Healthy gluten-free diet requires careful, consistent nutritional follow-up
From diagnosis on, celiac disease patients benefit from monitoring of vitamins and minerals in their diets
Charles Dicken’s famous line, “It was the best of times, it was the worst of times” could apply to celiac disease based on a study reviewing the evidence about nutrition and the gluten-free diet.
While the gluten-free diet is the only treatment for celiac disease and often helps resolve symptoms and intestinal damage, there are a number of nutritional and lifestyle drawbacks outlined by researchers from McMaster University in Canada and Monash University in Australia in the paper, “Nutrition Assessment and Management in Celiac Disease,” published in the special celiac disease edition of the American Gastroenterological Association journal Gastroenterology.
Like all restrictive diets, the gluten-free diet can have nutritional consequences, especially because those with celiac disease have to follow the diet for the rest of their lives, the study says. It is not a lifestyle choice.
“It is well known the gluten-free diet can be nutritionally inadequate and is frequently associated with vitamin and mineral deficiencies,” the authors wrote. “It is also associated with excessive sugar and fat intake, particularly when gluten-free substitutes are consumed.”
Follow-up nutrition monitoring
The study proposes a schedule for monitoring nutrition that begins at diagnosis and continues for the first year and beyond. A multi-disciplinary approach that involves a physician and dietitian is recommended.
At diagnosis, patients should have measurements of:
- Celiac disease blood tests, including tissue transglutaminase (TTG) and/or deamidated gliadin peptides and/or endomysial antibodies.
- Complete blood count.
- Vitamins and mineral levels, including iron, ferritin, folate, vitamins B12, A, C, D and E, chromium, copper, selenium and zinc.
- Thyroid function and liver enzymes.
- Bone density.
- Weight.
- Symptoms.
Additionally, initial follow up should include a physical exam; gluten-free diet education and evaluation of adherence and diet quality; education about how gluten immunogenic peptide (GIP) stool and urine tests can be used to evaluate adherence to the gluten free diet; recommendations for medications and supplements, if needed; recommendations for social support and celiac disease organization membership; and referral to a social worker, if needed.
At four to six months after diagnosis, patients should have a repeat of:
Celiac disease antibodies.
- Complete blood count.
- Vitamin and mineral levels.
- Thyroid function and liver enzymes.
- Weight.
- Symptoms.
A repeated physical exam, review of gluten-free diet adherence and quality of the diet, and recommendations regarding medications and supplements, if needed, and referral to a social worker, if needed, should also be part of follow-up at this point.
One year after diagnosis, the same follow-up that occurred at four to six months should be repeated. Additional follow-up should occur every year after that.
Keeping to the diet
The gluten-free diet can be challenging to follow. Celiac disease patients must understand the diet basics, know how to read labels to determine which foods are gluten-free, be knowledgeable about potential sources of gluten, and know how to avoid cross-contact from gluten-containing items, particularly when dining out.
However, it can be difficult for dietitians to assess how well someone is following the diet because patients’ recall of what they ate can be inaccurate or incomplete.
New ways to keep track of the gluten-free diet, including smart phone applications can be helpful, the study says, because they allow those with celiac disease to keep accurate records through text, photos, voice and bar codes on food packages.
When goals for achieving good adherence to the diet are set, cultural and socioeconomic factors, work schedules, and food access and affordability are among the things that need to be considered.
The expectation is that celiac disease blood tests that measure antibodies to gluten will decrease after the first year on the gluten-free diet, often becoming undetectable. But this may happen more slowly in those diagnosed in late adulthood.
If symptoms continue despite the gluten-free diet, several possibilities need to be considered. First, how well the diet is being followed? Second, is the diagnosis accurate? Other conditions, such as food intolerance, irritable bowel syndrome (IBS), microscopic colitis and pancreatic insufficiency should be investigated as alternative causes.
Gluten-free diet challenges
The rate of adherence to the gluten-free diet is reported to be 42% to 91%, the review study says.
One of the challenges of following the gluten-free diet is determining exactly what constitutes a gluten- free food, particularly among processed and packaged products that are not certified or labeled gluten-free.
Countries around the world have set different standards for what can be labeled gluten-free, each trying to strike a balance between the severity of restricting food and the level of gluten that is considered safe for those with celiac disease, the review study says. In North America and Europe, food labeled gluten-free must have less than 20 parts per million (ppm) of gluten. In other countries it varies from 10 ppm to zero detectable gluten to no labeling standard.
Processed gluten-free products are often higher in fat, sugar and sodium as these ingredients are added to mimic the taste and texture of foods that contain gluten. These products also contain little fiber and less vitamins and minerals than food that contain gluten. They are also typically more expensive than their gluten-containing counterparts.
Additionally, celiac disease patients often report a lower quality of life and a high burden of disease due to the social restrictions of following the gluten-free diet. This burden may impact psychological health, including some evidence of an association between celiac disease and eating disorders, the study says. Hypervigilance about the gluten-free diet can also result from worry about inadvertently consuming gluten.
A balanced message from health care providers that avoids fearmongering about accidental gluten consumption, for example from cross contact when dining out, is the cornerstone of minimizing food-related anxiety, the review study found.
Nutrition lacking in the gluten-free diet
Up to 88% of adults newly diagnosed with celiac disease have decreased levels of vitamins and minerals, the review study found. This nutritional deficiency results from the damaged intestinal lining not properly absorbing vitamins and minerals.
Levels of some nutrients return to normal with the gluten-free diet, such as vitamins B12 and K, but others become even more reduced on the diet, such folate and vitamin B6. Others only partially recover, including vitamins A and D and iron, zinc and copper.
Nutritional deficiencies are associated with symptoms outside the gastrointestinal system. These include brittle nails, anorexia, pallor, headaches, restless legs, fatigue, infertility, bone fractures and neurologic symptoms.
Lack of fortification, which is the addition of vitamins and minerals to food products, in gluten-free foods can lead to nutritional deficiencies. Also, nutrients typically absorbed in the area of the intestine most damaged by celiac disease can be lacking.
Studies in children on the gluten-free diet have found low iron, calcium, folate, zinc, magnesium, and vitamins D, B12 and B6.
The changing picture of celiac disease
In the past, celiac disease was thought to only affect children who were often malnourished and underweight. But a recent review of 45 studies found that celiac disease affects all ages, and most patients had a normal body mass index (BMI) at diagnosis. Additionally, the studies showed increasing rates of those with celiac disease being overweight and obese.
Up to 31% of people with celiac disease are overweight and up to 13% are obese, recent evidence shows. BMI increases on the gluten-free diet, with 16% of patients going from normal BMI at diagnosis to overweight and more than 20% going from normal to obese, the review study says.
The reasons for this change aren’t clear but could be linked to improved absorption of nutrients after the intestine has healed on the gluten-free diet. Decreased metabolism, the way the body converts food to energy, is another potential cause.
Discussions that address the potential for weight gain on the gluten-free diet need to be included in follow-up care to help prevent complications such as fatty liver disease, heart disease and diabetes associated with obesity and celiac disease, the review authors wrote.
Dietitians’ role
Not knowing enough about the gluten-free diet, difficulties related to shopping for gluten-free food, challenges eating safely in restaurants, and low motivation to follow the diet are the biggest barriers to following the diet sufficiently, the review study says.
Dietitians play a key role in overcoming these barriers, specifically by encouraging patients to find a balance between enjoyment of food and taking steps to ensure the safety of food.
Resources such as restaurant cards, gluten-free meal plans, ingredient pocket dictionaries and mobile applications related to gluten-free products, and restaurants with gluten-free options can help patients manage the demands of the diet.
A dietary history can help determine whether someone with celiac disease has a balanced diet that meets nutritional recommendation for healthy eating.
Nutritional counseling can also prepare celiac disease patients for some of the changes they may find on the gluten-free diet, especially at the start, such as constipation related to lower fiber levels.
Reduced bone density and osteoporosis can also be complications of celiac disease. The best defense is following the gluten-free diet to reduce inflammation, the study says.
When you have celiac disease, the gluten-free diet is your only defense, but it is challenging to get all the nutrients you need. Careful and consistent follow-up care from diagnosis on is the best way to assure that the gluten-free diet is also a healthy diet.
Support groups
There are a number of support groups for caregivers and patients with celiac disease. Reach out to your gastroenterologist, dietitian, local hospital or community center for more details.
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Written by
Amy Ratner
Director of Scientific Affairs
Beyond Celiac
