Should Coeliac UK be shut down? - Gluten Free Guerr...

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Should Coeliac UK be shut down?

Benjamin123
Benjamin123

This is a contentious question, but it needs asking.

From a lot of posts on here, and personal experience, it seems that Coeliac UK are not very upfront about the fact that 'gluten free' foods carrying their mark of approval or listed on their food list are actually making/keeping people with coeliac ill.

I posed the question recently to CUK on why gluten free foods making me ill. I was told by the genial staff member that a gluten free diet is not suitable for everyone with coeliac.

WTF????

Mind officially blown!

This is actual quote from the email: "We are aware that some of those with Coeliac Disease may be more sensitive even when on the gluten free diet. If this is the case, we would always recommend discussing this with your dietician or gastroenterologist to determine whether your diet requires further attention and investigation."

So, go on a waiting list for months for a gastro appointment when in fact the problem is not with your diet but with the foods they are pushing as 'safe'. And chances are the gastro doctor has been brainwashed into the 20ppm remit/that Coeliac UK are the holy grail of all knowledge for coeliacs. FFS.

They will gaslight and gaslight and come out with lines like this rather than admit the products they are making their money from (via manufacturers) are actually NOT gluten free in the true sense.

I've seen mention elsewhere on an older post that someone know's the CUK dietician and knows that even she won't touch 'gluten free' foods manufactured and pedalled to those with coeliac as 'gluten free' and safe for consumption.

Even more concerning to see the Chief Exec started her career in marketing for Coca Cola.......

So this begs the question, what the heck are CUK about if not to simply keep people ill, confused about why they are still ill, and then gaslight them into believing it's something else? How are they legally still allowed to hold license/legal ability to trade as a charity if this is what they do?

Should they not be held legally accountable and shut down/replaced with an organisation that is fit for purpose?

All thoughts welcome.

78 Replies
oldestnewest

Whoa, someone has a huge chip on their shoulder. Coeliac disease is like most illness, there are varying degrees to which an individual may be effected, right from those that get little or no visible symptoms to those that only need to breath near something with gluten in and they become ill. As an example I cannot tolerate the "Big Oz" (think that is what it is called) flour, which has no gluten but has wheat starch, Juvela make a bread that again I cannot tolerate, do I blame Coeliac UK for that? No, of course not, others are fine with these products.

Coeliac UK do not profit from G/F manufacturers, they only give guidance/advice. Instead of being so anti-Coeliac UK, why don't you try working with them and at the same time try to find out what other intolerances/allergies you may have.

I have not (so far) needed help from Coeliac UK but plenty of others have and have received great help/advice from them. We all need to help ourselves as well and share our experiences with Coeliac UK to help them improve their service.

Thank you for responding. Each to their own in terms of opinions.

The issue is - Coeliac UK do make money out of manufacturers. They provide advice/audit prior to their approval for the cross-grains approval, offer training courses and, if you visit their charity page/companies house page, will be able to view/request a copy of their accounts for the year. They do none of that for free. They are a charity, but they are a charity that charges money to manufacturers for their services.

They are also telling these manufacturers that certain ingredients are quite ok for coeliac, including barley malt. I have yet to meet/communicate with one single person with coeliac who can tolerate barley malt. Not one. Even the NICE clinical guidelines state that barley malt not suitable.

It is great you are ok with CUK, but is it ok that they are providing erroneous advice to those who can not tolerate the 20ppm? Is it ok that they give their seal of approval to products that make people ill, and then gaslight people who contact them about the products?

Do you know how many people can't tolerate the 20ppm? Have Coeliac UK invested research funding into researching that?

Why are so many GPs in UK entirely clueless as to the testing/symptoms of coeliac? Might CUK not be informing them better?

Thank you for your response again, but seems there is debate here that needs opening up. Additionally, being a accused of having a 'chip on your shoulder' simply because I want better standards for myself and anyone who struggles with the current coeliac standards in the UK is quite rude. CUK is failing a lot of people, the standards are dire for many and unless these conversations happen, the demand for change will stay hidden/silenced. I firmly believe the inclusion of any ppm of gluten in our foods will keep people ill/push them to worse health - is that acceptable. Are you ok with people being kept ill?

Okay you get upset because I say you have a chip on your shoulder, yet, you are quite happy to accuse Coeliac UK of "gaslighting" (lying/deceiving). They have to set the bar somewhere and they set it for the majority, they are also doing research to try and find a "cure".

Conversation is one thing but these accusations of yours are totally different to conversation, you accuse them of deliberately keeping people ill and in fact benefiting from doing so.

Another example of varying degrees of coeliac is; I can tolerate gluten free oats but my sister (also a coeliac) cannot, so should gluten free oats be banned for coeliacs? Some coeliacs also have lactose /milk intolerance so should all coeliacs be told not to have milk.

By the way I have no connection with Coeliac UK apart from my membership, I have nothing to gain from defending them.

As for the bit about GPs, I and others I know of have found despite evidence to the contrary some GPs insist that there is no such thing as coeliac disease and no amount of evidence seems to convince them, how do you suggest Coeliac UK deal with that? They put the facts and evidence out there but if people refuse to accept it they cannot do anything about it. It is the same as other things there are conspiracy theories about 7/11 and just about everything else, people only believe what they want to believe.

This is about setting a current standard that does not meet requirements of people with an illness that can be life-limiting if untreated, leads to a host of additional conditions (osteoporosis, organ damage, etc.) and ends up costing the NHS millions as no one will state straight that gf standards are not properly gf. You can not be a charity advocating for coeliac if you are ignoring 10% of your 'client' base. It is not acceptable that people who are highly sensitive to gluten currently have no advocacy. And yes, Coeliac UK do gaslight by shunting querants down the road of more invasive tests/cost to the NHS by denying them clear information on the suitability of the 20ppm for coeliacs.

I get what you are saying about the oat and dairy argument, but that is offsetting the case that gluten free food is not gluten free. Your sister may be intolerant to gf oats, but that is most likely the other component proteins in oats, not actual gluten. Similarly with milk.

As in my other post on here, I am currently not catered for in any free-from section in the UK. That will be similar for another 10% of coeliacs. Is that ok?

As to the GP's - Coeliac UK are funded to raise awareness of and improve standards for people suffering from Coeliac. They are missing the frontline primary care knowledge/awareness raising that leads to late/poor/non-diagnosis. That is a massive failing for them as a charity.

Whydothis
Whydothis in reply to guyana1230

The problem with GF Oats and CUK is that they almost deny the fact that not all of us can eat them. When I asked about this they rubbished the idea that I couldn't eat them, but I now know I can't. I am sorry, but I do suspect that this is at least partly because oats are used in so many GF products.

On the other hand, their website does give helpful advice about the lactose intolerance, and how it is caused by the intestinal damage and should improve as things heal.

This one is a response to your second post - goodness knows where it will appear!

Diyerneed
Diyerneed in reply to guyana1230

you will always get a person that blames someone, I think that Cuk do a fantastic job get a life

Having noted you have made another post requesting information on a gf replacement for Ryvita, it would probably be timely to remind you that you are 1) newly diagnosed as a ceoliac; 2) still not got to grips with a gf diets 3) seeking advice from a forum that is driven by user-knowledge that is (unfortunately) hard-earned knowledge for most.

If you read through a number of comments on here, in addition to other posts on this forum regarding CUK and significant failings on how the advise on certain foods and retain food suggestions on their recommended food list that are not suitable for coeliac, you may find them interesting/useful. You will also note comments on their failure to tackle the original questionnable research that arrived at the 20ppm recommendation, respond intelligently/curteously to those asking for further research/information on why this 20ppm is not working for them, and the fact that other countries have much better coeliac charities who give conflicting advice to the UK one.

Suggesting I 'get a life' in the context to your newness of diagnosis and the fact that you need to still get to grips with the diet is quite interesting. Down the line - give it a year - you too will appraise your appreciation for CUK when you find that you may still be ill, are still having random symptoms and have a cupbaord full of CUK recommended GF products.

Good luck.

Whydothis
Whydothis in reply to guyana1230

You are right that people have varying degrees of symptoms to different levels of gluten, but that is not the whole story. When I started by taking CUK advice I felt much better very quickly, because I had cut out almost all of the gluten I was eating. 18 months later, I still cannot get my blood test to show a safe level, which means my system cannot heal and I am still at risk, even though my symptoms have gone. CUK do not show any interest in this, and give me very standard answers to any questions. I will not renew my sub when it runs out.

They do profit from manufacturers, in the sense that most of their funding comes from the fees they charge for inspection and accreditation.

Edit - this was a response to your first post, but has jumped down here!

Guyana1230. Hi, having launched a range of gluten free products (sausages) in a former life, I can confirm the CUK do make money from manufacturers. It is expensive to be granted the use of the crossed grain logo, it requires a lot of time to fill the paperwork in and includes a factory audit by a specialist who also charges a fee. The audit is repeated regularly and looks at paper work, systems and processes. Benjamin123 is correct. I am not coeliac (not tested) but have a wheat allergy and I cannot tolerate Codex wheat starch either. It seems to me that CUK has a clear conflict of interest.

When I was first diagnosed I had no idea what I could and should not eat and belonging to Coeliac UK was very helpful to me. I am not highly sensitive and think most coeliac are the same. Those who are highly sensitive must take advice from medical staff. I think Coeliac UK is fine for the majority and should therefore stay

Thank you for commenting, but I disagree.

In terms of those not tolerant to 20ppm, I've read somewhere on here that it is 1 in 10. That's 10% of people with coeliac and may/may not be higher owing to lack of proper research on this.

So, if you scale it up - if there are 1000 coeliacs in one room, 100 can't touch the current standard of gluten free foods as sold in the free from section. That's a lot of people.

I also find it quite unacceptable that the 10% are supposed to put up/shut up, just because the other 90% are ok with it. Equally, how many of that 90% are still maintaining levels of damage from the presence of the ppm, or pushing themselves towards greater sensitivity/gut damage?

I can go to the Free From section in my local Tesco and I can probably only consider 1 or 2 items out of what is now well over 100 gf items, and even the risk factor is too high with those 1 or 2 items so I avoid. That is not ok for 10% of coeliacs.

Coeliac is also, let's not forget, covered by disability law. Would it be acceptable for 10% of wheelchair users to be denied accessible entrance ways to buildings, disabled toilets, or access to disabled parking?

It is great that you have found Coeliac UK useful/helpful, and I agree, but the only takes things so far and the remaining distance is left short in favour of gaslighting and cover-up on the suitablity of the ppm measure.

Manufacturers are demand-led. If there was awareness/recognition of the 10%, manufacturers would follow in terms of meeting that demand as it's a missing market for them at the moment that they have no awareness of as CUK keeping it covered-up.

I had no idea that disability law applied - I hadn't thought of myself as disabled, but it certainly does stop me doing some of the things I was able to do before CD.

I had an experience at the beginning of this year when I booked a ticket to a special meal, and the caterers refused to fee me, so in the end I had my money back and didn't go. It sounds as though I should have pushed them harder!

Disability law covers anything that is a longterm ongoing condition that impacts on your life. Coeliac would be covered by that. I think we are made to feel like a nuisance when we raise issue over lack of food options at events, etc., but it is, technically, a reasonable adjustment, so if in a work situation, your employer needs to make provision. Beyond that, in general catering, I'm not sure how it applies but I think there needs to be more 'test' cases by coeliacs that make use of exisiting disability and equalities laws. You have your basic human right to not be made ill by anyone, outside of law, never mind within law. I think this is particularly relevant to where caterers/food outlets provide gluten free menus, but still manage to make people ill. I've had wheat containing sausages served to me on breakfast from gluten free menu and guy in restaurant was quite arsey when I asked him to check if they were gf. That should not be happening. You're either in or you're not in - none of this farcing around with gf menus but failure to follow the standards. I've reported various places to Food Standards for this reason - there is no penalty for them. More test cases would help strengthen up the standards. The Pret A Manger case where the girl died from undeclared sesame seeds still seems to have changed little.

They didn't make me ill, just refused to help! I think you are right - it should be an equal ops issue, just as much as wheelchair access.

Also, remember that 20 ppm is cumulative, so if you have GF bread with every meal, you could ingest quite a lot over the course of a day.

This is the bit that I don't think ever gets communicated. If you have a gluten free sausage sandwich, made with gluten free bread, followed by gluten free cake and wash down with a gluten free beer - that's a lot of ppms.

You are safe with the sausage. Most retailers top end sausages are GF now as standard, using a rice rusk rather than the traditional wheat based rusk. (Read the label folks!) But, yes, if we are looking at 20 ppm for all of the above, that adds up to a lot of gluten. I also agree with you about being made to feel awkward. Also there is a lack of understanding about cross contamination in many catering establishments. My feeling is that this is ignorance rather than wilful negligence. If you haven't walked a mile in our shoes, you really wouldn't know. There should be training in all food outlets about this. I recently went for breakfast at a well known coffee chain beginning with C. All they could offer me was tomato soup. Never again.

bookish
bookish in reply to liver-bird

Please don't think that I am criticising either you or Coeliac UK, but how do you know that you are not highly sensitive? Coeliac testing is a mess, and information not much better. Gliadin is associated with CD but what about other grasses and grains, with other glutens (prolamine and glutenin). Corn is the second highest gluten grain, extensively used in GF food, but can also cause flattening of villi, with associated malabsorption. Quinoa (which even Beyond Coeliac say is ok) can stimulate an immune response as potent as that observed for wheat gluten. Unfortunately some reports suggest that as many as 90% don't achieve full gut healing on a traditional GF diet. With so many of the symptoms not obvious, how do any of us know that we are calming the inflammation 'enough'. Cross-reactivity and molecular mimicry ought at least to be considered. Even if you don't agree that a 'truly gluten free' autoimmune diet is the way to go, and I appreciate that many don't, you have multiple autoimmune conditions (like many of us), so we are missing something, surely, in slowing this cascade? I know that I haven't stopped or reversed my many conditions, but do know that some have slowed (considerably) and that others therefore may be worsening less quickly than they would otherwise have done. Best wishes to you

Benjamin123
Benjamin123 in reply to bookish

Hi, no criticisms within your comment whatsoever. It's about opening up the conversation and debate, and that will involve many differing opinions and views, which is healthy.

It is interesting that the stat for people who don't achieve full gut repair (90%) and the stat for those who are deemed ok with standard gf diet are similar.

I think a lot of 'silent' damage is happening for those outside the highly sensitive group, and lack of overt symptoms/being told that their symptoms are to do with something else is obscuring the true extent of how many/if any can get healthy with a 20ppm level. It almost seems it's the optimum ppm level to suppress symptoms but not induce full healing. Again, criticism for CUK - if they are putting a load of cash into researching a cure, are they overlooking fact that a 'cure' already exists which they are failing to endorse, i.e. a totally gluten free diet with 0ppm allowance...........

Gluten avoidance does seem to be the answer to a lot of autoimmunes, in addition to avoidance of all grains. We're not cows/sheep - the ruminant animals need multiple stomachs and a whole different set of enzymes to digest grass/grass grains - why do we assume that our one stomach and totally different set of stomach enzymes will do the job adequately?!

bookish
bookish in reply to Benjamin123

I couldn't have said it better myself! There are so many difficulties - we know that coeliac testing misses a lot of coeliac people, especially in the earlier stages of the disease. So they will be, perhaps, trying GF for themselves with varying amounts of success. But CD is just another autoimmune condition - there is no reason that Coeliacs can't also be NCGS - in fact perhaps those who would consider themselves 'sensitive' are dealing with both. If we aren't looking to the underlying disease process and are taking the medication without trying the lifestyle and diet adjustments, where possible, we might be feeling a lot worse than necessary for longer than necessary. And again, that is not meant to imply that it is 'your' fault for being ill and that you aren't doing the right things to help yourself. Lots of people simply don't know that anyone believes there are alternatives as well as changes that can be made alongside standard medical treatment. We need to be gentle with ourselves and supportive of each other. There is no single standard diet or solution which will suit everyone, as nearly all of us will have other issues alongside. I took the medication without any other changes for 15 years because I was mis-diagnosed and had never heard of autoimmunity. It was only when I got my 2nd, 3rd, 4th...that I stopped the medication and went back to square one to see what was actually going on.

Datis Kharrazian's Autoimmune Diet (Gut-Brain Repair Guide) has an elimination and reintroduction plan which excludes barley, bulgur, corn, couscous, kamut, millet, oats, rice, rye, spelt, wheat, wheat germ, amaranth, buckwheat, chia, quinoa plus all the potential cross-reactive foods. And he says, in the reintroduction section

'consider never consuming grains/gluten'.

There are already loads of food sensitivity/cross-reactivity tests, and gluten gene tests if you have the funds.

Back to Micki Rose's Gluten Plan again - she says that the 20ppm was found to be the level above which the villi will not heal, but it is based of course on gliadin protein, not on any of the other 60 peptides. But she also says that people particularly with neurological gluten related disorders seem to be far more sensitive and need to be lower. Dr Rodney Ford in NZ has advocated 0ppm which she wishes were do-able although she considers it nigh on impossible.

Micki mentions that the FDA had recently (2011, book written 2014) published a review which said that 1ppm was enough to trigger the autoimmune cascade in coeliacs. It also says that the sooner kids are diagnosed, the better their chance of not getting the autoimmune and cancer increased risks that adults get when diagnosis is delayed. The report is long, but a lot of it is references fda.gov/media/81500/download. Cheers

Benjamin123
Benjamin123 in reply to bookish

Thank you for that. You've certainly done your research! That's really helpful.

bookish
bookish in reply to Benjamin123

You're welcome, my pleasure. Best wishes

If a coeliac organisation is telling people that a gluten free diet may not suit all coeliacs, rather than telling them to simply avoid most processed foods, it is indeed concerning. It certainly does imply a huge level of denial about the products they are promoting as safe for all coeliacs.

I can’t tolerate products with 20ppm of gluten in them either, but that doesn’t mean I should give up on following a gluten free diet. That’s clearly ridiculous. It just means I avoid almost all processed foods and stick to naturally gluten free foods.

Sounds like Coeliac U.K. are not accepting that there are different levels of sensitivity, which does seem astoundingly strange.

I’m the same, I can’t tolerate it, no matter how small it is, and as a result cook from scratch.

Thanks for replying.

I think what CUK were implying is that a gluten free diet is not working for some, so not about giving up gf diet, but exploring other health/medical aspects that might be prolonging issue. So, essentially shunting people off down road of more invasive tests/costs to the NHS, rather than admit that what they refer to as a 'gluten free diet' is not actually gluten free in the true sense.

I don't even know how skilled/knowledgeable staff at CUK are on the issue, and some may be rabbitting the 'party line' rather than having the full knowledge. But it certainly is gaslighting.

I think CUK do 'accept' that there are different levels of sensitivity (noting their own dietician won't eat foods that are labelled gf if that story is true), but to make provision for that is to lose most of their 1) food list; 2) manufacturer customers; 3)income stream.

Cooper27
Cooper27 in reply to Benjamin123

This might be helpful, I don't know, but I have heard one of their higher ups explain that they were aware of the issue, but they viewed it as a balancing act for achievability (on the part of the coeliac not the manufacturer). Essentially, a limit of 20ppm opens up more food possibilities for the coeliac, making them feel less deprived and making them more likely to stick to the GF diet.

It really surprised me to read a survey in Gluten Free Heaven magazine, that found a crazy number (like 10 %) of coeliacs would regularly cheat, a very large proportion ignored "may contain" warnings, and there were even some who said they didn't follow the diet at all because it was too expensive and inconvenient (I met a woman like that too), so I see where they're coming from.

Benjamin123
Benjamin123 in reply to Cooper27

That's crazy. Well, I suppose you can take horses to water, but....

I just don't understand why someone would knowingly keep themselves ill at risk of worsening health and early death if there was an alternative option.

Gluten Free foods are expensive, and that's perhaps another string on the bow of changemaking - why are they so vastly expensive? Yes, they have to source specially produced flours, etc, but is the actual margin on gf foods reflective of what it is on 'normal' foods? As more gf foods come online, that should, technically, push down the price for suppliers, etc.

Equally, opens up the conversation on the scrapping of prescriptions gf foods. I don't know enough about that as have never sought out prescription for gf foods, but for those with kids I think that must be massively challenging.

Perhaps also there is an over-reliance with many people on processed foods. A gf diet doesn't have to be expensive if you buy your own gf flour (which is pricey, but will produce quite a few breads/cakes moreso than buying off the shelf gf products).

Yes, I can see your point here on the 'middle-ground' between those who need/wish to live in hermetically-sealed bubbles and only sip on filtered alpine spring water through to the other end of the scale where individuals take no responsibility for themselves and will opt for poor health over missing out on cakes/biscuits. And the obvious cost implications for coeliacs.

It's complex, that's for sure.

Cooper27
Cooper27 in reply to Benjamin123

I can partially sympathise. When my partner is glutened, I see how ill he is and think anyone would be daft to choose that. It was only later, when I was realising I should do a gluten challenge, that I spoke to a guy whose only symptom was a skin rash (also my only symptom). In our cases neither of us really know if food has been cross-contaminated, so we'd be more likely to risk "may contain" warnings. I then think back to if I were a teenager, and how I might put up with it occasionally to fit in.

Coeliac UK also explained the reason for the high cost. Gluten flour will always require a consistent amount of water, where a gluten free blend (even if its proportions never change) can often be more/less thirsty. Every time the bakery gets a new batch of flour, they have to vary the recipe to suit the new liquid requirement. That takes time. After that, they very often make the first batch up, find they got it wrong, and have to bin the whole batch and start over again. Apparently this high level of food waste is a large reason for the price tag. It was another line of research they mentioned - better testing equipment, to tell you how much water you need first try, therefore reducing food waste.

Benjamin123
Benjamin123 in reply to Cooper27

Ah, that's really interesting. I wasn't aware of the water issue. That's pretty good to know, so thank you for that.

Ye, in many ways having immediate/digestive symptoms makes it 'easier' to detect hidden glutens. I've heard of some with 'silent' coeliac who have no symptoms at all which is quite worrying.

bookish
bookish in reply to Benjamin123

Your hermetically-sealed bubble and filtered alpine spring water did give me a chuckle, thank you! I can rather see myself in that description. My 'bubble' since lockdown is my partner and I - although no longer having to shield, I'm still keeping contact to a minimum. I have multiple chemical sensitivites (as well as food) partly due to poor detoxification/liver function and low glutathione (some genetic stuff, some functional as a result). And I've just started to drink Volvic, as one of the two high silica waters that may help with aluminium issues....cheers!

There is the ongoing cost for manufacturers of special cleaning regimes and often a completely new set of manufacturing equipment, often in a different building, plus the testing that must be done on the machine surfaces prior to manufacture and the testing of each batch.

MeTeeCee
MeTeeCee in reply to Benjamin123

Ok. I can see that they might get a few undiagnosed people asking them for advice, for whom a gluten free diet may not be the answer and who would require more tests to find out the problem. So there’s that. But it does sound as if they are conflicted around the issue of processed foods that meet the 20ppm requirement. I suppose they get most of their identity from their list of recommended foods. Psychologically they’d probably need to cling onto that, which would result in denial and gaslighting.

They once told me that it was okay to use the same makeup and skincare products I’d used before because the amount of gluten exposure would be minimal. I was concerned more with lip balm and lipstick. However, after reading a report on how much lipstick/lip balm is swallowed each year, I decided to ignore their advice, as I didn’t consider it safe. I now only buy ones marked gluten free.

They've lost the plot at CUk on their 'advice'. Even if exposure to gluten from your makeup is minimal, it's still exposure. What planet are they on? It's like they actually don't understand the basics of the disease. Bizarre organisation.

Well, I’m certainly seeing them in a different light these days!

This is an interesting post, and debate.

I posed a similar question over a year ago - healthunlocked.com/glutenfr...

The comments are interesting and enlightening.

I tend to agree with a lot of what you are stating. I'm in that ten percent group and despair greatly at the lack of provision. I don't eat any 'gluten free' food anymore and gave up in even having the conversation with food manufacturers who repeat the 20ppm mantra.

To give an example - which I cited to coeliac uk - I can eat potatoes with no issue, and I can eat seasalt with no issue, and I can eat sunflower oil with no issue. Put them all together and pass them through a production line in a factory and have a bag of crisps at the end of the line that has coeliac uk symbol, and those crisps make me ill. It's crazy. It's like GF foods take perfectly gluten free ingredients and add some gluten in on the manufacturing process and then label them gluten free as long as they measure within 20ppm standard.

I personally gave up on coeliac uk a long time ago as I could not bear the covering up of true nature of gluten free foods and the lack of provision for those who need a 0ppm. I also can't deal with the fact that most gluten free foods in my local supermarket contain unneccessary ingredients that make the products unsuitable for highly-sensitive coeliacs, like using glucose-fructose (comes generally from wheat, and sometimes corn), instead of bog standard normal sugar. Or yeast extract which I posted on here recently - there are safer alternatives, but it's like they actually go out of their way to include as many cack ingredients as possible!

I wouldn't advocate for them to be shut down, but only because they are well established and have recognisable brand, but I would demand a 'gold standard' level for those who are tolerant of no gluten whatsover and a reconition of that in the market for gf foods. I think they need to change their model/leadership to one that is customer-led, not manufacturer/profit-led. I see this in quite few charities that are meant to represent illnesses - they start out with good intention, but then lose their soul/focus to profit-driven focus and the original concept gets lost/obscured.They appoint leaders who are brought in for their ability to drive profit, rather than leaders who are genuinely impacted by the condition they are supposed to be advocating for.

bookish
bookish in reply to Mise

I am, I believe, NCGS not Coeliac (gave up gluten prior to testing so can't know for sure) and haven't had any dealings with Coeliac UK. But this is a recurring problem for all with sensitivities. I was lucky to realise fairly early that bought GF was no good to me and that oats, corn, barley etc etc were also an issue. I choose not to eat any grains and don't eat pre-packed or prepared food as a result.

Your bag of crisps example reminded me of something Micki Rose says in her superb (in my opinion) book, The Gluten Plan. She ended up with a diet that she calls AIP Purity which excludes 'anything touched by man'! She found that she had more difficulties with anything processed

" ....fresh pineapple juice, great:pure 100% pineapple juice in a carton, nope. Raw frozen prawns I cooked,fine: ready-cooked frozen prawns, not fine. Fish frozen on a boat mid-sea, OK: frozen fish in a packet, not OK. Melon I sliced myself, yummy: melon slices in a packet, not so yummy".

She believes the issue is cross-contamination in the processing and the use of plasticizers, non-declared additives and cleaning fluids used for wiping surfaces etc. (Many of these are corn-based, a particular issue for her and many of us.) We simply don't know how much damage that continuing small amount of gluten is doing behind the scenes and I for one have no desire to perpetuate the problem.

Best wishes to you

Mise
Mise in reply to bookish

That's quite an interesting concept of avoiding anything with any human intervention, and I can't argue with that at this point. Someone made mention of gluten free products in another post on GF Guerillas where good making everyone ill - they discovered the soap/product used in wash down of equipment contained gluten. For me it's the notion that you can wash gluten away in a complex manufacturing line that makes no sense. Yes, we all need to eat whole not processed. Thank you for that.

Hil101
Hil101 in reply to Mise

I totally agree with all of that

I am interested in your use of the word ‘gaslighting’. I was told to join CUK by a consultant who saw me for less than 5 minutes on diagnosis (and ignored the fact that I was covered in dermatitis herpetiformis which was undiagnosed). I turned out to be highly sensitive and was kept ill by poor CUK advice. One particular food was barley malt vinegar which they claimed was fine but it made me horribly ill. I tried to talk to CUK rep at a Free From food fair about the fact that some foods which they said were ok still made me ill and that this advice does not cater for those of us who are very sensitive. They were categorically not interested and gave a response that denied my experience and pointed me towards medical intervention. Gaslighting indeed. They also disagreed with my idea about flagging up which things might upset someone who’s very sensitive. Now why would they do that if they aren’t ‘in bed’ with the manufacturers? So your comment about the new Chief Exec coming from a junk marketing background made perfect sense as to where CUK priorities lie.

By the way, there is a far better organisation who are far more oriented around research for an actual cure and genuine dietary advice: Beyond Coeliac. I commend them.

Benjamin123
Benjamin123 in reply to Hil101

Thank you for responding. Yes, there is nothing like CUK shutting down dissenting voices. I'm sorry you were given such short shrift by them, but not surprised. Not only are they shutting down voices, they are denying advocacy and isolating those who struggle with being highly sensitive. That is quite damaging on an individual level. I've visited Beyond Coeliac and have seen Coeliac UK 'diss' some of their advice quite openly. There is a good research foundation for ceoliac also in Florida that have a good website/advice. The barley malt vinegar is crazy - I do not know anyone on here who can tolerate that. Also, have seen another poster put a response from an actual vinegar manufacturer who states clearly that their malt vinegar should not be consumed by coeliacs. The best one is the NICE clinical guidelines for coeliac that state clearly that malted grain products are to be avoided - CUK contributed to the NICE consultation, and then go off and override NICE's clinical advice.

When I scanned my bottle of barley malt vinegar on the Coeliac UK app it tells you it is not suitable for coeliacs, so maybe they have changed their mind on this. White wine vinegar is okay though as it comes from grapes.

They are still saying on their website that it is ok: coeliac.org.uk/frequently-a...

Quite messy if they state on their website, but app is different. Doesn't help the trust levels in their advice. It shouldn't be a decision made on whether or not they decide to change their minds, but based on the existing scientific and medical evidence stating malt vinegar is not suitable for coeliacs. They are tedious.

I agree, but presumably it has been backed by scientific research. I prefer to go by the information on the app, and if it tells me something is unsuitable, then I don’t consume it. Perhaps they just haven’t got round to updating the website yet(?)

Ukulelelady1
Ukulelelady1 in reply to Hil101

It’s not just foods that you need to be careful with. When I was first diagnosed with Coeliac disease, I asked Coeliac UK about lipsticks/lip balm, and whether they needed to by Gluten Free. They more or less said it was okay as there wouldn’t be enough in a lipstick to cause an issue, but when I read from another source, just how much lipstick is ‘consumed’ in a lifetime, I didn’t want to take any chances. Plus, why do certain manufacturers make Gluten Free lipstick if they don’t think there’s a risk, there wouldn’t be enough demand if there wasn’t a real risk?

Thank you for your reply and the inclusion of the link. I've actually read through that one already, and found the responses interesting. Yes, the manufacture of GF foods does seem to be about adding in gluten to gluten free ingredients. I think there is a level of madness in this process that does need to end at some point and CUK taken to book for not 'catering' to everyone. I would just like this debate now to be taken seriously. It is discrimination to the 10%, and no argument is strong enough to keep that discrimination going.

Oats are "gluten-free"... but there is aprotien in oats that is similar to gluten, and many are allergic to it. I do not have coeliac, but I am allergic to gluten, oats, and ¿all? "gluten-free".

Benjamin123
Benjamin123 in reply to S11m

Ye, it's shame that oats have that issue. I think there is also a 'gluten' in corn that may be as impactful for some as the coeliac gluten.

You state you don't have coeliac yet you can't eat 'gluten free' foods or is it just the 'gluten free' oats you can't have?

Have you been tested for coeliac, and to what level? (i.e. just the one blood test, or actual endoscopy)?

Hil101
Hil101 in reply to S11m

Apparently it is a protein quite similar to the ones in wheat and barley. Presumably some coeliac bodies (like mine) Add it to their reaction list. Coeliac UK used to (and probably still do) acknowledge that newly diagnosed coeliacs should stay clear of oats for a while then try it again cautiously.

Benjamin123
Benjamin123 in reply to Hil101

Yes, that is the one bit of advice that does stand. I think NHS dieticians give similar advice.

Whydothis
Whydothis in reply to Hil101

I wish they had advised me that. The information I gleaned from their website when I was new to this was that oats were no problem, provided labelled GF and so not contaminated. That still seems to be the position

bookish
bookish in reply to Hil101

Yes, oats contain avenin which is lower on the list of likely problem glutens but by no means certainly ok, even excluding the contamination issue. Oats contain some of the same amino acid sequences that are found in wheat so should be considered cross-reactive. To be 'truly gluten free' they are considered unsafe. I can't eat them either. Cheers

Cooper27
Cooper27 in reply to Hil101

The advice changed recently - they now say to keep oats in the diet, and only remove them if you still have symptoms. I forget the number who can't tolerate oats either, but I think it was around 20%.

It boils down to mainstream nutrition - they're so nervous about people excluding grains from their diets, because that's what they tell the wider population to base their diet around.

BabsyWabsy
BabsyWabsy in reply to Hil101

That protein is avenin in oats.

Ukulelelady1
Ukulelelady1 in reply to S11m

Quinoa can also cause the same gut response as gluten too, not just oats. I don’t eat oats or quinoa for that reasons.

I totally understand your frustrations with CUK, but we did find them invaluable for help when my partner was first diagnosed and we had to wade through the rules. Also for myself trying to navigate a gluten challenge to get tested (that fell through due to Covid).

We have an active local group and attended a lot of events. From what I picked up there, the 20ppm guidance is based on WHO guidance and is used throughout most of Europe, so it doesn't appear CUK are the only ones.

We attended a really interesting talk on their advances in research into treatment and diagnosis, so food guidance also doesn't seem to be their only purpose and it would be a shame to lose that invaluable work (for example into a blood test that doesn't require you to have gluten in the diet first).

I do find it interesting talking to the local group attendees - some are super-sensitive, while some don't get any reaction if their chips are fried in a gluten containing frier. The spectrum of sensitivity is pretty amazing, although I understand the frustration at being on the far end of it.

Having said that, I do know a lot of members (non-sensitive ones) who complain at the likes of Domino's still being on the accredited restaurants list - I've yet to meet a coeliac who doesn't react to their pizza.

An issue you might find is that those who have high tolerance levels might not seek out forums like this though: they may not feel the need to seek out further help via online forums.

Benjamin123
Benjamin123 in reply to Cooper27

Yes, I've had the 'Dominoes' experience also....

Thank you for your input which is balanced and thoughtful. Yes, I do see that CUK have a purpose and value, but I see also that many are kept ill because of the current standards. I'm sure there are enough people informing them of the issue, and although WHO standard setting, there is nothing to stop CUK setting aside recognition/provision for highly sensitive reactors.

Silencing some does not benefit anyone as it stops the conversation, makes people ill/angry and isolates those who do need advocacy and input.

But yes, I do get what you say on the support they do offer. I just wish they would recognise the elephant in the room and put research focus on what their clients are telling them about the ppm issue. WHO may be setting the standards, but there is nothing to stop CUK challengin that standard - Austrailia are members of WHO, yet they have chosen to buck the 20ppm standard, so why not UK also?

Thank you again.

Cooper27
Cooper27 in reply to Benjamin123

We've never risked Domino's! Too many horror stories!

I like the suggestion of a 2-tier system. From what I've heard, in New Zealand they have a system where the %of gluten has to be marked, so the consumer makes the decision based on their sensitivity. I don't know what % 20ppm would be, but let's say it's 0.02%. You would learn through trial and error (not perfect) that your tolerance is 0.005%, and would only buy products with less than that as a percentage.

Benjamin123
Benjamin123 in reply to Cooper27

I agree. It's about allowing/accomodating for options, rather than a 'one-size-fits-all' policy. I think the time for a shake-up is long overdue.

bookish
bookish in reply to Cooper27

I do understand your points, but remain concerned that those who are apparently not getting any reaction may very well be getting a reaction that they can't detect. If a child is diagnosed early and has a (hopefully healthy) GF diet, they have no increased risk for other autoimmune conditions. A young adult or adult (typically CD is diagnosed late) is another matter. The 20ppm level of gluten ingestion that might allow villi to heal and therefore the vitamin/mineral malabsorption issues to begin to resolve (and make you feel 'better') is much higher than the 1ppm level needed to stop the inflammatory autoimmune cascade. As many of us already have one or more AI conditions before gluten is even suspected and go on to get more after diagnosis, how many of these people are being treated for other conditions that they don't even realise (or get told) are, or could be, related? If we went truly gluten free as soon as we knew there was a problem, how many subsequent conditions could be prevented or reduced in severity. Not ideal I know, but there is always genetic testing, once you are off. (HLA DQ2 and DQ8 generally for coeliac, DQ1 and DQ3 in both NCGS and coeliac - DQ1 often neurological and skin, 1 and 3 associated with allergy and sensitivity syndromes.) Best wishes

Barbara O'Neill (utube) gives excellent coverage to the topics about gluten etc.

Benjamin123
Benjamin123 in reply to Dulaigh

Is that specifically in relation to coeliac? Is she recommending certain approaches/treatments? A quick search on YouTube hasn't brought up relevant video but did bring up a few videos on fact that she has been struck off in Australia for malpractice and telling people cancer can be cured by baking soda. Yikes!

Dulaigh
Dulaigh in reply to Benjamin123

What better recommendation.

Not merely coeliac but the surrounding conditions and probable primary conditioners. A much more over arching view...and more from the coalface which is where original work may be done.

Mmmm - I can see two sides to this.

Starting with the points in their favour:

- The 20ppm is not something they have dreamed up, it was set by the WHO, and at the time was an improvement on what went before. The majority of countries have adopted it as standard, and it is governments, both UK and Europe, who have made the rules about what can be labelled as GF. CUK accredit some/most manufacturers to confirm they comply with this law.

- I understand that it is true that a majority (of unknown size) of coeliacs can eat 20ppm without symptoms

- I think "gaslighting" is too strong a term, as I really don't believe they are setting out to make us doubt our own knowledge, and I don't believe they are trying to keep us ill.

- CUK do provide some useful information for newly diagnosed coeliacs, which helps in understanding the condition.

- They do fund some research, and it is possible to find some results and reports on their website

Points against:

- Yes - if, as a member/patient you don't fit the majority mould, they are less than helpful They tell us how we can ask for advice and support by email from their wonderful dietitians, but if you ask them a specific question you get a Blue Peter answer from a database of stock answers, which may or may not be helpful. I tried to use this service recently, because it seemed better at present than seeing a GP, or advice about my latest blood test, which I was not happy with, and I got nothing back that was really specific to my question.

- They do very little to make sure that GPs, Gastroenterologists and dietitians know anything about CD - it is the luck of the draw whether you get one who understands, and it is no thanks to CUK. We need them speaking up for us and filling this gap.

- They get far too much of their income from the manufacturers of highly processed, over priced, poor value (food value and value for money) foods. Much income comes from their advice, inspection, and accreditation service, and then more clearly comes from advertising. - Their magazines and newsletters are almost nothing but advertising and advertorials pushing these products.

I have been a member since I was diagnosed 18 months ago and have found some useful information on their website, but I have been surprised and annoyed by the emphasis on what I regard as junk food, and the lack of real support. I will not be renewing my subscription for a third year.

I suspect that your question about holding them legally accountable comes down to whether they are complying with the aims and objects approved by the Charity Commission, and no doubt they have a whole team of people writing reports in the right way to be approved!

Whydothis
Whydothis in reply to Whydothis

PS - personally I would like to see the UK adopting the Australian and New Zealand rules - to be labelled as GF food has to be tested as "no detectable gluten". Their members are warned to be very careful when travelling to Europe, because our GF food is not safe!

Thank you for this. It's comprehensive and balanced.

Again, I've being throwing a CUK shutdown out as a debate trigger, and it seems to have brought up a lot of really useful information and thoughts.

The points 'for' you raise as spot on, and the points 'againsts' equally so.

I do agree that an Australian/NZ standard would be excellent and there really is no reason for this not to be adopted in the UK. There may have previously been some concerns of complying with a pan-EU directive, but that's not massively relevant anymore.

It just seems that many are still suffering poor health needlessly and living limited lives due to lack of dietary options with the gf market dominated by junky foods that contain questionable amounts of gluten (within codex). Also, the late/poor diagnosis side. Also agree the foods being pushed out at the coeliac market are very 'junky' in nature, beyond the basic breads. It's all crisps/biscuits/cakes. The one-size-for-all is not working and the % who it doesn't work for can't simply be ignored in the hope that they go away and be quiet.

It sounds harsh of me to suggest legal intervention with CUK, but I think these debates need to happen. If individuals are not renewing membership they must question why that is.

I totally agree with you. I've been so frustrated and disappointed with Coeliac UK. Having been glutened last week, which makes me really really ill, I am feeling highly miserable about having the condition and feel that coeliac UK are doing very little, except pushing terrible manufactured rubbish good. Especially those that contain gluten free oats, which I think they don't fully know if there's any long term implication of eating. I don't eat them. Or barley malt. I've been suffering with long term side effects to be coeliac and find it difficult for the medical profession to take it seriously. The CUK stance of just eat gluten free and you're fine is poor and misinforming in my opinion.

When I was diagnosed 10 years ago, I was a food safety officer in a large city. I contacted CUK to say I felt I could really help them in educating restaurants etc and they were so uninterested. Made me disheartened from the off!

Benjamin123
Benjamin123 in reply to codycat

Sorry to hear that, and sadly not surprised. I think a level of transparency is required from CUK in terms of who's side they are on at times, and why they are so dismissive of feedback and recommendations. A truly representative body would engage better with its members/coeliacs and take onboard these concerns. In looking at their current research agenda there is nothing on there about exploring concerns on the 20ppm or the efficacy of a gluten free diet alone to heal the damage. These, in my own opinion at least, are the key issues of concern for everyone with coeliac. Research needs to be user/sufferer led, and the informed by end users/patients, not market/manufacturer led. In terms of restaurants I think CUK have stepped up in training restuarants, but mistakes still seem to happen too frequently and seemingly no penalties for those who don't apply proper gf standards when advertising a gf menu. Food Standards Agency and Local Authorities have a responsibility on this also.

I know that I can't eat any 'gluten free' manufactured foods. As far as I can determine it is Hydroxy propylmethyl cellulose that they seem to stick into everything that is a gluten free substitute. This stuff can give you really bad digestive problems. I can't stomach the stuff, literally! Therefore, anything that is packaged as 'gluten free' but has that in the ingredients, I avoid big time. Doesn't actually leave much. So I just generally try and eat naturally gluten free foods instead.

bookish
bookish in reply to Gilbo72

HPMC is also a no for me. Often contains carrageenan which can be problematic.

Micki Rose (purehealthclinic.co.uk/trul...) says

'A Special Note - Carrageenan, from seaweed, is used very often as a thickener in foods, toothpastes etc but, I recently discovered, also in capsule shells. It is an irritant especially for anyone with colitis or inflammatory bowel disease but generally I recommend people avoid it if they have any bowel or digestive issue. I have known it cause severe bowel spasm in some. Since most of us gluten sensitives have gut issues, most notably leakiness, ingesting carrageenan regularly is not something I am comfortable with.

You can see carrageenan stated on labels if you look. But, did you know that HPMC, hydroxypropylmethylcellulose, the stuff in a lot of supplement and medicine capsules and coatings on tablets, can have carrageenan added to it too, and that this is not necessarily declared on the label?'

Micki had particular issues with Alpro soya desserts.

HPMC coatings on tablets generally don't contain carrageenan, but it is used in capsules to give flexibility - so I re-capsule all of my supplements!

Like you, I eat real food and avoid all the GF stuff. Best wishes

Penel
Penel in reply to Gilbo72

HPMC is not the only problem ingredient in manufactured gf foods: emulsifiers, xantham or guar gum can also cause gastric distress.

As you say, the best thing to do is to eat naturally gluten free foods.

Not to mention all the minor ingredients derived from wheat but that do not need to be labelled as such.

We just need honesty and transparency. Why should that be such an issue for an illness?

Hello Benjamin123 I share your frustration as I cannot eat many things clearly labelled as gluten free in the U.K. yet I have family in NZ and I can eat everything labelled gf there so something is very wrong.

My opinion is some coeliac can get codex wheat on prescription so malt vinegar and oats which also contain low levels of gluten are classed as gluten free.

In Australia and NZ they have 3ppm and none of the toxic grains and they found that 23% of coeliac had a bad reaction to pure oats.

I’m not a member of CUK as I want nothing to do with them or their erroneous advice.

CUK is the biggest coeliac charity in the world because of the codex wheat starch industry ties and CUK are struggling financially due to COVID19 and have been asking for extra donations I hear.

I wish that CUK supported coeliac who cannot tolerate gluten full stop.

Benjamin123
Benjamin123 in reply to Jerry

Thank you Jerry. That is refreshingly frank and factual. I wasn't aware of the NZ standards, but had read about the Australian one. This is frustrating, and completely not legal for them to carry on with this farce. I hope they change soon/are tackled by an authority. Lives are impacted horrendously by their failings/duplicity.

Hi Benjamin, the problem is how codex is implemented so in the UK we've been able to get codex wheat starch on prescription so if wheat below 20ppm is deemed safe then so is malt. But the Elisa codex wheat test isn't very accurate for testing gluten in malt from barley.

So the problem is how codex is applied in the UK and its not robust enough for some of us.

Adding this interesting link on a UK manufactured flourless chocolate cake that is sold in US and labelled gluten free because CUK telling people barley malt is A-ok. US standards do not allow for barley malt, so CUK poor standards also infecting the US coeliac food market. Their gluten welding menace is global.

glutenfreewatchdog.org/news...

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