I thought that this was extremely interesting. It has been written to the BMJ - helping doctors make better decisions. Just in case the link to this letter doesn't work effectively I have included the whole letter below but please try the link and, if possible, read the original article to which this answer was directed.
"Living with coeliac disease
Article
Re: How gluten free should a coeliacs diet be?
5 March 2001
As a dietitian diagnosed with coeliac disease myself, I am often called on to discuss the condition - or offer my opinion regarding its management.
There appears to be some division regarding the appropriate diet for people diagnosed with coeliac disease to follow, with the idea of a `low- gluten' diet (ie - allowing oats, wheat-based thickeners, malt etc.) to be included in the diet.
Have any long-term studies been performed to conclusively show that this dietary approach is a safe as a `gluten-free' diet? Until such evidence is available, I would consider it appropriate for people with coeliac disease to follow a gluten free diet - omitting wheat, barley, oats, rye, and triticale.
Recommendations for `low-gluten' diets (including the inclusion of oats) are creating confusion for people with coeliac disease. Until more conclusive evidence is available, I would consider the gluten-free diet most appropriate for people with coeliac disease.
While the food labelling system can still be improved, with good education on the part of dietitians, GP's, gastroenterologists and support from regional Coeliac societies the gluten-free diet is certainly not as difficult to follow as it is often made out to be, as substitutes for most gluten-containing products can be located.
Hi Apricot in Australia they have had 5ppm since 1999 and no wheat oats barley or rye so things may have changed from 200ppm in the UK to 20ppm but coeliac are still allowed to eat wheat, oats and barley malt.
In answer to your question:
Think back..are YOU better than you were in 2001??
I have felt better since abondoning Coeliac UK's food list as foods in there still made me ill and I started to feel it was pointless being on a gf diet that still made me ill. And then I avoided codex wheat, malted cereals and I wouldn't touch oats with a barge pole and I feel great and have since the mid 90's regardless of what Coeliac UK say.
I am a blood donor and had a full blood screen last year and the Dr commented how low my cholesterol was and how high my iron was and said that I was incredibly healthy.
The question that you have ended your comment with, is a strange one for me for in 2001 I didn't have coeliac disease.
Although this letter was written in 2001, to my mind and in this land, it is still fresh as coeliacs are left to flounder and find out their own information about food content and food safety. Labelling has improved somewhat, but it is still not as clear as it should be. Even I have fallen foul of maltodextrin and it wasn't until early this week that I discovered that coeliacs are meant to give sucrose a wide birth as they are intolerant to it. So I feel there needs to be far more understanding and education both within the medical profession and within the coeliac community, not to mention those who cater and produce food lines for coeliacs. At Christmas last year, I was violently ill with a tiny slice of 'gluten free' Christmas cake.
As a coeliac, I want to see any form of wheat thickeners, sweeteners, starches, barley malt, oat derivative, rye additions completely taken out of all food that is meant for coeliacs.
To the best of my knowledge, there has never been a medical study or undertaking that offers guarnatees that these grains even in their Codex limitations do not cause intestinal lymphomas, cancers and brain atrophy along with deterioration of general health of coeliacs.
It is time that the world moved as one for coeliacs. It is time that it became accepted that no amount of wheat, barley, oats or rye in any form are acceptable foods or food derivatives to be given to coeliacs. No matter how much processing, filtering, or radiating is done to it. None of us need it and we are healthier without it and what it more there are plenty of other foods that we can eat safely without any fears.
I think, Apricot, that we have to be most grateful to Australia and New Zealand for helping the rest of the world to move forward for coeliacs. I just wished that the EU (for we are surely ruled by their decisions on this subject) was not dragging its feet.
I still sometimes wonder, if I hadn't found this site when I did and hadn't learnt very quickly about the many additions thrown into every day foods how my health would fair now? How many times each week I would be violently sick, have bone aches, headaches, toothaches, bloated stomach, muscle pain, joint pain, sore eyes, sinusitis, sciatica, neuralgia, and so on and so forth. It takes such a very small portion of gluten to create so many dibilitating conditions, doesn't it?
I really do hope that not only will the labelling improve as you say above (and by that I don't mean the traffic light business) but I hope too, that food for coeliacs improves and becomes more wholesome .... I would love to think that the 'Free From' and 'Gluten Free' aisle was really meant for me and that I didn't have to scurry through the ingredients to discover a variety of thickeners and oils such as rapeseed oil and vegetable margarines buried in the contents.
I suppose, only time will tell Apricot. I do hope that things will improve for us and once and for all - these grains are removed completely from all of our food - how wonderful that would be, wouldn't it?
Hi LHine, It is not that they contain gluten - they are considered a health hazard in amongst other things they present problems with digestion. Thus putting further problems on the digestive system that has already been weakened by gluten.
Here is a site that explains it in a fairly quick way:
My understanding is that normal oats get wheat growing amongst them, so they do have gluten in when you buy them. Gluten-free oats have been carefully grown without wheat contamination so they really are gluten-free. BUT oats themselves contain a chemical very like gluten (anyone?) which some coeliacs react to the same way as gluten. So my advice is to be extremely strict with all the rest of your diet except for gluten-free oats for a few weeks and see what symptoms you have, if any. You could also maybe ask your GP for a blood test after that few weeks to see if the oats set off your coeliac reactions. Good luck.
Hi Eggardon and LHine, Oats contain avenin which is a form of gluten but different to wheat gluten. Gluten free oats means that the oats are only allowed to contain upto 20ppm of what is considered to be wheat gluten but they still contain all of the avenin. Oats are a grain. Some coeliacs choose to carry on eating oats as some carry on eating barley and barley malt as indeed some choose to eat wheat starch and wheat derivatives usually in their Codex limitations of upto 20ppm.
Hi Jerry, I do not think I could eat 20ppm .. and if I were to eat 200ppm I would never be able to rise from my bed!
2001 was the year when I first had a casual discussion with a nurse who said that she had blood blisters just like me and that she believed that it might be something to do with being allergic to wheat. For quite a few years, I truly believed that I too was indeed allergic to wheat .... blood blisters would come when I ate wheat and disappear when I didn't .... so I stopped eating wheat and did my utmost to avoid anything with wheat in. I mentioned this scenario to my doctor after being wheat free for several years and he said that he would have me tested. He never asked me to start eating wheat prior to the test and I would have been reluctant to have done so because by then each time I had eaten only a tiny amount the blood blisters had become worse. I was shocked when he advised that I was a coeliac - I truly didn't believe him and thought that they must have got the test results mixed up, which of course is impossible - they are different tests and they take different amounts of time to be completed and returned. So here I am .... a coeliac. If I eat any food that contains any amount of gluten I am extremely ill so I do my very best to avoid gluten of any kind and from any source.
What I will never understand is why any food is classified as safe with small amounts of gluten in - the 20ppm to my mind, potentially has the power to cause damage to a coeliac and (unless I am mistaken) no viable tests have ever been carried out on coeliacs that continue to consume these amounts of gluten. There seems to be no records of post mortoms that show healthy villi from those who have continued to eat gluten. The only evidence I have so far been able to find appear, if anything, to may be show the opposite:
Very interesting. Whilst i had a dramatic improvement in my autoimmune hypothyroidism a few months ago by ommiting gluten, i have slipped back since, and also wonder we should refrain from eating even the gluten free breads and cereals? Maybe we should ask a new question to see if anyone on here has any evidence to support this!
Hi Paul, at the moment I am ok only on the DS ciabatta rolls and juvela fresh brown bread - everything else makes me ill - including several prescription products! I know when I have been glutened, apart from the tum and bowels, I come out in the DH rash which then takes weeks to get rid of!! As you say, fresh all the way!
Oats are naturally low in their prolamine avenin, which's oat gluten. And what worries me with oats being labelled as gluten free is how come coeliac are told not to introduce them for the first 6 months to year after diagnosis and then to introduce them gradually and not to eat more than 50g per day? this does not sound like a 100% gluten free food to me.
And oats came about because we crossed barley with wheat for animal feed.
This dietician sound sensible. I have now given up on any codex wheat, any gluten at even 20ppm, any barley malt etc. I try and eat non processed natural foods and gave up on Coeliac UK's list as I was glutened too often. I am now growing my own organic veg and beans and everyone in the house is much healthier
Hi Mia, I too try and steer clear of Coeliac UK's list of safe foods and as you say everything in the list of the up to 20ppm and barley malt, maltodextrin, etc. I try and eat as fresh and natural as possible (not quite cave man type diet but not too far off it either as manufactured foodstuffs appear to be loaded with additives and it's almost as it they are either adding new and extra additives all of the time or changing the name of existing ones and it is easier to just go without this sort of stuff).
Something that may be of interest to you if you like growing your own - especially with the Winter coming up - is hydroponics - it is often just called sprouting - and you can do it with an ordinary jam jar washed clean and with a few holes jabbed into the top. Beans or peanuts are the easiest to sprout - you just need a few, soak them over night then place them into the jam jar. Twice each day - morning and night if possible you fill the jar with water leave it for five minutes then gently pour off all of the water and place the lid back onto the jar. After just a few days the seeds/beans/peas burst open and a root and sprout pops out .. once the sprout appears then they can be eaten - added to sandwiches, salads, stir fries, soups, casseroles, etc. You can buy specialist jars and containers but home made ones work equally well. I go through phases of doing it then resting it off.
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