When Sue Majewski’s doctor ordered a blood test for diverticulitis earlier this year, Majewski requested the blood be tested for celiac as well.
“And she said, ‘Why?’” Majewski related. “And I said, ‘Because two of my siblings had it.’”
The blood test suggested celiac disease, and an endoscopy confirmed it.
At 77, Majewski has been on a whole new dietary journey.
Sitting in the family room of their comfortable Smithville-neighborhood home — they moved there this year after decades in Morgan Park — Sue and Bill Majewski talked about what the necessity of her being gluten-free has meant to them.
Starting with chocolate chip cookies.
“If you use gluten-free flour, the texture is different,” Sue said. “And my solution to that is just add more chocolate chips.”
How has that worked out?
“We haven’t gotten to that point yet,” Bill answered dryly. “Although she, you know, is threatening to try.”
Sue Majewski has researched celiac disease and gluten-free diets extensively over the past couple months, she said. One conclusion she has come to is that most people don’t know very much on the subject. She called upon the News Tribune to try to fill in a little of that gap.
So with the help of the Majewskis, a nutritionist and a restaurateur, what follows is a brief guide to celiac disease and the gluten-free life.
Gluten? What’s that?
“The main thing is wheat, barley, rye, and then oats are questionable,” said Lisa Spooner, an Essentia Health nutritionist whose advice Sue Majewski praises.
It’s recommended that people diagnosed with celiac disease lay off oats for six months, Spooner said. Then you could try oats again. But the other three grains are forbidden for those with celiac disease.
Sue Majewski, a glass-half-full sort of person, noted that this leaves a lot on the OK-to-eat list.
“If you eat fresh meats, fruits and vegetables and dairy, you’re OK.” she said. “So, unfortunately, you can pretty much eat all the junk food that you want. You can eat all the sweets you want.”
Junk food if you’re not including pizza. But even pizza can be purchased or made with a gluten-free cauliflower crust, she said.
That claim was subjected to a Google check, and by the time c-a-u was typed in, “cauliflower pizza crust” popped up.
What’s the problem?
Celiac is an autoimmune disease that attacks the small intestine, according to the Celiac Disease Foundation. Gluten, a protein in the aforementioned grains, triggers an immune response in the small intestine. This damages fingerlike projections called villi, causing them to lie down on the job. When they’re not at work, necessary nutrients aren’t getting to your body. Left untreated, celiac disease doubles your chances of suffering coronary artery disease and quadruples your chance of getting a small bowel cancer. It can be a gateway to other autoimmune diseases.
It’s estimated to affect 1 in 100 people worldwide, according to the Celiac Disease Foundation, and it’s estimated that 2½ million Americans have it, but don’t know it.
Yes, it’s hereditary. So Majewski was wise to ask her doctor for the blood test.
“Some people have really outward symptoms, and some don’t,” Spooner said.
Sue Majewski can testify to that. Her sister develops a rash when she has consumed gluten. Her late brother would become violently ill. Majewski experiences no symptoms at all.
Even a tiny amount of gluten is dangerous to people with celiac disease, Spooner said, so those who have it must be zealous about avoiding cross-contamination. If you spread peanut butter on your wheat bread, for instance, and your partner spreads peanut butter on his gluten-free bread with the same knife, it’s contaminated.
So if you live with other people and you have celiac disease, you should have separate condiment jars and separate toasters, she said.
The Majewskis have separate toasters and separate cutting boards, they reported.
Sue Majewski already has accumulated horror stories, such as when she ordered an omelet with no toast at one establishment. It was served with toast, and when she requested that it be redone, it quickly came back with no toast — and the certainty, in her mind, that the toast had simply been removed. That meant the omelet was contaminated.
At another place, she ordered a salad without croutons. Her request was granted, except that when she finished the salad she found a crouton on the bottom of the bowl. The server said she had picked off the other croutons. Again, contaminated.
A happy exception, she said, is the Duluth Grill, which has numerous gluten-free options (albeit fewer for lunch) and a separate kitchen in which gluten-free meals are prepared.
Tom Hanson, who owns Duluth Grill — along with OMC and Corktown Deli, where the same procedures are practiced — was careful to say that his kitchens are not sterile and that he can’t guarantee there will be no cross-contamination.
But certainly, the effort is made.
“We cook it on the back prep line,” Hanson said. “And we do it with clean pans, clean cutting boards. And if we have to use product like, let’s say, butter, we would go get it from a butter container that was brand new versus one that could have been used in other applications.”
Gluten-free meals are served separately as well, he said, going straight from the cook to the server to the customer.
“There’s literally hundreds of meals coming out every hour, and there can be 10 meals lined up all at one time,” Hanson said. “And so the gluten-free meal, we don’t want that to get mixed in.”
Read the labels
“I think the number one skill that these people learn is really good label-reading,” Spooner said.
It’s not just a matter of looking for wheat, barley, rye and oats, Majewski pointed out, because these grains can go by other names, such as durum, graham or spelt instead of wheat.
Even if the product is advertised as gluten-free, you should check for yourself, Spooner said.
“There were some instances where some companies listed their food item as gluten-free,” she said. “But they still had wheat on their ingredient list."
At the potluck
Majewski learned from her sister, who always takes along cheese and (gluten-free) crackers and fruit when she goes to a church potluck or neighborhood barbecue. “You can’t take a chance with, for instance, a hot dish, because there are so many ingredients in it,” she said.
Speaking of church, Spooner said many churches now offer gluten-free communion bread.
“So many people asked me if I feel better,” Majewski said. “Well, I didn’t feel bad to begin with.”
Spooner said, however, that many people with celiac disease who eliminate gluten will feel better, even if they didn’t have any particular symptoms.
“They’re going to report better energy,” she said. “A lot of people talk about a brain fog that they often get when they haven’t reduced the gluten. (After they do) they feel like, ‘Oh, my mind is a lot clearer now.’”
The rest of us
Some people don’t have celiac disease but they are gluten-intolerant, Spooner said. Others may have a wheat allergy. Those categories of people also should go without gluten.
Is it a good diet for the rest of us?
“There is no science to say that all of us would benefit from eating a gluten-free diet,” Spooner said. “But you’re going to get people that would argue with that.”
Spooner used to help with a support group for people with celiac disease, but that group no longer exists, she said.
Majewski regrets that, and she wants to start a group.
“It wouldn’t be a support group for emotional needs,” she said. “It’s learning what you can and cannot eat and how it affects you.”
She invited anyone interested in starting such a group to call her at 218-626-2638.
Spooner suggested the following online resources for people interested in celiac disease:
Celiac Disease Foundation … celiac.org
National Celiac Association … nationalceliac.org
Gluten Intolerance Group … gluten.org
Raising Our Celiac Kids (ROCK) … raisingourceliackids.org