Mi-Young Ryee, PhD
Celiac disease is a genetic, autoimmune condition in which ingestion of gluten interferes with the body’s ability to absorb nutrients by causing damage in the small intestine. For patients with celiac disease, eating gluten, a protein commonly found in wheat, rye, and barley sets off an immune response which damages the villi (small finger-like projections that help with absorption of nutrients) in the small intestine. Treatment for celiac disease is a lifelong adherence to a gluten-free diet.
Psychologists can play a critical role in helping patients with celiac disease by identifying patients with undiagnosed celiac disease who are in need of medical evaluation and treating the unique psychosocial challenges related to celiac disease in pediatric populations. Celiac disease is a chronic illness that is considerably underdiagnosed in the United States (Rubio-Tapia, Ludvigsson, Brantner, Murray & Everhart, 2012). For many reasons, mental health providers may be the first point of contact for a patient with undiagnosed celiac disease. Therefore, increasing awareness and education about celiac disease can help improve detection of youth who should be referred for medical evaluation. A number of medical providers may be appropriate for referral, including pediatricians, gastroenterologists, or primary care providers, with the choice depending on what medical assessment has already been completed, availability of providers, and the family’s preference. Additionally, psychologists can help treat the emotional and behavioral difficulties related to coping with celiac disease for children and adolescents as well as their families.
Serologic tests are used to screen for celiac disease, but a biopsy (a procedure in which a small piece of tissue is removed) of the small intestine is generally used to confirm diagnosis. The European Society of Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) proposed criteria for some patients to be diagnosed by serologic methods and without a biopsy if certain criteria are met, however, this proposal has not yet been adopted by the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN). For further details, please refer to the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition Guidelines for the Diagnosis of Coeliac Disease (Husby, et al., 2012). Genetic tests are available, but are not currently useful as diagnostic tools. The presence of specific genes can identify patients who may need further evaluation for celiac disease, but since these genes are also found in people without celiac disease, it does not confirm diagnosis.
In addition to those with first-degree or second-degree relatives with celiac disease, those with the following conditions are at increased risk for celiac disease and should be assessed as appropriate: Down Syndrome, Williams Syndrome, Turner Syndrome, Autoimmune Thyroid Disorders, Immunoglobulin A deficiency, and Type 1 diabetes (Rostom et al., 2006; Ludvigsson & Green, 2011; Hill et al., 2005).
Signs and Symptoms
Each patient with celiac disease can present with different symptoms, and some presentations may mimic other health conditions, making accurate diagnosis more challenging. Young children may present with more classic signs of celiac disease such as failure to thrive, chronic diarrhea, and abdominal bloating and pain whereas older children and adults may have more non-gastroenterological symptoms. Further complicating diagnosis is that some patients with celiac disease may be asymptomatic. A multi-center study on the sero-prevalence of celiac disease in the United States showed that 60% of children and 41% of adults diagnosed with celiac disease during the study were asymptomatic (Fasano et al., Archives of Internal Medicine, February 2003).
Approximately 1 in 141 people in the United States have celiac disease, but the majority of people are undiagnosed (Rubio-Tapia, Ludvigsson, Brantner, Murray & Everhart, 2012). For adults in North America, the average number of years until receiving an accurate diagnosis of celiac disease ranges from 4 to 11 years (Lo, Sano, Lebwohl, Diamond, Green, 2003; Green, Stavropoulos, Panagi, et al., 2001; Davidson & Hassall, 1997). There are multiple factors that may contribute to delayed diagnosis of celiac disease.
The wide range of over 200 possible signs and symptoms, and variability in clinical manifestation complicate accurate diagnosis. Signs and symptoms can involve different parts of the body including, but not limited to, gastrointestinal, musculoskeletal, reproductive, dermatologic, dental, and neurological systems. In the absence of an identified organic etiology, physical symptoms such as “brain fog,” fatigue, pain, and weight loss are often attributed to psychiatric origins. Given how underdiagnosed and misdiagnosed celiac disease is, however, it may not be included as an initial rule-out in a mental health referral.
Additionally, as psychiatric symptoms such as anxiety and depression can be present with celiac disease, this can also contribute to patients being seen by mental health providers prior to accurate diagnosis of celiac disease. Therefore, encouraging psychologists to maintain a broad scope of differential diagnoses, including consideration of possible celiac disease, can help improve detection.
Long-Term Complications and Associated Health Risks
If patients with celiac disease experience symptoms with gluten exposure, reaction length can vary from person to person and last from a few hours to several days. Patients who strictly follow a gluten-free diet may experience relief of symptoms (if any were present) as soon as one week after going gluten-free, but it can take six to 12 months for the small intestine to heal in children, and up to two years to heal in adults. Early and accurate diagnosis of celiac disease is important to minimize the long-term complications and associated health risks that can accompany chronic gluten exposure for patients with celiac disease. These can include anemia, short stature, bone softening, malnutrition, reproductive problems, seizures and peripheral neuropathy, and increased risk for certain cancers. Routine follow-up is very important after the initial diagnosis of celiac disease. Generally, follow-up is at six and 12 months and then annually thereafter. However, if symptoms persist despite a gluten-free diet or other problems occur, earlier follow-up is recommended.
Many people are aware of gluten found in foods, but may be less cognizant of gluten that can be present in other items such as cosmetics (lip sticks, lip balms), body care products (e.g., lotion, shampoo), medications, vitamins, and Play-Doh. While these products may not typically be consumed, placing your hand to your mouth after touching the product or accidental ingestion (e.g., children playing with Play-Doh) can cause gluten exposure. This may provoke a reaction in certain highly gluten sensitive patients.
Approximately 1 in 141 people in the United States have celiac disease, but the majority of people are undiagnosed.
For patients with celiac disease, it is important to be aware of potential gluten exposure through cross contamination. While some patients work diligently to adhere strictly to a gluten-free diet and maintain gluten-free safe spaces, they may have inadvertent gluten exposure from cross contamination in blended kitchens (both gluten-free and gluten areas) at home or elsewhere. Shared appliances and utensils such as toasters, cutting boards, and knives need to be well cleaned to ensure there is no remaining gluten. For households who are able to do so, having duplicate versions of these items that are dedicated as being gluten-free can minimize the potential for exposure. Also, particular attention to shared food items, like condiments, is important. Using condiments in squeeze bottles and avoiding direct contact with food items, such as bread, reduces risk. Families with blended kitchens are also advised to keep gluten-free products above gluten products to prevent cross contamination from falling crumbs.
Outside of the home, patients with celiac disease have to make efforts to ensure their food safety. Foods that are marked gluten-free can highlight potential options and make selection easier. However, it is also important to ask questions about food preparation and make sure there is a dedicated gluten-free area that ensures there is no gluten exposure. While some food may be identified as gluten-free, it could be made with supplies used to prepare foods with gluten, thus leading to cross contamination. For example, a gluten-free pasta meal is available, but if the same colander is used to strain the gluten pasta and gluten-free pasta, cross-contamination may occur. Patients should also be aware there are many naturally gluten-free foods that may not be labeled as gluten-free, but are safe to eat. Asking about food preparation is still important, but knowing what foods are naturally gluten-free can widen the scope of options.
Adjustment to Diagnosis
Diagnosis of celiac disease may come with mixed emotions. For some children and adolescents who faced numerous medical evaluations and misdiagnoses, a confirmed diagnosis of celiac disease may provide a sense of relief and an explanation. For those patients who had never experienced any overt symptoms related to celiac disease, however, diagnosis may be unexpected and confusing. The realization of having a chronic illness that requires life-long adherence to a gluten-free diet can also be a challenge. Some of the goals of psychological intervention at the time of initial diagnosis are to help children and adolescents have a developmentally appropriate understanding of celiac disease and its treatment, provide assistance in accepting the diagnosis, and begin to feel empowered in coping adaptively with the disease. Regardless of the patient’s age, parents play a key role in providing support, so understanding and adjustment to their youth’s diagnosis of celiac disease is important to assess as well. Parents may also have their own adjustment to a child’s diagnosis of a chronic illness like celiac disease, especially if it has taken multiple years for an accurate diagnosis. Families who have advocated for their children throughout years of struggling to find a diagnosis may have had negative experiences leading to mistrust of medical providers or feeling invalidated or dismissed. Addressing these experiences can be an important component of helping a family adjust to diagnosis.
Studies have found adults with celiac disease have greater proportion of anxiety and depressive symptoms...
Mental Health and Celiac Disease
Recognizing symptoms associated with untreated celiac disease that can affect the emotional and behavioral presentation is also important during the initial diagnosis. The presence of neurological and psychiatric symptoms such as irritability, mood changes, anxiety, fatigue, difficulties with concentration and attention, sleep difficulties, and decreased appetite may be associated with celiac disease.
Studies have found adults with celiac disease have greater proportion of anxiety (Addolorato, et al., 2001; Carta,et al., 2002; Addolorato et al., 2008; Hauser, et al., 2010) and depressive symptoms (Cicarelli, et al., 2003; Carta, et al., 2002; Ludvigsson,et al., 2007) as compared to people without celiac disease. In the pediatric literature, studies have shown a higher prevalence of Attention-Deficit/Hyperactivity Disorder (ADHD)-like symptoms (Niederhofer et al., 2006; Zelnick et al., 2004) and increased rates of anxiety and depressive symptoms (Mazzone et al., 2011) in children and adolescents with celiac disease. Greater depressive and disruptive disorders were also found in Pynnonen et al.’s (2004) study of adolescents with celiac disease.
Given the presence of potential neurological and psychiatric symptoms, combined with the absence of gastrointestinal symptoms, youth with celiac disease may come in contact with mental health providers prior to diagnosis of celiac disease. Thus, psychologists who are knowledgeable about celiac disease can provide care for the neurological and psychiatric symptoms that are present, but also ensure patients receive proper medical evaluation and care for the underlying undiagnosed celiac disease that may at the root cause.
The following guidelines can help mental health providers know when to consider referring for medical evaluation. First, during initial assessment, if there are significant somatic symptoms but no medical evaluation has been completed, referral to a health provider for evaluation and screening of possible celiac disease would be advisable. Also, if there is a family history of celiac disease (first- or second-degree relative) or the patient is a part of a population that is at greater risk, evaluation and screening should be considered. During the course of treatment, or towards the end of treatment, if gains are made with comorbid symptoms such as anxiety and depression, but somatic symptoms persist, advocate re-evaluation with a health provider and communicate directly to convey your concerns. Also, for youth with chronic pain as the presenting problem, medical evaluation (or re-evaluation, if an initial assessment was completed) should be considered if an adequate course of treatment is completed without improvement.
Collaboration across mental and medical health providers is important for patients with celiac disease. Medical providers may be more apt to pursue evaluation if they know a patient is already receiving mental health care. Psychologists can also facilitate collaboration between medical providers and families who may be hesitant to engage with health professionals. By helping to identify the potential barriers to care such as patient or parent anxiety about medical procedures, past family negative encounters with providers, or limited access to resources, psychologists are uniquely equipped to help patients with celiac disease get the medical and mental health care they need. Providing patients and families with anticipatory guidance about what evaluation for celiac disease may be like, identifying possible concerns, and encouraging follow through can minimize some of the barriers to care.
For patients who have already been diagnosed with celiac disease, psychologists can still help recognize when re-evaluation is needed. Patients with celiac disease who are adherent to a gluten-free diet, but experience persistence of symptoms, should receive medical evaluation to rule out other possible organic etiologies given the many associated health complications and conditions associated with celiac disease. When patients are experiencing functional impairment, e.g., struggling to attend school and keep up with activities, psychologists can help with coping during this period while medical assessment is pursued. If fatigue and difficulties maintaining a daily schedule are present, helping patients learn how to pace themselves, structure their time, and work with the energy level they have is important. Academically, requesting accommodations such as reduced work load, flexible deadlines, adjusted scheduled (e.g., late arrival or early departure), extended time for classwork and tests, close communication across family and school staff, and homebound tutoring if needed may be helpful. In regards to extracurricular and social activities, encouraging modified participation (e.g., watching a sports practice for part of the time, video conferencing with friends in place of meeting in person) and working closely with coaches, instructors, friends’ parents to raise awareness of a child’s specific needs or limitations, are strategies to help youth stay as engaged as possible.
Adherence to a Gluten-Free Diet
Adherence to a gluten-free diet is essential in celiac disease as it is the treatment, and even the smallest amount of gluten exposure may lead to symptoms for some patients. Adapting a gluten-free diet requires many skills including knowing how to read labels and look for ingredients, considering cross-contamination in home food preparation as well as manufactured products, kitchen cleaning, and planning for dining out and travel. As with many other chronic illnesses, adherence to treatment can be difficult for children and adolescents with celiac disease. For some youth with celiac disease, keeping a gluten-free diet can invoke anxiety about accidental gluten exposure or future health concerns, fatigue from maintenance over time, and negative emotions (e.g., frustration, disappointment, sadness, etc.). Continuing a gluten-free diet may also present different challenges at varying developmental stages. For younger children, parents have more responsibility and control over their child’s intake, however, as children grow older and approach school age, children and parents must interface with other systems such as schools and the larger community.
Parents are encouraged to work with their child’s school to educate about celiac disease and ways to keep their child healthy and safe in the educational environment.
Bacigalupe and Plocha’s (2015) qualitative study of families of children with celiac disease identified three categories related to barriers to diet adherence for their participants: social isolation (e.g., feeling different or social exclusion), traditional gender arrangements (e.g., mothers having more responsibility for diet), and misunderstandings about celiac disease (e.g., severity of consequences of eating gluten or lack of awareness of cross-contamination). Social support was found to help diet adherence, and the four identified forms included friends and family who were accommodating, school/community support, group support, and knowing others who also maintained a gluten-free diet. Planning ahead and bringing their own food to social events assisted in maintaining a gluten-free diet. A focus group of adolescents with celiac disease found the presence of symptoms after gluten ingestion and knowledge of the importance of a completely gluten-free diet and potential long-term risks of gluten exposure as factors that may help with adherence (Olsson et al., 2008).
Parents play an essential role in helping to establish supports in their child’s environment. Parents are encouraged to work with their child’s school to educate about celiac disease and ways to keep their child healthy and safe in the educational environment. In public schools, requesting a 504 plan (an individualized plan for schoolchildren with disabilities) is recommended. School staff may need education on celiac disease, what a gluten-free diet is, potential risks of any gluten exposure, ways to avoid cross-contamination, potential neurological and psychiatric symptoms related to celiac disease, and the socio-emotional impact of adherence to a gluten-free diet. While the specific accommodations a school can provide may vary, it is critical to raise school staff’s awareness that a child has celiac disease and what effects this has on school life. Parents’ close communication with teachers is vital in planning ahead and being able to provide gluten-free alternatives for their child when there are special events, to ensure physical health and to minimize the negative impacts of having a special diet. Typical events may include food for holiday or birthday parties in the classroom, but consideration should also be given to educational content such as materials used for cooking or science classes, which may contain gluten.
As school-aged children grow older and are more involved with friends and activities, social situations (e.g., class celebrations, friends’ birthday parties, sports outings, etc.) can be difficult as their desire to fit in and eat what their peers are having clashes with maintaining a gluten-free diet. Informing adults who are coordinating events, such as parents and coaches, and planning ahead to make sure suitable gluten-free alternatives will be available, either at the event and/or sent with the child, is key. Additionally, preparing children in advance of the event can help them so they know what to anticipate, such as knowing how to respond to questions or comments from others, what to do if they are offered a food that is not safe for them to eat, and assisting them with emotional coping.
Since patients with celiac disease are advised to avoid any gluten ingestion at all, adherence is an important topic to anticipate and address.
During adolescence, it’s typical for teenagers to want greater independence and freedom. Adolescents may spend more time out of the home with school, friends and extracurricular activities, so it is important that they have the tools to make healthy choices when they are on their own. Knowledge about gluten-free food options in general, identifying what they can eat at the places they frequent (restaurants, food markets, etc.), and helping them plan ahead to bring appropriate food options if needed, are useful. Awareness of gluten in other products as well, such as medications and cosmetic products, is also helpful as adolescents may be more independent in making such purchases. Additionally, busy teenagers may benefit from the availability of more flexible and on-the-go gluten free food options to accommodate their active lives. Adolescence is a classic time to have some developmentally normative non-adherence, so it is recommended to acknowledge this and find ways to help parents and teenagers problem solve and work together. Since patients with celiac disease are advised to avoid any gluten ingestion at all, adherence is an important topic to anticipate and address.
For those adolescents who are making the transition to college and living at school, maintaining a gluten-free diet can be especially difficult. Trying to keep a gluten-free diet while acclimating to a new environment and the academic, social, and organizational rigors of college can be tough, especially away from the support of family. Families are encouraged to research potential schools and contact them directly to find out about gluten-free options and possibility for accommodations. Gathering information about the school’s structure and expectations, e.g., requirements about participating in dining meal plans, dorm facilities (is it possible to have a microwave or refrigerator in your student’s room) and off-campus living choices are some factors to consider.
As with all teenagers making the transition towards young adulthood, greater independence also comes with more responsibility. For adolescents with a chronic illness, such as celiac disease, this includes greater participation in their health—being able to provide their medical history, speaking to others about celiac disease and its implications, and having more control of their daily routine (food intake, schedule, etc.). Helping adolescents and families prepare for these changes and develop concrete strategies for navigating real-life scenarios including collegiate social life (e.g., parties, alcohol use, dating, interfacing with professors), advocating for themselves, and managing their daily lives is useful. Identifying resources for educational support (e.g., some schools require students register with the office of student disabilities before providing accommodations), housing, go-to staff for food and dining related questions, and how to access medical and psychological assistance if needed are some considerations. Encouraging families to find ways that parents can stay involved and supportive while fostering a healthy sense of autonomy and independence in their young adult is also helpful.
Celiac disease has a significant social impact. Some children experience physical effects related to celiac disease such as short stature, chronic fatigue, abdominal pain, loose stools, headaches, seizures, or skin changes. Support in coping with these symptoms, and minimizing their disruption to social, academic, emotional, and behavioral functioning is an important component of treatment.
Since many social activities involve food and eating, these situations can be a source of stress for children and adolescents with celiac disease, as well as their parents. It’s common for youth to feel socially isolated or different from peers for their gluten-free diet. Acknowledging and normalizing these feelings is a good first step to helping youth cope more adaptively and begin to find ways to take control of their condition and health. Children’s needs may vary according to their age and developmental functioning, (e.g., younger children may need more scripts on what to say and how to respond to questions, adolescents may benefit from help in being assertive with others about maintaining a gluten-free diet). Regardless of age, it’s helpful to include children and adolescents in decisions around disclosure about celiac disease and give them control, when possible, over who is informed and how information is shared.
Another social impact of celiac disease is familial. Decisions about whether to integrate a gluten-free diet for individuals or the entire household, effect on siblings when parents have to give more attention and time to one child, or parents’ guilt about late or misdiagnosis for their child are examples of some of the concerns that may arise. Other considerations include how to divide responsibilities such as food shopping, meal planning, communicating with schools and other parents, and coordinating medical care such as appointments. Helping families communicate, plan, problem-solve and process their thoughts and feelings around these issues may be a target of psychological intervention. As with any treatment, understanding the specific needs and context of each family is critical in developing solutions that are most useful for that family.
Quality of Life
Examination of quality of life for youth with celiac disease is a growing area of research. Skjerning et al.’s (2014) study of health-related quality of life in children and adolescents with celiac disease sheds light on what is important to them. Their qualitative study found two major categories emerged to impact health-related quality of life, having celiac disease and coping with celiac disease. For the youth in their study, having celiac disease encompassed dealing with symptoms, experience of diagnosis, self-perception, awareness of celiac disease, social and emotional impact of celiac disease, and thoughts about the future, while coping with celiac disease included coping with food and coping with social situations. These areas are potential treatment targets to help children cope more adaptively with celiac disease and adherence to a gluten-free diet, and improve quality of life.
Another qualitative study looking at children and adolescents with celiac disease found that ‘dilemmas’ broadly fell into three categories: emotions, relationships, and management of daily life, which occurred around meals at school, meals at home, and food situations or meals outside of the home (Biagetti et al., 2013). Examples of dilemmas involving emotion included desire to eat foods with gluten, sadness or anger about having a gluten-free diet, and anxiety about exposure to gluten. Not wanting to tell others about their special diet, eating gluten to fit in with peers, or avoiding social opportunities were examples of relationship related dilemmas. Lastly, for teenagers in this study, managing the practical aspects of having a gluten-free diet was challenging This included needing to remember to have gluten-free options with them or being in situations with limited or no gluten-free options available.
In addition to traditional mental health treatment, facilitating opportunities to engage with other similar youth can be greatly beneficial. Bongiovanni et al. (2010) found attending a gluten-free camp for one week had positive impact on the quality of life of children with celiac disease and their well-being, self-perception, and emotional outlook. Encouraging children, adolescents, and families to connect with resources about celiac disease, e.g., support groups, websites, stores that provide gluten-free foods and products, etc., can also help to foster adaptive coping and self-advocacy.
Advocacy and Community Support
For patients with celiac disease and their families, getting connected with resources and the larger celiac disease community can be a great source of practical and emotional support. Utilizing the knowledge and experience of others can help reduce the anxiety associated with tasks such as gluten-free grocery shopping for the first time, requesting a 504 plan at school, or knowing the best place to shop for gluten-free versions of a child’s favorite food. Patients can take advantage of support groups and gluten-free camps for children. Families may enjoy gluten-free expos or cooking classes. Whether online or in person, connecting patients and families to celiac disease-related resources can be an important aspect of psychological care.
With increased awareness about celiac disease and the role of mental health, psychologists can be uniquely equipped to help with both the medical and mental health needs of patients with celiac disease. From knowing when to refer to medical evaluation for possible undiagnosed celiac disease to helping patients already diagnosed with celiac disease cope adaptively, psychological care is important from assessment to treatment. Armed with the knowledge of the unique psychosocial challenges of celiac disease such as adherence to a gluten-free diet, the impact on social and familial life, and the importance of community support and connection, psychologists have a key role in promoting the emotional and physical well-being of patients with celiac disease.
Mi-Young Ryee, PhD, is a child clinical psychologist at Children’s National Health System. Dr. Ryee received her PhD from the University of Virginia Curry School of Education and completed her internship and postdoctoral fellowship at Ann & Robert H. Lurie Children’s Hospital of Chicago. She has been credentialed by the National Register since 2014. She specializes in working with children and adolescents with chronic illness including adjustment to diagnosis, adherence challenges and overall adaptive coping.
Celiac Disease Foundation
Celiac Disease Program at Children's National Health System
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Kids Health from Nemours
Mass General Hospital for Children
Mayo Clinic Celiac Disease Symptoms and Causes, http://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/dxc-20214627
National Institute of Diabetes and Digestive and Kidney Diseases
North American Society of Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)
The University of Chicago Celiac Disease Center
Gluten-Free Lifestyle Resources
125 Gluten-Free Vegetarian Recipes by Carol Fenster
201 Gluten-Free Recipes for Kids by Carrie S. Forbes
The Delight Gluten-Free Cookbook by Vanessa Weisbrod
Gluten-Free Family Favorites by Kelli Bronski
Gluten-Free Gourmet Cooks Comfort Food by Bette Hagman
The Gluten-Free Table: The Lagasse Girls Share Their Favorite Meals by Jilly Lagasse and Jessie Lagasse Swanson
Real Life with Celiac Disease by Melinda Dennis
Delight Gluten-Free Magazine
Living Without’s Gluten-Free & More
Book Resources for Children and Adolescents with Celiac Disease
“Amy Goes Gluten-free: a young Person’s Guide to Celiac Disease” by Hilarie Staton, MD (author), Alan M. Leichtner, MD, MPH (Editor), Athose Bousvaros (Editor), Joe Staton (Illustrator)
“The Gluten Glitch” by Stasie John (Author), Kevin Cannon (Illustrator)
The University of Chicago Medicine Celiac Disease Center
Symptoms of Celiac Disease
Celiac disease affects people differently. There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease have no symptoms at all. However, people without symptoms are still at risk for some of the complications of celiac disease.
Symptoms may or may not occur in the digestive system. For example, one person might have diarrhea and abdominal pain, while another person has infertility or anemia. Some people develop celiac disease as children, others as adults.
Symptoms of celiac disease may include one or more of the following:
- Recurring abdominal bloating and pain
- Chronic diarrhea/constipation
- Liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
- Weight loss
- Pale, foul-smelling stool
- Iron-deficiency anemia that does not respond to iron therapy
- Failure to thrive or short stature
- Delayed puberty
- Pain in the joints
- Tingling numbness in the legs
- Pale sores inside the mouth
- A skin rash called dermatitis herpetiformis (DH)
- Tooth discoloration or loss of enamel
- Unexplained infertility, recurrent miscarriage
- Osteopenia (mild) or osteoporosis (more serious bone density problem)
- Peripheral neuropathy
- Psychiatric disorders such as anxiety and depression
How do these symptoms differ in children and adults?
Young children tend to have the more classic signs of celiac disease, including growth problems (failure to thrive, chronic diarrhea/constipation, recurring abdominal bloating and pain, fatigue, and irritability.
Older children and adults tend to have symptoms that are not entirely gastrointestinal in nature. Recent research has demonstrated that only a third of adult patients diagnosed with celiac disease experience diarrhea. Weight loss is also not a common sign. The most common sign of celiac disease in adults is iron deficiency anemia that does not respond to iron therapy.
Who should be tested for celiac disease and how often?
- Children older than 3 years of age and adults, regardless of symptoms, if related to a close relative with biopsy-confirmed celiac disease. A close relative is considered to be a parent, sibling, or child. An aunt/uncle, grandparent, or cousin with celiac disease may raise an individual’s risk for celiac disease somewhat, but not much higher than the risk of the average population.
- In children younger than 3 years of age with symptoms, antibody testing may not always be accurate. However, young children with symptoms (especially failure to thrive or persistent diarrhea) should be evaluated by a pediatric gastroenterologist. It can take up to a year for children eating wheat or barley-based cereals to generate an autoimmune response to gluten that will show up on a blood test.
- Anyone who has a related autoimmune disorder, regardless of celiac symptoms, should be tested for celiac disease and, if negative, the test should be repeated on a periodic basis. These conditions include insulindependent diabetes mellitus, Hashimoto’s thyroiditis, Graves disease, Addison’s disease, and genetic syndromes such as Down, Turner, or Williams.
- Anyone who has experienced persistent miscarriage or infertility where a medical cause could not be found should be tested for celiac disease.
- There are many other symptoms that could indicate the presence of celiac disease, including persistent gastrointestinal symptoms, bone density problems, dental enamel hypoplasia, fatigue, and others. If you are concerned about your symptoms, ask your doctor about testing.
Why do I need to be tested more than once?
Celiac disease can develop in a person at risk at any time. There are three factors that come together to cause celiac disease to occur—an overresponsive immune system, genetic predisposition, and factors in an individual’s environment.
We know that people are born with the genes for celiac disease, and that gluten is what turns on the autoimmune response. However, there are factors in an individual’s environment that can affect when celiac disease develops. Some people can eat gluten for 50 years and then develop celiac disease, while others eat gluten for only 9 months before they are diagnosed. Many individuals have silent celiac disease, which means that the absence of symptoms does not indicate they are healthy.
What is known is that the early diagnosis of celiac disease might be able to prevent the development of other autoimmune disorders and additional complications in many people. Regular antibody testing is the key to early diagnosis.
Symptoms and Causes
The signs and symptoms of celiac disease can vary greatly and are different in children and adults. The most common signs for adults are diarrhea, fatigue and weight loss. Adults may also experience bloating and gas, abdominal pain, nausea, constipation, and vomiting.
However, more than half of adults with celiac disease have signs and symptoms that are not related to the digestive system, including:
- Anemia, usually resulting from iron deficiency
- Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
- Itchy, blistery skin rash (dermatitis herpetiformis)
- Damage to dental enamel
- Mouth ulcers
- Headaches and fatigue
- Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
- Joint pain
- Reduced functioning of the spleen (hyposplenism)
- Acid reflux and heartburn
In children under 2 years old, typical signs and symptoms of celiac disease include:
- Chronic diarrhea
- Swollen belly
- Failure to thrive
- Poor appetite
- Muscle wasting
Older children may experience:
- Weight loss
- Short stature
- Delayed puberty
- Neurological symptoms, including attention-deficit/hyperactivity disorder (ADHD), learning disabilities, headaches, lack of muscle coordination and seizures
Dermatitis herpetiformis is an itchy, blistering skin disease that stems from intestinal gluten intolerance. The rash usually occurs on the elbows, knees, torso, scalp and buttocks.
Dermatitis herpetiformis is often associated with changes to the lining of the small intestine identical to those of celiac disease, but the disease may not produce noticeable digestive symptoms.
Doctors treat dermatitis herpetiformis with a gluten-free diet or medication, or both, to control the rash.
When to See a Doctor
Consult your doctor if you have diarrhea or digestive discomfort that lasts for more than two weeks. Consult your child's doctor if your child is pale, irritable or failing to grow or has a potbelly and foul-smelling, bulky stools.
Be sure to consult your doctor before trying a gluten-free diet. If you stop or even reduce the amount of gluten you eat before you're tested for celiac disease, you may change the test results.
Celiac disease tends to run in families. If someone in your family has the condition, ask your doctor if you should be tested. Also ask your doctor about testing if you or someone in your family has a risk factor for celiac disease, such as type 1 diabetes.
Celiac disease occurs from an interaction between genes, eating foods with gluten and other environmental factors, but the precise cause isn't known. Infant feeding practices, gastrointestinal infections and gut bacteria might contribute to developing celiac disease.
Sometimes celiac disease is triggered — or becomes active for the first time — after surgery, pregnancy, childbirth, viral infection or severe emotional stress.
When the body's immune system overreacts to gluten in food, the reaction damages the tiny, hair-like projections (villi) that line the small intestine. Villi absorb vitamins, minerals and other nutrients from the food you eat. If your villi are damaged, you can't get enough nutrients, no matter how much you eat.
Some gene variations appear to increase the risk of developing the disease. But having those gene variants doesn't mean you'll get celiac disease, which suggests that additional factors must be involved.
The rate of celiac disease in Western countries is estimated at about 1 percent of the population. Celiac disease is most common in Caucasians; however, it is now being diagnosed among many ethnic groups and is being found globally.
Celiac disease can affect anyone. However, it tends to be more common in people who have:
- A family member with celiac disease or dermatitis herpetiformis
- Type 1 diabetes
- Down syndrome or Turner syndrome
- Autoimmune thyroid disease
- Microscopic colitis (lymphocytic or collagenous colitis)
- Addison's disease
- Rheumatoid arthritis
Untreated, celiac disease can cause:
- The damage to your small intestine means it can't absorb enough nutrients. Malnutrition can lead to anemia and weight loss. In children, malnutrition can cause slow growth and short stature.
- Loss of calcium and bone density.Malabsorption of calcium and vitamin D may lead to a softening of the bone (osteomalacia or rickets) in children and a loss of bone density (osteoporosis) in adults.
- Infertility and miscarriage.Malabsorption of calcium and vitamin D can contribute to reproductive issues.
- Lactose intolerance.Damage to your small intestine may cause you to experience abdominal pain and diarrhea after eating lactose-containing dairy products, even though they don't contain gluten. Once your intestine has healed, you may be able to tolerate dairy products again. However, some people continue to experience lactose intolerance despite successful management of celiac disease.
- People with celiac disease who don't maintain a gluten-free diet have a greater risk of developing several forms of cancer, including intestinal lymphoma and small bowel cancer.
- Neurological problems.Some people with celiac disease may develop neurological problems such as seizures or peripheral neuropathy (disease of the nerves that lead to the hands and feet).
In children, celiac disease can also lead to failure to thrive, delayed puberty, weight loss, irritability and dental enamel defects, anemia, arthritis, and epilepsy.
Nonresponsive Celiac Disease
As many as 30 percent of people with celiac disease may not have, or be able to maintain, a good response to a gluten-free diet. This condition, known as nonresponsive celiac disease, is often due to contamination of the diet with gluten. Therefore it's important to work with a dietitian.
People with nonresponsive celiac disease may have additional conditions, such as bacteria in the small intestine (bacterial overgrowth), microscopic colitis, poor pancreas function, irritable bowel syndrome or intolerance to disaccharides (lactose and fructose). Or, they may have refractory celiac disease.
Refractory Celiac Disease
In rare instances, the intestinal injury of celiac disease persists and leads to substantial malabsorption, even though you have followed a strict gluten-free diet. This combination is known as refractory celiac disease.
If you continue to experience signs and symptoms despite following a gluten-free diet for six months to one year, your doctor may recommend further testing and look for other explanations for your symptoms. Your doctor may recommend treatment with a steroid to reduce intestinal inflammation, or a medication that suppresses your immune system. All patients with celiac disease should be followed up to monitor the response of their disease to treatment.
The Gluten-Free Diet: A Basic Overview
Children’s National Health System Celiac Disease Program
What is Gluten?
Gluten is a protein found in all forms of wheat, rye and barley. It is most commonly found in food, but also hides in medicine, vitamins and make-up. The first thing an individual should do when starting a gluten-free diet is schedule a meeting with a skilled dietitian or nutritionist. A well-trained professional can help you learn the basics of a gluten-free diet and help you find ways to adapt to the new lifestyle.
When at home or at the grocery store, a quick guide to ingredients can be a helpful tool for quickly determining if a packaged product is safe.
Safe Gluten-Free Ingredients:
Eliminating wheat, barley and rye from your diet may seem like a daunting task, but it’s important to remember that there are still hundreds of grains and other foods that you can eat. Staples like fresh fruits and vegetables, meats, poultry, seafood and most types of dairy are all gluten-free in their natural forms.
|Acorn Flour||Coconut Flour||Instant Rice||Sesame|
|Arborio Rice||Corn Gluten||Millet||Soybeans|
|Arrowroot||Corn Meal||Modified Corn||Sunflower Seeds|
|Baker’s Yeast||Cornstarch||Starch||Sweet Rice Flour|
|Basmati Rice||Cottonseed||Modified Tapioca||Tapioca|
|Bean Flours||Dal||Montina||Tapioca Flour|
|Brown Rice||Dasheen Flour||Peanut Flour||Taro Flour|
|Brown Rice Flour||Enriched Rice||Potato Flour||Teff|
|Buckwheat||Fava Bean||Potato Starch||Tofu|
|Calrose||Flax||Quinoa||White Rice Flour|
|Canola||Flax Seeds||Red Rice||Xanthan Gum|
|Channa||Glutinous Rice||Rice Flour||Yucca|
Safe Food Additives:
When purchasing packaged foods, there will likely be many ingredients listed that sound unfamiliar or strange. Below is a list of food additives that are safe for a gluten-free diet.
|Acacia Gum||Ethyl Maltol||Sodium Benzonate|
|Adipic Acid||Frutose||Sodium Metabisulphite|
|Algin||Fumaric Acid||Sodium Nitrate|
|Baking Yeast||Invert Sugar||Spices (100 percent pure)|
|Benzoic Acid||Karaya Gum||Stearic Acid|
|Beta Carotene||Lactic Acid||Sucralose|
|Brown Sugar||Malic Acid||Tartaric Acid|
|Caramel Coloring||Mannitol||Vanilla Bean|
|Carob Bean Gum||Monosodium Glutamate||Xylitol|
|Corn Syrup||Pectin||Yeast; Autolyzed|
|Cream of Tartar||Polysorbate||Autolyzed Yeast Extract|
|Dextrose||Propylene Glycol||Nutritional Yeast|
Below is a list of basic food items that contain gluten. It’s important to note that this is not a complete list of gluten-containing foods. If you’re ever unsure about the safety of a product, call the manufacturer directly.
|Barley Grass||Farina||Rice Malt|
|Barley Malt||Fu||Rice Syrup|
|Bleached Flour||Hydrolyzed Wheat Protein||Spelt|
|Bulgur Wheat||Macha||Sprouted Wheat|
|Durum||Malt Vinegar||Wheat Starch|
Questionable Foods & Products:
There are many food items that appear on grocery store shelves that may or may not contain gluten. And, unfortunately, because of varied manufacturing processes, it’s impossible to generalize about any of these products. The only way to be sure one of these products is in fact safe is to check the food label or to contact a manufacturer directly. Below is a list of items that must be double-checked.
- Beer (all forms unsafe except those labeled gluten-free)
- Beef/Chicken/Fish/Vegetable Stock (may contain wheat)
- Bouillon (may contain wheat)
- Brewer’s Yeast (depending on whether it’s a by-product of the brewing process [unsafe] or made from sugar beets [safe])
- Fillers (could be wheat, corn, potato or other starch)
- Lipstick/Lip Gloss/Lip Balm (may contain wheat or barley)
- Marinades (may contain wheat)
- Miso (may contain barley)
- Mustard Powder (may contain wheat)
- Oats (may be cross-contaminated)
- Play Dough (may contain wheat)
- Soy Sauce (may contain wheat)
- Spices (combination spices may contain wheat)
- Toothpaste (dental products may have malted products in their additives and stabilizers)
- Yellow Mustard (may contain wheat)
- Yogurt, flavored (may contain dextrin or barley extract)
Preventing Cross Contamination
Children’s National Health System Celiac Disease Program
Preventing Cross Contamination in Your Kitchen
When you’re on a gluten-free diet, staying safe means avoiding any potential sources of cross contamination. It can happen very easily and unintentionally, so it’s important to understand the many ways in which cross contamination can occur in your own home. While a household does not need to be entirely gluten-free in order to be safe, there are several measures you and your family can take to ensure that utensils, condiments, frying oil, boiling water and food preparation surfaces are sterilized to be safely gluten-free. It’s not any more difficult than preventing against bacteria…just remember to keep your kitchen elements clean!
- Boiling Water: If you’re making pasta and decide to make both gluten-free pasta and gluten-containing pasta, they cannot be cooked in the same water. Gluten from the gluten-containing pasta will contaminate the water and make you sick. The same applies to cooking gluten-free items such as quinoa, rice, vegetables or potatoes in boiling water that has already come into contact with gluten-containing ingredients. Additionally, if the food you’re preparing requires straining, be sure that only gluten-free items go into one strainer while gluten-containing foods are strained in a separate colander or are strained first.
- Condiments: Any condiment that requires you to dip into it should not be used on both gluten-free and gluten-containing ingredients. Particles from gluten-containing ingredients easily contaminate jars of peanut butter, cream cheese, butter, etc. To be extra cautious, if you live in a mixed gluten household, consider buying separate condiments and label one set as gluten-free. Those eating gluten-free foods should only touch the gluten-free set of condiments. If you do not want to buy doubles of items, have a conversation with your family and/or housemates about scooping out a portion of the item onto a plate before spreading it onto the gluten-containing item so they only dip one time with a clean knife into the container. For other condiments like ketchup, mustard, mayonnaise and relish, consider buying squeeze bottles to prevent cross contamination from dipping into the jars.
- Cutting Boards: If you plan to thoroughly scrub a cutting board before and after each use (and you always should), it is completely safe to share with gluten-free and gluten-containing items — assuming you’re not using them at the same time. However, if you’re worried about contamination, it often helps to have two sets of cutting boards in the kitchen. Consider picking a different color cutting board for the gluten-free set, so your family can easily identify which board is safe to use. It is also most safe to use plastic or glass cutting boards whenever possible. These boards do not absorb any foods put on them and prevent gluten from sticking to their surface even after washing.
- Frying: Never fry gluten-free and gluten-containing items in the same oil. Particles from the gluten-containing items will inevitably fall into the oil and contaminate the gluten-free foods. Even if you think the oil looks clean, don’t trust it. Always use clean oil for your gluten-free foods.
- Pots & Pans: Always wash your pots and pans thoroughly between each use. As long as you’re doing a good job washing them, it is safe to cook both gluten-free and gluten-containing items in the same pots and pans. Think of it this way: If you wash your pots and pans well enough to prevent food-borne bacteria from spreading, then you’re also cleaning them sufficiently to prevent gluten contamination.
- Shelves & Drawers: Consider designating space within your kitchen storage areas for only gluten-free foods. This will help to visually separate the items that need to be kept free of cross contamination. If you need to keep gluten-free and gluten-containing items in the same shelves and drawers, always store the gluten-free products above the gluten-containing items. This method will prevent gluten particles from falling into the gluten-free products.
- Toasting: Crumbs quickly accumulate in every single toaster on earth. There’s no way to prevent it. Bread crumbles and creates a massive problem for cross contamination. If you are willing to wash your toaster in between each use, there is no reason to have separate toasters. However, if you are unable to easily wash out the toaster, or if you feel that your housemates may not be able to keep up with the demand, it may be helpful to have a designated gluten-free toaster. If you use a toaster oven type device in your home, another option is to always line the racks with foil when toasting gluten-free items. This will prevent cross contamination and limit the in-between-use washing. Just be sure to always use clean foil with each use.
- Metal or Plastic Utensils: As with each and every other piece of kitchen equipment, you cannot use the same metal or plastic utensils with gluten-free and gluten-containing items. So, don’t go stirring gluten-free gravy with the same spoon that you just used to stir cream of wheat…unless you thoroughly washed it in between! Either make the decision to always wash the utensils in between use or purchase a second set of designated gluten-free items.
- Wooden Boards, Bowls & Utensils: Never use wooden kitchen equipment with both gluten-free and gluten-containing foods. Gluten can stick in between the wood grains and even a thorough washing can’t get rid of it. Either purchase two sets or avoid wooden equipment all together if you live in a shared kitchen space.