Voting Time - Gluten Free that does n... - Gluten Free Guerr...

Gluten Free Guerrillas

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Voting Time - Gluten Free that does not test for gluten: Your Views

Benjamin123 profile image

Hi folks,

Wondering where you all stand on products labelled 'gluten free' but do not actually test for gluten. I've had this quite a few times from companies when I've checked the gluten free status of their products - they put 'gluten free' on the label, but don't test for gluten, and state that they trust their suppliers to be providing gluten free ingredients.

Would you consume such foods, or not?

Have you had good/bad experiences with such products?

78 Replies

I was curious about this, this week, after coming across some dairy free cheese that is labelled both "gluten free" and "may contain gluten". I thought surely you'd have to be confident there's no chance of cross contamination, to put a declaration like "gluten free" on your product!

Benjamin123 profile image
Benjamin123 in reply to Cooper27

That is bonkers. Surely you can't have both things on the same label? No one anywhere seems to be taking charge of this labelling nonsense. Where's the Food Standards Agency when they should be doing their job. What brand was it?

The 'may contain' is such a farce. I've frequently seen this on products that are supposed to be dairy free/vegan. Rhythm 108 put it on their chocolate bars which are meant to be vegan - may contain milk. I'm intolerant to milk and I can tell you that there is most certainly milk in those bars both from a taste perspective, and from an intolerance reaction perspective.

'May Contain' - it either does, or it doesn't. They can't sit on the fence with that where allergens are concerned.

Just seems to be getting worse, and I think the proliferation of vegan/plant based has made it worse. Everyone is jumping on the band-wagon, but clueless as to the labelling/allergens risks. I've seen another product (Nature's Store GF bar) that has 'plant based' on the front of the label but lists milk and milk whey as one of the key ingredients, so entirely misleading.

Cooper27 profile image
Cooper27 in reply to Benjamin123

It was a little independent company. I emailed to ask if it'd be safe for an allergy, and they explained it's because one of their products contains stout, but they take all precautions to minimise cross contamination for the other (gluten free) products.

In many ways, it's not that different from a restaurant, and it's probably alright, but I just never know what to make of responses like that. It doesn't seem right that a "gluten free" label can be used without certainty.

For the vegan stuff, I know a few that don't mind a "may contain milk" label, because they're still doing their bit to avoid active use of dairy products. It's terrible if you've had a reaction to indicate it's not dairy free though, and that the companies are exploiting good faith.

Benjamin123 profile image
Benjamin123 in reply to Cooper27

So the vegan cheese company was going with 'belt and braces' overkill! Lol. It really is famine or feast for the gluten free labelling. How many have oodles of gluten wafting around and fail to declare, and here you have a small business considering all the options in its warnings! But, it simply leads to confusion as you say, and will lose them business for gluten savvy customers. Just seems someone needs to step in a put some hard and fast rules in place for labelling.

Knip profile image
Knip in reply to Cooper27

I avoid anthing like that, like I'd avoid the plague! It's crazy. They are probably just covering their backs, but do we take a chance? Err...NO! So very frustrating!

It can’t be called “gluten free” if it states, “May contain” on the label, and if I stumbled upon such a product, I’d be very quickly contacting the manufacturers, because that statement is totally ambiguous.

I seem to be OK with GF foods, but I really can't be certain. I have a fixed hiatus hernia...so reflux has been a problem for years, and will continue to be. I avoid anything that states "may contain", but yes, some products that I put back on the shelf probably contain less gluten than the GF foods I buy........

We are stuck between a rock & a hard place. If GF restrictions get tighter, we will find our already limited options diminish even more. Testing batches before starting/leaving production would be great for us, but can Companies afford to throw away batches that don't make the grade? Either the shareholder's are going to say No, and the smaller Companies......still profit margin.

Today, my GF toaster 'may contain' gluten.......yesterday I put my daughter's gluten containing bread in my GF toaster by mistake 😜. I think its probably the first time I've done it, but I can't guarantee it will be the last. 🤣 I've cleaned it out.........as much as you can clean a toaster, and I I'll use a toaster bag for a couple of weeks in the hope that any gluten burns off. If I have a reaction after that, hopefully it will teach me never to make toast on auto-pilot.

We all make the errors nellie237, and not easy living with gluten-eaters and staying GF. I admire anyone who can do that.

The thing with GF is all in the supply chain. If a product contains no grains/grain based ingredients, and the supply chain is 'safe' then the end product is safe. I'm not sure if I'm missing something vital, but it seems that 0% gluten is possible if the ingredients are traceable and the supply chain for ingredients safe. I think there is a lot of 'couldn't care less' in the GF market, and if companies are willing to label as GF and charge a GF premium, but not even bother testing the incoming ingredients and the outgoing products, how are the justifying the premium price that we are told is due to food waste/testing.

I acknowledge what you say about less options available if rules tightened, but that's no bad thing if it gets the crap off the shelves that is making people ill. I personally would rather a limited safe range than a wider range of things I can't risk.

I hope your toaster is safe, and as you say, not easy to clean a toaster.

I have a hiatus hernia too Nellie, and if I’m not having problems with gluten or chemicals in food, I’m having trouble with my hiatus hernia - recently both! It’s an absolute nightmare.

To be honest, if gluten toast found it’s way into my toaster, I wouldn’t be using it again, as I have problems, even if I digest even a small amount of gluten. It would be safer for you to invest in another toaster, because even if you don’t get symptoms, it doesn’t mean it’s not doing damage to your gut, so be careful.

Hi Ukelelelady,

Yes, the hernia is a pain in the proverbial. I'm certain that I would have had the coeliac dx at least 3 years earlier if all my symptoms hadn't been blamed on the hernia. I've stopped the PPI's for the past year to try and help nutrient absorption, but often struggle with the reflux.......and there's damage from that to consider. It's a balancing act.

Trouble with the toaster is, I'm likely to do it again.🤦‍♀️ I've caught myself about to use the wrong butter too, but then I can just put that in the bin. I need to stop making toast on autopilot, but its a task that you don't usually have to engage your brain to do, and my brain doesn't often like being utilised.🤣

The pain is horrendous isn’t it? I also stopped taking PPI’s a few years ago, because I was concerned about a few things (in relation to them). I stopped them ‘cold turkey’ which I found out afterwards that you shouldn’t do 🙈 and boy, did I know it. The rebound acid was horrific, eventually I got it to settle down though. I can’t have any mayonnaise with spirit vinegar in as that makes the pain worse, or lemons and other acid foods since stopping them. You’re right, it is a balancing act.

I sympathise about the toaster, I suspect we’ve all done things similarly to this when on auto pilot. As a result, it’s sent my OCD into overdrive. Do you have a grill on your cooker that you could use, instead of a toaster? I no longer have butter in the house, so I can’t accidentally use that in error.

I was on 2 X 30mg Lansoprazole for years. I stopped 30mg at coeliac diagnosis & four months later the Gastro told me to stop the other 30 prior to biopsy. If I'd still been on 60mg he would still have stopped me cold turkey. My gut was in such a mess at the time, that it was difficult to tell whether stopping them had any impact. The gastro was going to check acidity, but it didn't happen because the clinician doing the endoscopy hadn't received any info, and had to ask me what they were looking for, and I just didn't think to mention acidity......kicking myself now. I can't complain about it because they were really back-logged due to Covid.

I do have a grill which I used to use for all toast until dx. Then, when I needed a toaster it didn't seem fair not to get my daughter one too, as she has more health problems than me.

I'm sorry you suffer from OCD🤗🤗🤗

Yes they usually stop you from having Lansoprazole (or other PPI’s about a week before they do an endoscopy), 60 mg is quite a high dose too. Judging by some of the things it can cause, you are better off without it. One of the reasons I didn’t want to take is, was after diagnosis of Coeliac disease I found out I had osteopenia, which is a precursor to osteoporosis and wanted to try an take control over some of my health issues, especially with so many other things being out of control at the moment.

Covid has caused a lot of problems for everyone with other health issues too, I haven’t had my annual check at the coeliac clinic for over two years now, but the NHS is in such a state at the moment, it’s not something I want to complain about.

Yes, OCD is a pain, but was under control to a degree until Covid (it’s contamination OCD), that it’s made it hard to function at times.

Like Cooper27, I came across a product which said gluten free and then down the bottom below the ingredients said may contain gluten. Good job we check! Not that it should be so difficult. I agree it is getting worse.

It just creates confusion. Bizarre labelling.

I’d definitely contact the manufacturers, you can’t call something gluten free, then add a ‘May contain’ disclaimer as well.

I did contact them and was thanked and told they will look into this further....... In the meantime, it looks like we are all going to have to be extra vigilant now as so many changes going on.

Yes, being vigilant is the only way. We can’t afford to take chances on this. At least they said they would look into it. Maybe, if we all contact each manufacturer, when we find these things, event they will sit up and take notice. If they don’t and they lose business, they can’t blame us!

Hell no,

Not eating gluten free food even if it’s labelled. Sorry I just don’t believe them. Been ill most of my adult life - not taking a risk. Poor knowledge of cross contamination although my private gastro was very aware.

Plus, a lovely independent coffee place near where I live, changed calling their gluten free cakes to low gluten. The staff really wanted to know about coeliac disease (I use this term to cover NCGS, gluten/wheat intolerance). They’ve seen me go from being in a wheelchair to a power walk. So, I sent them a thank you card.

But people in ivory towers - are clueless to the impact it can have on our lives. Slap a label on to increase prices ???

😊

It is just a marketing ploy as you state. It's the confidence of food manufacturers who slap that GF label on and don't even bother with testing. I've recently seen something by the same company with 'Plant Based' but main ingredient is milk. They just all jump on a bandwagon for the bottom line. What's even the point of 'low gluten' - not suitable for coeliacs, not appealing to 'normal' cake eaters?! That's pretty amazing to go from wheelchair to powerwalking by simply removing gluten. Do you have additional health issue, or did it all come down to diet?

Yes plant based with milk - apparently sap and dew has been renamed 🤪

. Low gluten, I’ve seen this in other places and thought weird. I was very nutrient deficient because my gut would not work properly. So, I quickly learnt about vitamin, minerals and bioavailability. (But root cause SIBO as complication).;

Pretty amazing. Well done you for finding your answers and making such an amazing turnaround. Shame to have to suffer for so long to get there, but amazing to be able to figure out what was what and address it.

It cost me but Doctors know pretty much nothing about dietetics. 300 trillion cells in the human body all requiring essential micronutrients (vitamins and minerals) so, yes our symptoms are wide varied and we may see different specialists (rheumatologists, neurologists, dermatologists, or even better psychiatrists because you cannot possibly have that many things wrong with you!!!) And you can’t have total body pain!!! Yes I do - you just didn’t do the right test 😊

A lot of people give up gluten because they think it’s some trendy fad, and as such, people who have businesses will be catering more to them than people who truly have issues with gluten. It does a discredit to us, because people think it’s just a lifestyle choice, and not a real health issue. I treat gluten like Superman treats Kryptonite!

You mentioned that you used to be in a wheelchair, was this because of gluten? (Hope you don’t mind me asking).

Hi Ben, I'm currently trying to find out the source of the Flora plant light margarine...it just says 'vinegar'. Now, here's the thing, almost all products today state the source of the vinegar if it's included. I was unwell after having the margarine in some mashed potato, scoured the labels and couldn't find anything at all that I had ingested that could have been the culprit...the only new thing being the margarine! It might not be responible but I daren't use it again just in case it's 'malt' vinegar they have used. I'm back to Vitalite again now. 😒

Benjamin123 profile image
Benjamin123 in reply to Knip

I love how Flora have jumped on the 'Plant based' market when their products have always been vegetable oil based and free of dairy! Yes, I'm with you on the vinegar - if they aren't willing to divulge, then it's not worth the risk. Pretty poor show that it made you unwell.

BabsyWabsy profile image
BabsyWabsy in reply to Knip

How annoying. If it was malt vinegar it should have been labelled as such with Barley & Gluten in bold in the ingredients.

Ukulelelady1 profile image
Ukulelelady1 in reply to Knip

Hi, as far as I’m aware, the only vinegar we can have (coeliacs I mean), is spirit vinegar.

White wine vinegar and cider vinegar is fine as well. I am super-sensitive to malt vinegar but have never had an issue with cider vinegar (I buy Aspalls) and I use it a lot in cooking.

Thank you, I was forgetting about cider vinegar.

Malt vinegar needs to be removed from every coeliac list. I once contacted a well known malt vinegar brand who said they would never recommend their malt vinegar to anyone with coeliac, yet our friends at Coeliac UK seem to think it's just peachy and fine.

I trust them less than I did - not a big meat eater, but occasionally like to have a good quality burger. They almost always have wheat in them so hadn't had one for years (apart from ones I made from scratch!). Anyhow found an organic one that had gluten free on the label. Each time I've eaten one I've had stomach cramps etc.

Benjamin123 profile image
Benjamin123 in reply to Frodo

They just miss the mark so horribly. I genuinely believe few if any of them have a clue what coeliac is or why gluten is such an issue. I, similarly, can't eat any burgers or sausages that have gluten free on them either. There seems to be more of them out there now, which seems good, but if a person with coeliac can't eat them, they need to say 'lifestyle gluten free' rather than a generic gluten free. If the ones who do test are stating they are safe, f' knows the state of the ones that don't test and claim they are safe.

That’s a good idea Benjamin! Labelling things ‘lifestyle gluten free’, although I hate the idea that most products would then be catering more for them, rather than for us.

Good question - but I can't answer it, as I actively avoid processed foods labelled as gluten free - whether or not they are tested, they are working to the 20ppm standard, and I have decided this is not good enough.When buying wholefoods, I do try to stick with those labelled as GF, and this I do trust, as it means they are avoiding cross contamination it is not about ingredients. I don't worry about things like whole lentils and beans, which I can wash before cooking them.

I think that is a good policy. Why run the risk?! Just seems so bloomin bizarre that these freefrom sections keep expanding with products but people with coeliac are either made ill by them or too wary to run the risk. Surely making them 100% safe would boost their market. I sometimes wonder as well how accurate the testing is. If a ppm of gluten is infinitesimally small, and a single gluten peptide strand smaller still, are the tests anywhere near accurate to handle that? It seems, to me, that the food manfacturers take perfectly gluten free ingredients, send them through a production line where they become contaminated, and then smack a gluten free label whether they have tested or not. I think we need more GF companies actually being run by people with coeliac. Perhaps coeliac UK would be better placed, rather than putting their funds down the drain in self-promotion and big salaries, to invest in gluten free food producers who have coeliac.

In Australia, they test to the lowest detectable level for gluten, which is 3ppm and they are really strict about what is allowed to be labelled GF. UK could learn a lot from the Aussies.

Knip profile image
Knip in reply to BabsyWabsy

Whilst on holiday I found some multipack little animal shaped biscuits that were produced in Australia which were gluten free. Brandname 'Orgran'. They were really useful...coming in small bags and just right as an 'emergency' snack. Wondering if anyone know if they are available in England. I had absolutely no problems with them. Perhaps that's because they take the whole GF issue more seriously down under.

BabsyWabsy profile image
BabsyWabsy in reply to Knip

I have seen Orgran in UK. Tesco stocked some of their products for a while. Didn't see any biscuits though, but the products were very expensive.

Knip profile image
Knip in reply to BabsyWabsy

Thanks for your reply. I'll get my daughter in law and son to keep an eye open for them in Tesco. The store they shop in is classed as a superstore, so presumably if they get them in stock, they should have them there. Those I bought overseas were the equivalent of about two pounds for five or six mini packs...but that was five or six years ago...so I'm sure they would be more now. They were great for me to have a treat when the others were tucking into delicious looking cakes! xx

BabsyWabsy profile image
BabsyWabsy in reply to Knip

That is such a treat. And don't we appreciate it?

Hi Knip, on basis of your post I sought out Orgran on Amazon. They have really weird pricing for most of the Orgran products on there, but some are priced at 'normal' price so I chanced the buckwheat pancake mix. I approched it open-minded as I can not tolerate even the Dove Farm Freee range (which is meant to be safest in UK). Day 3 of eating pancakes, and nothing bad has happened. This is genuinely a revelation and so clear that the issues I've been having for past couple of years is bloody gluten in even the products that claim to have no measurable gluten (take a stand Genius bread who told me they have no measureable gluten but leave me ill and in pain, and Seabrook Crisps with your gluten free factory that uses barley yeast extract in all but one or two flavours). I'm now ordered the chocolate cake mix as the ultimate experiment. They even label the dextrose on the ingredients as from maize. Why oh why oh why can we not just have those standards here. I'd almost move. Thank you for flagging up this product range.

Worth knowing. Thanks for sharing.

Benjamin123 profile image
Benjamin123 in reply to Knip

Had a little check, and you can buy online in UK, if you scroll down the retailer list. orgran.com/where-to-buy/onl...

Knip profile image
Knip in reply to Benjamin123

Thanks Ben, appreciate your help. I'll take a look! 👍

Ukulelelady1 profile image
Ukulelelady1 in reply to Knip

I think they do take gluten free a lot more seriously in Australia. That’s the impression I got from my daughter when she went out there.

Singinglouder profile image
Singinglouder in reply to Knip

Hi. Just noticed the Orgran mini biscuits are 20% off at Ocado at the moment (£2.79 for a multi pack), along with quite a few other Orgran products - but only if ordered by the 30th - sorry, must be the end of the offer, and I just hadn’t noticed before. They stock them regularly at full price, tho, if that helps - plus pasta, flour, gravy mix etc.

PS There are 8 little packets in a multi pack! Often also available in health food shops, but then they are pricey.

Knip profile image
Knip in reply to Singinglouder

Thank you for that...I'll look for an Ocado slot and get booking...just time for Christmas! Great to know they stock them in any case. Appreciate your reply. 👍

Singinglouder profile image
Singinglouder in reply to Knip

My pleasure - enjoy your treats!

Whydothis profile image
Whydothis in reply to Knip

Orgran are excellent! I won't buy any other gravy mix now, as the Bisto GF has the additives I don't want. Their pasta is good too, when I can find it, but I haven't seen any of their other products in the UK

Where do you buy from?

A little whole food shop in a small town (UK)

Can I just clarify if you are referring to branded products or supermarket own label products?

Hi BabsyWabsy, branded products.

A well established brand will, in theory at least, be very careful about their procedures and testing protocols because they have to protect the brand reputation. Their Technical teams are meticulous about ensuring all correct procedures are used, including verification of cleaning, GF testing methods and results. The Tech team is also responsible for checking that everything on the packaging is correct and meets legislation. Quite often though, some details are added or removed by over enthusiastic commercial teams who will have their own totally different agenda. i.e. sell more product, when they lack technical nouse. Although it is clearly wrong, commercial teams (sales) always carry more clout than technical teams who are often seen as 'stopping' sales, when all they are trying to do is make sure it is right in every aspect. There are more product recalls for mistakes on packaging, mainly undeclared allergens, than anything else. Private label (supermarkets) rely on the manufacturer's technical department, but also have their own technical managers who are responsible for making sure everything is right before a product goes on sale, so a second layer of checking. Typically, this includes going right back down the supply chain to the supplier of the tiniest ingredient. But, even with this belt and braces approach, mistakes happen. FSA guidance here: food.gov.uk/business-guidan...

There is no legal requirement to test though, and multiple GF labelled products on market are not and have never been tested for gluten by the actual manufacturer. They maintain GF on basis of ingredients used and the narrative their supply chain tells them. Examples are Northern Bloc icecream, Eat Vive and The Tofoo Co.

Testing is good practice and recommended by FSA. If you were making both gluten containing and gluten free products you it would be unwise not to verify any claims made. However, I have worked in places where there were no ingredients used which contained gluten, oddly, one of those you mention below. However, they recently launched a coated tofu product, so I would expect them to be making this in a completely seperate area, which is likely as it requires different equipment. I may be able to follow up on this. The Ice Cream manufacturer is local to me, and again, no gluten containing ingredients are used. Never heard of Eat Vive.

You know everyone! Northern Bloc's practices I'm aware of as the product gave me coeliac symptoms, as did the tofu. I am perfectly fine with other brands of tofu but the Tofoo one made me really ill. They did say it was safe, but I really was left not knowing. The Eat Vive is based in Leicester and saw one of their adds on FB so just ask out of curiosity as their products do look really nice, but they don't test. Very confusing really.

There seems to be agreement in this thread that most (not all) labelled-gluten free products in the “free from” aisle of supermarkets are questionable regards suitability for the coeliac and for those with gluten related disorders. As many lovely people on here don’t do well with gluten free products - unfortunately. Me included. Symptoms arise from eating “free from” products.Is it gluten contamination - the 20ppm level too high for most coeliacs? Is it possible gluten cross contamination? Is it the type of bacteria in the gut? Is it other food intolerances or allergies?

I think anyone diagnosed coeliac and gluten intolerant is doing well if avoiding gluten is all it takes to start thriving again. A damaged gut needs healing - whether it was gluten that damaged it or not.

I’m personally starting to think the ‘free from’ aisle really means “free from food”. Seems like most products come under the category of ultra processed food. Not really notable food in the sense of nutrition at all but calories. 🙃

You're spot on. It just blows my mind that these food ranges keep expanding but a lot with coeliac can't eat them. If we can't eat them, and 'normal' people can eat normal food, who the hell is buying enough of these things to justify shops stocking them. When I pass through the freefrom section (and not stopping) it's pretty much empty, or just the odd random person browsing the shelves and walking on. I really would just love to see them binned once and for all in recognition of the fact they keep people ill, or the standards are sharpened up to provide the quality people with coeliac need. It's just basic exploitation of illness for profit with no concern for health or the distess that bad health cause. What can we do? Who can we get on side to make this change? The Coeliac APPG disbanded years ago, Coeliac UK are brutally crap and get quite nasty (in my experience) when anything is queried/challenged. Can we form a user/consumer-led lobby group???? Can we get some publicity and media coverage?

If it isn’t tested, how do they know it’s gluten free? I wouldn’t have confidence in a company that didn’t test, but there again, I haven’t asked any manufacturers if they DO test for it, I would naturally expect a company to do standard testing for gluten, if they want any credibility.

As you know I am having problems with foods at the moment, so maybe the answer could lie in the fact that these manufacturers are not testing.

I only became aware of the non-testing issue last year, and it came as quite a shock. It really did get me rethinking the whole notion of 'safe' GF foods, and if the rules are that fast and loose how frequently are manufacturers who do test actually testing their products. I thought cutting out gluten was the end of this journey, but it was not, it was only the beginning of a steep and frustrating learning curve. I'd almost emigrate to Australia for the standards they have, only I'm not keen on their spider population. The issue with the crap rules is that the really stringent companies get their reputations dragged down by the non-testing, less that stringent testing companies. There would be benefit in a 'graded' standard in UK if they are insistent in keeping this pants 20ppm codex that would help the good quality companies stand out - so 'gold' if no measurable gluten, 'silver' for within codex and 'bronze' for the non-testers. That would either help eliminate the lifestyle gluten products off the market, or would push the crapper companies into improving their standards.

This is such a good idea! Maybe we could get an MP on side and push for this to happen. It would certainly help us decide which products are the safest for our diets. I think you’ve really got something there, maybe also we could get Coeliac UK on board with that too, they’d certainly earn more respect from this group if they did!

Coeliac UK will have zero interest as they are the biggest gaslighters we have in UK for the inefficacy/risk of the codex 20ppm. Back in the day when the 20ppm was being debated/introduced (circa 2012) they wanted to keep the limit (as it was then) at 200pm. I see CUK as nothing more than a food manufacturer lobby group/enabler of poor practice. They make their money out of businesses producing GF and have no interest in making things tougher for their cash cows. MPs, equally ineffective. If there is to be change it is going to have to be 'user' driven. I think linking with the Australia coeliac advocate charity would be a good start.

That’s very disappointing to hear. You would think that they would be happy to get people well again after their ordeals. Let’s face it, a lot of us have gone through the mill in order to get diagnosed in the first place. I’m still a member of Coeliac UK, but the more negative things I hear about them, the more I wonder what I’m paying for. At the moment, the only benefits are their gluten free app, but after decent discussions on here, I’m not sure I even trust that anymore.

I don't believe that they follow the science of anything. They were still saying barley malt extract was ok up until an American coeliac scientist set them straight - once she presented the data, they had to concede that it was not to be recommended bar that which falls under the stupid codex level. Anytime I have contacted them regarding concerns of the 'gluten free' nature of some of their products I've had a series of answers that have ranged from the evasive to the downright idiotic including 'a gluten free diet does not always work for everyone who has coeliac'. They are plonkers who know the codex is keeping a lot of people ill, but refuse to conduct any research on that.

I do remember having a conversation with them about malt vinegar many years ago, and they seemed to think it was ok, when I queried it. ( I seem to remember them saying it was ok due to the distilling process.) I’ve looked on their App today and found that it’s not listed as gluten free, only wine vinegar and balsamic - I think they say spirit vinegar is ok though. I’m pleased that an American scientist was able to shed some light on the subject. It seems little by little, other foods are being uncovered as unsafe for coeliacs. I can’t eat codex wheat starch and my consultant knows this, and to be honest, I do think more of us should be wary of it.

Coeliac UK will push things that make people ill until they are boxed into a corner and unable to do that anymore. They are, in my books, dangerous to the point of sociopathic in how they gaslight and downplay that lack of safety in a lot of what they recommend. I always remind people that their current CEO started her career in marketing for Coca Cola - the company that destroys lives and health the world over, in addition to environmental damage. They don't give a fig for anyone with coeliac, but give a lot of figs for the cash that rolls in. Substandard and not fit for purpose.

I had no idea about their CEO started their career working for Coca-Cola! All this information you are providing is quite alarming. I’m certainly looking at them in a different light, with what I’m discovering.

I am grain free and my diet consists of meat, veges, fruit, raw e=dairy and nuts. I don't run across much of labels reading "gluten free' since most of those products are junk food.

Even some veggies and most fruit upset me. I’m doing the low FODMAP diet and it’s surprising how many things are not allowed on there. A lot of my favourite foods are now on the ‘naughty step’ for giving me dietary issues.

Check out – “Waitrose Free From 5 Chocolate Slices220g” - ingredients include: wheat glucose syrup!!! And it’s not even in bold! Labelled as Gluten Free.

This is absolutely scandalous. It would be great if someone on here who’s well enough could please kick up a huge stink with Waitrose about it. I’ve eaten horrible Waitrose Free From on the odd occasion, usually as a gift at Xmas, but never again.

I’d been gluten-free for 3 years, then I had a gluten exposure (a friend didn’t understand contamination) & my autoimmune attacked my brain. It was horrible, a constant strain in my head – I couldn’t even play computer games, then 9 months later I woke up one morning & the brain pain was gone, but some of the damage is permanent. These days I struggle to even write an email which is why I’m not active on here, or anywhere. Non-coeliacs just don't understand how serious it is.

Researchfan profile image
Researchfan in reply to MBxyz

Hi, thanks for pointing out. I’ve seen this on Waitrose free from too, and thought how ridiculous - but then actually at least they’re being upfront with the source. Most glucose syrup in the UK is likely from wheat or corn - it doesn’t have to be declared. It’s excluded from the Codex Alimentarius and doesn’t have to be declared under allergy law. Similar risk to codex wheat starch - there’s not meant to be any gluten in it so meets the less than 20ppm.

Totally agree that it shouldn’t be allowed though. I’m sensitive to wheat (igE antibody) so it’s not just coeliacs, the stupid 20ppm law needs updating.

🤗

MBxyz profile image
MBxyz in reply to Researchfan

Thanks for your reply Researchfan 🙂. Presumably it's processed de-glutened wheat in the syrup, but I wouldn't take the risk now I know about it.

Benjamin123 profile image
Benjamin123 in reply to MBxyz

Also contains dextrose. Wouldn't touch it with a barge pole. I wish we had independent gluten testing that we could access ourselves to have this crap properly tested. That's crazy that your brain pain left damage, but have read that coeliac impacts brain. No one takes us seriously anywhere. You just have to live a hermetically sealed bubble to survive. That's pretty bad. I'm sorry to hear you've ended up with such a level of damage. Did you get to have a scan to identify the damage, or was it just via the impact of the pain?

MBxyz profile image
MBxyz in reply to Benjamin123

Thanks for the warning about dextrose. Sorry for delay replying- I don’t have many good days & find writing even an email challenging. I put off replying to people till I have a better day, & most people don’t understand.

My GP didn’t take it seriously. When I said about the brain pain he said I have to be more careful to avoid gluten in future, and memory loss is a normal part of aging. I’d been GF for 3 yrs before being glutened, & I’ve read that can make the autoimmune attack much worse when you are exposed to it. Sadly it was a close friend who contaminated my food as she didn’t believe me about gluten (makes a nice change to hear from you, someone who does believe me). I’ve read most contaminations are a result of friends & family not understanding. Maybe we need a concise, informative awareness video put on youtube that we can email friends the link.

Benjamin123 profile image
Benjamin123 in reply to MBxyz

Friends/family just don't get it, and some people just don't want to get it. There is a some bizarre trend for those avoiding gluten to be labelled 'faddy eaters'. You lose a lot of respect for people in this gluten free game. Equally, I find GPs and even NHS dieticians to be clueless on the hidden glutens e.g. dextrose. You got to steer your own ship with this one, and mentally give 'two fingers' to anyone who disregards you.

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