We recently had an email exchange with a father whose five-year-old coeliac son had had a reaction from eating, they believed, some 100% gluten-free porridge oats from a well-known oat company.
The child was obviously very sensitive and his parents extremely caring and careful – and therefore incandescent with rage that such a large company should have, as they perceived it, been either so careless or so duplicitous as to have sold a product which patently did not live up to its claims. While one can absolutely understand their upset and concern and their desire bring the company to task and to warn other parents/coeliacs, the situation is unlikely to be as clear-cut as they saw it.
Ten years ago freefrom products could often not be entirely trusted to be totally free from contamination – far less was known and understood about freefrom manufacturing processes and many were made by small companies who might not have had access to, or been able to afford, sophisticated allergen tests. But these days, freefrom is big business. There are a lot of big players in the game and they spend a lot of money on ensuring both that their processes do as much as is humanly possible to eliminate any possibility of contamination, and on testing the resulting products to ensure that they are free from the relevant allergen. They do so not only out of a desire to deliver what they claim on the pack – but because the commercial/financial fallout from a customer getting a bad, or even fatal, reaction from one of their products containing an allergen is so damaging that they go to very great lengths to avoid it. This is not to say, of course, that accidents do not happen and that cowboys do not exist. Freefrom products do get contaminated – but these are relatively rare events.
In the case of these particular porridge oats, this was a big company and one which had only recently taken the major step of declaring its oats to be gluten free so although it was possible that they were contaminated, the odds are against it. The father wanted to have the oats analysed as he was convinced that their kitchen was entirely free from gluten and therefore whatever his son had reacted to had to have come out of the porridge oat pack. But he was advised against it as the pack had already been opened and therefore contamination from some outside source could not be ruled out. This was very frustrating for him – and could be seen as a bit of a let-out for the manufacturer as, effectively, it means that no product which has apparently caused a reaction can ever be tested and blame apportioned as it will always have been opened and therefore there will always be the possibility of contamination from elsewhere.
However, could there have been another issue here? Was his son reacting not to any lurking, contaminating wheat gluten, but to the oats themselves? It is only relatively recently that oats made it onto the ‘allowed food’ list for coeliacs – based, as far as I am aware, on research carried out mainly in Finland in the 1990s which showed that over a five year period, eating oats did not appear to have any detrimental effect on moderately sensitive coeliacs. This, in turn, was based on the fact that accepted wisdom declares that it is the protein fraction gliadin, found in wheat, barley and rye, that causes the autoimmune reaction which characterises coeliac disease. Oats do not contain gliadin but an look-alike protein fraction called avelin so it is assumed that neither they, nor any of the other grains which have similar, but not identical, structures, will cause problems.
But what if this assumption is not actually correct? There certainly are people diagnosed with coeliac disease who do not improve on a diet which excludes wheat, barley and rye, although they are relatively few in number. Micki Rose, who is currently investigating the role that different non-wheat/barley/rye grains may play in digestive malfunction (and will, I hope be writing about it for us in the new year) says that she has found alarmingly little research into the effects that other grains might have on human digestion. And she is not the first to question the wider role of grains in digestive disease.
Back in the early 1960s Elaine Gottshall’s seven-year-old daughter was suffering from ulcerative colitis so severe that she was bleeding all day and suffering delirium all night. A chance encounter with a friend in a grocery store took her to 92-year-old Dr Sidney Haas who put her daughter on an entirely carbohydrate free diet. Within ten days her neurological symptoms and gone and within two years her intestines had healed. Elaine Gottschall took on Dr Haas’ mantle and, in due course, obtained masters’ degrees in biology, nutrional biochemistry and cellular biology and wrote one of the most influential health books of the mid 20th century, Breaking the Vicious Cycle.
Elaine Gottschall’s thesis is that undigested carbohydrates can cause an overgrowth of harmful bacteria in the gut which produce toxins which damage the lining of the small intestine resulting in many of the symptoms typical of ulcerative colitis, Crohn’s, coeliac disease etc – pain, bleeding, malabsorption of nutrients, impairment of immunity and so forth.
Her diet therefore excludes all carbohydrates with the exception of simple carbohydrates (such as fructose and glucose) which are broken down in the first part of the intestine. All disaccarides which contain two molecules (sucrose or lactose for example) and all starches (such as those found in grains and potatoes) that are never fully digested in the gut, are to be avoided.
The diet is, of course, a great deal more arduous that the standard gluten-free diet. All food has, effectively, to be home cooked; honey and stevia are the only sweeteners allowed and the only flours that can be used are almond and banana… However, if it works….
To buy the book or learn more about the Specific Carbohydrate Diet check the website at www.breakingtheviciouscycle.info
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Micki
Yes, Michelle, the article is on its way and this incident does not surprise me in the least, sadly. The original research has turned into a bit of a monster and I am currently putting together all the stuff I have learned into a practical article (and new ebook) about gluten in grains and non-coeliac gluten sensitivity. It is in no way just limited to digestive disorders. In fact, I am coming to the conclusion that coeliac disease is just ONE condition caused by true gluten sensitivity; there are many others. The gluten problem comes first, the coeliac disease second, if you see what I mean. Fascinating, and potentially life-changing stuff! Watch this space.