Why Are Most Celiac's Middle Aged Women?

I once read in a forum by a brave restaurateur that he was puzzled why most people who asked for gluten free food were middle aged females. He suggested that maybe it was just a trend factor – eating to impress.

My thoughts on this view is that:

•             many doctors don't test for celiac disease or fully believe in its severity.

•             Women are more persistent at resolving their health issues, so more women may be diagnosed with celiac disease than men.

•             Women may be more inclined to admit that they want gluten free food when eating out.

•             Men may eat at restaurants where they know they can get gluten free food, or if not they may eat foods that are unlikely to have gluten in them, like steak and salad with no dressing.

•             Celiac Disease still remains very poorly diagnosed (80% undiagnosed in Australia and 95% in America), so the disease seems much rare than it actually is.

Most of the information on age and sex profiles of the 'average celiac' seems to be anecdotal or on small sample sizes. We (Gluten Free Pages) ran a stand at the Melbourne Gluten Free show in October 2009, and the overwhelming demographic of the people visiting our stand were woman, around middle age.  Many of them were either with other women or their families.

Current celiac demographics:

Most coeliac reference sites agree that celiac disease is not age-dependent and can become active at any age. "It is thought that the potential for CD may be in the body from birth and while onset is not confined to a particular age range or gender … more women are diagnosed than men." Ref 1

The reason that more middle aged women seem to be celiac may be that the average time from onset of symptoms to diagnosis is often over ten years. In a traditional family situation, more women may be the primary food shopper or person who orders for a family at restaurants.

The trigger for celiac disease may also take until middle age to present itself. Some of the common triggers are thought to be " environmental, emotional or physical event in one's life. Such as: adding solids to a baby's diet, going through puberty, enduring a surgery or pregnancy, experiencing a stressful situation, catching a virus, increasing gluten products in the diet, or developing a bacterial infection to which the immune system responds inappropriately." Ref 1

More information on celiac demographics is available for Americans. "Prevalence of CD in the average American is 1 in 133, In people with related symptoms: 1 in 56; In people with first-degree relatives; (parent, child, sibling) who are celiac: 1 in 22; In people with second-degree relatives (aunt, uncle, cousin) who are celiac: 1 in 39;  Estimated prevalence for African-American, Hispanic-American and Asian-Americans: 1 in 236."  (ref 2) It has been found that celiac disease is rare among people of purely African-Caribbean, Japanese and Chinese ancestry.

As specifics about the age and sex profile of celiac are very rare, here is a novel way of seeing what the bias might be. Consider that those that are diagnosed and gluten intolerant are likely to be searching for information on celiac disease and gluten free foods. With a high internet penetration in most advanced countries and a good internet usage across most age groups, except potentially the very elderly, statistics on internet search age and sex demographics are likely to mirror the age and sex profiles of those people diagnosed and who are gluten intolerant.

Alexa provides a demographic snapshot of visitors to major sites and the following graphs and data are taken for three popular celiac and three gluten free websites.

Site............................Global ranking

www.celiac.com..................48,590

www.celiac.org..................486,285

www.celiaccentral.org...........559,962

www.glutenfree.com..............168,693

www.gluten.net..................855,378

www.glutenfreeda.com............996,079

Visitor Demographics

Age:  All sites have a strong bias towards usage by older age groups. All sites were very under represented for the 18-24 age groups. Most (except coeliac.com), show a strong bias towards visitors from the 55 to 64 age group being ‘over represented'.

Education: Compared to the average internet user, the visitors for half the sites have a strong bias towards visitors having a college background, but are often under represented from Graduate school backgrounds.

Gender: All sites show a VERY strong bias towards being used more by females.

Children: Visitors tend to have a neutral response to having children. Unlike the other demographics, this measure shows the most variance among sites. The three celiac sites tended to have a slight bias towards visitors not having children, while two of the gluten free sites had a swing towards visitors having some children and one site (Glutenfreeda.com) had a very strong demographic of No children.

Browsing location: Most sites tended to have a strong bias towards visitors accessing the site from home rather than from work.

CONCLUSIONS

From a very small sample of three of the largest celiac sites and three large gluten free sites, it appears that compared to the general internet population that visitors have a bias towards being older (55 to 64) and female. Note that this age demographic may not make up large proportion of total web users, so in absolute terms the average visitor may be somewhat younger.

Users tended to have a college background (rather than the higher graduate level) and browse from home. This suggests that the middle aged female visitors education level may be linked to their discovery of their celiac disease and could work from home or be housewives.

At the moment due to food purchasing and family eating patterns it appears that eating places may perceive that the average celiac seems to be middle aged women.

Celiac disease affects all ages and most races so as diagnosis becomes more wide spread and more doctors are aware of it, the age spread and apparent gender bias will broaden.

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References

Ref 1      http://www.csaceliacs.org/celiac_defined.php