Category Archives: Celiac Disease

Wholly, Holy Gfree…Really!

The church my husband and I attend offers a gluten free option during communion; it was a major selling point when we were searching for a spiritual home. Sometimes the gluten free option was Van’s Everything Crackers and sometimes we received rice circles seemingly sized for dolls with self-titled story books.

The church is part of the United Church of Christ, a progressive Christian faith whose “overarching creed is love.”

This post, however, is not about church doctrine or what and why we believe. If you want to know more about the United Church of Christ, check out www.ucc.org.

This post is about the challenges of participating in any community of faith when celiac disease, gluten intolerance, or food allergies separate you from everyone else.

This is about watching the minister tear in half the loaf of bread while proclaiming, “This is my body!” and watching, not with sacred awe, but with horror as bread bits bounce across the table. Maybe they didn’t bounce into the bowl brimming with gfree crackers, I think, only to see glutinous globs on said crackers when the minister proffers the dish moments later.

This is about graciously changing crumb culture:  making clergy cognizant of how crumbs clinging to their fingers create crumby communion crackers, contaminate once celiac-safe crackers.

This is about how I only nibbled a corner of the cracker before covering the rest with a tissue, hoping no one would see me partially partake, and getting sick anyway.

This is about finding the courage to chat with the clergy about cross-contact, about wanting to show them simple steps for celiac-safe communion, and how, strangely shame-laden, I sweet-talked my spouse into speaking in my stead…something I regret.

This is about invitations to potluck gatherings, supper clubs, and even the coffee and tea social hour after service and being unable to participate because participating might be sickening, really sickening. The kind of sickening that comes from a coffee cup proffered by a cheery congregant whose same hands composed the cookie plate so now my coffee cup has cookie crumbs clinging to where I must clasp it.  Conundrum. Can the crumbs be cleansed from my cup or my clasp before I cover my mouth to cough? If not, curses! Those crumbs now course through me. I’m contaminated…glutened.

This is about God calling the clergy to call my husband and me to serve on the Board of Deacons. After we accepted our respective calls, I emailed our minister, asking if I could help the church become more inclusive for those of us on the fringes due to serious medical conditions related to food.

This is about our senior minister then celebrating the ordination of his blessed friend, who broke gfree bread for churchwide communion because he, too, has celiac. The newly ordained to his friend explained he cannot engage with glutinous grain: no loaf, wafer, or cracker. God loves timing a revelation.

This is about our leader rethinking what it means to be inclusive and welcoming after seeing his friend celebrate communion celiac-safely. I only planned to propose plastic to cover the gfree communion crackers to prevent crumby cross-contact. Our minister—by God—went much further. When he announced the 8:30 service would serve gluten free bread for communion, not just for the gluten sensitive but for everyone, my heart heated and my eyes misted.

This is about tears tumbling freely when he tore a piece from the same gfree loaf feeding everyone else and placed it into my hand. In that moment, I felt holy. I felt wholly a part and not apart. After years of feeling separate and not equal, it was Velveteen Rabbit redemption: I suddenly was real, a one-of-Us and not a Them.

This is about the countless times I’ve “participated” in gatherings by sitting at the end of the table, huddled over my brought-from-home container of gfree food while everyone else orders from the menu, or passes around plate after plate of potluck, laughing and sharing the same feast while remarking about how sad it must be to be me, deprived of the communal bounty.

This is about someone seeing, beyond me, that separate is not equal, that a sliver of starch beside sumptuous sourdough disserves the spirit of the Last Supper set by the One whose generosity surpasses any we mortals can muster.

Gfree…you…now…like me.

Amen.

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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

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

Receptively GFree (No Cross-Contamination)

Finding a caterer who not only understands what gluten free means (it’s not, “just avoid the  couscous on the buffet”) but also has the knowledge and expertise to cook 100% gluten free is a challenge. Finding a caterer who can cook delicious AND affordable gluten free food–no $2 upcharge per GFree roll–sounds like an impossible task.

When planning my wedding, I queried a dozen independent caterers as well as in-house caterers at special events facilities in and around metro Atlanta. Several didn’t even bother to answer me. A few seemed to confuse gluten free with the Atkins diet. “We’ll do an all meat and no carbs dinner,” one offered.

Another said I could just take the rolls off my plate and they wouldn’t put gravy on my chicken breast but everyone else should have the gravy because not having the gravy would made the dish less spectacular.

Uh, no, thanks.

My favorite response was, “Well, the bride never eats at her wedding, anyway. You could just bring snacks for yourself and let us make an unforgettable banquet for your guests.”

Really? Continue reading Receptively GFree (No Cross-Contamination)

Piece of Cake!

Finding gluten free cake isn’t as difficult as it used to be, thanks both to entrepreneurial bakers yearning to share with others the tasty spoils of their kitchen wars and big food factories eager to cash in on the gluten free “craze.” Too often, however, the cakes look less like dreamy confections and more like clumsy claymation.

Finding a baker who can produce yummy, truly gluten and dairy free cake suitably beautiful for a wedding is no easy task. The gluten free bride can go with a strictly gluten free bakery or go with a wedding cake baker who offers both traditional and GF cakes. She also can make it herself or have a family member make it, or she can go to the nearest GF food grocer and purchase frozen confections to serve.

I quickly crossed off the bakers who make both traditional and gluten free cakes. I just don’t trust anything made in the same building where durum wheat wafts in the wind. I’m so sensitive, I once got glutened at a tasty national sandwich-bakery chain and I didn’t eat anything. How do they prevent flour from settling into the crevices or coating the work surfaces even if they clean the place with a fire hose and thick suds? How are they segregating ingredients so they don’t commingle on the apron or in the oven?

I also wasn’t going to make my own cakes. I already was DIY’ing the planning, the flowers and the decor, plus relying on family for hair and makeup. The cakes had to be professionally done and done so well no one would say, “Well, they’re that weird gluten free fad stuff; of course they taste like cardboard iced in muslin.” Continue reading Piece of Cake!

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

What? Sparkling Cider Is Not Gluten Free

The holidays call for festive beverages to toast the season. Merry Christmas! Happy Hanukkah! Happy New Year! Weddings also call for festive beverages to toast the happy couple, the father of the bride, the DJ, and whoever else makes the party rock.

When alcohol isn’t an option, sparkling cider fits the festive bill. In our family, we break out the Knudsen sparking cherry and sparkling pear cider. It looks so lovely in my parents’ etched wine glasses. For an extra splash of special, I put a frozen cherry in the bottom of each glass. My niece and nephews have grown up tipping glasses of Knudsen Family’s sparkling cider at every holiday dinner. They look forward to it.

A few weeks ago, I noticed a large display of new Knudsen specialty flavors at Sprouts: caramel apple, green apple, cranberry, and glogg. I got really excited, especially about the glogg, which we tried for the first time last year when Crate and Barrel offered a pricey non-alcoholic, gluten free, non-sparkly version. We waited until Crate and Barrel slashed the price in half and then we guzzled eight bottles. It tasted best when served warm. Why not try this new sparkly version, which had a much more palatable price tag of $2.99 per bottle? Continue reading What? Sparkling Cider Is Not Gluten Free

Retreat! Skidaway Island GFree

DSC00599When I found out I needed pretty significant surgery, I did what anyone would do: I spent two hours researching the issue online, had a good cry, and then I retreated…to public land.

I’m a big fan of the national and state parks systems. Where else can you get breathtaking scenery, soul-soothing peace, and lots to do for so little money? In most cases, the lodging options are pretty snazzy. Continue reading Retreat! Skidaway Island GFree