My experience with celiac disease in the house

Bill and Me

Dinner on the screen porch, May 2012

My husband has celiac disease. What that means in short is that he can’t digest and is actually harmed by gluten, which is mainly found in wheat and is all-pervasive in the standard American diet. This condition affects more than just his life and well-being; it has repercussions in our relationship, our social life, and our family. And it doesn’t involve just his digestive system but has come with a lot of other symptoms that have had an impact on his, and our, quality of life.

It’s been a long and roundabout journey for both of us, and in recognition of May as celiac disease awareness month, I’m sharing the story from my perspective.

The Road to a Diagnosis

Since he and I first met in our twenties, my husband and his digestion have been at war. Some of the signs things weren’t as they should be were all-too-common episodes of belching, indigestion, gas, and bloating. One day in the early 1980s when he was in his 30s a little itchy spot of pink showed up on the back of his knee, and as time went on larger ones showed up on other parts of his body. It took years to get a diagnosis of psoriasis, an autoimmune skin condition that can come with celiac disease. He had episodes of depression and debilitating, painful arthritis. It wasn’t until he had the right tests a little over a year ago that he got a definitive diagnosis for celiac disease.

Our life has been full of his visits to medical professionals: doctors, digestive specialists, dermatologists, naturopaths, allergists, chiropractors, an integrative healing specialist, and finally a nutritionist (more on that last one later). He’s used relaxation therapy, antibiotics, skin creams, rotation diets, chiropractic, digestive aids, probiotics, and enzymes, to name a few. Many a night while I slept he would sit up waiting for the gut pain to ease. Sometimes at work he’d have to find a place where he could lie flat until the pain went away. And when he hurt, I did too.

After extensive testing by a team of medical doctors at a local medical center, he was told that because they couldn’t find anything wrong on the tests, it was probably psychological. An endoscopy with biopsies didn’t show any damage to his intestinal villi. (Villi are the projections in the lining that become damaged in celiac disease; damage to them is often thought to be the defining diagnosis of celiac disease.) I’ve heard that men are more difficult to diagnose when it comes to celiac disease. The only guaranteed way for my husband to feel good was to fast for two or three days.

In January of 2008, we took a two-week vacation to a mineral spring in Florida in hope of helping his psoriasis, which had spread. That was when he suggested going gluten-free. My heart sank, because I love to cook and we’d already started cutting out foods that we had found he couldn’t tolerate like corn, onions, and beans. (Untreated celiac disease can trigger a lot of other food intolerances.) Our motel had grills in the courtyard, and I do love grilled meats and vegetables, so that’s what we had. At the end of the vacation he felt better, and after the days in the sun and healing water, his skin had mostly cleared up.

So we stayed on the almost completely gluten-free path, not knowing for sure if it was really necessary because of the negative biopsies. He kept getting better and still had food reactions, but less often. In spring of 2011 he went to a certified clinical nutritionist, Susan Allen, at Park Ridge MultiMed, a storefront clinic four hours away in the Chicago area. He had a battery of tests including a “Cadillac” allergy panel (in other words the most thorough and expensive), blood work, and a test for the genes associated with celiac disease. Lo and behold, he had both of the genetic markers that most commonly indicate celiac disease, as well as positive antibodies, meaning he was still reacting to gluten from some source or other.

I wasn’t surprised at the diagnosis, but he was floored. It took a long time for him to process this result because of all the false-negative tests for celiac disease and other conditions over the years. A definitive diagnosis was something new and enlightening. The main changes we then made were to insist on carefulness with gluten in restaurants and for him to stop pinching off a tiny corner of (wheat) Communion cracker on Sundays. He was amazed when he started feeling so much better on Sunday afternoons. That was one of the benchmark experiences that showed him how careful he needed to be with gluten.

My Story: Bargaining Loop

My part of the story includes the classic stages of loss and grieving that I went through at each of the diet changes. Denial, anger, bargaining, depression (or rather being cranky and bummed out), and finally acceptance (usually grudging at first). I haven’t been a saint by any means. I would get pretty annoyed when he would tell me the latest food he wanted me to stop using. Then I’d feel guilty because I’m not the one with the disease and all the physical pain and diet restrictions.

There were other foods he cut back on or stopped eating: mushrooms, nightshades (tomatoes, potatoes, peppers—they can cause inflammation and worsen psoriasis, and they give him indigestion), and casein (a protein in milk; meaning no butter, cream, or even lactose-free milk; the dietitian diagnosed the allergy). Gluten is non-negotiable and casein is mostly non-negotiable, but I still try bargaining about others, which of course is annoying for him. “Do you think you could eat sloppy joes made with ketchup and onion when our friends come over?” “Would you mind if I put a little Worcestershire sauce in this dip?” And I still wish he could have my famous tiramisu.

Lately we’ve cut out grains, including rice, which give him symptoms. Even non-gluten grains can cause cross-reactivity, which means the immune system recognizes other proteins as if they were gluten. For this reason many people with celiac disease eat a “Paleo” diet. (Paleo is short for Paleolithic—a newly popular caveman-like diet with no grains or dairy.) So now we’re at another crossroads, and I’ve already started bargaining. (“Well, maybe I could make bread or desserts with rice flour just when we’re having people over?”)

Upsides, Downsides, and More Upsides

All of these changes have made me much more interested in food and cooking than I ever would have been. From the time we were vegan and then vegetarian for a few years in the 1990s, I’ve wanted to serve restricted-diet foods that I enjoy eating and that guests would never know anything was missing from. It’s led to a lot of kitchen time and recipe development, and to writing about food. I do often really like what I make and want to share with others who might benefit from my hard work and experience.

A big downside is the social aspect. It’s hard to know what we miss out on because of people feeling it’s too hard to deal with the limitations. Often when we entertain I wind up doing a lot more food prep than I would have. For example if the hosts are planning a recipe that has broth, I’ll deliver some homemade broth with no onion, or I bring gluten-free bread for them to serve. It’s extra trouble, but I want a safe menu and a restful night for my husband.

The social upside is the care and concern of those loved ones who do take the time and trouble—how much we appreciate their going the extra mile! And I’m grateful about the foods he can eat that some cannot: meats and poultry (we have great sources of organic and grass-fed here in Amish country in east central Iowa), fish, eggs, nuts, and of course a bounty of beautiful fruits and vegetables.

Going Forward With Hope

Now that his diet is better managed, we can plan an event or vacation and be pretty sure he won’t be sick and have to opt out. He appreciates that he’s not up nights with digestive upset. The psoriasis is still a concern, but the Paleo diet seems to be reducing it. Also, light therapy has been helping.

So, little by little we’re learning how to keep him healthy and reaction-free. We’re finding out more all the time about what he can and can’t eat, and as our culture becomes more aware of food intolerances, the social aspects are getting more manageable.

His celiac disease wasn’t diagnosed until his late 50s, so there’s been a large part of a lifetime of damage because of it. Healing takes time, and perhaps we can add back in some of the foods as he heals. (See, I’m still bargaining!)

Takeaway Message: Please Heed!

I hope my story will inspire others to ask for tests from a reliable health professional if there are problems with digestion or other unexplained symptoms of any type, especially autoimmune. (Celiac disease doesn’t always have digestive symptoms.) The sooner this condition is detected, often the less damage and the fewer additional dietary restrictions and health complications.

It’s estimated that one in 133 people have Celiac disease. Do you have a story of how it’s touched your life?

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5 Responses to “My experience with celiac disease in the house”

  1. Kim Walters says:

    That’s an amazing story! Thanks so much for sharing. Have you experimented with coconut flour yet? I need to do more of that with our two teen boys on the autism spectrum though we seem to fare okay with gluten free (15 years now!).

    • Eileen Beran says:

      Kim, Thanks for commenting! I’m just beginning to use coconut flour. I learned immediately that a little goes a long way. I do like it and want to learn more about it and experiment more with it. –Eileen

  2. Miachel says:

    What an inspiring post. Thanks for sharing, Eileen!

    I especially appreciate your positive perspective on how to deal with it, and how it’s brought more love for food in your life!

    Miachel

    • Eileen Beran says:

      Thank you for your comment, Miachel. It’s always good to hear from you! I know you love food too–it seems like it’s your way of connecting with people and connecting people with one another.

  3. Jennie says:

    Thank you for sharing your story!

    I am not affected by it, but I have learned a lot about it from a friend in college who was diagnosed with it.


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