2) How many of you can eat malt vinegar malted breakfast cereals codex wheat wheat derivatives and or oats.
When I was first diagnosed I was into whole foods and days after diagnosis there was a big GF food demo near me, I was thrilled but was so disappointed as everything was just so processed I thought it was unpleasant. I was diagnosed because I had borderline pernicious anaemia and I was given 500mg of iron and told to take 8 daily! they devastated me so I didn't bother and ate myself healthy and within 2 months I suddenly had this wonderful feeling of well, being my iron levels were normal and a second biopsy showed full recovery of my villi. I was a working single dad and eating rice crackers for lunch and felt starved so I got some prescription bread and became anaemic again and appeared to have IBS. Fortunately I found alternatives to codex fully recovered and became a blood donor.
I was shocked as I was just diagnosed and a food list that I had been told not to leave home without as it was my bible, was in fact making me ill and keeping me from good health. So I abandoned their food list and made a speedy recovery.
The Hero food group own the majority of GF manufacturers and baby foods in the EU when we know there's a govt enquiry into the quality of baby foods and its sugar content. The codex wheat they use is washed repeatedly in solvents to remove the bulk of the gluten this process makes it inert and of very low nutritional value so much so it has to be fortified! And yet here's how they describe their products:
I think that we have global markets yet insular standards so I buy GF labeled foods from international sellers and wonder what the free from aisles are really free from.
I think that we deserve better and don't think it's fair as my body can't tell the difference between a toxic carcinogen and allowed levels of gluten. If it still contains gluten then it isn't really gluten free and it's illogical that 20ppm of gluten is toxic and carcinogenic when 19ppm is totally safe but what do I know as I'm only a coeliac whose body cannot tolerate gluten...
What the UK needs is a coeliac charity that supports coeliac who cannot tolerate gluten and puts coeliac before profits, it's what charities are for...
Obviously this is just my opinion and experience of how difficult things are for UK coeliac who cannot tolerate gluten.
Jerry, you are not the only one who is intolerant to GF processed food. Hubby eats mostly fresh food but had GF cornflakes Friday morning and was very poorly for two days, still recovering. Even the birds wouldn’t eat them. I totally agree that something needs to be done but most people don’t understand CD , they think it is an allergy and GPs aren’t any better.
Hello Bazmack48 I hope that your hubby feels better soon as its so unfair being poisoned with gluten in gluten free food...And I know I'm not alone I'm just happy to be outspoken as we have the biggest and most powerful coeliac charity in the world and even they are accountable...
I also avoid GF processed foods. But I’ll eat a GF bread sandwich if I’m really stuck for something to eat, although it gives me terrible indigestion.
I definitely avoid malt, codex etc, but I am now ok with oats.
Not sure what to think of Coeliac uk. Could they keep going without the funding they receive from business? Part of the problem would seem to be that many people are reliant on ready-made foods and do not realise that they are not going to give you optimum health.
Hi Penny, I think the problem that we in the UK have is some of us can get codex wheat on prescription. So if wheat that has been rendered less than 20ppm is gluten free then all the other toxic grains that are below 20ppm will be seen the same.
Braley malt is also a very devious one as there is no test for barley malt and hydrolysed barley malt gives very different readings with both Elisa wheat tests.
You are also very right that we are a society of fast food and instant meals and why should coeliac be any different. Those of us who want a whole food diet are in the minority but we are what we eat and having suffered malabsorption until diagnosed it seems sensible to eat well now.
Thank you for these thoughts. Very interesting. I find I can’t eat quite a lot of things which are labelled gf. I also try to eat mostly fresh food daily and I really notice if I’ve resorted to shop bought bread or other so called free from foods. I cannot tolerate gf oats or barley products such as malt vinegar. I feel much fitter and energised when I eat a completely fresh diet but I admit to reverting to free from rubbish occasionally. I find it difficult to understand how anything with gluten content no matter how small still can be classed as gluten free. I would welcome a more independent and truthful description of gluten free, but I guess I already know that.. it is called eat fresh and nothing processed! This does make life difficult if I forget my lunch and struggle to find something nutritious, tasty and gf within an hour and in a certain geographical area.. impossible!
Hi Lynilou you're so right that lots of take away foods lack a lot to be desired like nutrition...I find it well worth making the effort to eat well but like you have to plan or be prepared. 😊
Hi Jerry
When the Nutritionist said I had a high sensitivity to gluten I started buying GF products. The GF Cornflakes aren't nice at all, the bread us just about inedible so I'm not even bothering to buy any more.
I totally agree those that are Celiac or have a sensitivity are being ripped off, it's disgusting what they are putting in GF products and it needs to be stopped.
Hi Alicia, you mean Franken foods...really the best way is to find natural alternatives rather than use stabilisers fats sugar to get the fake look but tasting like they used cardboard glue...but guar gum (card board glue) is used as an emulsifier and stabiliser...and you'd never have guessed...
And their secret is safe with me...😂 I was brought up on simple food that grew out of the ground and was full of nutrition...
• in reply to
I totally agree with you Jerry, it's so much better to go for natural, you know what your eating. I much prefer making my own food.
Also, I really need to up the intake of iron as I'm anemic, I had blood tests recently.
I didn't realise about Guar Gum, a safe secret with me as well🤣.
My mother grew all her own vegetables, yum.😋
• in reply to
Hi Alicia, you have lots of energy considering you are anaemic, there are lots of natural plant based sources of iron.
I blame the parents me so good for your mum growing her own veg I really like the sound of your mum... 😊
• in reply to
Hi Jerry
I had a look online and am going to write down the foods, lentils being one, I love lentils.
I totally with you to a certain degree but I also blame manufacturers/governments as the processed unhealthy food is so cheap and readily available.
• in reply to
Hi Alicia,
You are so right about processed foods coupled with slick advertising, I just think that your mum did a good job bringing you up...😊
• in reply to
Hi Jerry
Thank you. I have to say I'm so glad all the processed rubbish wasn't around when I was young and also not much of it was around when my children were young.
Thank you, my mum was awesome and worked extremely hard, she was also a welder in the war.😀
I now try to avoid all (modern) cereals - they are bred to be highly calorific and glycemic. Is rice any better that potato? I eat buckwheat muesli for breakfast.
I like rice sometimes but I prefer potatoes and the problems with rice are arsenic and reheating has to be done properly as many seem to get food poisoning with reheated rice.
Buckwheat muesli sounds really healthy and you can buy quinoa flakes which are also very nutritious and are great for muesli and a porridge alternative. I really like quinoa. 😊
I have not had quinoa, but apparently it is a much better food than rice - and even contains all the essential amino acids (so it is great for vegans).
Hi @S11m, I eat quinoa a lot and its a complete food so contains all the 23 essential amino acids our bodies need. So I know its a very healthy even super food and I really like it.
This is a really interesting thread. I am 'allergic' to wheat according to my GP. I am unable to tolerate any wheat or wheat derivatives, so Codex wheat starch is a big problem for me. People assume I am 'gluten free', but as so many GF products contain codex wheat starch and it is not well understood by caterers etc. I often have a problem if I eat out. However, I am OK with oats, barley, spelt and rye, so tend to make my own bread with these. Can't stand cornflakes, they set off my migraines.
Hi BabsyWabsy if you are wheat intolerant then you need to avoid lots of artificial sugars as they are wheat derivatives, so maltodextrin sucrose can all be wheat derivatives caramel colours and even citric acid can be wheat derivative. And wheat derivatives don't have to be labelled as such in the UK/EU.
Here's a list of Eno's that may interest you, wheat derivatives can be sucrose and polyols:
Thanks Jerry, I appreciate that. Luckily for me, a lifetime of working in the food industry has made me more aware than most. Thanks also for the useful link. I have been wheat free for about five years now. My issue started after a stint as an interim manager in a large commercial bakery, probably because I was not only doing taste panels, but breathing in flour and getting it on my skin. Most of the time I manage well, but cross contamination can be an issue when eating out.
To answer your first question, no, I think labeling in UK is far from adequate in many areas, and giving the derivation of a specific ingredient if it is an allergen should be a given. This also applies to excipients in pharmaceuticals. Perceived wisdom is that we are all numpties who can't understand food labeling, and therefore need over simplified Janet and John traffic lights to tell us what is good to eat or not. The traffic lights have annoyed me from day one and, they are out of step now with up to date ideas on nutrition. Many people do struggle because the current system of legal labels in UK mandates for so many elements that it becomes unnecessarily complicated and people who are not food industry trained do not know where to look on the pack for the information they need. I think it is ripe for a much simpler approach. Most food recalls are a result of undeclared allergens because of the complexity of the current system. This is a massive cost to food businesses, retailers and consumers potentially, which could be avoided with a simpler system. Not helped by the drive to reduce packaging which often makes available space even more crowded, despite the fact that certain elements of a label or package must use a minimum font size. It has become almost mission impossible. Glad I am out of it now.
I am gluten intolerant I think, still going through testing, and it's early days for me, but I worry very much about the chemicals I may be consuming, and I have been eating gf bread, or buying gf flour to bake with. Attitudes need to change.
Here's an example. My parish priest has sourced me gluten free communion. A visiting priest at the weekend said when I went to remind him mine is the square host in the separate container, "I don't see how a tiny bit of gluten in a wafer could possibly make you ill."
Hi Munchkinfeet this is so insensitive of the priest and I'd tell him so. Unfortunately communion wafers have to be wheat based and this may interest you:
I'm sorry but he has his priorities wrong as the health of his parishioners should be paramount as taking communion is a symbolic act should not be a health threat, so they should make it work for you.
I often wonder if I'm both allergic to wheat and gluten intolerant ☺️
I avoid the so called free from isle foods wherever possible after many bad experiences and I'm an expert label reader for anything else 😄
I make 99% of all my meals from scratch using fresh whole foods and avoid all the Franken grains, sticking to quinoa, potatoes and brown rice.
Most of my problems arise when I am travelling. Then, I often have to live on dried fruit and nuts which I've brought with me. I was travelling down to London earlier this year and was in first class on the train for a treat. The complementary food offerings came round and I could have ....a banana. Even the chocolate had a wafer inside. All the hots meals were pasta based. All the cold foods were sandwiches. I couldn't even have a cuppa because there wasn't anything caffeine free 🙄 I'm no longer surprised to be honest. I always plan ahead and have something with me. It does make me feel like some kind of reject from mainstream society though 😕
My other main problem is that I often have to disappoint good friends who offer me free from type foods when I'm round at their homes. They've gone to the trouble to prepare and can't understand why these "foods" could be a problem and that's down to all the slick marketing probably. Big manufacturers want to maximise their profits and can't do that with whole fresh food. They have to use cheap ingredients like cereals and sugars and which they can "add value to" with processing and wrap them up prettily.
I suppose the current coeliac uk charity has to consider its funding, and since they're not going to get much from farmers who don't have much money to spare, they have to cosy up to the big manufacturers and promote their concoctions as OK. Very counterproductive though, if you're promoting products that makes the people you represent sick. I suppose if they acknowledged this, their funding would disappear. But it's a crazy strategy if it's true. I suppose that's the problem any new coeliac charity would face.
Hi MTCee I think that you manage really well and know that you are not alone in these feelings of being outside of the mainstream, we all have a fear of food prepared by others and this is self preservation. You also make a great point about shop bought GF treats as the name Free From has implications that they are healthy and natural justifying their cost...
In the UK we are the biggest consumer of breakfast cereals per head per capita so coeliac want to eat breakfast cereals more than other countries and true GF cereals are expensive when supermarket malted ones can come within codex so I think there are compromises being made.
The way I see it is I benefit from making an effort and my diet is much more like societies was in the 1950's and 1960's and I know what I have to avoid. 😊
I’m not happy about the 20ppm gluten boundary or the ELISA testing process. Many coeliacs have reactions to things which are supposed to be safe eg. GF beer made from barley or bread made from CODEX wheat. Personally I embraced both when I was first diagnosed and after twelve puzzled months resolved never again! I suspect individual DNA plays a large part and there’s a fair bit more scientific understanding to go yet. I’d be happier if CoeliacUK would pay a bit more attention to that area.
Tha CSA coeliac society of Australia have none of the toxic grains and undetectable gluten (3ppm) I have family in NZ and can eat everything labelled GF in NZ/Australia.
In the UK I'm made ill by allowed levels of gluten and am isolated like some sort of freak, when I'm just a coeliac...and it's not fair.
That's exactly it Jerry. Likewise, I get looked at as a freak because I can't have all these supposedly safe GF foods. When invited to friends, who knowingly specially get GF items just for me, I feel so embarrassed and ungrateful when I try to explain.
I came across some research a couple of years ago by Francisco Barro in Cordoba who identified 25 copies of the DNA sequence most coeliacs react to in one gluten protein cell. I can't find the reference now but the implication was that these 'gluten removal' processes are just DNA shredders. They leave fragments behind which are too small for the ELISA tests to flag up but still intact enough for our bodies to react to. Sounds very plausible to me!
I don't know what you do because CoeliacUK just stonewall the problem even when you point them at the research, yet GIG in the USA and NZ/AUS seem far more open-minded.
The problem in the UK is we have the biggest and most powerful coeliac society in the world so of course they can stonewall non conformists and insist they have scientific proof...They need much more funds than other coeliac charities so profits appear to come before coeliac.
I think the most important thing we can do is keep the momentum up by saying actually it's not gluten free its called codex gluten free as it has known allowed levels of gluten and just so a massive corporation can turn a profit.
But what do I know I'm just a coeliac who is intolerant to all gluten...
Yes, I'm with you on Coeliac UK - Cross Grain (now Live Well Gluten Free) and their advice. I'm sure that they are too close to manufacturers and both sides probably pat themselves on the back thinking what a good job they're doing. It still annoys me that there was more bread and biscuits I could tolerate in supermarkets years ago than there are now everywhere (added insoluble fibre and oats being sadly on my avoid list too).
I'm still a member as I hope a UK Coeliac organisation will eventually wake up from its GF dogma slumbers. They have a new CEO so perhaps I'll rattle off a difficult letter in the coming weeks
Thanks for the link which I'd lost. I'll have another read.
I'm not a CUK member but rattled off a few difficult emails and kind of got shut down....
They were helpful and the new CEO was open to discussion, so I can not fault their concern for individual opinions but they are still massively resistent to anyone questionning the holy grail of the 20ppm, the malt barley/malt vinegar/gf beer elephant in the room, and the labelling of gluten sourced additives.
I think if there was enough of a critical mass of people on the same page they may be open to approach for a small sub-group of 'super sensitives'. I'm not sure how much end-user engagement they apply in their research design, but there are enough voices on here to suggest such a patient/public group is needed to keep the dialogue open with CUK.
Interesting observations Mise. I tried a couple of years ago with lots of scientific references and after a looooong time I got a warm deflecting reply.
I’ll have another go with the new CEO 👍
Jerry - you're speaking to the converted! I 100% agree with you, and have expressed my thoughts and opinions on the integrity of CUK. We need a lobbying group/charity that is actually on the side of coeliac sufferers and does not peddle products that make people ill. We need 0ppm standard with a new next generation level of labelling and accreditation for 0ppm. We need laws tightened up for the current 'wild west' approach and actual penalties for food outlets that alledge GF but fail to provide that. And we need proper sample size research on the tolerance for the 20ppm and the actual damage/risk of damage having a low grade 20ppm in the diet will cause for all coeliac sufferers.
I put a thread on here about malt vinegar where CUK state it's fab and groovy, whilst the people who make Sarsons malt vinegar say no way for coeliac.
I will confess to reporting CUK on to Food Standards Agency over a barley malt issue with a manufacturer of nut butters who have been assured by CUK that they can promote the product and ones on the same line at GF. The manufacturer removed the GF assertion on their website, but still tell people the product is fine when you contact them directly.
We should not be living compromised lives or be expected to play Russian roulette with every product and trip out out to dinner. 66.4 million people in UK. If 1 in 100 have coeliac (I would argue the number is higher), that's 664, 400 people living a very compromised existence. Even more if you add in the non-coeliac gluten intolerance folk.
• in reply to
Hi Hidden I've talked to coeliac who think that they can tolerate codex malted cereals etc and they often suffer with malabsorption and have to take calcium and have Vitamin D jabs or they suffer from IBS and take Imodium or both.
I think that you are very forward thinking and I like that so the main thing is we can educate one another so that eventually enough will be enough.
The more people who are diagnosed the more who will be like us and either can't tolerate allowed levels of gluten or don't want to eat it regardless.
I also think it would be interesting to know how many diagnosed coeliac are in the charity as we could well be the silent majority...
Jerry 😊
• in reply to
You sound like a person on the brink of tipping over the edge into starting your own charity/patient interest group. Maybe you will be the one to take the big plunge and challenge the CUK dominance?
I wonder would CUK respond to an FOI on your question around diagnosed coeliacs/membership?
I think there is space for this level of thinking, and I think it's important to question the standard knowledge/understanding. From my own personal perspective I use to be ok with 20ppm things, e.g. few years ago could drink gf beer. Now in past two years the poles have flipped and now no tolerance for gf foods and lots of other things. I suspect healing of gi tract has not happened due to gf foods/low ppm/cross contamination. It was the GF beer and CUK repsonse/tone of response when I questionned it that got me thinking.
I think lots ok with the GF standard, but it's the 'super-sensitives' who need a bit more support/lobbying. Generally a lot of the issue is also the general quality of GF foods - many are just very low quality/high additive. I think a lot of the foods aimed at children are just trash in a packet, which I suppose is maybe common for all kids processed foods.I'm still laughing at the comment above about the birds refusing to eat the GF cornflakes - that tells us everything we need to know when our wily feathered friends know better than us!
I'd like to see the 'hidden' gluten challenge tackled, so the labelling of additives from wheat/gluten source, indication if wheat/gluten processed in same factory, and get rid of stupid labelling like 'no gluten containing ingredients' - small things that would be massively helpful.
• in reply to
Hi Hidden this super sensitive is a misnomer in my book as a coeliac is a coeliac and intolerant to gluten, regardless of whether they appear to be able to tolerate a little.
There are posts on here from coeliac who thought that 200ppm was fine for them until codex 20ppm was finally enforced in the UK. 20ppm was recommended in the 1990's by the Codex committee and taken up voluntarily by all other EU coeliac societies including Ireland except the UK who had a voluntary one of 100ppm when codex wheat starch contains 96ppm. And suddenly after eating the lower gluten containing codex wheat on prescription they found that some old stock 100ppm codex made them ill.
So to me the problem is by ingesting low levels of gluten everyday the majority of UK coeliac makes them less sensitive to low levels of gluten but if they were to remove all gluten then there would be no turning back.
How do you communicate with a huge corporation that hides behind not for profit status? They are dependent and interdependent on the low gluten codex what starch industry and to me should be called Codex UK.
I think that we just have to keep getting the message out as coeliac who think that they can tolerate a little allowed gluten are knowingly eating gluten and supporting these people...
As for how many UK coeliac are members of the charity there was something about this nearly 20 years ago when just over 30% of UK coeliac were thought to be members of the charity so the charity brought in free member ship for 3 months.
Lastly if it contains gluten it isn't gluten free regardless of what some callous and unkind organisation says just to turn a profit...
Jerry 😊
• in reply to
Good points Jerry and thank you for the links.
I've had to go back to school this year on the whole gluten free thing and have found this forum invaluable for that. I now shudder when manufacturers/food producers tell me their product is gluten free as tested to the 20ppm measure. It reminds me of a parrot repeating itself - "20ppm.20ppm'"! I might get a parrot and teach it that.....
I've had people tell me their products are suitable for coeliac but that they don't even test for the 20ppm but do a once a year risk assessment. I told them that is not even legal for them to assert 20ppm, and they never responded back.
The best one was Innocent (of the smoothies fame) where they extoled the virtues of their coconut milk being gluten free and not one single test ever happens and there is gluten on-site. They were entirely clueless as to why that might be an issue.
I've found Coop shop/customer care to be the worst. They do not have a clue as to what standards need to be followed for gluten free beyond products labelled as GF. Stating everything and anything is gluten free on basis of ingredients even though it's not certified and produced in factories where gluten present and no testing happening. They had random crisps in the Free From section that are not even GF certified. I'm trying to work some attrition on Coop (they're Manchester-based H/O and I'm in Manchester) to try to get them to look at a 100% GF label option. Trying to get past customer care goons is impossible at moment, but going to keep working it. If we leave these things to CUK it will always be a minefield.
The CEO of CUK (the new one) states her child has coeliac. It would be interesting to see how many of these foods she serves up at home.
• in reply to
Hi Mise, their dietician director Norma Mc Gough is very sensitive to all gluten so her ethos would appear to be eat what I say not eat what I do...And the same will apply here I imagine.
They just don't care about coeliac in my opinion. ☹️
• in reply to
Ps this is what we are up against as this post was written by a coeliac on here:
This American research paper argues for a more accurate food labelling. They think that food labelled as gluten free food should indeed be gluten free, and that trace amounts of gluten should be labelled as such. Trace amounts can easily cause damage. They’re calling for a “robust discussion” on the subject... I’m not sure who would be doing the discussing.
Hi Penny, thanks for sharing this as its very interesting, Coeliac.com have been giving info to coeliac who cannot tolerate codex and 1ppm is too much for them to tolerate for over 15 years now and the CSA who now have 3ppm as undetectable gluten give advice to coeliac who still cannot tolerate this, yet the UK organisation insists they have robust standards and scientific evidence to back up their beliefs that is 20ppm safe...
So unfortunately until the UK charity actually listen to coeliac who cannot tolerate gluten and acknowledge our existence we will stay in the dark ages where coeliac are ingesting gluten and getting it on prescription...and here lies the problem methinks.
I’m not sure who would be doing the discussing...in answer to this I know which organisation won't listen...
Jerry 😊
Hi Jerry,
I cannot tolerate even trace amounts of gluten, so would prefer 'gluten free' labelling to mean that there is zero gluten in the product. I wonder whether many people who suffer from intractable coeliac disease are actually consuming too much gluten in so-called 'gluten-free' products.
I make my own bread (using a maching with Gluten-free facility).
Wishing you well,
Jennifer
Hi Jennifer,
I agree with you and wonder how many coeliac would still be able to tolerate these things if they stopped for a month.
Thats great baking your own bread because I do too. On the HU Healthy Eating forum we have lots of gluten free recipes and I post my bread on there and all the moderators are gluten free for one reason for another so you'd be in good company, please see:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How gluten free should gluten free be?
Gluten Free or Wheat Free.......... that is the question !
Prescription Gluten Free Food...