An excellent and useful post from What Allergy – check it out. Fill in the gaps with Sarah Merson’s article from a couple of year’s ago on the FM site. If you suffer from ME/CFS, Interaction (the magazine of Action for ME) also had an excellent article a few months ago about ways that you could achieve a successful sex life despite the fatigue and pain which comes with the condition.
I was delighted to see that in response to my suggestion that we should all harrass Pizza Express to provide gluten-free pizzas, not only had Jeemboh emailed Pizza Express, but they had replied!
They make the perfectly valid point that the environment in a Pizza Express restaurant is, inevitably, going to be heavily contaminated with wheat flour, and therefore gluten, so that their restaurants would be unsafe for any customer who was sensitive to either.
This is, of course, perfectly true but, as so often happens, it assumes that everyone who might want to eat a gluten-free pizza suffers from the same degree of sensitivity. But this is far from the case. Gluten-avoiders run from the health conscious who have no problems with gluten at all but feel they would be healthier without it to those who are so sensitive that ingesting the tiniest bit of flour carried in the air will make them seriously ill – with many other gradations in between.
While there is no way that anyone who is acutely sensitive to gluten should go anywhere near a Pizza Express restaurant, there are far more people whose sensitivity is of a far lower order and, as long as they do not actually eat a wheat based pizza, they will suffer no ill effects from coming into passing contact with a little wheat flour.
Surely the approach therefore should be that Pizza Express should offer a gluten-free pizza on their menu (assuming of course that they can make one which meets their exacting gastronomic standards!) but that it should be accompanied by a very visible warning that although the pizza base itself may be gluten free it is cooked in an environment which handles wheat flour/gluten and is therefore likely that it may be contaminated with small amounts of wheat flour/gluten. This way wheat/gluten sensitive customers can decide for themselves whether or not the risk is one that they are prepared to take.
To be fair to Pizza Express, they do offer to top your own gluten-free pizza base with their toppings if you wish to take it in with you but – how much easier would it be if they just provided you with one! Anyhow, for those who are seriously sensitive, even taking your own base would be fraught with danger as it will be cooked in an oven along with wheat-based pizzas and the risk of contamination will inevitably be very high.
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
For Micki’s article, sign up to the fortnightly FoodsMatter e-newsletter where it will be flagged.
I was reminded by a very helpful post on Micki Rose’s blog yesterday that the SAD season is upon us again. Do have a read.
For those who are not acquainted with SAD, although the fallout from the condition is indeed ‘sad’, SAD actually stands for Seasonally Affected Disorder – a condition which affects people in the north in the winter when light levels are low. The pineal gland (a small gland at the bottom of the brain), thinking that we should be hibernating (many people would agree…) increases its production of melatonin (the hormone which makes us sleep) and decreases its production of serotonin (the ‘feel-good’ summer hormone). As a result all we want to do is to sleep and to eat comfort food.
The condition has long been recognised in very northerly latitudes – Russian schoolchildren have to spend time each day under special lights designed to fool their bodies into believing that there is still plenty of light – but until fairly recently it was almost unknown further south. As a result , thousands of people struggled through winters feeling lethargic, depressed and miserable and putting on shedloads of weight as they tried to eat themselves into a better frame of mind – and made more depressed by the fact that they did not know what was wrong with them.
For some the symptoms are so dramatic that they become seriously depressed, isolated and even suicidal. I know one SAD sufferer who says that every wrong decision she has made in her life (and there have been a few…) was made in the winter as, before she discovered light boxes, between the hour going back in October and coming forward again in March, her brain was in such a fog that she could never think straight.
Fortunately, the condition is now much more widely recognised and is treatable. SAD sufferers can now get light boxes which run from as little as £40 to around £250. Micki Rose recommends the Wholistic Research Company for lights. A few hours a day in front of your light will make a very significant difference to how you feel.
An alternative therapy comes from Dr Damien Downing, president of the British Society for Ecological Medicine, who believes that Vitamin D (the sunshine vitamin) will do the job much better than light boxes – check out his article on the foodsmatter.com site.
For a personal account of what it is like to live with SAD and some extra tips for coping, read Sinnet Morch’s ‘Winter Blues’.
PS 1/12 – Further post from Micki on an excellent new mini lite box.
PPS January 2011 – I have just seen an interesting article on SAD in healthiertalk.com which suggests that blue light may be the most efficient at relieving SAD symptoms. They also make some other useful suggestions for combating SAD.
Christmas is heading this way and although this is great news for most people, for coeliacs or people with serious allergies, Christmas and the entertaining that is so essential a part of the festivities, is also a time of anxiety – and often, fear.
No one who has not lived with a life threatening condition such as serious allergy can really understand the 24/7 state of anxiety that it induces. An anxiety that has to be managed or it can take over the whole family’s life. Several years ago we printed an article from the FAAN newsletter (the main US food allergy support group) about Stephen, an eight-year-old with severe milk allergy who became so anxious about the possibility of a reaction that he became obsessively cautious, virtually bringing his life to a halt. With help from a mental health therapist and his allergist, Stephen learnt to manage his anxiety, using the three ‘E’s as prescribed by the allergist – Educate, Equip and Enjoy – learn everything you can about your allergy, always carry an in-date Epipen to cope with emergency reactions – and then get on with your life. However, I absolutely realise that this is easy to say, but much harder to achieve.
But, assuming that you and your family manage to come to terms with the daily stress and risks of a reaction, times like Christmas pose a particular threat, especially if children are involved.
• General excitement. In the general excitement and hurly burly, it is all too easy to let one’s guard down. Parents may also be really reluctant to spoil their child’s fun so may take risks which they might not take on a normal day.
• Grandparents and other family/friends. No matter how much you coach grandparents and family in the requirements of your child’s allergy, all too often they will not really understand and either forget or believe that it will be OK to have a forbidden food, just this once…. This is a particular problem for parents of hyperactive children who are sensitive to additives/colours/sweeteners, as well meaning family and friends cannot get it into their heads that it really will not ‘be OK for them to have a treat because it is Christmas’.
• Gifts. Can you monitor the contents of every gift your child receives?
• Entertaining and being entertained. If you are running the party then you have control of what is being offered but what if you are going elsewhere? This post was actually sparked by reading another excellent post on a coeliac site, The Savvy Coeliac, which talks about how scared coeliacs can be by the prospect of being entertained and unintentionally ‘gluten-ed’ by their hosts – so scared in some cases that they simply do not ever go out. Others prefer not to say anything and just suffer the consequences of eating gluten when they shouldn’t – not an option open to those with life threatening allergies. The Savvy Coeliac goes on to given some very useful advice for prospective hosts of coeliac guests on contamination and ingredients issues which she refers specifically to gluten but is equally relevant for any other allergen. Well, worth a read.
• Confidence. It seems to me, however, that one of the most important assets that an allergic or seriously coeliac person can have is self confidence, built on the belief that it is perfectly OK, if a pain, to suffer from an allergy and that your allergy (and therefore you) are entitled to just as much respect and consideration as a diabetic’s diabetes or a pianist’s need to protect his or her hands.
This confidence will enable you to tell people about your allergy or illness and to make it a condition of friendship that your condition is taken seriously, even if the friend wishes to have no further active involvement in it. It will allow you to behave in a way which is right/safe/appropriate for you, whatever your companions may do or say; it will enable you to talk about your allergy or condition when asked without hectoring and it will give you the comfortableness-with-self to be the odd man or woman out, if that is the only safe thing to be, and to be your own companion if no other suitable companion is available at that moment.
While Stephen’s story illustrated all too well the psychological perils of allergy, another young man whose story we reported on the site offers a really positive blueprint. Callum was allergic to milk, eggs, peanuts, nuts, sesame and penicillin as a small child, and suffered from asthma, eczema and rhinitis. As he got older, his allergies diminished in severity but did not disappear. His mother wrote us a letter in response to one of the many sad tales of allergy ignored that we reported, and then ‘interviewed’ Callum about his allergy. You can read the whole interview here, but two comments in particular struck me as a really great way to turn that negative into a positive – and to get out there and set the agenda, rather than allowing it to be set for you – :
Mum: You’ve recently grown out of your allergy to all the other nuts apart from peanuts. How do you feel about that?
Callum : I feel that it’s good in some ways but bad in others. I felt it was like a world record that I was allergic to all nuts – and now I’ve lost it.
Mum: So your allergies make you feel special in some ways?
Callum: Yes – because it’s very unusual to find someone else with so many. When I go into a new class I tell every one I’ve got allergies just in case they eat peanut butter and sit next to me or something like that. Two other children pretended they had food allergies – I didn’t like that because I felt they were kind of making fun of it.
Nutritionist Micki Rose has done it again! Come up with another invaluable bit of information for allergics!
We have run several articles in foodsmatter.com over the years about the excipients (non-drug ingredients) in prescription medicines that are used to contain the drug, hold it together, make it easier to swallow, taste nicer, look prettier… (Deadly drugs and FreeFrom Medicines.) The excipients usually include lactose, various gluten-containing starches, sugars, artifical sweeteners and more. In theory it is possible to get medications without any of these additives but in practice it can be extremely difficult and sometimes impossible.
Well, Micki has just been comparing the ingredient lists of an antibiotic which comes in tablets, in suspension and in suppositories – see her blog post – and guess which has the fewest ingredients – only two fats (meltable palm and coconut oil to make the container) and the antibiotic? The suppository! Check her blog for the full details.