The Surprise and Relief of a Celiac Disease Diagnosis

For more than a decade — and possibly longer, but a decade is about all I remember — I have been diagnosed as anemic. My hematocrit (red blood cell count) is typically very low: 26 when it should be in the range of 35 to 50. My recent ferritin count was three; it should be at least 12.

I have not ignored the diagnosis. Although its underlying cause was never confidently pin-pointed, I have been tested for anemia disorders like sickle cell (negative), taken oral iron supplements, received iron via intravenous infusions, had stool samples checked for occult blood, and seen a gynecologist about my menstrual patterns. Once, after a 10-week cycle of weekly iron infusions, my hematocrit briefly climbed to 34 before dipping again. A specialist finally concluded that my three pregnancies, total of 36 months of lactation, and years of menstruation had depleted me. “Keep taking the iron supplements,” he advised. I have been more or less compliant.

With a ferritin count of three, both my primary care physician and endocrinologist for my diabetes, who are former colleagues and therefore communicate (yay!) about my health, implored me recently to go back to the hematologist. “You’ll feel better,” said Dr. A. Grudgingly, I called the clinic and made an appointment. By happenstance, the doctor I had seen in the past was unavailable and so they scheduled me to see his colleague.

The visit lasted two hours. When does that ever happen in today’s health care world? Blood was taken. A physical exam was conducted. My family history of diseases and countries of origin was carefully elicited and recorded. The hematologist, a woman, told me she was very worried and determined to get to the bottom of this. “It has gone on too long, and you have never regained your iron stores.” She scheduled an endoscopy and colonoscopy. “We have to rule out an ulcer, intestinal bleeding, and, let’s face it, cancer.”

It sounds scary, but I wasn’t scared. I felt carried along by her steady authority coupled with her gentle concern. She helped me worry about myself sufficiently to take greater action than I had in the past.

A week ago Monday, fully prepped (I should say fully emptied), I showed up for my endoscopy/colonoscopy appointment and met with the doctor. The nurses had already been lovely. This doctor seemed both quiet and kind; his smile was sincere, reaching the eyes. After introducing himself, he surprised me by saying, “I already know the diagnosis. I’ve looked at your blood test results from last week, and the answer is clear. You have celiac disease.” He explained that the hematologist had ordered tests for the markers of celiac, and the results were strongly positive.

Instantly, I was relieved. Over the weekend, I had been anticipating an ulcer diagnosis — my mind, thankfully, would not let me ruminate on the scarier cancer. I even Googled “ulcer” and studied the symptoms and treatment. As the doctor now explained celiac — an immune response to the proteins in wheat, rye, oats, and barley that affects the intestines — I thought to myself, “Okay, this I can deal with. Dietary restrictions? Bring them on. I’m already good at this.” I’ve had Type 1 diabetes for more than 20 years.

He continued to explain both procedures and indicated that he would be looking for physical evidence to corroborate the blood test and also to see the extent of the scarring. (I only know a little bit about this so far, but apparently the immune response damages the villi that absorb nutrients. This is considered “scarring.”)

Whatever sedative they gave me via the IV made me unaware of both procedures and forgetful of them. After they were over and I was alert again, the doctor showed me photographs of my duodenum, and told me that, because of my “efficient intestines,” the damage was both localized there and was reversible. “If you avoid gluten, the villi will come back. Soon you will feel better.”

The funny thing about this is that I haven’t ever felt what I would characterize as “bad.” In fact, when doctors, seeing my blood test results, have asked me if I am fatigued, I have replied, “Well, aren’t we all?” I have always imagined myself as simply part of that group of modern-day people who are workers on top of a lot of other responsibilities. I also have not experienced any of the digestive distress that others with celiac reportedly experience. Dr. F., the hematologist I saw a couple of weeks ago who was determined to get to the bottom of this, had said to me, “You must be tired. I’ve looked at your red blood cells, and they are so small.”

Ten days ago, I knew nothing about celiac disease. While I am relieved to have both a diagnosis and a workable way forward — white bread, I can give you up if I have to! — I am surprised because it was not on my radar, and it had not turned up in any of my Google searches for “iron deficient anemia causes.” It’s all new to me.

So far, I’ve been approaching it in a do-it-yourself way. Next week I’ll meet with a nutritionist for advice and in a couple of weeks with the hematologist again. In the meantime, with my husband and children’s help, I’ve been avoiding breads and pasta and gravitating toward potatoes and brown rice for side dishes at meals. Rice cakes and peanut butter make a great sandwich. I’ve given up my favorite oat-based cereals and looked for gluten-free ones at the supermarket. I’m doubling my portions of fruit- and vegetable-based salads. I can’t grab granola bars for a snack anymore, so it’s sesame rice crackers and cottage cheese instead.

This all seems very manageable at home, where things are in my control and I can put my culinary creativity to work. It has been challenging outside of the house, at my parents’ house for the holiday weekend and at lunch meetings at work, where we are typically served sandwiches or pizza.

I haven’t really figured it all out yet. I haven’t really figured much out yet. I am better at avoiding certain foods than I am at incorporating new ones.

This reminds me, and it may remind readers with T1 or T2 diabetes, of my first weeks after learning I was T1D. There seems to be food everywhere, but not for me.

I am hungry. I don’t know enough yet. I keep telling myself: this is a transition time.

Jane Kokernak

Jane Kokernak teaches in Northeastern University’s College of Computer and Information Science as communications specialist, working with graduate students and faculty on writing and speaking to different audiences. She lives with her family and dog near Boston. In 1992, as an adult, she was diagnosed with Type 1 diabetes; in 2003, she switched from multiple daily injections to an insulin pump and has stayed with it. A contributing writer to ASweetLife since 2010, she is especially interested in how having a chronic illness affects self identity and perceptions of health.

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Jane Kokernak

Jane Kokernak teaches in Northeastern University’s College of Computer and Information Science as communications specialist, working with graduate students and faculty on writing and speaking to different audiences. She lives with her family and dog near Boston. In 1992, as an adult, she was diagnosed with Type 1 diabetes; in 2003, she switched from multiple daily injections to an insulin pump and has stayed with it. A contributing writer to ASweetLife since 2010, she is especially interested in how having a chronic illness affects self identity and perceptions of health.