All posts by esammarie

I was diagnosed with both celiac disease and dermatitis herpetiformis in 2009 and have been strictly gluten free ever since. Even my cats are gluten free. I love life and I love sharing new ideas, experiences, insights, successes and lessons learned....even if they have nothing to do with gluten or being gluten free because life is a series of research trials and you never know what you'll discover!

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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Oh, Yes, Me, Too

The leaves finally began turning, not here, where I have rebuilt my life, but, rather, in the mountains linking North to South Carolina. Here, it’s still summer, with daily temps still well in the 80s. There’s no frost on the pumpkins here, just heavy, heavy dew. The trees look tired, droopy, desperate for a cold snap so they finally can rest, but still green. The dogwoods hint at the potential for turning crimson and some Japanese maples across the street toy with rouge on the tips of their miniature leaves, but it’s green, green, way too green for the middle of October. That’s why I mistook the restlessness for anxiety over the state of my health. That’s why I blamed the nightmares on the state of the nation.

It wasn’t until a walk around Pinnacle Lake in South Carolina’s upstate Table Rock State Park this past weekend that memories of past falls hit full force. Continue reading Oh, Yes, Me, Too

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.

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

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

Complicit in Oppression: What I, a White Person, Must Do to Stop It

I have not written for this blog in the past year because I was busy being a newlywed. That silence ends today with a post that doesn’t talk about gluten. It talks about something even more sickening.

This post sprouted from a conversation I followed on Facebook. The conversation was started by a beautiful woman I had the privilege of learning from when she was a student at the university that employed me (and also is our alma mater). I still learn from her, ten years later, as she challenges white people me to understand and confront our own racism and its crippling, killing effect on her and all people of color.

She said she doesn’t trust white people. A large number of her friends admitted their distrust, too, a distrust we white people have earned with our mercurial support for civil rights and equal rights. We show up when it suits us, and when we show up, we twist the whole thing to suit us. We want “credit” for supporting Black Lives Matter with our signs and bumper stickers but where were we in the demonstrations and marches against racist police brutality? We marched en masse for women but our pussy hats all were pink (didja think about the colors of women of color down there?)

Continue reading Complicit in Oppression: What I, a White Person, Must Do to Stop It

Accessorize Snow Wise

There are so many pretty ways to realize your theme for a wedding without causing yourself to cringe when you later look at the photos. I’d be cringing right now if I’d gone all out, say, with a wedding gown or even bridesmaids’ gowns embroidered with snowflakes. I did investigate options for about a day before deciding classic with a sprinkling of snowflakes was the much better way to go. Looking now at the pix, I am glad I did.

I can thank my my dearly departed mother, who had strong and wise opinions about how far to take a theme. I remember her planning a Halloween-themed birthday party for my sister one year when we were kids. She went all out on the decor but drew the line on serving guts in blood (spaghetti and sausage in tomato sauce). It’s all fun and games, she said, until a kid runs home crying about being forced to eat a bowl of guts and a piece of bone meal cake. Who wants to answer that call, my mother asked, especially if the little party-goer ended up barfing on the new sofa once she got home?

I never forgot that bit of advice and it’s served me well.

Continue reading Accessorize Snow Wise

A Little Flakey on the Decor

With Winter Wonderland as our wedding theme, and our wedding scheduled for January 3rd, we made things easy (and inexpensive) on ourselves with respect to decor and accessories. Planning the wedding during the Advent season meant both online and bricks and mortar retailers were all flaked out, and willing to discount, for the season.

The ridiculous popularity of the Disney movie Frozen contributed even more snowflake-themed products to the marketplace, both a boon and a bear. Sure, there were  more flakes available in September and October, but the aqua and purple hues didn’t quite  complement our wedding palette of midnight blue, silver, and grey, nor did the ubiquitous character visages. “I do and Olaf does, too,” just didn’t seem romantic…or age-appropriate. Talk about the need to let it go.

A word about snowflakes. The snowflake seemed the perfect symbol for our wedding. Each one is special, with its own design and its own purpose. One snowflake by itself is nothing much but when it joins with another snowflake its power and purpose are multiplied. Like the snowflake, we are stronger together than we are on our own, yet we retain our unique purpose and design within the relationship. We are snowflakes and even when it gets warm and we might melt, we simply change shape and flow on. It’s an imperfect simile but it worked better for us than guns and grosgrain. Continue reading A Little Flakey on the Decor