Celiac Disease
On this Page
- Introduction
- What is celiac disease and what causes it?
- What are the symptoms of celiac disease?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
- Is there any problem with putting my child on a gluten-free diet before a biopsy has proven that they have celiac disease?
- Does the gluten-free diet treat autism?
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.
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
- 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 (CD/DH).
General
Celiac Disease (MedLinePlus)
Brief description of Celiac Disease and links to many reliable sources of information; compiled and maintained by the National
Library of Medicine.
Celiac Sprue (Support) Association
Information about CD, 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.
The Gluten Free Diet Guide (
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 in New Mexico
For other services related to this condition, browse our Services categories or search our database.
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