Saturday, March 10, 2012

Coeliac Awareness Week, 13-20 March

Coeliac Awareness Week is coming up soon (next Tuesday, in fact) and I am planning a series of posts that will be all about gluten free food and gluten free cooking - the good, the bad and the surprising! Those posts will feature recipes, cooking tips and substitution ideas.

Before that starts, however, I wanted to cover a little bit about Coeliac disease for anyone who might not be familiar with it, or who may have symptoms that are puzzling them (or their doctors) where Coeliac disease might be a potential culprit. Coeliac disease diagnoses are massively on the rise in Australia, as more and more medical professionals become aware of the wide-ranging presentation of the condition, and include it in investigations for people with persistent and unexplained health complaints in many areas. More people are also requesting testing, realising that Coeliac disease is a possible source of their discomforts and maladies.

Despite the growth in diagnoses, many people with Coeliac disease are still undiagnosed. It is expected that up to 5% of Australians have the condition, but only around 1 in 5 are diagnosed (1% of the population).

Coeliac disease is an autoimmune condition. Essentially, people with the condition react when exposed to gliandin, a prolamin (gluten protein) found in wheat and other grains of the same tribe (including barley and rye and an ancient wheat variant that is now gaining renewed popularity - spelt.) Coeliacs produce an enzyme, tissue transglutaminase, which modifies the protein and the immune system then causes and inflammatory reaction in the small bowel, causing villous atrophy (that is, a truncating / flattening of the villi, tiny finger-like projections in the intestines which are responsible for absorbing many nutrients from food).

With the villi out of action, malabsorption means that Coeliacs can manifest a wide range of symptoms, many of them ambiguous. Common ones include nausea, bloating, intermittent diarrhoea, reflux and indigestion, but there are plenty of others, raging from a skin condition called dermatitis herpetiforma (scaly, red, and very very itchy) through exacerbation of nerve and skin disorders, extreme fatigue, mood disturbances, and so on. The key problem in diagnosis is that every single one of these symptoms has multiple potential causes, and there is a significant comorbidity (ie chance of having more than one thing wrong with you!) between Coeliac disease and other conditions like colitis, Crohn's disease, and IBS. Because the other conditions tend to be a bit more flamboyant in their presentation, they can mask the Coeliac - sometimes for years.

Moreover, some people - like myself, for instance - have vague, mild symptoms only, and none of them digestive. The giveaway is really in the bloodwork, which will show deficiencies well outside the normal bands for healthy bodies. Most Coeliacs are radically deficient in the minerals that are typically absorbed by the villi - iron, the B vitamins, vitamin D and calcium among them. (Chronic unexplained anaemia in the absence of bleeding is one of the red flags for a possible Coeliac diagnosis in people without other symptoms.) Long term, these deficiencies, and the prolonged gut damage that causes them, render Coeliacs many times more vulnerable to lymphoma cancers, osteoporosis, and permanent bowel malfunction. Coeliac disease might not be as spectacular a killer as peanut anaphylaxis, but, undiagnosed and unremediated, it's a potential killer nonetheless.

Coeliac disease is diagnosed via a blood test, which shows an elevation in the IgA and IgG levels (antibodies that the body produces against transglutaminase) and a gastroscopy, which visualises the small bowel and allows the surgeon to actually see the flat villi. (Gastroscopy is the gold standard test in this area). After diagnosis, Coeliacs usually are advised to meet with a dietitician to obtain advice on modifying their diets, and to have a bone density test to measure how far osteoporosis may have progressed.

The single and only treatment for Coeliac disease at the present time is: Total avoidance of gluten. The end :-) This sounds simple until you realise that gluten is in a multitude of foods, many of which are completely unexpected, and, worse, is often a contaminant even in foods that are gluten free by ingredient. Because Coeliac is an autoimmune disease, not an intolerance, it's not a matter of "a little won't hurt you." Most Coeliacs will have a reaction to gluten once they have ingested the the equivalent of 1/48th of a slice of bread. That is an extremely small amount!

Over the next week, I'll be running a series of posts on living as a person with Coeliac disease (and, more specifically, eating as a Coeliac). It can be a challenging condition to manage, because it is poorly understood and often socially stigmatised, and because there is so little margin for error (1/48th, remember...) It's easier, though, if you have resources to help you, and ways to still make your food enjoyable and nutritious.

For now, I'd simply say this - if you are a person with chronic, maybe vague, health deficits, especially if they include chronic mineral deficiencies, it is worth talking to your doctor about the possibility of Coeliac disease. A simple blood test is the first step, and may be the start of your journey to repudiating bread but gaining a great overall improvement in wellbeing. Think about it...


  1. You rock! this is an awesome overview of Coeliacs. I have shared it on twitter and my facebook.
    It is such a wonderful feeling to know there are other people out there who 'get it'!!!

    1. I'm glad to be of service ;-) I know what you mean though - it is such a relief when others really get what you're living with, isn't it?