Are Coeliac UK too passive?

For anyone based in UK - do you think Coeliac UK do enough to further the GF agenda? From personal perspective I have found them friendly and helpful, but I have my doubts on whether they are lobbying/pushing the agenda enough on product labeling and penalties for those stating food is GF, but isn't. Any thoughts?

[Sapphire10]

I can't comment as although I contacted Coeliac UK 3 times for advice just after I'd been diagnosed 6 years ago, I didn't find them friendly or helpful and getting information was like pulling teeth. I remember feeling so isolated and I'm also a vegetarian which compounded my need for help but there was none. I didn't renew my trial membership and it has left me with a poor view of them.

[Hidden in reply to Sapphire10]

Hi Sapphire10. Thanks for posting. That's disappointing that they were unfriendly. I am now starting to wonder a bit more about them myself. Seems counterproductive to wanting people to join up and pay membership if they are being frosty and unhelpful

[Hidden]

Unfortunately we have the most liberal standards in the UK when it comes to gluten free and I think this is for a few reasons.

Firstly we can get food on prescription so immediately we have wheat with allowed levels of gluten so everything else below codex is deemed safe. So in the UK we are told malt vinegar is safe various pickles are safe. When other countries interpret codex as none of the forbidden grains and below codex with codex wheat being the exception.

The other problem is the UK is largest consumer of breakfast cereals per hand per capita so lots of coeliac want cereals for breakfast and supermarket malted ones are allowed if under codex.

Coeliac UK are the biggest coeliac charity in the world so have plenty of influence in my opinion.

I avoid foods displaying the crossed grain symbol in the UK as I don't trust them to be gluten free enough for me so for me the UK charity lacks a lot to be desired and could do so much more for coeliac who can not tolerate any gluten. So I'm happy to say I'm not a member and the best thing I did was leave and stop using their food list...😊

[Hidden in reply to Hidden]

Hi Jerry. Thanks for posting. Again, I do wonder about them. Seems that they are almost enablers of glutening than working against it. I've contacted them after drinking a gluten free beer that had their cross-grains symbol. Got gluten symptoms, looked up online and lots of posts/threads on fact that de-glutenised barley is not gluten free - an enzyme used to breakdown the gluten but still small particles remain . Coeliac UK argued with me on the phone that it was perfectly ok. So why did I get gluten symptoms from drinking it? Crazy that they are not working on the side of those with coeliac rather than pander to slapdash manufacturers.

[Hidden in reply to Hidden]

Hi Mise, the trouble with hydrolysed barley is there are 2 ELISA methods for gluten testing and they ate both designed for wheat gluten and give very different results.

So what is making you ill? gluten and why is it classes as gluten free because it tests below codex...but its still gluten and gluten is still toxic.

Here's a link about testing GF beer:

ncbi.nlm.nih.gov/pmc/articl...

The trouble is if you approve wheat thats had the majority of the gluten removed you're going to approve allowed levels of barley with malt vinegar and hydrolysed malt because they are within codex.

So it's how codex is interpreted thats the problem for us in the UK.

[Hidden in reply to Hidden]

Seems a pointless system really if no one is getting healthier for trusting this labelling and testing system. Thanks for the beer link. I've switched to gin which was never my drink before, but is now!

[m0ezp in reply to Hidden]

Spot on Jerry. 👍

Gluten-free beer made from barley or wheat is a myth. The US Gluten Intolerance Group, Australia and NZ are on the case but our supermarkets are full of stuff that gives so many of us gluten reactions. There’s only some of the brews from Greens, St Peters and Autumn Brewing that I know of that make some truly safe beers. I wrote to Coeliac UK last year but they’re so none committal on this. I scooped together what I’d found here: brewertons.co.uk/gluten-fre...

I don’t trust any grain based spirits or vinegars unless they’ve been distilled at least 3 times and then I wonder if the root of the problem are tiny fragments of gluten DNA that the ELISA tests can’t see.

Recent years have seen a real push to fill GF food with insoluble fibre which many of us struggle with and biscuits are now a complete oat fest which again many of us can’t have.

It’s better we have Coeliac UK than not but I don’t feel they’re always on our side which is bizarre!

[Hidden in reply to m0ezp]

Thank you, I understand your last comment but my experience is there is no support for coeliac in the UK who cannot tolerate gluten within codex. So I for one feel totally unsupported with my coeliac dietary needs in the UK.

[m0ezp in reply to Hidden]

Sorry Jerry, I think I should have said... we need something like CoeliacUK but what we have isn’t working. So I completely agree.

It’s difficult to tell if they have got too close to manufacturers who are probably funding CoeliacUK to some extent or health people who don’t really understand our problems. I sacked my NHS dietician as she couldn’t help me with any of my coeliac diet issues!

The scaling back of GF prescriptions is an appalling defeat for CoeliacUK; why should our AI disease have funding taken away yet Diabetes get free prescriptions etc (I don’t begrudge those btw)!

[Hidden in reply to m0ezp]

Hey please don't apologise m0ezp, I feel awkward not feeling supported by CUK especially on a coeliac forum.

Now prescription food, my opinion is if we didn't get codex wheat on prescription we could have higher standards as codex could be interpreted as none of the toxic grains and below codex.

Also because of distribution costs of meds food on prescription is prohibitively expensive for the NHS so for example a coeliac could go to a Tesco's with a pharmacy and get 400g Juvela loaf for £2.80 from the free from aisle or go to the pharmacy and get the same loaf on prescription at a cost of £8.40 per 400g loaf. This is not fair on the recipient or the NHS and is not in anyones best interest as we have to protect the NHS from these exorbitant charges. So there has to be a better way of helping 'us'.

Jerry 😊

[m0ezp in reply to Hidden]

Yes, you're right about the pharmacy costs and our NHS is a precious resource. I don't know what the better answer is but I agree its a situation that doesn't work well for any of the players.

York CCG had a scheme which gave CD sufferers a payment card to subsidise buying from supermarkets. That seemed good in many ways but I can't cope with high fibre loaded bread unless the fibre is soluble and so I (thankfully can still) rely on Glutafin via prescription where I live. In many small towns and villages the GF range is understandably very small which can never cater for all our varied CD needs.

It's certainly something CoeliacUK hasn't (effectively) got its head around.

[Hidden in reply to m0ezp]

I think you've summed up the problem facing coeliac in some rural locations very well and there are no easy answers as local shops and high streets are struggling.

So I am sorry that you and others feel threatened by the loss of food on prescription.

In my area prescription food is not available and that doesn't bother me as I didn't get any when I could. I live in the countryside on the edge of a town and I can buy everything I want in the town so am lucky and I'm independent of the whole prescription rigmarole.

As there isn't a recipe section on GFG I post recipes on Healthy Eating and there is a Gluten free topic section, I post bread made with naturally gluten free ingredients on there.

Please see:

healthunlocked.com/healthye...

[m0ezp in reply to Hidden]

Its not right that different areas of England have different prescription cover. Mine in Calderdale, West Yorks, only does bread and flour now with an 8 unit limit/month.

I don't know what I'd do if I didn't have access to my prescription bread. I do bake bread when I have availability problems but never get anything more than a 2.5 inch high loaf!

Thanks for the link Jerry, I'll have a look.

[Cooper27 in reply to Hidden]

Can I ask, in other countries where any of the ingredients mean it can't be declared gluten free, are the likes of Whisky allowed? I'm simply curious

[Hidden in reply to Cooper27]

Good question. Not one I have the answer to, but would be interesting to know.

[Hidden in reply to Cooper27]

Here's what the CSA say about gluten free alcohol:

aussiecoeliac.com.au/gf-alc...

They don't list malt whisky because whisky is often stored and matured in old sherry caskets so an added issue for whisky.

They also say what they think of gf barley beers. 😊

[Cooper27 in reply to Hidden]

Thanks! I know some who completely avoid whisky, so I've always wondered.

[glutenfreemumuk]

Hi Mise,

Sadly my experience of Coeliac UK is not good. They said they couldn't help me when I first rang them with my Coeliac diagnosis (and feeling very poorly) as I was already on a medically restricted diet (no milk or egg). They said I'd need to talk to allergy charities. Only later from the Canadian sprue society did I discover that wasn't an uncommon problem for coeliacs/gluten sensitive people to have. Also I react badly to many of the foods they say are safe, but they don't seem to acknowledge the realities of the codex 20ppm not suiting a lot of people. I guess they have too many food sponsorships. Australian standards are so much better.

Basically there is very little support (other than GFG) if you don't fit into the standard category of being able to tolerate food that CUK says is safe. The GPs know very little. Also the doctors advise coeliac UK and use their info but it is incomplete and doesn't address lots of issues we have with diet and health.

I think they are now getting better with informing doctors (who are interested) about some of the new research.

Thanks for asking.

Are you involved with coeliac UK Mise?

[Hidden in reply to glutenfreemumuk]

Hi glutenfreemumuk. Thanks for posting. You hit the nail on the head there about GPs. My experiences with them have been dire. However I'm annoyed that it's left up to patients to do their research and keep GPs informed. I do wonder what the point of Coeliac UK is at this point. They may have started with good intention, but maybe lost the plot. No, not involved with them. I did join them back at the beginning ten years ago, and they were helpful in that my blood test was negative so good at explaining the need to push for further investigation. But with the standards better in other countries, they should at least try to up their game. With the law change a few years ago around people having to ensure food served in restaurants, etc. was gluten free if marked gluten free I contacted Coeliac UK after being glutened in a restaurant in a very obvious fashion that could be evidenced. They were very dismissive and said that I could contact the restaurant and state that Coeliac UK offers training, if they were interested! So, just a joke, as no come back for being glutened but nice offer of free training to the restaurant with no penalties.

[jox1]

part of the problem is that GF does not necessarily mean gluten free as others have said above. Given individual variation in sensitivity some individuals can tolerate 20ppm whereas others can't. The 20ppm limit is part of an EU regulation/directive and therefore manufacturers and celiac uk reference it but it should be part of consumer education that great care needs to be taken when choosing products which may contain or be cross contaminated by gluten. Perhaps someone here familiar with the celiac uk website could comment on their adequacy in that respect - I personally don't look at their website

[Hidden]

Hi StickyBloodMentor. Thanks for posting. As someone who doesn't get prescription due to no proper diagnosis I didn't realise that was the challenge. I was aware the prescription element was being removed, but didn't realise it was for everyone and that the consultation was so poor. Can't believe Coeliac UK didn't even reply to your local MP - that's just bloomin rude, never mind anything else. They just don't seem to be a strong enough voice for the people they are meant to represent. I agree the food directory is a bit of white elephant in many ways - helpful to have, but ignores the real issues.

[Hidden]

Hi jox1. Thanks for posting. Yes, agree that the educational side for consumers needs focus. I have visited their website and do find it a very poor site visually - seems quite dated, with a lot of information and not the easiest to navigate. There probably is good stuff on there but gets lost in the crowd. I think my main bug bear with them is on their lack of 'oomph' and weight in pushing for better stringency of policy and labeling, so pushing for more heavy handed laws for restaurants/cafes, and also ensuring all hidden gluten is identified on labeling and that if something is produced in a factory with gluten it is clearly stated as a requirement, not an option. I think they are failing their customer base and cow towing to the money-focussed manufacturers to make their lives easier.

[PoDundee]

Yes! They are in the pockets of food companies. They tell people it’s safe to eat products that contain gluten, eg. Codex wheat. This damages the health of many people. They are not people centred. They are representing food companies!

[Hidden in reply to PoDundee]

We need a new organisation at this point I think that simply focuses on the policy/labeling side. Nice little project for someone......

[Penel in reply to Hidden]

But only if you’ve got money to do it!

[Penel]

I’m not a member of Coeliac UK but I think it gives new coeliacs a place to get information, a starting point for a lot of people.

There are many other health conditions competing for money and attention from the NHS, and coeliac disease is one of the few conditions where you can change what you eat to improve your health. It may be inconvenient, possibly expensive, but I don’t think it warrants being on prescription unless you are on a limited income. (Prescription foods are still available in Scotland, Wales, NI.) Coeliac UK have little power over NHS spending, although they did lobby Parliament on this.

Food labelling may still be a real problem, but it has improved greatly over the years. It’s already taken several deaths from serious allergies to force the introduction of more comprehensive allergen labelling (Natasha’s Law).

Coeliac U.K. are offering grants to support various aspects of research, because research and development are expensive, perhaps they could do more...

coeliac.org.uk/about-us/new...

[Hidden in reply to Penel]

That's a good response Penel. Thank you for that. Yes, I suppose there are working within a space of lots of competing illnesses and funding constraints. Maybe joining forces with other charities that support illnesses that can result from undiagnosed/untreated coeliac might be useful. I'm thinking Arthritis UK, thyroid charities, heart disease, etc. Maybe joining the dots on how many illnesses and conditions can be underpinned by coeliac would enhance awareness. I've suffered from panic attacks in the past which would fit with MH charities, but they disappeared once I went gluten free and took B vitamins. I think it's the tip of the iceberg in terms of health impacts that needs a lot more exploring.

[Hidden in reply to Penel]

Hi Penny, I understand what you're saying but I wonder if it is a good starting point because I felt very isolated purely because my body will not tolerate gluten and gluten that is classed as safe.

So I got off to a terrible start and nearly abandoned a gf diet because food in their food list still made me ill, so this is not a good foundation for research as their research reinforces their ethos, in my opinion.

I'm sure that the majority of CUK staff are well meaning and think they are working for a good cause but they're not coeliac so they just repeat the codex mantra...

Jerry 😊

[Penel in reply to Hidden]

Hi Jerry

Sorry to hear you had such difficulties when starting out, being coeliac can be quite isolating enough! I didn’t eat any ready-made gf products when I started out, so didn’t realise codex etc was such a problem until later on.

It certainly doesn’t appear to be a very helpful organisation if you don’t fit their idea of “coeliac”. Their assertion that research shows that coeliacs are fine with 20ppm is based on old studies with limited participants. They really should amend their advise to let people know that we all have individual tolerance levels when it comes codex, and that some people need to avoid it totally.

The most recent research I could find comes from Australia, it’s a Cochran review from 2016 which looked at studies going back over many years. This is its conclusion:

“The studies reflect the variability in the amount of gluten that can be tolerated by individuals with coeliac disease and show a progression over time towards assessing the safety and tolerability of ever smaller amounts of gluten. In the absence of a large adequately powered randomised trial that compares low amounts of gluten intake (0 to 10 mg), the current evidence precludes establishing a definitive threshold level of gluten that is safe for all people with coeliac disease to consume.”

[Hidden in reply to Penel]

Thank you Penny, this is interesting and 10ppm I assume. When I first went on my diet I was into whole foods and went to a food demo days after being diagnosed and it was all to processed for me so I went naturally gluten free and then when I tried foods listed as GF but were made with malt or codex wheat I was ill, this was soups and pickles so very confusing at first.

Here's what the EFSA say and sadly the opinions are no longer accessible. But with all wheat and barley derivatives the panel felt they were unlikely to cause a severe reaction, now I don't think this is good enough.

foodallergens.info/Legal/La...

The laws on wheat derivatives are so that manufacturer can switch from one source of derivative without having the expense of changing the label. In the US and Australia they have to list wheat derivatives.

If we didn't have the ability to get codex wheat on prescription we would probably have none of the forbidden grains and within codex as gluten free and I could really handle that 😊

Here's another good source of gluten free info:

gfco.org

I really like their GFCO and could handle that too. 😊

[Hidden]

To add a bit of an update on this, I have spoken with Coeliac UK research contact and I'm still not massively convinced that they are doing coeliac sufferers justice. I questioned why GPs still so massively ill-informed, and the buck was simply passed back to the GPs not knowing what's what rather than Coeliac UK not pushing the agenda enough. Also queried the labelling on additives from gluten sources and the fact that products bearing the cross-grains symbol are still causing reactions for individuals. The buck on that was passed back to me implying that I might have underlying health conditions that the reactions are due to and not gluten. I firmly have lost all faith and trust in this organisation. Any product bearing the cross-grains symbol that I have eaten in the past 6 months causes reactions. I can eat the main ingredients on the list as fresh products and none cause reaction - put them all together in a packet that has the cross-grains symbol and I have a reaction. It's not rocket science to figure this out. The latest conversation was around yeast extract from wheat source that is used in crisps that have the Coeliac UK cross-grains symbol (Seabrooks). Coeliac UK are telling manufacturers that these things are perfectly ok, despite invidual sufferers having very different experiences. Utterly insane. I have now reached the point that I will be avoiding ALL products that bear the cross grains symbol or that simply are labelled as gluten free. I have another thread on here about tahini product from a whole food retailer that is produced on same line as barley malt but on Coeliac UK safe list. I'm still going to pursue a petition idea for clearer labelling and revisiting the 20ppm levels for very sensitive individuals. The only thing Coeliac UK are doing with their food list and certification is aiding manufacturers to produce a load of products that make people ill but line their pockets. They have convinced manufacturers that certain ingredients are ok that clearly are not (barley malt extract, yeast extract from wheat source, dextrose from wheat source, etc.) - if they are peddaling that trope, we have no hope of safe products. There is a strong arguement for them needing to face legal action on this. They present a good front, and do fund research and raise awareness, but seems entirely pointless if the fundamentals of their food list and certification is so massively flawed.