A Double Diagnosis: Celiac Disease and Diabetes
Gregg and Shari Friedman sit around the kitchen table. In front of them is a large plastic coffee container, big enough to make 270 cups. But the bright blue jug is filled to the rim, not with coffee, but with two months’ worth of needles used by their 12-year-old daughter Julia, who has type 1 diabetes and celiac disease, both autoimmune diseases that require constant vigilance.
“Do you want to know what a day in the life of Julia is like?” Shari asks, pulling out a kit full of supplies. Julia needs to prick her finger to test her blood glucose level five to ten times a day – when she wakes up, before she eats any food and at bedtime. She also must test her glucose before, during and after strenuous activity like soccer, basketball and cross-country practices. This is necessary in order to maintain Julia’s blood sugar levels within a normal range. Extreme highs and lows can be dangerous to both her immediate and future health.
Julia is not alone. About 2.5 million people in the United States have type 1 diabetes and 10 percent of them also have celiac disease. By comparison, about 1 percent of the general population has celiac. The two diagnoses pack a double whammy: Kids must be constantly on guard, vigilantly controlling their blood sugar while also avoiding any trace of gluten.
“When it comes to eating, most people live their lives uninterrupted. But when you’re a diabetic, your life is interrupted. When you’re a celiac and a diabetic, your life is interrupted two times,” Shari says. “You have to stop and say, ‘What am I eating? Is it safe for me to eat? Does it have any gluten in it? Has it been prepared properly without cross-contamination?’ Then you have to say, ‘OK, I’ve identified the food source. How many carbohydrates does it have? How much am I going to eat right now? Am I going to do any physical activity? OK, let me calculate in my head what’s my best guess for the proper insulin dose, given all the things I just mentioned.’”
It’s been a rough road for Julia and a roller coaster for her parents. When Julia was 8, she developed a persistent raw skin rash on her hands. She was constantly tired, wasn’t gaining weight and exhibited anxiety. Her behavior was erratic, with her emotions inexplicably shifting from sad to mad and tears to anger in the blink of an eye. The Friedmans consulted a series of doctors, including their pediatrician, an ear-nose-throat specialist, a cardiologist, a dermatologist, an allergist and a psychologist but found no resolution.
When Julia was 10, her symptoms escalated. By December 2009, she had lost more than ten pounds, had dark circles under her eyes and was constantly hungry and thirsty. Four months earlier, her blood glucose had been normal but her pediatrician ordered another series of blood tests. This time, he placed an urgent phone call to Shari with the results: Julia’s blood glucose level was over 650 (the normal range for children is 80 to 120). His instructions: Pull your daughter out of school immediately and take her to the emergency room.
Julia wasn’t diagnosed with celiac until three months later, in March 2010, when she was told she had soaring tTG antibodies, positive for celiac disease. After one week on a gluten-free diet, Julia’s troubling skin rash was completely gone and her erratic behavior started to improve. Her parents wonder: If Julia had been diagnosed with celiac disease earlier, would the diabetes never have developed?
Celiac and type 1 diabetes are both autoimmune diseases, chronic conditions in which the body’s immune system attacks the very organs it was designed to protect. The two diseases have a genetic link, sharing some genes and environmental factors that may cause the immune system to attack the villi in the small intestine and beta cells in the pancreas.
People with type 1 diabetes are prone to other autoimmune diseases as well, most commonly hypothyroidism, but also less commonly hyperthyroidism, Addison’s disease, vitamin B12 deficiency, vitiligo (spotty loss of skin pigment) and alopecia (hair loss), among others.
An Italian study showed that the prevalence of other autoimmune disorders in patients with celiac disease is related to the duration of exposure to gluten. The older patients were when they were diagnosed with celiac disease, the greater their chances of developing other autoimmune disorders.
While onset of type 1 diabetes can occur at any age, it peaks during the middle childhood ages, from age 6 to 18, says Louis Philipson, MD, PhD, professor in the Departments of Medicine and Pediatrics at the University of Chicago and director of the Kovler Diabetes Center.
In patients with a double diagnosis, often type 1 diabetes is diagnosed first.
“It can be much more subtle to diagnose celiac disease than to diagnose type 1 diabetes. Diabetes, at least in a child, is not usually subtle,” Philipson says. “In children, onset is often very rapid, over a week or a few days, whereas in older kids and adults, the onset can be over months.”
Diabetes symptoms include increased thirst, frequent urination, severe hunger urges and extreme fatigue. In the beginning of the onset period, these symptoms can pass unnoticed by parents until they become severe.
Celiac symptoms can be harder to pin down. Classic childhood symptoms include diarrhea, abdominal pain, bloating, vomiting and poor growth but celiac can also be silent, without evident symptoms. In a person with diabetes, erratic blood sugars that are hard to control can be a symptom of undiagnosed celiac disease.
Although type 1 diabetes is often diagnosed first, celiac disease may, in fact, be present first. Indeed, new studies suggest that inflammation and intestinal changes associated with celiac disease might promote autoimmunity, opening the way to the development of autoimmune diseases like type 1 diabetes. Intestinal permeability (or “leaky gut”) in celiac disease patients may trigger antigens to enter the bloodstream and lead to other autoimmune conditions.
“Could the development of celiac disease constitute an additional risk for developing type 1 diabetes, meaning that it would induce changes that put people more at risk for developing type 1 diabetes? Today we don’t have a definitive answer. But there are a number of observations that suggest that this may be the case,” says Bana Jabri, MD, PhD, a celiac disease researcher and professor of medicine, pathology and pediatrics at the University of Chicago Medical Center. “Some unpublished studies have suggested that changes in the gut and the microbiome may be associated with increasing autoimmunity. These studies have mainly been done in mice,” she says, stressing the critical need for more research, particularly studies in humans, to confirm these results.
“We need more studies, in humans, on the gut of type 1 diabetes patients to see if there’s evidence of inflammation. If this were proven, it would open the door for developing therapies in the gut, so that one could prevent the development of type 1 diabetes in at-risk patients.”
When people have diabetes and undiagnosed celiac disease, they may have fluctuations in blood sugar levels due to malabsorption issues. Their blood sugar may be difficult to control and they may have more episodes of hypoglycemia (low blood sugar). When they go on a gluten-free diet, their intestines heal, nutrients are absorbed better and blood sugars rise. Consequently, insulin doses need to be adjusted.
Many gluten-free foods have smaller serving sizes that are denser in carbohydrates and lower in fiber than their wheat-based counterparts. Also, many gluten-free foods use simple starches like white rice flour, tapioca starch and potato starch that can cause blood glucose to spike. So people with diabetes need to relearn how to count their carbs. They also need to check their blood sugar more often to find out how gluten-free foods affect their blood glucose, so they can adjust insulin timing and dosing. “Managing type 1 diabetes means juggling a lot of balls in the air at once. With a celiac diagnosis, you take away gluten and that changes the way sugar and food are being absorbed. So you have to adjust the insulin timing and dosing and rethink it again,” Philipson says.
The American Diabetes Association recommends that patients with type 1 diabetes be screened for celiac disease at onset of diabetes or if they exhibit gastrointestinal symptoms. Some endocrinologists screen patients for celiac more often—at diabetes onset, once a year for several years, and then every two to three years—since celiac can develop later in life. Diabetes patients are also periodically screened for thyroid and adrenal disease.
People with type 1 diabetes can eat all foods, including those with sugar. But they need to take insulin to “cover” the food, since their pancreas does not produce insulin. (Of course, they are warned to eat sweets in moderation in order to avoid weight gain and cholesterol issues.)
This means that type 1 kids can have their cake and eat it, too. But what happens when they are suddenly told that their cake must be strictly gluten-free?
“For children, it’s certainly challenging to be in a situation where they can’t eat what the other children are eating,” Philipson says. “With diabetes, you can have a piece of cake. You just have to take more insulin. With celiac, there’s no choice. You just can’t have that stuff.”
The emotional toll of type 1 diabetes is significant, he says. At the Kovler Diabetes Center, a psychologist is on staff. All new patients are offered the chance to meet with the psychologist on the spot, without having to wait for an appointment. Across the country, however, only a minority of patients who need the psychosocial care actually get it, Philipson says, and it’s often not covered adequately by health insurance.
Some kids with diabetes and celiac rebel, engaging in self-destructive behavior. Siblings are dramatically affected. There’s a much higher rate of divorce because of the stress of diabetes management and the blame game that ensues when something goes wrong.
“The key is for families to try to be honest and upfront and recognize and validate their feelings even when they’re difficult. It’s okay to be angry. If we have a little cry now and then, that’s okay. Nobody signs up to have two chronic conditions—but there it is and it’s not anyone’s fault,” Philipson says.
Two years into the double diagnosis, the Friedman family still feels the challenges of managing Julia’s health.
“The hardest thing for me is that my daughter is 12 years old with an enormous responsibility every day she wakes up,” Shari says. “As a tween going into the teen years, developmentally that age is free and spontaneous. If my daughter does what kids her age do, it will kill her. So we have to empower Julia to be a tween and teenager and still keep herself safe.”
Shari says the process is also challenging for Julia. “Most people don’t see it because Julia has such a great spirit and she’s so full of life and energy. But this is a lot for a kid to deal with. As a parent, watching it, that’s the hardest thing….You feel helpless.”
One difficult aspect of celiac disease, says Julia, is that she can’t enjoy the same foods as her friends. Even if a restaurant has some gluten-free options, there are many tempting foods she can’t have. The diabetes is challenging because she has to constantly check her blood sugar, give herself shots and miss classroom time.
“You feel like no one else is going through what you’re going through. It’s kind of depressing at times,” Julia admits. It helps her to stay busy with soccer, basketball and cross-country. “When you’re preoccupied, you don’t think about it,” she says. It also helps to have caring friends who ask how she’s feeling and who accompany her when she leaves the classroom to check her blood sugar.
The road is getting smoother for the Friedman family.
“The first year that we were dealing with a double diagnosis, it was very, very stressful, not just for our daughter but for us,” Gregg says. “We’re much calmer now. It took us a while to be able to accept the diagnosis and figure out how to deal with it and how to help Julia without seeming overwhelmed ourselves.”
“We’re lucky in a number of regards,” he says. “There are a lot more food choices and options now than there ever were before. Also, we have a bright, articulate child who can understand the enormity of all this and with time has learned to deal with everything. She’s become very good at expressing herself if she’s not feeling well or if there’s something that’s not right—not just to us but also to others. We’re also fortunate that her core group of friends is very understanding and supportive.”
Support groups can also help families connect with others, says Laurie Higgins, RD, LDN, a certified diabetes educator at the Joslin Diabetes Center, an affiliate of Harvard Medical School.
“I always tell families that support groups are not about sitting around in a circle and holding hands. A local support group can be the best way for them to get information about which grocery stores, restaurants and bakeries cater to the gluten-free community,” says Higgins, who helps families with diabetes transition to the gluten-free diet.
Although it can be challenging to go gluten free, newly diagnosed families shouldn’t delay, advises Amy Hess Fischl, RD, LDN, a certified diabetes educator with the University of Chicago Kovler Diabetes Center. “It’s not advisable to transition slowly. Gastroenterologists recommend eliminating gluten as soon as a positive biopsy is confirmed because gluten is toxic to the system for those with celiac disease. The longer a celiac stays on a gluten-containing diet, the more damage they can do to their bodies. If kids are diagnosed with celiac and remain on gluten, it can affect their growth and blood glucose control, among other problems.”
Fischl stresses the importance of healthy food choices. Consuming excess carbs and calories makes blood sugars more difficult to control, which could lead to weight gain, cholesterol issues and long-term complications.
Chicagoan Stacey Wolin encourages a healthy diet for her daughter Brianna, 17, who has type 1 diabetes and celiac disease. She steers her daughter away from consuming too many carb-heavy gluten-free foods at once. At times, it’s been challenging to achieve a balance between what Brianna may crave and what is healthy.
“As a diabetic, your number one enemy is carbs. But then with the additional diagnosis of celiac disease, the entire focus is the search for tasty gluten-free bread, pasta, cereal and cookies,” Wolin says. Many gluten-free foods “have lousy carbs. They are not very nutritious and they have a high glycemic index so they raise blood sugar quickly. You need to ask, ‘Is this gluten-free food healthy for me? Is it nutritious and is it good for me as a diabetic?’”
Wolin has focused on a positive “can do” approach, even if it means hiding her own doubts and fears from her daughter. “I’ve taught Brianna that it is all very manageable,” she says. “You have to instill confidence and independence at the same time.”
Brianna took that leap to independence when, two summers ago at age 15, she embarked on a six-week cross-country social action trip for teens. Brianna kept a cooler on the tour bus stocked with yogurt, sliced turkey, cheese sticks and baked potato chips. Her mother initially tried calling ahead to find gluten-free restaurants in each city. But when the tour’s plans changed too often, Brianna ended up simply taking a bag of gluten-free food into restaurants with her.
“It was the first time she sat in a restaurant and didn’t feel sad,” Wolin says. “It was just timing. She was ready to say, ‘It’s okay if I’m not eating what my friends are eating.’ She had her gluten-free granola, her yogurt, mozzarella cheese sticks and hard-boiled eggs and was fine.”
Brianna was able to find that balance on her own, as do many kids with type 1 diabetes and celiac disease.
“It was that trip that convinced her that nothing could stop her. She could find food that she knew was safe for her and not worry that it was different,” Wolin says. “I think she’s in a good place now. Now I feel like she can do it on her own.”