Celiac disease affects 1 in 100 people worldwide. It is also commonly misdiagnosed or undiagnosed, with an estimated 2 million Americans living with celiac disease who don’t know they have it.
Celiac disease is a condition where the body has an autoimmune reaction to the ingestion of gluten, a protein found in wheat, wheat products, rye, barley, and triticale. When people with celiac disease regularly consume products with gluten, they can have several serious, chronic health problems.
It is important for health coaches to know the signs of celiac disease and how to support clients in living a lifestyle that will help them not only follow a gluten-free diet they enjoy but also manage the effects of the disease on their life.
AFPA has developed this guide for health and wellness coaches to gain a better understanding of celiac disease and to provide you with concrete strategies for supporting clients with celiac disease.
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What Is Celiac Disease?
Before we go into detail about what celiac disease is, it is important to be clear about what it is not.
So what is celiac disease? It is an inherited autoimmune disease where the immune system reacts to gluten as if it were pathogenic material, causing damage to the body. When a person with celiac disease ingests gluten, the body’s immune system mistakenly causes damage to the villi, or small, brush-like cells, of the small intestine, which are also the site of most nutrient absorption.
It is important to note that for most people, gluten is safe and healthy. While some may claim that gluten causes an inflammatory reaction in people in general (with or without celiac disease), research doesn’t support generalized clinical intervention strategies that focus on gluten avoidance in all people.
Celiac disease is not a wheat allergy, a gluten intolerance, or a gluten sensitivity.
Gluten sensitivity, also called non-celiac gluten sensitivity (NCGS) or gluten intolerance, is likely an immune-mediated disease that activates an immune response. However, there is still limited knowledge about how NCGS affects the body and, unlike with celiac disease, there is still a lack of validated biomarkers, which makes it difficult to study.
A wheat allergy is an immune response to other components in wheat that aren’t necessarily gluten.
Common Symptoms of Celiac Disease
Celiac disease directly affects the small intestine, so most of the symptoms are digestive or related to poor nutrient absorption.
The most common symptoms of celiac disease include:
- Abdominal pain
- Itchy rash called dermatitis herpetiformis, an itchy, blistery rash that usually occurs on the elbows, knees, and buttocks
- Unexpected weight loss
- Difficulty getting pregnant
- Tingling and numbness in the hands and feet
- Poor coordination and balance
- Swelling of the hands, feet, arms, and legs
In children and people with severe digestive symptoms from celiac disease, it is important to look for the signs of malnutrition. Adults with malnutrition will likely feel fatigued, have trouble concentrating, lose weight unexpectedly, and have scaly skin, among others.
Malnutrition in childhood is especially dangerous because children are in a period of growth and development. A child with malnutrition may have delayed physical growth, both in terms of height and weight; delayed cognitive development; and delayed puberty.
Celiac disease can only be diagnosed with a blood test and an intestinal biopsy.
Causes of Celiac Disease
Celiac disease is one of the best understood autoimmune diseases. About 95% of people with celiac disease have the HLA-DQ2 antigen. The other 5% have the HLA-DQ8 antigen. For celiac disease to develop, their bodies must express these molecules. However, not all people with these antigens develop celiac disease.
Very simply, the cause of celiac disease is the presence of the antigens that cause an autoimmune response.
Current Treatment of Celiac Disease
Most people diagnosed with celiac disease adopt a gluten-free diet. Adopting a gluten-free diet is effective and may even protect against the development of other conditions.
Some other therapies that are being developed include:
- Jamming or blocking of the HLA-DQ2
- Inhibition of TG2
- Vaccines that help stimulate glucose tolerance
If someone has had undiagnosed celiac disease or has not adhered to a gluten-free diet, in addition to transitioning into a full gluten-free diet, there is a period where the intestine of a person with celiac disease will need to repair itself.
In general, the older a person is and the longer they have gone with undiagnosed or unregulated celiac disease, the longer it will take for the intestine to repair itself. Depending on these factors, the time it takes for a person’s intestine to repair itself could be between two months to two years.
Conditions Associated with Celiac Disease
When you have one autoimmune condition, your risk of developing another autoimmune condition increases. However, those who followed a strict gluten-free diet were less likely to develop a second autoimmune disease, as a gluten-free diet seems to have a protective effect.
In general, however, there is plenty of data on the associated risk of celiac disease and other conditions that are important to be aware of, including the following:
- Autoimmune hepatitis
- Autoimmune Thyroid Disease
- Chronic fatigue syndrome
- Dermatitis Herpetiformis
- Down syndrome
- Gluten ataxia
- Idiopathic Dilated Cardiomyopathy
- Juvenile Idiopathic Arthritis
- Liver Disease
- Lymphocytic Colitis
- Microscopic Colitis
- Peripheral Neuropathy
- Primary Biliary Cirrhosis
- Sjögren’s Syndrome
- Type 1 Diabetes
- Unexplained infertility
Key Facts about Celiac Disease
Here are some important facts about celiac disease:
- Celiac disease is a chronic autoimmune disease.
- 1 in 100 people have celiac disease.
- 80% of Americans with celiac disease are not diagnosed.
- People with a first-degree relative with celiac disease have a 1 in 10 chance of developing the disease.
- Celiac disease is one of the most common autoimmune diseases that affect children.
- While celiac disease damages the intestines, primarily, it affects every organ in the body.
- A lifelong gluten-free diet is the only effective treatment of celiac disease.
- People with celiac disease are more at risk of developing nutrient deficiencies.
What Might a Celiac Disease Diagnosis Mean for Your Client?
As with all conditions, no person experiences celiac disease in exactly the same way, and a diagnosis affects people’s lives differently.
Celiac disease has a primary impact on the immune system and the digestive system. As an autoimmune disease, the immune system attacks the villi in the small intestine when a person with the condition ingests foods with gluten or traces of gluten. As a result, the intestinal villi atrophy get inflamed, and thus cannot absorb nutrients and liquids as healthy villi do.
The immediate effects can be painful cramps in the abdominal area, diarrhea, and vomiting. Over time, if the disease goes undiagnosed or untreated, it can lead to severe intestinal damage, malnutrition, brain damage, bone damage, and an increased risk of several chronic diseases, including type 2 diabetes and multiple sclerosis.
However, it is important to note that not everyone experiences these symptoms, and some studies have identified populations with “asymptomatic” celiac disease. In these cases, they may present symptoms, but they are not the usual symptoms expected of celiac disease, so they go unnoticed or are not associated with celiac disease.
Emotional and Psychological Impact
While celiac disease is a condition that affects the body, it also may have a significant impact on an individual’s psychological health.
People with undiagnosed or untreated celiac disease tend to have a lower quality of life, and they are also at risk of developing anxiety, depression, low mood, and difficulty concentrating and learning.
In the section about how to help clients with celiac disease manage emotional health issues, we go into more detail about the research behind the psychological impact of celic disease.
Food is a vital element of human culture. Through food, we create a human connection and express who we are and what is important to us. When we have to make abrupt dietary changes for medical reasons, like people who have been recently diagnosed with celiac disease, it may have a significant impact on our comfort with the type of social get-togethers we were accustomed to having.
For example, if someone comes from a family where pasta is an important part of the gastronomic tradition, after receiving a celiac disease diagnosis and the prescription to a strict gluten-free diet, they may no longer feel comfortable spending time with family during mealtime out of fear of diet transgression or being made fun of.
The same is true for people who are accustomed to food traditions rich in bread, like pizza, fresh rolls, hamburgers, paninis, and sandwiches, especially in areas where gluten-free alternatives are limited and significantly more expensive. The desire to adhere to the gluten-free diet to feel better physically may make individuals feel like they have to sacrifice social comforts.
What Health and Nutrition Coaches Can Do to Support a Client with Celiac Disease
Fitness and Exercise
There is limited research that focuses on the relationship between exercise and celiac disease. There is, however, a growing body of research that helps us to understand the role of exercise in the management of autoimmune diseases in general.
What the Research Says:
- People with celiac disease may be more at risk of developing osteoporosis due to chronic disease and a risk of nutrient deficiency. While exercise is an important factor for promoting bone health in general, researchers found that exercise only plays a minor role in determining changes in mineral bone density.
- Exercise has a role in decreasing chronic inflammation in people with autoimmune diseases.
- Engaging in regular exercise may help to reduce fatigue and improve symptoms of depression.
- Regular physical activity can help individuals manage chronic pain symptoms.
Key Exercise Recommendations for Clients with Celiac Disease:
- If your client does not currently exercise, take time to understand what the main barriers are. You may be able to build a plan together to help overcome those barriers.
- Talk to your client about the benefits of exercise and physical activity for some of the symptoms of their celiac disease.
- Build an exercise plan that starts slow and integrates physical activities your client enjoys doing.
- As your client begins an exercise plan, check in with them regularly and make adjustments as necessary.
The current dietary guidelines for the US include a variety of vegetables and legumes; whole or minimally processed fruits; low-fat or no-fat dairy products; protein sources like poultry, beans, and seafood; and oils. Whole grains are also part of the guidelines, but there are several gluten-free options, like quinoa and rice.
In other words, even though wheat and gluten-containing products are a staple in the US and other cultures, there are several other food groups and options that make it possible to have a healthy diet that meets your body’s nutritional needs.
What the Research Says:
- A lifelong gluten-free diet is the only treatment for celiac disease, but approximately 20% of people with celiac disease do not respond to the gluten-free diet.
- The Gluten Contamination Elimination Diet may help individuals with celiac disease who are not responsive to gluten-free diets.
- When people with celiac disease do not follow a gluten-free diet, they have a higher risk of developing intestinal cancers, type 1 diabetes, osteoporosis, thyroid disease, multiple sclerosis, anemia, infertility, miscarriage, epilepsy, and more.
- Initial research shows that developing gluten tolerance several years after a gluten diagnosis over time may be possible. However, in current guidelines, glucose introduction is not recommended for people with celiac disease, as it could have life-threatening effects on some people.
- People following gluten-free diets for long periods of time may be more at risk of nutrient deficiencies, specifically fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D.
- Many people with celiac disease have an intention-behavior gap, meaning that they have a positive intention of adhering to a gluten-free diet, but in actuality, they continue to consume gluten-containing foods. Psychological symptoms, like anxiety and depression, are shown to negatively influence dietary adherence.
- It can take anywhere between two months and two years of following a gluten-free diet for the small intestine of a person with celiac disease to repair itself. Consuming non-gluten sources of fiber and probiotics may help individuals manage symptoms.
- People with celiac disease tend to have intestinal dysbiosis. Research is currently underway to determine the effectiveness of probiotic supplementation and probiotic foods on symptoms of celiac disease.
Key Nutritional Recommendations for Clients with Celiac Disease:
- Work with clients to help them identify foods that are free of gluten and traces of gluten. Assess ingredient labels and allergy warnings together so that they learn to identify foods with gluten-containing ingredients as well as foods that were processed in a place where cross-contamination was possible.
- If your clients have a desire to eat gluten-containing foods like bread, pasta, or baked goods, work with them to recommend recipes and identify gluten-free bakeries and gluten-free friendly restaurants.
- Show them what the gluten-free label looks like so they can readily identify it.
- If you are working with a client with diagnosed celiac disease, it is important that you support them in finding strategies that will help them adhere to a gluten-free diet.
- In addition to supporting clients with adhering to a gluten-free diet, you can suggest foods that will help them rebuild their intestinal integrity and support their overall immune system by suggesting gluten-free high-fiber foods like fruits, vegetables, and gluten-free grain alternatives.
- With approval from your client’s primary care provider, you can suggest probiotic foods or probiotic supplements to help to reestablish your client’s intestinal microbiota.
- Family and close social circle support is an essential component of adhering to a gluten-free diet. Successful diet adherence strategies include planning ahead and taking their own food to social functions.
- Use behavior change strategies you learned in your coaching training to help bridge the intention-behavior gap in clients with a low adherence to a gluten-free diet.
- Work with your client to determine if a meal plan will be helpful for them. In some cases, meal plans may add to the restrictive nature of their condition, so it may be more helpful for you to build a food exchange list.
- Keep an eye out for signs of undernutrition and malnutrition in individuals who are following a gluten-free diet. You may want to use tools like a diet record, food frequency questionnaire, or dietary recall to gain a better understanding of their dietary variety and understand what may be causing the signs of undernutrition and malnutrition.
- If you have a client whom you suspect might have celiac disease, it is essential that they get tested by their primary health provider before you recommend they go on a gluten-free diet. If the symptoms aren’t due to celiac disease or another gluten-related condition, eliminating a food group could further exacerbate symptoms and the risk of malnutrition.
Mental Health Management
The biochemistry of celiac disease has a direct impact on brain health, as does the impact on lifestyle. From a holistic perspective, it is essential that you coach your clients in managing celiac disease as it affects their bodies, minds, and social interactions.
What the Research Says:
- People with untreated or undiagnosed celiac disease tend to have a lower quality of life due to the discomfort, pain, nausea, and frequent bowel movements that the condition causes with continued consumption of gluten-containing products and other conditions that may develop.
- Additionally, people with untreated celiac disease are at greater risk of developing anxiety, depression, and fatigue. Those most at risk are children.
- A recent study revealed that people with undiagnosed or untreated celiac disease may actually experience brain damage and cognitive deficiency tied to gluten exposure.
- Even after a few months of having initiated treatment, several people may continue to be affected by moderate to severe mental health issues.
- When people with celiac disease effectively adhere to a gluten-free diet, they may experience psychological or emotional distress in a different form. Since they have to take special care of what they are eating, they may feel left out of social experiences that revolve around food. Additionally, some people, especially children and adolescents, may be subject to bullying for following a strict diet or doubt from peers that they have a serious autoimmune condition.
Key Mental Health Management Recommendations for Clients with Celiac Disease:
- Celiac disease impacts everyone’s mental and emotional health differently. Whether they have just been diagnosed with celiac disease or have been living with the condition for most of their life, it is important that you check in with them regularly to see how they are feeling and whether they are struggling with any new emotional or social challenges.
- Support your client in finding tools that make them feel empowered to follow a gluten-free diet while also enjoying the food they eat and their social circles.
- Help your client find peer-support groups of other people with celiac disease.
- If your client approves, work with their families to help them gain a better understanding of celiac disease and to build a supportive environment for your client to care for themselves.
Celiac disease is a severe condition that, even with its complexities, is one of the best understood autoimmune diseases that affect humans. While research is being carried out to identify alternative therapies, the only approved and effective therapy for most individuals is a strict gluten-free diet.
As their health and nutrition coach, it is important that you arm yourself with the knowledge and information to understand what a celiac diagnosis might mean for your client and to transfer skills and resources to your client so that they can live a fulfilling gluten-free life.