The Gluten-Free Agency

1 Purpose. 360 Degrees

Celiac Disease & The Gluten-Free Consumer

Gluten-Free FamilyApproximately 1 in every 133 North Americans has celiac disease. And only about 5-10% of these have been officially diagnosed. For lack of a better label, this celiac community is close knit.

Associations and their local chapters share ideas and communicate within consumer blog sites. It’s a small but vocal and motivated minority. For marketers of gluten-free products, they represent an enormous opportunity.

The numbers don’t add up. Despite the tiny minority of consumers living with celiac disease, market research estimates 15% of North American households are consuming gluten-free foods! Many people are choosing a gluten-free diet. They find gluten-free foods easier to process.

And herein lies another huge opportunity for gluten-free marketers!

Our research with gluten-free consumers suggests that the two most important issues for these consumers are:

  • Obtaining and understanding product ingredient information (89%)

  • Obtaining recipes (57%)

The top resources for gluten-free information are:

  • Grocery stores with a health food section (46%)

  • Cookbooks for people with celiac disease (43%)

  • Blog/podcast sites  (38%)

  • Health food stores (35%)

  • Magazines on allergy & food sensitivity (29%)

Popular Websites for Gluten-Free Consumers

Some of the more popular North American websites on gluten-free products and celiac disease are:

Demographics for Key Celiac Websites in North America

A profile of the target groups that frequent these sites is shown below. You’ll notice it varies significantly by age.

Demographics of key celiac websites

Demographhics for key celiac websites

Demographics for key celiac websites

Gluten-Free Consumer Information Needs

The kinds of information that gluten-free and or celiac patients find helpful are:

Helpful Gluten-Free Information

Score out of 100

Product ingredient lists


Lists of new gluten-free foods


Product Samples


Celiac seal of approval


Tips on restaurants to eat in with gluten-free dishes


Recipe ideas


Store Locations


Celiac Disease Myths Abound

There’s a lot of misinformation out there. Here are some persistent false ideas that are sometimes promoted as true by well meaning individuals in the celiac community. We believe it’s important to clear the air and debunk them.

Celiac Disease Myths AboundMyth #1: Spelt and kamut are safe wheat alternatives for celiac consumers.

FACT: This is completely false. Spelt and kamut are genetic siblings of wheat and they definitely do contain the problematic proteins that celiac consumers must avoid.

Myth #2: Celiac consumers must avoid distilled vinegar.

FACT: This is a common myth. Distilled vinegar can be made from wheat but the distillation process removes all of the large, heavy molecules, like proteins so the final product is gluten-free.  However malt vinegar is made from barley, and is only fermented -not distilled, so it must be avoided on a gluten-free diet.

Myth #3: All oats are safe on a gluten-free diet.

FACT: Most commercial oats grown in North America are contaminated with wheat, rye or barley. Fortunately there are specialty companies that produce pure, uncontaminated oats that are grown on dedicated fields; and harvested, transported and processed with dedicated equipment. For more information about gluten-free oats visit

MYTH #4: Celiac disease is rare in Canada and the United States.

FACT: Research suggests that about 1 in 133 Americans has celiac disease. It affects not only them but their loved ones who eat with them daily. Growing awareness of celiac disease, earlier diagnosis and excellent blood screening tests point to the likelihood of similar prevalence figures in Canada.

MYTH #5: Celiac disease is easily recognized.

FACT: Celiac disease can be difficult to recognize since symptoms are often vague and nonspecific. Symptoms can vary greatly from person to person and can appear at any age.

Blood TestMYTH #6: Celiac disease can be diagnosed by a simple blood test.

FACT: Blood screening tests (EMA or tTG) may suggest that a person has celiac disease, but they do not replace the need for an intestinal biopsy. Intestinal biopsies are the only definitive means of diagnosing celiac disease.


MYTH #7: An intestinal biopsy is a major surgical procedure requiring general anesthesia.

FACT: This procedure is performed under sedation by an experienced specialist and is usually done as an outpatient procedure. In children, sedation or anesthetic may be used.

MYTH #8: Celiac disease and dermatitis herpetiformis are unrelated.

FACT: Dermatitis herpetiformis (DH) is celiac disease of the skin. Persons with dermatitis herpetiformis may or may not have intestinal symptoms characteristic of celiac disease, but a biopsy will show they have an abnormal small bowel with damaged villi. Treatment of dermatitis herpetiformis requires a gluten-free diet for life and medication to help relieve the burning and itching of the skin rash.

MYTH #9: Celiac disease is a childhood disease.

FACT: Celiac disease is an inherited condition and symptoms may develop at any age after the ingestion of gluten.

MYTH #10: Celiac disease can be outgrown.

FACT: Celiac disease is a LIFE-LONG disease. Eating food containing gluten will continue to damage the intestinal lining and will increase the risk of developing associated conditions and other complications. The only known treatment for celiac disease is a gluten-free diet for life.

WheatMYTH #11: A person with celiac disease needs to avoid only wheat and wheat products.

FACT: Effective treatment of celiac disease requires strict exclusion of gluten for LIFE. The gluten found in various wheats (e.g., durum, kamut, spelt), and in rye, barley, and triticale, must be avoided. Consultation with a registered dietitian is recommended to learn about the hidden sources of gluten and how to prepare a nutritious, well balanced diet while avoiding gluten.

 MYTH#12: A trial of the gluten-free diet is a good idea prior to testing for celiac disease.

FACT: A gluten-free diet should not be started until the diagnosis of celiac disease has been made by a small bowel biopsy. A trial of the gluten-free diet before the blood tests and the biopsy allows the villous damage to improve which may make the interpretation of the tests inconclusive and further delay the diagnosis of celiac disease. Moreover, patients may respond clinically to dietary changes for reasons other than celiac disease.

MYTH #13: A person with celiac disease can tolerate a small amount of dietary gluten once in a while.

FACT: Even though some people with celiac disease may seem to tolerate gluten, damage is still being done to the intestinal lining when gluten is eaten. Treatment for celiac disease is a strict gluten-free diet for life.


MYTH #14: After diagnosis and adherence to a “gluten-free diet”, a person with celiac disease can be considered “cured” and needs no further medical or dietary supervision.

FACT: Continued medical and dietary supervision is needed to prevent and treat anemia, osteoporosis and other nutritional deficiencies. Early recognition and therapy of associated diseases such as diabetes and thyroid disease is important. A follow-up with a dietitian is essential to keep up-to-date with changes to the gluten-free diet (e.g., new products, recipes and resources). Your pharmacist can help identify which drugs may contain gluten.


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