If you are on a gluten free diet and are still experiencing difficulties or may not feel as well as expected -

I am sharing a list of foods that appear on a US site as probably containing gluten. This is especially useful for coeliacs who have been gluten free for at least two years but do not feel well as it gives them/us a chance to scruitinise thier/our diets to find possible culprits.

Many of the foods are the obvious grains but others, I have always believed to be safe but are worth keeping in mind if things are not going well - for instance, unexplained headaches, rashes, jaw pains, nausea, cramps, muscle aches, any ailment that has been checked by a doctor but doesn't respond to conventional treatment, etc.

This list is especially useful for those with super-sensitivity to gluten and may prove a useful tool in improving their health:

glutenfreesociety.org/glute...

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  • I'm familiar with this group and their theories. Basically, they believe they have evidence that indicates any plant in the grass family contains gluten. All grains are members of the "grass" plant family. Their evidence and scientific theory are very compelling, but I have not seen any other research that would back up their claims. I'm not a doctor or a scientist, so I honestly don't know. My experience is that it's not quite that simple. Just because you are sensitive to one member of any plant family doesn't necessarily mean you are sensitive to every member.

    They advocate a form of paleo diet, if I understand their material correctly. It certainly is interesting reading and more "food" for thought. Hopefully it will generate more research and discussion. Thanks for sharing Lynxcat.

  • thank you for the list, I never realised that rice would be a problem and I love brown short grain rice............

  • Maryelle, If you are not suffering as a result of eating rice then it's likely you can tolerate it. If you are really concerned and feel you are not improving with eating rice you could always try cutting it out of your diet for a little while and see if it makes a difference.

    It's important to remember that what seems to work for one person (or what one person/group believes is good or bad) does not necessarily imply that we ALL have to live by their rules! :)

    Personally, before I was diagnosed with dermatitis herpetiformis I actually got to the stage of craving rice (!!) - and I was affectionately known as 'the pasta monster' because of my love for pasta - so the idea that rice is bad for me feels quite strange. However, I do not eat it every day for every meal (as I believe some coeliacs do) so perhaps that's why it doesn't seem a problem for me. I don't think it's good for anyone to eat any single type of food for every meal every single day! So try not to worry about it, but if you feel it's worth a try, you could eliminate rice for a little while and see what difference (if any) you feel. Good luck!

  • Hi Maryelle, If you are well then please carry on eating what you are eating!

    The reason that I posted this link was an extra reference for coeliacs and gluten sensitives who have been on a gluten free diet for a number of years but are still feeling unwell. It was meant as something they could look at and check against what they were eating to see if there may well be an item of food that they hadn't considered but that could be making them unwell.

    Most coeliacs and gluten sensitives thrive by just eliminating wheat, barley and rye - I have also had to eliminate oats from my diet. I used to eat them practically every day - I loved having porridge. I can no longer tolerate them.

    We sometimes have to change/adjust our diets to keep ourselves well. Rice to my knowledge is not a problem to most of us - at the moment I am still eating it (fingers crossed that I shall always be able to carry on doing so).

    I quite liked Sara Wilson's blog - there are a few pieces information on how to heal yourself with an autoimmune illness. Sara Wilson, I believe went on to suffer from hashimotos (thyroid disease) so she is writing from the perspective of a sufferer, which I feel is often more informative and usually more interesting.

    sarahwilson.com.au/category...

  • I watched the video and thought that it made some valid points, and is well worth watching because it explains how gluten affects us in different ways.

    What I found confusing was they say not to eat any grains because of potential cross contamination and in the video Dr Peter Osborn refers to the protein in all grains as gluten.

    This is incorrect because all grains have a protein enzyme (prolamin) but that does not mean they are toxic to coeliac. So all grain prolamins are not in fact gluten.

    Peter Osborne also makes the point at the end of the video that no one should eat grains and this has come up before as these grain proteins are anti nutrients that actually stop our bodies from absorbing nutrients, here's more about anti nutrients and a summary of their effect:

    butterfieldwellness.com/who...

    ''And like all grains, beans, seeds and nuts, they have anti-nutrients. Why? All grains, beans, seeds and nuts are designed to sprout and grow into mature plants. Unlike animals, they can't run from predators. So they have built in mechanisms to discourage pathogens and herbivorous predators. These seeds and grains have just as strong a desire to propagate and spread their DNA as humans and animals do. These built in anti-nutrients are part of their survival package to ensure their propagation.''

    As for brown rice according to this article we absorb more nutrients from white rice than brown rice.

    Quinoa an ancient grain has soponins on it's seeds to stop predators from eating them and we have learnt to wash quinoa so that it is safe to eat. And we do not eat raw soy beans because they are indigestible but cooked they are. So food preparation comes into the equation.

  • The reason that I posted this particular link was as a reference to people who may have been on a gluten free diet for a number of years but were failing to thrive. It was a possible reference to check their list of foods that are processed and already packaged that may present problems by containing small amounts of gluten. Added to this, the more obvious for females are the problem with manufacturers adding wheat starch into make-up items such as lipstick, mascara, foundation, powder, blusher, shampoo, etc ..

    The article is harsh on its gathering of possible gluten suspects but it is a reference for possible ingestion for some. A chance to sit down with paper and pen and list what they may be eating or coming into contact with that could be impacting on their health.

    There is also the other problem that can occur with any of us and that is that we, being vulnerable to the initial grains of wheat, barley, rye and oats, could at some point become sensitive or allergic to further grains - especially if we use them quite commonly as alternatives. So it was really a starting point ..

    The added problem that many coeliacs, and gluten sensitives are still ingesting quite large amounts of gluten especially if they are choosing to consume foods with the allowed 20ppm of gluten as this could build up over the course of a day, week, month. When firstly diagnosed it is so easy to be tempted to try and eat entirely the same by using the 'free from' aisles in the supermarket. When someone sees the words 'gluten free' or 'free from' they automatically think this means 'not containing any gluten' and not the fact that it really means 'containing only the permitted limit of gluten - namely 20ppm.

    A further consideration: many people who may at first be suffering with coeliacs or gluten allergy go on to become allergic to other foodstuffs such as dairy. Few of us are told about this when we are initially diagnosed and I wonder how many never find out and remain feeling extremely unwell.

  • Hi Lynxcat, I was not criticising you for posting the link I was just making a point, as I felt it could worry those who do not have a scientific background.

    We use the term gluten which in reality only refers to the protein (prolamin) in wheat, generically to describe the other toxic prolamins in barley rye and to some oats. He took this generic term of gluten one step further to refer to the protein (prolamin) in all grains.

    This has come up before as a cross reaction to other plant proteins even coffee.

    I think the video could be very helpful to those who have given up being diagnosed have and self diagnosed. I loved his analogy about gut biopsies only looking at small parts of the gut and likening this to dipping a bucket in the ocean and if there were no fish in the bucket it did not mean there were no fish in the ocean.

    I also agree with Peter Osborn that being a coeliac is far more complex than we realise and he says about leaky gut which means that a toxin is crossing the coeliac blood brain barrier so in my opinion he made some very valid points.

    As for helping those that are still struggling as they have not responded to their diets, the Australian coeliac society as well as having no wheat, oats barley or rye and >5ppm as gluten free they give a list of wheat derivatives that have traces of gluten in them for the coeliac who are super sensitive to even 5ppm like dextrose and maltodextrin. And if a wheat derivative is used it has to be labelled as such in Australia and NZ.

    I think allowed levels of gluten are why some coeliac have low iron and mineral levels and some even suffer IBS or constipation and are sticking to a strict gluten free diet that has allowed levels from malted cereals etc.

    So I was not criticising you and if I was going to criticise anyone it is those who think that coeliac can eat low levels of gluten safely eg malted cereals. So I'm sorry that you have felt that you need to explain your self. It was just me being pedantic.

  • :) Sorry .. struggling to not have comment posts deleted at the moment! I didn't feel critisized - I realised that I should have written much more in my original post but have been having problems with posts being deleted when I have hit the publish button - I should have written enough as to not produce concerns though in others - especially to those who are newly diagnosed. Then trying to add extra explanation and hoping that my comment post will survive and be posted - I didn't mean to sound in any way short.

    I suppose I am looking for a sort of Eutopia - (a place where everyone is 100% well and if they are not then there must be an explanation or reason in something they may be eating that doesn't agree with them - when I was a little girl, my father always said 'one man's meat is another man's poison .. he always had problems with certain foods but not bread Lol!!) - obviously this is probably not the case.

    So I am interested in what everyone has to say .. I keep learning more and more .. and thank you for explaining about the prolamin.

    I have so far had one day of semi fast followed by a normal eating day .. I suppose I may have cheated in the fact that I did have a cup of coffee with milk and four cups of tea with milk .. but apart from that I managed a 24 hours without food and then around 4 - 500 calories - I am hoping that my rash around my eyes will heal if I do this a few times - I live in hope or should I say dreams! Lol!! :)

  • Well if it's any consolation I have had issues with the page loading and I believe there's an internal timer so if it takes longer than x amount of time to load it disappears. I'd report it to the powers to be.

    The rash around your eyes sounds sore so poor you, do you know what it is? or what causes it?

    If you are interested in the individual prolamin for each grain Peter Osborne explains that at the very beginning of his lecture and then refers to them as uno what!

    I have been experimenting with IF (Intermittent fasting) for short periods ie the day before yesterday I didn't eat anything after having tea until breakfast the next day and that was 14 hours and I only drank black tea. Last night to this morning I managed 15 hours. So you've done better than me. I will try having a low carb day when it's wet and I'm not whizzing around on my bike as when the weather's like this I go on a figure of 8 ride around the cycle lanes near me for over 15 miles. I am actually buying a sat nav driven distance and speed thngy for the bike and that will show how many calories I've burnt and average speed etc so that will be interesting. I don't actually want to lose weight as my weight's just under 10.5 stone. I am interested in IF for health reasons and think it's worth making the effort. I mean look at the guy who ran the marathon aged 101 and his secret? fasting. I'd like to get into the habit of not eating for 12+ hours most days.

    Lastly I hope you get the GFG loading problem sorted and your rash goes soon.

  • Firstly, The page loading issue is being sorted - I reported it and they came back quite quickly and said that they are hoping to have it all sorted by Monday. I suggest in the meantime, that we all click our copy buttons before pressing the submit comment .. at least that way - long and complex answers aren't wished away into the ether!! Lol! ;)

    In truth I do not know what is causing the rash and the more I keep reading the more confusing I have found it to be. It might be exposure to gluten that I haven't nailed down or SLS ... but strangely, I have noticed that the skin surrounding my eyes tends to prickle when I go down the cereal aisle of the supermarket, which at first I thought was my imagination until I went to a different supermarket and didn't know where the cereals were and felt them prickling and then turned the corner and was in the cereal aisle.

    I thought that it would be worth trying to do a day or so or may be more of this semi-fasting idea and see whether there is any improvement. On top of this the gentleman who ran a marathon at 101 and having a minimal diet similar to a fast is quite compelling to do something to improve our health:

    bbc.co.uk/news/uk-17765170

    The SatNav sounds like a good idea especially if it shows calorie burning .. you better watch out or they'll be calling you up for the BMX or the velodrome in Rio. Lol .. we could do with some more Gold Medals though!! ;)

  • Hi Lynxcat, have you looked into an allergic reaction to household cleaners? I have a theory and it may be codswollop, that coeliac can be more sensitive to some things/many things so why shouldn't our skin be more sensitive to chemicals. I had to stop using one brand of cleaner because I would get inflammation of the skin by the corner of my right eye, very disconcerting and then I'd rub it and make it worse. I do not suffer from DH. So I'd google for info on this. They reckon some household air fresheners can cause/trigger hyperactivity in children, ADHD. They also reckon that many food additives are the trigger for ADHD and there's some very interesting articles about this.

    '' Skin Rashes

    Exposure to household cleaners can cause eczema or contact dermatitis on the skin. These and even less severe rashes may not show up immediately on the hands, but will develop in areas frequently touched, like the eyelids or mucous membranes.''

    So maybe as well as fasting you should have a sabbatical from housework...

  • Hi Jerry, I have thought about this quite seriously, which is why I began to look intosodium lauryl sulfate also known as sodium laureth sulfate, or sodium lauryl ether sulfate (SLES), it is classified as a detergent and surfactant found in many personal care products as well as various cleaners. It is known to cause all types of dermatitis .. and I am still wondering why they allow it to be used in this country. The dreadful thing is when you glance around the home it is found in just about everything. So it is a slow process to purchase items without it and those that are without it are often extremely expensive .. but I have begun trying to replace one thing at a time.

    In all seriousness, next time you pick up anything that either cleans or is remotely soapy and you will most likely find this ingredient - how scary is that?

    natural-health-information-...

  • Hi all, I am so glad to have found this site...! My daughter was diagnosed as coeliac in December 2011, when she was just 2 1/2. Her symptoms leading up to that had basically been rampant diarrhoea that was, on occasions, literally water, and serious anaemia that ultimately required a blood transfusion. Anyway, the bottom line (if you pardon the pun!) is that I still haven't managed to sort this out for my little girl and she still has diarrhoea of varying consistencies, every single day. I have been following what I believe to be a gluten free diet for her but clearly something is still wrong. Having seen the list of foods which could potentially contain gluten I am now wondering whether I need to be stopping her from having her organic, gluten-free breakfast cereals and foods containing cornflour, amongst other things? Help? Any advice would be so gratefully received. My daughter's dietician has said to me that it could take up to a year for signs of gluten to leave her body but, seriously, surely if she has been on a GF diet since Christmas, she should be forming proper poos by now?! Also, please bear in mind that she is only 3 and doesn't truly understand what is going on. I have been so pleased that I have managed to convert her to GF breakfast cereals - surely now I don't have to deprive her of those now as well? Thank you so much everyone! X

  • Hi Elisesmummy, What a shame that your daughter has been diagnosed coeliac at such a young age and how very upsetting for you especially as her tummy is still not settled. It is difficult without knowing what ingredients are in the packets of cereals to suggest if there may be something that could be causing the problem.

    There are quite a few mothers here and many have young children just as you have.

    Perhaps, as a suggestion you could try a very simple diet to see if the runny tummy will clear up .. perhaps try scrambled eggs one day and may be ground rice the next - these are both simple foods and should be easy for her to digest.

    What sort of things does she like for lunch and dinner? For instance ready sliced cheese or grated cheese are usually coated in wheat to keep them separate. Ready sliced cold meats are also coated in wheat so that the slices stay separate. So all of these sorts of things need to be avoided.

    I do not eat oats as they cause me a problem and would suggest that you perhaps rule those out too at lease for a few months. Does she have gluten free bread and if so have you checked the ingredients on the wrapper - some of these although they say gluten free do contain Codex wheat starch - find one that is wheat and malt free. Sauces like ketchup are a problem as they contain vinegar.

    If she has a sensitive tummy then you will have to watch for cross contamination and have a special teatowel, cutlery, plate and cup all separate from everyone elses. Gluten is easily spread from one thing to another especially if someone is handling floured rolls or bread.

    They are much stricter in Australia with their gluten laws and here is a useful site especially for children on gluten free diets that you may find helpful:

    healthy-kids.com.au/categor...

    And this - although it is an American site is a useful quick and handy guide to newly diagnosed coeliacs - there are always one or two items that not everyone will agree with and many have difficulties with - some people as I said above find oats difficult some find soy a problem .. but the basics are here and it is in a printable version:

    ext.colostate.edu/pubs/food...

    Hope that this is a little help - and I do so hope that your daughter is soon much better. Has your doctor made any suggestions and have you been able to see a dietician?

  • Hi Lynxcat, thanks everso much for your reply - much appreciated. I thought you might be interested to know that I got the results of Elise's most recent bloodtest today. It says "the repeat coeliac screen is negative". So that means no gluten was detected in her system, doesn't it? Which, of course is a really good thing and means that the gluten free diet is, in theory, working. However, she is slightly anaemic and will need to have some iron supplements (the anaemia is most likely caused by the diarrhoea I expect). So, I am now thinking there might be something else wrong with her and will speak to the consultant about this when I see her next week. I am hoping it won't be something like ulcerative colitis on top of coeliacs? Or could it be something as simple as being allergic to another food e.g. soya milk (which she has instead of milk as a drink and on her cereal) or dairy (which she has as cheese and yoghurt). It's such a blinking minefield, isn't it?! Still, at least in theory the gluten free diet is working and I can console myself that hopefully her intestines are now healing a bit. Many thanks again! x

  • Hi Elisesmummy, That is good news about the blood test.

    Have the doctors told you not to give cows milk but soy on cereal? The reason that I ask is it is associated with diarrhoea in young children .. this site has advice on soy milk for children - if you don't have time to read the whole page - scroll down to Allergies (perhaps check with your doctor as this could be the culprit of Elise's upset tummy):

    livestrong.com/article/9908...

    x

  • my doctor has only recently questioning poss coeliac. bt it's not poss to gt the reading unless i'm eating gluten , bt, it makes me so ill

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