ILL from gluten free food. Again. - Gluten Free Guerr...

Gluten Free Guerrillas

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ILL from gluten free food. Again.

Benjamin123 profile image

So let my guard down and had some gluten free food: Genius sausage rolls, and Nomo chocolate. Today - extreme GI pain, joint pain, nerve pain, and a lovely big mouth ulcer. Is it ok to use expletives on this forum, or will that get me banned??? Genius have assured me in the past that their products have no measurable gluten - I suspect that may be a lie. Nomo have also assured me their products are coeliac safe - I have since learned they process gluten products onsite. I have emailed Genius and Nomo again asking for clarification on ppm measurements in their gluten testing of finished products. I am truly sick of these food companies making me ill. I am truly fed up having to cook every morsel of food from scratch lest I get ill. Grrrrrrrrrrrr, I so want to use more colourful language right now. Where the hell is the revolution of rebelling coeliacs demanding change????? Where are all the people who are fed up being treated like this and are willing to fight for better?????? Where's the coeliac army battling the cause????? Folks, we need better than this. It's a shameful crime on our bodies, our health, our happiness and our abilities to live any measurable quality of life.

54 Replies

Morning Benjamin 123, I don’t suffer from CD but hubby does. He had a GF stout on Tuesday and is still suffering. We have been up since 1 am as he can’t sleep when he gets Glutened. I normally cook everything from scratch but every now and then he fancies something different. GF foods cost a fortune and you cannot guarantee what happens during processing. What annoys me most is when people say that it is ok to eat out and just have a steak, they cannot see any problem. When you try and explain cross contamination they don’t understand and think you are being fussy. It is about time CD is given a higher profile.

Hi Bazmack48, sorry to hear your husband got ill. Yes, the beer/stout is a no go in my books. I just do not see the point in all this products swilling around the market that do nothing other than make people ill. I have tried to have things tested via companies that test for gluten, but they will only do commercial work. None of them, in my belief, are safe and need clearing out of the shops. Coeliac has no profile in UK, and they who's name I will not mention are the reason. CUK are roadblocks to progress, not enablers. They need shut down too.

I too get ill from almost all GF commercial food, whether or not they contain gluten I can't say, but I definitely get a 'glutened' reaction to xantham gum, which is in so many of the products. I also react to oat products (even GF ones) and now some corn and maize derivatives. It goes on.

It's very frustrating. The Australian coeliac society will test products for their members ifthey have been glutened, at no charge or cost. We need the same here in the UK. You're left in a limbo of not knowing what's what. No random spot checks of these products on shelves by anyone in UK.

Right I am packing my bags.

Hi Benjamin123,

Absolutely gutted for you. It’s a ***** disgrace. Yep, cooking from scratch, limited diet but just that once in a while, to push the boat out and have something a little different ends in disaster. Companies do not understand, do not taking responsibility - you have gluten on site, clueless really. And yes, we have no real backing to support us.

I do hope you manage to recover and quickly. All I can say is this

Angry cat

Thank you, and the picture is entirely spot on!

Ooh I'm sorry you feel so rotten Benjamin. I know, sometimes I just can't be bothered to cook.

I buy Genius fruitbread and am OK with it. I haven't tried the pies or sausage rolls mainly because I think I'll just end up disappointed.

"Where the hell is the revolution of rebelling coeliacs demanding change". I think that there just aren't enough of us; of the estimated 660,000 coeliacs in the UK, only about 160,000 have a diagnosis. A large chunk of us are of the opinion that Coeliac UK are not fit for purpose, but maybe we all need to join and try and make a difference there.

Thanks nellie237. I've sent enquiries to CUK in the past regarding so-called gluten free foods making me ill, and the response has been entirely dismissive, generic in content, makes no mention of the codex 20ppm, and just states that if it is labelled gluten free then it *is* gluten free. They don't consider the testing, any authenticity of the GF assertion or make any mention that not everyone can tolerate codex. They make me more and more angry with each passing day. The level of disinformation they support is unreal. I genuinely would not join, but would advocate for their closure.

Hi Benjamin I’m so sorry for you and hope that you feel better very soon.

Well done for asking the companies and it will be interesting seeing their response.

This is why I prepare my own food from scratch so that I stay safe and well, so I get your frustration and again I hope you feel better soon.

Benjamin123 profile image
Benjamin123 in reply to Jerry

Thanks Jerry. It does seem to be the only way to stay well. Every now and again I think, sod it, I fancy something different. And each time, without fail, made ill. Genius claim no measurable gluten but I notice they now sell overseas and wondering if their production standards have dropped. Genuinely don't believe any food company at this stage.

Maybe this is something that would be reported to the BBC Watchdog programme for them to investigate and look into on behalf of Coeliac sufferers. They have the tools to carry out research on behalf of us, and to confront the business community to ensure a safer product is produced for those suffering from Coeliac.

Benjamin123 profile image
Benjamin123 in reply to Sailor56

Funnily I had thought about investigate reporting Sailor56. There is a guy on Twitter who is a food journalist who writes on coeliac/gluten but he seems to have no appetite (excuse the pun) to look at the codex level for gluten, or doing anything major on the standards. He does touch on it sometimes but it genuinely needs a big expose, from the quality of the food, the level of addiditives, the cost and the cross contamination elements. Watchdog might be the very people.

Bro, I am sorry this has happened to you it is infuriating and so disappointing. Some people react to emulsifiers and stabilisers in products, some of which are wheat derived, then there is that abomination 'deglutinised wheat starch'. Used as a cheap ingredient, but still having 20ppm of gluten. There are stringent regulations around making a GF claim in UK (believe it or not). The manufacturer must prove that their systems and processes prevent any cross contamination. Cleaning down is meticulous, using swabs to verify the absence of gluten. Annual audits take place to ensure the claim is valid. You are right about no spot checks though. Having worked for a couple of the big retailers, I do not recall this being done. You may not be able to get any testing done, but you can buy the swabs privately. Quite expensive, but maybe worth it for peace of mind. HELLO@GEMSCIENTIFIC.CO.UK this company makes them, others are available.

Oh, thank you for that. That's food information. I might look into those swabs. I have also seen gluten testing kits but Coeliac UK said they don't work. We could do with a testing lab that tests for non-commercial customers like ourselves.

We could do with a friendly lab that would do this. Most labs are now part of large organisations now. There are some 'pregnancy test' type kits available now to test if you have been glutened, but they are very expensive. In any case, as an adult, you would recognise the symptoms.

I hadn't realised those types of kits existed. Are they still available, or have you tried them?

This really sucks. I hope you feel better soon.

I don't mean to belittle some coeliacs but I honestly don't think some really understand it. I follow some coeliacs on Instagram and they are always eating out, eating loads of processed gluten free food and often complaining they feel ill, but never seem to associate it. It's like when you tell normal people you are coeliac and they tell you how much choice there is now and how so many places cater for it. Ummmm that's not how I see it! I don't trust anyone to prepare my food now. It is incredibly frustrating not being able to just grab something, anything, when hungry. That's what I miss the most

Benjamin123 profile image
Benjamin123 in reply to codycat

I agree codycat. I think a lot are living in blissful ignorance, but staying ill. I used to be one of those. The power of marketing is big in convincing people these foods are ok. Few are aware of the codex allowance, and are shocked that GF can be put on a label without actual end product testing. These GF foods are an abomination to anyone with coeliac.

Codex is also a nightmare for those of us with a wheat allergy.

It needs to be scrapped.

I wish they would, but its cheap, so it will stay. It is too profitable.

Nomo chocolate contains as substance called inulin - I forget what it actually is there for - but many people coeliacs and non-coeliacs react to it, myself included. I check every single label - I avoid maltodextrin, dextrose etc unless the source is given. I shop a lot at Waitrose because their own bands do say thinks like "maltodextrin - wheat derived" or maltodextrin - potato derived" in their normal stock, not just the gluten free. Im in UK - Ocado now stock the entire food range of M&S, I haven't been glutened at all by their gluten free range.

Thank you. Inulin is an odd one and I have looked into that before. I'm not too sure what it does either. Nomo have assured me it's not gluten-based, but clearly not something the human body wants. I've had bad times with M&S foods, so I avoid, but thank you for recommendation of Waitrose and excellent they go the distance with labelling. I don't have one near me, but will look online.

Yes everyone says inulin isn't gluten based, and doesn't contain gluten; but lots of people, not just coeliacs, have a reaction to it - it makes me very bloated and uncomfortable. Waitrose are a similar price to M&S, I used to drive past one every Wednesday and went in and got lots of lovely stuff - their fruit and veg is great too. My husband has an allotment and grows most of ours, but there are things he can't grown in our climate. I do hope you find out what is causing your problem.

Liz

Thank you Liz, and I'm definetely going to check out Waitrose. Top tip, thank you.

Sorry to hear it’s happened again. I can imagine how careful you are. I agree with you completely that there should be a way of getting these foods easily lab tested for gluten presence so that the manufacturers would have to be more accountable and not get away with glib claims.

I have some genius sausage rolls in the freezer that I was going to try out one day, but I suppose my husband will have to eat them now. Like yourself, I have to be very careful and get fed up with having to make everything I eat myself all the time. It can be very tiring.

Inulin is also a problem for me. After a very bad reaction to a White Rabbit GF pizza with inulin in it, I now always check for it. When I contacted the company about the necessity for inulin in their product, they just brushed me off with the claim that it was part of the flour mix they used and didn’t intend to change it in the foreseeable future. So basically, they didn’t care and were quite happy to let me know that. Quite astounding really. Where do you go from there?

Benjamin123 profile image
Benjamin123 in reply to MTCee

Their attitudes are terrible. If a few people get ill, what the heck when you are pushing product units. I'm now wondering about inulin as another commenter has mentioned it. Don't let me put you off trying the sausage rolls, as we all seem to be different in terms of tolerance and what we react to. They are actually quite nice, but just not for me.

Yes, sorry I hadn’t seen the other post on Inulin when I made my comment. I was really poorly after eating it, and I’d had it several times before the penny dropped. Once I checked the packet I was flabbergasted, the symptoms are so similar to being glutened.

Hi Benjamin. Sorry to hear you feel poorly after being glutened on food that should be OK. It just isn't good enough and reading everyone's comments on here shows how common it is to get glutened from food you should be able to trust. It was apparent to me, during lockdown, when I ate only food I prepared myself, how well I felt for a long period of time. Frustrating that this whole issue seems to be dismissed when really it should be investigated. GF sadly doesn't always mean GF.

I just think it's a scandal. Why the hell is no one doing anything about it, and why are we supposed to put up with it??? Food manufacturers are interested in profit and reputation. They simply brush off and shut down when complaints are made. Yes, cooking your own from scratch seems the only way.

As a coeliac myself I found I was unable to tolerate other things such as onions, peas , baked beans , anything with a Skin on triggers a huge reaction . Give the low fodmap book a go , it really helps

Benjamin123 profile image
Benjamin123 in reply to Pg55

thank you, that's good recommendation. I've been reading recently about phytic acid that is in the covering of nuts and legumes, and how they need to be steeped overnight to break that down. That is a very good point. I think coeliac just naffs up our GI tracts generally and it's a down the hill spiral from there.

Pg55 profile image
Pg55 in reply to Benjamin123

It’s bloody hard work that’s for sure !!

Hi Benjamin123, Gluten free foods are just processed foods that are supposed to have no gluten in them (I am not so sure if they have or not) they are expensive and disgusting, I wouldn't mind the expense too much if they resembled the gluten laden ones. What gets me is the fact these company's package foods and stick gluten free on the packet and charge a fortune for some foods that are by nature gluten free. This is the plight of the coeliac I am afraid, I try to avoid the free from counters like the plague. Good luck and take care. Ruth

Thank you Ruth. Eating fresh and natural seems to be the only answer to our conundrum.

On a lighter note I bought some haddock the other day and on the packet in the list of ingredients it said might contain fish, actually I was hoping it did. Ruth

Can't be toooo careful when it's fish as it's normally so cleverly disguised as something else

🙃

I’ve read a lot of these posts and while I’m not being dismissive, but have you questioned that it might not always be gluten. Mainly because, with regard to Nomo, I also thought I’d been glutened, only to find in a list of their ingredients a product called Inulin! Do you have any problems with FODMAP foods? Inulin is a big problem for me, and when I had a bar of their chocolate, I spent more time in the bathroom, than in any other part of the house -if you get my drift. I do eat Genius bread though, but the white sliced loaf, and seem to be okay. Sometimes, it takes some working out, what has actually made us ill.

I will avoid any products by Genius for the same reason. Also most g/f bread sold in supermarkets. I'm lucky enough to be able to eat occasional sourdough bread - genuine sourdough not supermarket versions. Its no joke when you get caught out in it!

Benjamin123 profile image
Benjamin123 in reply to JayP2015

I've read before on here that people with coeliac were chancing sourdough. General consensus was one of alarm, but have read that sourdough process breaks down gluten, but doesn't eliminate. Are you having wheat sourdough or GF sourdough?

I once contacted Genius asking questions about their bread and they assured me that they had a dedicated factory for their gluten free bread.

The recent sausage rolls I purchased had a Spanish address on the box. I'm not sure if they have now outsourced their production, or if they are just exporting. Either way, I'm avoiding. They are probably ok but for me they made me ill.

Spain? I think the bread is made in Scotland - or at least it was. Some people can’t tolerate gluten free alternatives, including flours. Maybe you fall into that category?

Ye, there was some Spain reference on package. I'll check next time I'm in shop. I don't think I tolerate anything that claims to be gluten free, to be fair. I'm starting to feel it's all one big scam and the myth of safe gluten free food is one I'm avoiding now.

I've actually tried both and am ok with either of them. It is just occasional though. I can handle say 2 slices of toast (something that just doesn't work with g/f bread) or a cheese salad sandwich, not both, so I stick with the occasional treat. I buy a fresh loaf in a local artisan bakery, have my sandwich then slice up the rest and freeze for toast as and when craved!

With the sourdough bread, one day I had a sandwich then toast in the evening, after the first slice of toast I had a slightly rumbly tummy so stopped and now I know my limit.

Benjamin123 profile image
Benjamin123 in reply to JayP2015

Do you have diagnosed coeliac or do you have gluten intolerance?

I’m very sorry this is happened to you but there’s a lot of other things in our food that we react to. I did a research paper last year on the topic. One thing I uncovered is that there is a preservative added into many gluten-free foods that actually mimics gluten proteins in the way that the immune system responds, “Microbial transglutaminase (mTG) is a bacterial enzyme that is a common additive in processed food, such as baked goods, dairy, and meat. A recent literature review published in Med One highlights the troubling relationship between rising rates of mTG consumption and the increased incidence of celiac disease.” Another is glyphosate and still grains in general are bad as they break down the glycocalyx. I personally react to so many things I’ve just about given up trying to figure it out. I wish you all the best though!

I no longer have anything with additives, and still get reactions to anything claiming to be gluten free. There is too little checking of ingredients from suppliers, lax testing and a free and easy attitude to the codex being a safe option. I'm afraid I am not catered for or lobbied for anywhere by anyone so will resign to ploughing a lone gluten free furrow! Was reading about NHS in UK celebrating a drug for sickle cell which is amazing. 15,000 people in UK have sickle cell and it is great they have this support/recognition from the NHS. 670,000 people have coeliac and only a fraction diagnosed, and for those diagnosed or who have had to self-diagnose due to clueless doctors, there is no proper support or health lobbying. It is one of the most prevalent illnesses with serious side effects/longterm implications if not diagnosed/managed properly, and here we all are floundering around playing Russian roulette with crap food manufacturers, a chocolate fireguard of a representative charity, and an entirely disinterested health service.

Maybe this is why I'm not better after 3 1/2 years of gluten free? I have chronic fatigue so don't even have the option of cooking from scratch. I have to trust them. Who do we shout out to. I would love to but I just do not have enough energy. 😭😭. I was told I would feel better after 3 to 6 months. My heart goes out to you, if you get a petition up I will happily sign it. There are a few things I've been assured are gluten free but at times I've reacted.

Benjamin123 profile image
Benjamin123 in reply to Tabbyme

I think attempts have been made by members of here to get petitions going, but they've hit resistence from the people best placed to lobby. I feel for you if you can not cook from scratch. I'm just thinking we are all being scammed and none of us will get healthy if we keep buying into the codex scam and the notion that production facilities can be safe if they have gluten wafting around.

Tabbyme profile image
Tabbyme in reply to Benjamin123

I'm too trusting!! I don't know much about codex but I do understand the need for not having gluten wafting around! I had some psyllium husk once, I was assured it was gluten free, no chance of cross contamination as it was packed in a gluten free packaging facility but every time I used some my fatigue and feeling sooo ill got worse. I had to throw it away in the end as when I finally found a testing kit it would cost me over a hundred pounds, I struggled to afford the psyllium husk at £7.99 😯😯😂😂. I've sort of given up really.

Benjamin123 profile image
Benjamin123 in reply to Tabbyme

What a shame. Yes, been there with supplements that are labelled gluten free, and guaranteed so by the customer services, yet my symptoms told me otherwise. It's the constant gaslighting that wears down the most. I genuinely don't think food manufacturers/producers even know themselves if things are safe or not, and just bluff to get by. If no one pulling them up, why not?! Ye, it's hard not to give up. At least if we had some food testing options that we could access directly, it would be helpful, but there is a wilful denial of access to that for consumers as it would cause too many problems with us disproving manufacturer claims.

Tabbyme profile image
Tabbyme in reply to Benjamin123

That is so true!! If I ever do recover from this horrible chronic fatigue I will be trying to do just that. It's the type of thing I use to be good at. Writing letters and chasing up things. If in the meantime you do hear of any break throughs on this Please do let me know 😊

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