What is it and how do I know if I have it?

Smell the delicious scents wafting out of a French bakery…enjoy complex flavors in a chewy multi grain country bread.  What about some of our favorite foods from different cultures… a tobouli salad made with wheat bulgar, a falafel in a whole wheat pita bread or a plate of spaghetti made with whole wheat pasta. All of these are highly nutritious, BUT if you have Celiac disease, they are off limits. Yes, you can make gluten free alternatives, but you just can’t walk down the street and eat at whatever restaurant or food stand that looks and smells good.

Celiac disease is an auto-immune, inherited disease that causes intolerance to the protein gluten.  Up to 1 person in every 100 in the United Sates, and Europe is thought to have the disease; higher incidence has been found in some parts of Africa (1, 2).  Celiac Disease can present at any age and has a wide spectrum of clinical symptoms.  The “classic” presentation of celiac disease is a young child with diarrhea, bloating and poor weight gain and growth; —now, only about 9% of new cases of celiac disease are in children and less than 50% of patients present with diarrhea. The average age of diagnosis is about 40 years of age, with 20% of initial diagnoses in adults over 60 years of age. (1)

Common symptoms associated with celiac disease (1,2, 3):

  • Gradual onset of diarrhea, abdominal pain and bloating that seem to be related to food.
  • Symptoms of irritable bowel syndrome, abdominal pain, bloating and altered bowel habit without diarrhea or malabsorption — at least 2.6% of individuals with IBS-constipation subtype have been shown to have Celiac Disease—some studies suggest much higher incidence with IBS. (1, 2)
  • Unexplained nausea and vomiting. (1)
  • Dermatitis Herpetiformis (DH)—an itchy, blistering rash on the trunk and limbs; anyone with a confirmed diagnosis of DH has celiac disease.
  • NO GI or skin  symptoms at all!

Non-GI  or skin symptoms that are often caused by undiagonosed Celiac Disease (1, 2, 3, 4, 5)—

  • Anemia (iron and/or folic acid, vitamin B12 deficiency types)
  • Osteoporosis, poor bone mineralization
  • Abnormal liver function.
  • Depression and low mood.
  • Chronic aches and pains with no apparent cause.

Risk of developing celiac disease is significantly increased by (1:

  • First degree relative (parent, offspring, sibling) with a diagnosis of CD–risk is 10%
  • Diagnosis of other auto-immune disorders such as with type 1 diabetes or lupus—risk is 4 to 7%
  • Down Syndrome—3-10%.
  • Weight loss is uncommon—at least 30% of patients are overweight at time of diagnosis.

Contrary to traditional belief, the majority of people who are diagnosed with Celiac Disease are not underweight or experiencing weight loss. About 30% of adults are overweight at time of diagnosis and tend to lose weight when they follow a gluten free diet. (1)

Diagnosis of celiac disease:

  • Gold standard is small bowel biopsy—several samples of tissue taken from the duodenum (first part of the small intestine).  Damage to the wall of the small intestine varies in severity between individuals with Celiac Disease, thus at least 4 samples throughout the duodenum are needed to confirm CD, especially in less severe cases.
    • Blood tests to look for increases in antibodies that rise with celiac disease:  Immunoglobulin A Tissue Transglutaminase (IgA-TTG), and IgA endomysial antibodies (IgA-EMA); testing for total IgA must be done at the same time. About 2.5% of individuals with CD have IgA deficiency (only 0.25% of the general population has this). IF a person has IgA deficiency, then the IgA TTG and EMA tests can give a “false negative.”
    • A person must be eating gluten at the time of either small bowel biopsy or blood tests (equivalent of 4 slices of bread per day for 2 to 4 weeks)—damage to the small intestine is healed and blood tests return to normal with a gluten free diet.
    • Genetic testing can be done to rule out celiac disease, especially if gluten has already been removed from the diet, or if a person has total IgA deficiency. (1,4) The absence of the genes HLA DQ2 and HLA DQ8 and DQBI*02 rules out CD. In those cases, other causes of Celiac Disease like symptoms need to be explored.

Why it is important to know if a person has Celiac Disease before starting a Gluten Free Diet:

  • If celiac disease is diagnosed, it will be important to remove ALL gluten from the diet to avoid long term problems such as chronic anemia and osteoporosis. If a person has ruled out celiac disease, but has a non-celiac disease allergy or intolerance to gluten, he may be able to tolerate small amounts occasionally, without significant health effects.
    • If a person has ruled out celiac disease, but has similar symptoms, she could be suffering from another disorder that definitely needs to be treated, such as: infective gastroenteritis, bacterial overgrowth, lactose intolerance, giardia, tuberculosis, Chrohn’s disease, soy protein intolerance, intestinal lymphoma, HIV enteropathy or many others. (1)

A gluten free diet (free of all foods made with wheat, rye or barley, or their byproducts) is not easy to follow in any Western society. The biggest nutritional pitfall of a gluten free diet is decreased fiber intake. Other nutritional issues can be increased intake of refined carbohydrates and sugars, and saturated fats in foods used to replace traditional breads, cereals and other grain products. A gluten free diet can be very balanced and healthy—there are many resources available to help a person develop a healthy and tasty gluten free eating plan. The first step is to see a Registered Dietitian to determine your individual nutritional needs, and help you meet them without gluten.

Lori Brizee MS, RD, LD, CSP is available to see clients at the Athletic Club of Bend on Tuesday mornings between 7:30 and 10:00 am, as well as in her home office. Contact: [email protected], home office phone: 541.388.0694; website: loribrizee.com. Lori is certified by most health insurance companies serving Central Oregon as well as Medicare and Oregon Health Plan.

Lori is also available for online or video chat consultation–payment by credit card at time of consultation–$34 per 1/4 hour or $136 per hour.


1)      Ciclitira, PG, Dewar DH, Maclaughlin SD, Sanders DS, British Society of Gastroenterology; The Management of Adults with Coeliac Disease.  http://www.bsg.org.uk/sections/small-bowel-nutrition-articles/bsg-guidance-on-coeliac-disease-2010.html

2)      Van Heel DA, and West J, Recent Advances in Coeliac Disease. Gut,2006, volume 55, pp 1037-1046. Doi:10.1136/gut.2005.075119

3)      El-salhy M, Lomholt-Beck B, and Gundersen D, The prevalence of celiac disease in patients with irritable bowel syndrome. Molecular Medicine Reports, May-June 2011, vol 4, pp 403-405

4)      Volta U and Villanacci V, Celiac disease: diagnostic criteria in progress. Cellular & Molecular Immunology, (2011) vol 8; pp 96-102

5)      Verdu EF, David A, Don-Wauchope AC, Testing for gluten-related disorders in clinical practice: The role of serology in managing the spectrum of gluten sensitivity. Canadian Journal  of Gastroenterology. April 2011, vol 25, pp 193-197

6)      Setty M, et al, Celiac Disease: risk assessment diagnosis, and monitoring. Molecular Diagnosis and Therapy, September 1 20089; vol 12, pp 289-298. doi: 10.2165/1250444-200812050-00003