For good health: People with celiac disease make changes in diet

MARQUETTE – Marquette resident Em Masterson, 25, didn’t know why she was so tired all the time.

She’d been on medication for narcolepsy since she was 15, but it wasn’t really helping. She was also depressed and severely iron-deficient, even while taking three supplements per day.

Two months ago, she finally discovered she has celiac disease, an autoimmune disorder that occurs in genetically-predisposed people where the ingestion of gluten – a protein found in wheat, barley and rye – leads to damage in the small intestine, according to the Celiac Disease Foundation.

This means when gluten enters the intestines, the immune system responds as though it were a toxin, and as a result, nutrients do not get absorbed.

Masterson has mild CD, and when tests first returned with indications of it, she decided to dive into the only known treatment: lifelong adherence to a strict gluten-free diet.

So far, it’s worked.

“Instead of spending my Saturday and Sunday sleeping most of the day, just to have the energy for Monday, I spend my weekends driving out to different waterfalls and geocaches in the middle of the (Upper Peninsula) and hiking ’til late that night,” she said. “I feel like I finally have a life. I’m able to do more than just get by.”

Nichole Blaauw, a certified physician’s assistant at U.P. Digestive Disease Associates in Marquette, said she and her colleagues do consultations and tests for CD at least on a weekly basis. The biggest long-term concern with CD is increased risk of small bowel cancers, though other autoimmune disorders are associated with it as well, she said.

CD is estimated to affect one in 100 people worldwide, with 2.5 million Americans undiagnosed, according to the CDF. People with a first-degree relative with CD have a 10 percent risk of developing it.

CD is a condition that can express itself through a unique variety of about 300 known symptoms, depending on the individual.

“But some patients have no symptoms whatsoever,” Blaauw said. “Those are the hard patients because there’s nothing to stop them (from eating gluten) other than the knowledge that they’re increasing their risk of cancer.”

According to the CDF, children are more likely to experience abdominal bloating and pain, chronic diarrhea, vomiting, constipation, pale or fatty stool, weight loss, fatigue, irritability and behavioral issues, among other things.

Adults are less likely to have digestive symptoms, with only one-third experiencing diarrhea, and are more likely to have unexplained iron-deficiency anemia, fatigue, arthritis, osteoporosis, depression, anxiety, seizures or migraines, infertility or recurrent miscarriage, canker sores, or an itchy skin rash, among other symptoms.

Tests for CD are almost 100 percent accurate, Blaauw said – the gold standard of which is a small bowel biopsy.

For Masterson, who graduated from Northern Michigan University in 2013 with a bachelor’s in psychology/behavior analysis and outdoor education, the diagnosis has been transformational, though not without its challenges.

“I love bread; I love pasta, all of that kind of stuff, so it was hard trying to get used to the gluten-free bread, which I’m still not used to…But the rice spaghetti pasta that you can get is actually really good,” she said. “It’s not nearly as hard to do gluten-free as I was worried that it would be, because so many people now have gluten-free options. It’s kinda been the thing to do.”

On that subject, Blaauw said there are misconceptions about a GF diet in today’s fad-prone health world.

“In some cases, patients are poorly informed,” she said. “What they think sometimes that they’re trying to do is a healthy diet, maybe even with the goal of weight loss…But they’re not necessarily doing it based on symptomology.”

The diet can be expensive and difficult to maintain, she said, so if people don’t experience symptoms and don’t have it in their family, it can be unproductive.

“Take your money and buy organic and fresh produce instead,” she recommends, instead of focusing on expensive GF products.

But CD wasn’t well-known when Marquette resident Theo McCracken, owner of Dead River Coffee, was diagnosed just eight years ago. A smoker for almost 40 years by then, he was diagnosed with emphysema in August 2006, and he quit smoking. Because of the diagnosis and the fact he was underweight, he was prescribed a high-carbohydrate diet, he said, and his symptoms became extremely aggravated.

“(The CD symptoms) coincided with quitting smoking, but I didn’t put the two together right away,” he said. “Smoking suppresses the immune system.”

Smoking was, in fact, allowing his body to absorb nutrients, but upon quitting, his immune system started reacting to the gluten.

“I was calcium-deficient, short of folic acid, short of (vitamin) B12, short of everything,” he said. “I was starving to death.”

Down to 80 pounds at this time, his doctor grilled him on whether he was eating.

“She looked at my blood tests and she said, ‘You’re dying,’ and I laughed (and said), ‘Well, let’s change that,'” McCracken remembered. “And she said, ‘No, this is serious. These are third-world starvation numbers.'”

Out of the blue, he said, she told him to stop eating wheat, to google Celiac disease and to do his best to confine himself to eating fruit and meat.

“And boy, all of a sudden, I started feeling better,” he said. “I’d had constant stomach problems – diarrhea, ulcers – and in like three days, it started clearing up. Symptoms started to disappear, and I started getting healthy and putting on weight.”

Gluten is in a lot of products, he discovered, and the hardest part was getting used to reading labels. But he doesn’t find it too challenging when he’s cooking for himself, because he was never much into bread, cake or pasta in the first place, he said. McCracken does buy himself a ham sandwich from Babycake’s Muffin Co. in Marquette now and then, since they make a “pretty decent” GF bread, he said, but overall he’s not too big on substitutions.

“At the time I modified my diet, you know, I said I’m not eating substitute stuff,” he said. “It’s disappointing. Tofu burgers don’t taste like chicken. So I, for the most part, eliminated things. It’s very easy for me to shop.”

Now, at 175 pounds, McCracken said he feels fat, since he’d never weighed more than 140 pounds before. He still suffers from byproducts of eating gluten his whole life, such as osteoporosis. McCracken considered switching to GF products in his coffee shop, but decided against it, because they’re just not the same, he said. He still bakes pies.

Mary Wardell can be reached at 906-228-2500, ext. 248. Her email address is mwardell@miningjournal.net.