in the office complex. For some reason I was sure the building was on the right, when, in fact, it was and remains on the left. How did I misremember that? I kept driving around and around the buildings on the right, believing number eight would pop up between numbers twelve and sixteen. It didn’t. I finally decided to drive to the other side of the complex and there, eight appeared suddenly between seven and nine. Imagine that!

Once inside the correct office, I was whisked into the exam room, which still registered as near-Arctic on the thermostat. Once again this proved problematic for drawing blood, though the coordinator only stuck me twice before hitting the vein. My blood trickled into the test tubes, Continue reading The Failure of Wellness – Part 2

The Failure of Wellness – Part 1

The bad news came by phone: “Bad news. You failed randomization. You measured 2.5 but needed to be no more than 2.”

“Oh,” I lamely replied, wondering what 2 and 2.5 meant. Millimeters, maybe? I didn’t ask, though. I knew it referred to the measurement of villi and how damaged they might be from exposure to gluten.

The coordinator sounded so dejected. “We’re really disappointed,” she continued, and I thought I heard her add “in you” under her breath, but that was my inner voice, not her outer one.

“I’m so sorry,” I said, feeling as if I really had failed her, failed all of celiacdom. Continue reading The Failure of Wellness – Part 1

You’ve Experienced an Event

Those were the words the study coordinator used when she called me yesterday afternoon to tell me I’ve qualified to move to the next step in the clinical research study. An event. When I use the word “event” I usually mean something with a fancy dress and snazzy high heels and if it’s a special enough event, some wildly patterned stockings. I think of hushed crowds readying to unleash rowdy cheers when the curtain rises or the ripple of excitement when the celebrated chef steps up to the cooking station or the wave of bodies suddenly moving when someone turns on the dance music.

No such snazziness or fanciness in this case. The event was the advent of pain. Lots of pain. The kind of pain that makes me suck in my breath and double over; the kind that makes me see flashes of white. That last one might go along with the neurological symptoms I forgot followed severe gluten contamination: headaches, muscle twitching and sudden weakness, waves of anxiety. Celiac disease causes lots of crazy symptoms. And then there’s that “exquisitely prurient” DH rash (which is a nice way of saying a rash that makes you want to rip your skin off). The blisters cluster on my forearms, shoulder, shins and knees. This time they are tiny and only a few itched so badly I scratched until I bled just a little. This means some new purple patches for my already scarred little legs.

I’ve officially cross-contaminated myself enough times to turn my GI tract into a war zone. This joyful news means they can embed medical photojournalists behind enemy lines for a close-up look at the  flattened landscape where thousands of villi used to wave busily in the gastric breeze.

Thank God. I didn’t have to resort to drastic measures like ingesting Dunkin Donut holes or kissing someone after they cheerfully chowed down on a chicken biscuit from the nearby fast food emporium.  I’ll admit both strategies crossed my mind but I couldn’t do either without feeling dirty.

So now we wait for the gastroenterologist’s office to call to schedule the endoscopic exam. And we stay contaminated and thus sick a little while longer. And then? Exam and healing! And a little more mango sorbet. Gluten free, of course.