It's just happened. You've had the blood test and the endoscopy, and your gastroenterologist has just confirmed you have coeliac disease. As you begin trying to comprehend your new life (as far as food is concerned, anyway), your ears pick up on the phrase 'we recommend you avoid oats completely for the first 6-12 months, before slowly re-introducing them'. But wait. Gluten free oats are safe! Aren't they?
Unfortunately, the answer may be a resounding 'no'. While most coeliacs can eat gluten free oats without experiencing any problems, Coeliac UK has estimated that around 5% of coeliacs have a sensitivity to a protein called avenin, which is found even in gluten free oats.
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| Gluten free oats - the silent poison in your breakfast? (Image taken from http://www.medicalnewstoday.com/articles/270680.php0) |
Is this a totally different problem to coeliac disease? Well, not exactly, no. Avenin has a very similar structure to gluten, which is also a protein. These similarities mean that if you are unlucky enough to fall into that 5% margin, you may experience your typical coeliac-related symptoms in response to ingesting oats. Worse still, avenin can damage the gut in the same way as gluten, putting you at risk of all those illnesses and deficiencies that force us onto the coeliac diet.
Because of this, general advice is to avoid oats until you can be sure your gut has healed from its pre-diagnosis damage. That way, when you begin to slowly introduce gluten free oats, it should be easier to tell if you react to them.
But does this advice go far enough? I was diagnosed in 2003, long before gluten free oats began appearing on shelves, and before we were made aware of avenin. When I finally discovered gluten free oats a number of years ago, they became a regular feature in my diet. At one stage, I was eating porridge most days of the week. After a glutening at a well-known local restaurant, I began feeling regularly unwell. Thinking the resulting damage to my gut may have made me too sensitive to tolerate the cereal that contained coeliac-safe levels of barley malt extract, I cut them out. It helped a little for a time, but I continued to suffer.
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| Biscuits - one of the many places gluten free oats may be hiding |
A week before Christmas last year, my symptoms suddenly intensified. My stomach began feeling hollow, rumbly and sick, 24 hours a day, keeping me awake at night and from eating much during the day. Tired and pale, I visited my GP in the New Year, and she diagnosed excess stomach acid. I was prescribed tablets but after three weeks, my symptoms were worsening. I returned, was given stronger pills and placed on the blandest of bland diets. Porridge, toast and butter, potatoes, rice, cheese, plain veg. No yoghurt, no fruit, not even cold water was permitted. The symptoms persisted.
Around one week later, I was reading when I realised my symptoms were startling similar to those I had before my coeliac diagnosis. I researched on the internet, then contacted Coeliac UK, who told me all I now know about avenin. It appeared that at last, I had an answer!
Relieved, I called my GP - the co-head of her practice - and related my findings and conclusion. No, she assured me. It can't be the oats. Continue on the tablets and the bland diet, and my symptoms would subside. Stunned, I didn't argue, but I did cut oats from my diet immediately. My symptoms vanished within a few days and when I came off the prescribed tablets, they didn't return. It has been six months since then and so far, I haven't had a re-occurrence.
It would be easy, in my position, to believe my GP had failed me. But this is where I feel the system has failed. No blood test was offered. I actually requested a blood test and was refused, as it hadn't been a year since my last set. A blood test may have proven damage to my gut and low iron levels. How far are doctors really educated about coeliac disease?
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| If you're avoiding oats, be sure to check ingredients. Oats MUST be declared as an allergen |
For now, Coeliac UK are campaigning to improve post-diagnosis care for coeliacs. But if you're experiencing ongoing symptoms and getting nowhere with your GP, check out the information that Coeliac UK offers about avenin and consider showing it to your GP. In the meantime, it may be worth cutting out oats completely, to see how your stomach responds. But be wary - oats and oat flour can be found not only in porridge but in gluten free cereals, biscuits and even some cakes. It can feel frustrating at limiting your diet further but oat free versions are out there and just as tasty. And after all, it's a small price to pay for better digestive health.
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