Celiac Disease: A Life-Changing Diagnosis

iStock / Celiac Disease is a genetic autoimmune disorder. When gluten is ingested the small intestine is damaged.

The inherited autoimmune disorder is often misdiagnosed and misunderstood.

After years of visits to countless doctors, and a barrage of blood tests to figure out why I was feeling so sluggish and wasn’t able to lose a single pound no matter how hard I tried, I received a diagnosis in December 2016 from a young doctor filling in for my general practitioner that would change my eating life forever. “You have Celiac Disease,” he said.

At that point, I knew as much about Celiac as you probably do. “So, that means I can’t eat any gluten, right?” I asked ignorantly, already missing my beloved bear claws.

Well, yes, but not exactly.

Celiac Disease is often confused with gluten intolerance, as many of the symptoms are the same: You eat the most delicious piece of garlic bread ever (oh, how I’ll miss you!), and within half an hour, you’re bloated, in pain and warming up the seat in the nearest bathroom.

The difference is that Celiac Disease is an inherited autoimmune disorder whereby the body attacks itself whenever the enemy gluten invades. Gluten is a protein found in common grains like wheat, barley and rye, and every time you eat something with gluten, it is an act of war against the lining of your small intestine. Not only does the body attack the gluten, but it ravages down to stubs the finger-like lining called the “villi,” so they are unable to perform their number one job of absorbing nutrients into the body and you become malnourished. Other calamitous things can happen over time if Celiacs continue to eat gluten, such as bowel and intestinal cancers.

Now, I don’t fit the mold of the stereotypical Celiac patient: underweight, pale and sickly-looking. As it turns out, all that “fat” around my midsection was inflammation (well, some of it probably was fat). I had even said to several doctors, “I feel inflamed!” but they weren’t listening. My poor small intestine was in distress, waving a white flag of surrender from the battlefield for years, and doctors from whom I continually sought relief completely missed the diagnosis.

And it makes me sick—literally—to think that I could have been on the road to healing sooner, and that I continued to batter my small intestine with gluten for at least six years. On average, it takes four years to diagnose a symptomatic Celiac in the U.S.

I take small comfort in the fact that I am far from alone. According to the University of Chicago Celiac Disease Center, one in 133 people in the United States (about 3 million) have Celiac Disease—enough to fill 4,400 Boeing 747 airplanes and 936 cruise ships. (Sounds like a real vacation to me.) However, 97 percent don’t even know they have it, because so many of the symptoms, like diarrhea, bloating and abdominal pain, are also symptoms of other disorders, such as Irritable Bowel Syndrome.

So, what causes Celiac Disease? Although research shows a genetic predisposition to it, the exact cause is unknown. Certain things can trigger the gene, such as surgery or a traumatic life event. My emergency appendectomy? Possibly. Losing my business? Wouldn’t doubt it. Raised two teenagers? Highly likely. As mentioned, we do know that Celiac Disease runs in families. First-degree relatives (parent, child, sibling) have a 1 in 22 chance of developing celiac disease; second-degree relatives (aunt, uncle, grandparent) have a 1 in 39 risk.

Upon hearing the news, I contacted my sisters and daughters. We aren’t yet sure who else carries the gene, but my younger sister, who has suffered from many bizarre illnesses in her life that share Celiac symptoms, is getting tested. I almost hope she has it, since at least her ongoing health mystery will be solved after two decades, and she can start healing.

And that got me thinking: If Celiac Disease runs in families, what about ethnic groups? How about Native Americans?

I posed this question to Jennifer North, vice president of Beyond Celiac, a national patient advocacy organization that promotes early diagnosis and disease management, and advances research. “We have not been able to find specific prevalence data for Native Americans,” she said, but pointed me to a study that did address this issue. One of its authors, Dr. Alessio Fasano, said: “What is totally missed, in my humble opinion is a systemic survey in African Americans and Native Americans.”

Obviously, more research is in order, as this disease continues to mystify people, especially the medical community. “Celiac Disease is woefully misdiagnosed because some of the over 300 symptoms overlap with other ailments,” said North, adding that doctors were educated about it when it was thought to be a childhood disease many moons ago. “They were told in medical school that they would never see a case,” and therefore they do not look for it.

Which brings me to this important tip: If you are suffering from an unnamed, unknown ailment, I highly recommend that you see young doctors, as their medical training is more up to date. Within five minutes of talking to me and conducting a brief exam, my doctor, young enough to be my son, made the spot-on diagnosis (later confirmed by a simple blood test) and mentioned he learned about Celiac Disease in school.

The upside to this life-changing diagnosis is that I have become an avid reader of food labels. You wouldn’t believe all the products with gluten in them. Soy sauce, really? And I have been forced to eat healthy—the way we should all eat, anyway. Much like the Mediterranean diet, except nothing with wheat, barley or rye in it. Corn is allowed, thank goodness. It would have been a real death sentence had I been forced to give up popcorn for life.

iStock / Those suffering from Celiac Disease must consume foods free of wheat, barley, and rye. Many companies are now making products without gluten.

Of course, I have dropped a few pounds. But these days, I am more concerned about the health of my insides than how I look on the outside.

Now that my children have flown the nest, I must, at last, turn my attention on myself. I rub my swollen, diseased belly, not unlike when I was pregnant, and declare that the time has finally come to nurture me.

Lynn Armitage is a contributing writer and enrolled member of the Oneida Tribe of Indians of Wisconsin.

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