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New celiac disease guidelines emphasize follow-up care

July 24, 2019

“Slow responder” recommended as the way to classify patients who don’t immediately heal on the gluten-free diet

By Amy Ratner, Medical and Science News Analyst

Updated guidelines for diagnosing and treating celiac disease and other gluten-related disorders break new ground for some practices and confirm the use of others.

New developments in guidelines by the European Society for the Study of Celiac Disease include:

  • Emphasis on systematic follow-up care for those diagnosed with celiac disease
  • Creation of a “slow responders” category for those who still have symptoms six months to one year after diagnosis.” Currently, these patients are considered to be “non-responsive.”
  • Screening of all patients who have dental enamel defects and recurrent canker sores, with first-time recommendations on how dentists should approach patients suspected of having celiac disease.
  • Increased awareness of neurological symptoms that are related to gluten, including gluten ataxia, peripheral neuropathy, anxiety and depression. “We agree that neurological deficits may be common,” the guideline authors write.
  • A less stringent gluten-free diet might adequately treat those with gluten sensitivity compared to those with celiac disease, though this recommendation was conditional and based on a lower level of evidence.
  • A requirement that a skin biopsy be done to diagnose dermatitis herpetiformis (DH), the skin manifestation of celiac disease. Dapsone, an anti-biotic, is strongly recommended in the six to 24 months following diagnosis until the gluten-free diet is effective.
  • Specifics on diagnosis and treatment of refractory celiac disease, the more severe form of the disease, include making the distinction between type I and type II and closely monitoring the nutritional status of both types. Those with type II should be treated in centers that have gastroenterologists, immunologists and haematologists experienced in celiac disease. It’s also highly recommended that these patients be referred to clincial trials.

The guidelines, published recently in the United European Gastroenterology Journal, were based on a revision of existing recommendations and a review of evidence from celiac disease studies done over 30 years, though emphasis was given to research done since 2000. A series of recommendations, classified as “strong” or “conditional,” were made based on the quality of the scientific evidence.

The guidelines are primarily directed at physicians, but they can also help patients know what to ask of or expect from their doctors regarding diagnosis, follow-up care and more.

RELATED: Upending some beliefs about celiac disease

The authors noted that currently available international guidelines, both for children and adults were outdated and cited the abundance of new data that needed to be “critically evaluated and incorporated” in updated guidelines. The American Gastroenterological Association also recently updated its clinical practice guidelines.


Some long-standing practices continue to be recommended including case finding and testing to “unmask celiac disease,” with the use of tissue transglutaminase antibody (TTG) tests as a first step in diagnosing patients who are on a gluten-containing diet. A biopsy, with multiple samples taken, is recommended when blood tests are positive and when celiac disease is highly suspected even if blood tests are negative.

Case finding: a strategy of actively and systematically searching for at risk people, rather than waiting for them to present with symptoms or signs of active disease.


The guidelines support earlier European Society for Pediatric Gastroenterology Hepatology and Nutrition recommendations that symptomatic children be diagnosed without a biopsy if they have the genes associated with celiac disease, TTG blood test results that are greater than 10 times the upper limit of detection and positive anti-endomysial antibody tests. In the United States, experts continue to recommend a biopsy to diagnose children as well as adults.

Genetic HLA- DQ2 and DQ8 testing is recommended for those who are already on a gluten-free diet and as a first step in some patients to rule out celiac disease. The genes occur in about 98 percent of those who have celiac disease, making it highly unlikely someone without the genes would have celiac disease.  But because about 40 percent of the general population have the genes and only about 1 percent have celiac disease, the test cannot be used to diagnose celiac disease.

When someone is diagnosed with celiac disease, an appointment with a dietitian to discuss the gluten-free diet is recommended.  Additionally, newly diagnosed adults should be tested for deficiencies including iron, folic acid, vitamins D and B12 and advised to eat a high fiber diet supplemented with whole-grain rice, maize, potatoes and “ample vegetables.”

“Many patients are being diagnosed with [celiac] disease on flimsy evidence, and even more troubling, advised to avoid gluten without any scientific evidence that they need to adapt to such a difficult lifestyle change,” said an editorial about the guidelines also published in the journal.  written by “We have a responsibility to inform the general medical community of what is the best practice to protect patients from inappropriate treatments,” write editorial authors Alberto Rubio-Tapia, MD, and Joseph Murray, MD, both of the Mayo Clinic in Rochester, Minnesota.


The update guidelines focus on the need for follow-up of diagnosed patients, something that is often neglected by celiac disease patients and their doctors. Recommendations for follow-up with a gastroenterologist or physician with special expertise in celiac disease include monitoring of symptoms, adherence to the gluten-free diet and assessment for complications.

Blood tests should be used to monitor how well someone is following the gluten-free diet, though the authors noted that normal anti-TTG levels at follow-up do not predict whether the intestine is healed. A follow-up biopsy is recommended when someone does not respond to or has a relapse despite adhering to the gluten-free diet. Lab tests should be run to verify that any deficiencies found at diagnosis have returned to normal. A dietitian knowledgeable about celiac disease should review and revise the diet to exclude gluten contamination, especially when someone is a “slow responder.”

RELATED: Lack of follow-up care in celiac disease is common

Patients who are at high risk for osteoporosis should have a DEXA scan to measure bone mineral density. The scan is recommended at diagnosis for those who have had a long delay in diagnosis or show the potential for having bone disease. Otherwise, the scan is recommended at follow-up when a patient is 30 to 35 years old, with repeats every 5 years. Scans every two to three years are advised for those who have low bone density, ongoing intestinal damage or who don’t follow the gluten-free diet adequately.

Patients who are diagnosed with DH are also treated with the gluten-free diet and, initially, dapsone. Gastrointestinal symptoms typically resolve first, the skin lesions take an average of one to two years to completely heal. Dapsone is recommended until that occurs, though the guidelines note that some patients continue to need to use the antibiotic for up to 10 years. Side effects from dapsone require that patients using it be carefully monitored. If it fails or adverse side effects develop, several sulfa drugs may work as alternatives and topical steroids can be used.

Also, the guidelines recommend that at-risk first degree family members should be tested for celiac disease and any who have positive results or who develop symptoms should have a biopsy.

Children should be followed up every three to six months in the first year after diagnosis, and then annually after symptoms have resolved and blood test results are normal.

For adolescents, follow-up should also include the gradual transfer from a physician who specializes in children to one who sees adults. The guidelines recommend that the transfer include at a minimum written information on diagnosis, previous follow-up, dietary adherence and other diseases or conditions.

“The transition from pediatric to adult care should be a collaborative process involving patients, their parents or caregivers, the physician and the dietitian,” the authors write.

Slow responders

The guidelines discourage the use of “non-responsive” to describe patients who don’t completely recover on the gluten-free diet after a year. They note that 7 to 30 percent of adults with celiac disease continue to have symptoms or laboratory abnormalities despite being on the diet. But most “will improve over time on the gluten-free diet or have another treatable cause for their complaints,” the authors write.

They attribute “purposeful or inadvertent” ingestion of gluten as the most common cause of slow response, “being identified in 30 to 50 percent of cases.” Consequently, an evaluation of the diet is an important step after a review of biopsy and blood test results to be sure the initial diagnosis was correct. If so, additional TTG blood tests and tests for gluten peptides in urine or stool could be helpful, according to the guidelines. But normal blood test results do not rule out the possibility of intermittent or low-level gluten exposure sufficient to cause persistently active celiac disease, the authors write.

If it’s determined that diet is not the cause of the slow response, a follow-up biopsy is recommended. Nonresponsive or refractory celiac disease should be considered.

Dental diagnosis

If celiac disease is developing while the permanent teeth are forming in children under 7-years-old, dental enamel defect can occur. “We think this forms a window of opportunity to recognize celiac disease,” the guideline authors write.

They recommend that dentists consider celiac disease when dental enamel defects or recurrent mouth ulcers or both are found. Tips for dentists include asking patients with defects or ulcers about other symptoms of celiac disease, including abdominal pain, diarrhea, weight loss, poor growth, anemia and fatigue. Patients should also be asked about related other autoimmune conditions, including type 1 diabetes and thyroiditis since they increase the risk of celiac disease. Celiac disease should also be added to the list of disorders dentists ask about during family history screening. If a dentist suspects celiac disease, the guidelines advise consulting with the patient’s primary care doctor. Finally, dentists are urged not to recommend a gluten-free diet to a patient suspected of having celiac disease prior to a definitive diagnosis.

Neurological issues

“In established celiac disease, a 10 to 22 percent prevalence of neurological dysfunction is reported,” the guidelines note. “Also, these complications may be the prime presentation of celiac disease and [gluten sensitivity].” Still, neurological symptoms of celiac disease “may easily go unrecognized, the authors write.

They recommend that awareness of celiac disease in neurology outpatient clinics be improved. Neurological symptoms can either precede or follow development of celiac disease, they note, adding that celiac disease patients might be more susceptible to neurological problems if they continue to consume gluten.

Gluten ataxia is the most frequently reported neurological symptom reported in relationship to celiac disease, with a 20 percent prevalence among all patients with ataxias. While the gluten-free diet does not always lead to improvement, it is possible that some positive change will result from following the diet, the authors note.

The effect of the gluten-free diet on peripheral neuropathy is “disappointing,” according to the authors, but a strict gluten-free diet can lessen overall pain and lead to a better quality of life.

Overall, more data are needed to clarify the gluten-brain link and to develop preventative and treatment strategies, the authors write.

Gluten sensitivity

A multi-step process of diagnosing gluten sensitivity is recommended since there are still no definitive tests for the condition. Steps include testing to exclude celiac disease and wheat sensitivity and determination of baseline symptoms all while on a gluten-containing diet. This is followed by a six-week gluten-free diet trial. If symptoms don’t improve, gluten sensitivity should be excluded.

FODMAPS:  Fermentable Oligo-saccharides Di-saccharides Mono-saccharides, a type of carbohydrate found in wheat and other foods. ATIs: amylase-trypsin inhibitors, a different family of proteins found in wheat and other grains

Fructans in FODMAPS and ATIs may also be the cause of gluten sensitivity, the authors write.

What’s ahead

Looking forward, the authors note that new, non-dietary treatment options being studied could help manage symptoms, especially when someone is inadvertently exposed to gluten, often through cross-contact when dining out. Additionally, they write, effective replacement of the gluten-free diet could “greatly enhance the quality of life of patients struggling with the diet.”

In their editorial about the guidelines, Rubio-Tapia and Murray evaluate the role of the new guidelines by writing, “It is the responsibility of the entire [gastroenterology] profession to share these recommendations widely. To do otherwise is to abdicate our responsibility to the field and to our patients.”

You can read the full guidelines here.


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