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Celiac Disease (FAQ)

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Introduction

The Questions and Answers that follow aim to provide an introduction to celiac disease (CD) for parents and other family members. Following those, we offer links to selected resources for more information and support and a list of valuable services.
Note that we use the term doctor to refer to physicians, nurse practitioners, physician assistants, and other licensed clinicians who may care for your child.
More information about many topics relevant to children with celiac disease and many other chronic conditions and their families can be found in the left menu. Detailed information aimed at primary care doctors can be found in our Celiac Disease module.

What is celiac disease and what causes it?

Celiac disease (CD) is a chronic genetic disease, the predominant feature of which is reversible small intestinal mucosal inflammation. This inflammation is triggered and perpetuated by dietary exposure to the gliadin peptide contained in gluten and found in wheat, barley, rye, and possibly oats. Although the exact cause is unknown, you are more likely to manifest celiac disease if you have a family member with celiac disease or with another autoimmune disease, such as type 1 diabetes, rheumatoid arthritis, and some kinds of thyroid disease. You are more likely to have celiac disease if you are of Northern European ancestry. To manifest celiac disease, one must have the genetic predisposition, be exposed to gluten, and then be exposed to a poorly understood environmental trigger.

What are the symptoms of celiac disease?

Symptoms that are primarily gastrointestinal and growth related include:
  • chronic diarrhea
  • flatulence
  • distention
  • weight loss, or failure to gain expected weight
  • deceleration in linear growth or unexplained short stature
  • constipation
  • abdominal pain
  • indigestion or nausea and/or vomiting
  • bloating or distention
  • anorexia
Celiac disease is a multi-system disorder, often involving non-gastrointestinal symptoms/signs. These can vary considerably, some being related to secondary nutrient deficiencies, and may include:
  • unexplained iron deficiency anemia resistant to iron supplementation (a common presenting sign)
  • delayed puberty, infertility
  • fatigue
  • protein-calorie malnutrition
  • recurrent aphthous stomatitis
  • defects in dental enamel
  • vitamin deficiencies
  • osteoporosis
  • other autoimmune endocrine disorders, such as thyroiditis
  • neurological symptoms, including ataxia and peripheral neuropathy.

How is it diagnosed?

Diagnosis of celiac disease is made by blood testing, although an upper gastrointestinal endoscopy (EGD) needs to be done to confirm the diagnosis of celiac disease. During the endoscopy, a small tissue sample (biopsy) is taken from the small bowel. In celiac disease, this tissue will look inflamed and damaged when it is looked at under the microscope.

What is the prognosis?

Complete gluten restriction should result in complete cessation of the inflammatory response and subsequent normal reproductive capability and lifespan. However, complete gluten exclusion is difficult to maintain for a lifetime. Ongoing inflammation, even in the absence of symptoms, causes chronically increased metabolic demands, malabsorption of macro- and micro-nutrients, and increased cell proliferation, with risk of intestinal oncogenesis, particularly small bowel lymphoma.

What is the risk for other family members or future babies?

Four to 12 percent of an affected person's first-degree relatives will also have the disease.

What treatments/therapies/medications are recommended or available?

Treatment of celiac disease consists of complete elimination of gluten-containing foods from the diet and is monitored by clinical response (including growth response), serologic marker response, and small intestinal mucosa histologic response.

How will my child and our family be impacted?

Untreated, a child with celiac disease may have growth problems, diarrhea and bloating, iron deficiency anemia, and other, possibly quite severe, problems. Treatment however, is not simple. It involves avoidance of wheat, barley, rye, and possibly oats, usually for life. This diet is more complicated than the average American diet and may be more expensive, although as many grocery stores now have gluten-free sections it is easier to use than ever before.

Is there any problem with putting my child on a gluten-free diet before a biopsy has proven that they have celiac disease?

There are several reasons not to put a child on a gluten-free diet without medical confirmation that he/she has celiac disease. Perhaps most importantly, a biopsy may be falsely negative if performed when the child is not being exposed to gluten. The gluten-free diet is very restrictive and can be difficult and expensive. Without careful nutritional guidance, children on the diet may not receive all the nutrients they need, particularly some vitamins and other elements that are essential for growth. Some children on the gluten-free diet will become obese if their growth is not closely monitored. Your physician(s) and a dietician should be involved in starting and overseeing the diet.

Does the gluten-free diet treat autism?

There is no evidence that the gluten-free diet helps children with autism. For more information, see [Millward: 2008].

Resources

Information & Support

Where can I go for further information?

For Parents and Patients

Support

Celiac Disease Foundation
Provides support, information and assistance to people affected by celiac disease/dermatitis herpetiformis.

General

Celiac Disease (MedLinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

National Celiac Association
Information about celiac disease, current research and trials, diet, dermatitis herpetiformis, and food labeling. Tips and educational games for children.

Celiac Disease (NDDIC)
General information and links to further sources of information; National Digestive Diseases Information Clearinghouse, National Institutes of Health.

Gluten-Free Diet Guide (celiac.com) (PDF Document 7 KB)
Sample list of gluten-free foods; Practical Gasteroenterology.

Celiac Disease Food List (Celiac.com)
Extensive list with links to commercial sources for gluten-free products.

Services for Patients & Families in Nevada (NV)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Studies

Celiac Disease in Children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Authors & Reviewers

Initial publication: March 2012; last update/revision: August 2019
Current Authors and Reviewers:
Author: Lynne M. Kerr, MD, PhD
Funding: The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.

Page Bibliography

Millward C, Ferriter M, Calver S, Connell-Jones G.
Gluten- and casein-free diets for autistic spectrum disorder.
Cochrane Database Syst Rev. 2008(2):CD003498. PubMed abstract / Full Text