How many of you in the UK can eat everything clearly labeled as gluten free?

Hi everyone,

This is something that really interests me as I am made ill by so many foods classed as gluten free in the UK. This is because the interpretation of codex in the UK is that all foods under 20ppm are classed as gf which is just not robust enough for me.

When I was first diagnosed I decided to see what I could bake for myself as I'm into a whole food diet and codex wheat thats been washed in solvents to remove the bulk of the gluten doesn't tick the wholesome box for me. I went from borderline pernicious anaemia to a full recovery in a couple of months but when I started to try foods labelled gluten free they made me ill. The best thing that I ever did was abandon the UK gf food list and I haven't been a member of the UK charity for over 15 years.

In Australia they have none of the forbidden grains and undetectable gluten in all gluten free foods! So if they can do it why can't we in the UK?

Malted breakfast cereals are on GF food lists and say they contain malt malt vinegar is allowed!

My concern is the long term damage to coeliac as all coeliac societies say coeliac should avoid gluten for life rather than a little bit as long as its under 20ppm is safe!

I believe in democracy and if the majority of UK coeliac are happy being allowed to eat food that is not advised for coeliac in other countries that is their prerogative. But I see myself as one of the many disenfranchised UK coeliac that the UK charity has totally lost touch with and now they are struggling with funding its not in their best interests to not support all UK coeliac.

I also believe that allowed levels of gluten are detrimental to a gluten free community as its divisive amongst the coeliac as it creates a them and us and I know which side of the fence I'm on.

If it has gluten in it it isn't gluten free regardless as an official UK gf diet makes me ill and I've earned a badge as a blood donor since diagnosis and that speaks for itself...

Here's a link to the Australian coeliac societies advice where they have 3 ppm and none of the toxic grains so it can be done, please see:

coeliac.org.au/gluten-free/

Enjoy your day folk and remember we literally are what we eat.

[Hidden]

Good morning Jerry

As I mentioned before pixie has coeliac and as it's in most cat food until recent years which they now do grain free products, I noticed a name called natural a couple years ago until then I had to buy him meat and very expensive cat biscuits from the vets or pet warehouse, which was difficult for me to get to.I have recently discovered a tin of cat meat from Asda and one brand called butchers and one in Sainsbury's which doesn't have cereal or grains but isn't stated on the main label as ceolic and yet there is a market for grain free pet meat I have told a few of my dog walking friends in the park who have this problem with there pets which we discussed from all the bread people give to the geese and ducks whom are also allergic luckily a notice was put up by the park ranger yet people still feed them, so it'I had put a notice up myself as pixie was frequently I'll with him been greedy 🙀 I think the UK is behind on a lot of things regarding food and apart from America they eat so much more healthy in other countries, IBS problems are so common in in these uneducated or ignorant countries like America and UK luckily the meditaranian diet is becoming more popular and talked about and chefs like Jamie over educating people, oh well that's my rant for the day 😁enjoy your lunch 🥑🍎🥦

[Hidden in reply to Hidden]

Hi Hidden some friends of mine adopted a Jack Russel that was coeliac and he would run up the window cleaners ladder!

I'm not aware of gluten free cat food but know that you can get gf dog food so let's hope things change for the better Pixie is doing OK by the look of things. 😸

[Cooper27 in reply to Hidden]

Lots of pet brands have now introduced grain free options We swapped our rabbits to grain free pellets to minimise cross-contamination risk in our house

[Cooper27]

My partner is the coeliac of the two of us, he can tolerate most GF food, but not if it contains Codex wheat starch. He also suffers with most gluten removed beers, so not all GF food works for him, that's the sort of thing we struggle with.

The range of tolerance is always really fascinating though - I started a gluten challenge to be tested for coeliac disease earlier this year (delayed until after Covid now), so it's not great evidence for your question, but if I'm positive, then I don't get symptoms until I basically eat a breadcrumb worth. I spoke to some people at a nearby coeliac group about embarking on a gluten challenge, and they ranged from a silent coeliac, to people who share toasters/fryers, and those for whom the guidelines don't quite go far enough (aka my OH). I wonder what influences such a wide range.

[Hidden in reply to Cooper27]

Hi Cooper27 I read that small amounts of gluten affect the upper part of the gut tract which is a lot less sensitive with some people, there's also a tolerance to low levels of gluten so again if these allowed levels were avoided would they be tolerated after a couple of months of being totally gluten free? This is what interests me.

What I fail to comprehend is why one continent can have none of the forbidden grains and undetectable gluten of less than 3ppm and we have known amounts that make coeliac ill. So who benefits from this?

I think that your partner should be able to eat everything clearly labelled as gluten free safely or something has gone badly wrong.

Here's something to think about in Australia and NZ they also label wheat derivatives like dextrose and other additives but no one cares over here. So again whats gone wrong as food labelling should protect us the consumer.

[Cooper27 in reply to Hidden]

Yes, we were starting to keep wonder about dextrose, as sometimes he gets a very mild glutening without knowing where from. I know waitrose differentiates wheat dextrose on some of their products, so maybe an easier way for us to know for sure, is to give him something with known wheat dextrose to watch his reaction.

I think there was some discussion on it a little while back here, that we might have more luck pushing for a tier system. Unfortunately there just doesn't seem to be enough desire to change the rules in their entirety, but if we could have a Gluten Free (for 3PPM) and a Very Low Gluten (for 20PPM) system, something like that, it might be more acceptable for food manufacturers and therefore CUK.

[Hidden in reply to Cooper27]

Manitol is the one that gets me as that's a wheat derivative and a laxative and used in a lot of supermarket own brand vitamin capsules labelled gf.

I think the root of the problem is codex wheat starch because if we can get that on prescription there is no incentive to have wheat derivatives labeled as an allergen when they will be much lower in gluten. And some coeliac think that codex wheat products are the best...

[Cooper27 in reply to Hidden]

I know unfortunately I think it's also very common in Spain.

We'll look out for mannitol too. It's the only time when it's unfortunate the symptoms come on so much later, because you can't quite pin down the ingredients of what you ate 5 hours earlier.

[Hidden]

Hi Jerry

A post so well worded that comes from the heart. Personally I think the UK is very lax in the food industry.

As someone that has IBS I cannot tolerate barley and I told the Dietician. She said that there are a few people that can tolerate small amounts, personally that's not good enough and barley should be removed from the OK list. I had cornflakes and they scanned ok using my UK app so I bought them. They made me very poorly.

We are not stringent enough in this country. I also have the Monash app which is Australian, it's so much better.

I can though eat the GF oats.

Have a lovely evening.

Alicia 😊🌈🙏

[Hidden in reply to Hidden]

Hi Alicia, we deserve to know what we are really eating it’s so simple.

My hope is that the best and healthiest standards will be wanted by more and more people as COVID has made many people realise the importance of a healthy diet and lifestyle.

You have a great evening now. 🌈😊

[Hidden in reply to Hidden]

Hi Jerry, I totally agree with you.

Yes I think COVID has changed quite a few people's way of thinking which is good. I saw a programme on TV about what's put in ready prepared sandwiches and also some if the big chains, so glad I prepare everything myself after watching that.

Hope you've had a good evening.

Alicia 😊🌈

[Whydothis]

Hi Jerry,

Reading advice on here over the last few months, plus reading the Australian advice convinced me that I needed to be more cautious about what I was eating, so I gave up GF oats and all commercial GF stuff in June, and feel much better. Before that I was eating GF oats for breakfast every day, and a small amount of bought GF bread and wraps. It has made a big difference to how I feel now I have dumped them, even though I thought the original GF diet had sorted me out.

[Hidden in reply to Whydothis]

This is excellent Whydothis as you thought you felt better but didn’t realise that you could feel even better as regardless how safe anyone says allowed levels of gluten are gluten is a toxin too all coeliac regardless of symptoms.

You will benefit from your new improved gluten free diet. 👍😊

[Hidden in reply to Hidden]

Hi Jerry, there is a UK journalist called Alex Gazzo who writes on coeliac and allergens. He is active on Twitter, and perhaps a good person to take the cause up with in terms of getting some wider public debate: twitter.com/HealthJourno

[Hidden]

Hi Jerry. I'm in your camp of no GF foods working out for me. I've expressed my annoyance on here quite a bit on the 'standards' and the voices that get ignored in the manufacturer 'gold rush' to cash in on coeliac, not cater for it. They are, technically, doing nothing that is not within the legal remit, but the legal remit is pants. We need better standards, and we need a charity/lobbying group that works for us.

[Hidden in reply to Hidden]

Hello Hidden this is so right we need the support of a UK coeliac organisation when at the moment the manufacturers are the ones who are pandered too by the U.K. coeliac organisation so they are not supporting coeliac with due diligence.

We may be behind the curve in the U.K. compared to other countries but that will change if enough coeliac want better standards and say enough is enough.

You take care now and keep banging the zero gluten drum...🥁😊

[Hidden in reply to Hidden]

I would bang the drums if it weren't for my wonky thumb joints wot I got from all the sneaky gluten getting into my diet......

[daveh121]

I agree about the labeling.

One of our friends has terrible issues with gluten. Just a speck of flour on a cutting board will give her a reaction.

I heard of people with egg allergies that also have a tough time. Like gluten it seems to be everywhere.

They wind up having to cook all their own food. I imagine this can become annoying.

[Hidden in reply to daveh121]

Thank you Dave food labelling should work for the consumer not the food manufacturer.

I hope that you’re OK and not in danger of wild fires. 👍

[daveh121 in reply to Hidden]

Things are good but still under the fire watch.

[Hidden in reply to daveh121]

Stay safe Dave.

[liver-bird]

I seem to be ok with products labelled gf. I am sorry to hear of your difficulties Jerry, it seems some people are more sensitive to gluten than others but the food industry caters for the masses. In your position I would make my own stuff too

[Hidden in reply to liver-bird]

Thank you liver-bird I think it’s how the U.K. charity chooses to interpret codex which affects manufacturers. And we have the least stringent standards in the U.K.

It seems pointless calling myself a coeliac in the U.K as no one can cater for me if there’s too much gluten in gluten free food.

But it’s also their loss as they don’t have any influence over me or coeliac like me as they don’t receive funding for their charity from me or coeliac like me.

Gluten is toxic to coeliac so I don’t understand how 19ppm is totally safe when 20ppm is toxic and carcinogenic.

Im glad that your gf diet works for you. 😊

[Hidden in reply to liver-bird]

I used to be ok with GF stuff, and then it all started to fall over the edge about two years ago. It was a very confusing time and lots of gaslighting from CUK. I had to join GF Guerillas and begin an educational journey of re-learning my understanding of what gluten free actually means, down to the additives in foods that may contain gluten. If I look back, even when I thought GF was ok, it probably wasn't. I don't believe there is super-sensitivity - I believe that maintaining any ppm will push damage levels further and decrease tolerance to any ppms. Just my opinion/thoughts.

[Hidden]

Hear,hear!