How far upstream should due diligence checks for gluten have to go?!

Soooo,

yet again, made ill with very definite coeliac symptoms by a product labelled 'gluten free'. Tahini. It's raw, it's light (hull removed), it's organic and it has a lovely label stating 'gluten free'. It only contains two ingredients - sesame seed and sesame oil. Visit company website - they only produce nut and seed products (tahinis, nut butters, etc.), have no gluten on-site, and name the company in Ethiopia that supplies the sesame seeds for the tahini. I contact the sesame seed supplier in Ethiopia and they give a fairly evasive answer - they don't do anything else at the plant apart from wash/hull sesame seeds, but can't answer question on whether or not farmers use wheat/barley combine harvesters/equipment to harvest the sesame seed. So due diligence hits the same big wall.

I do wonder how far up the line the actual manufacturers go in tracing the ingredients they use. If ingredients like soy and lentils are high risk for cross-contamination from farming/harvesting methods, surely a lot of ingredients that are grain/seed based are as high risk.

I do frequently vent on here, but our naffing food producers who rush to stick 'gluten free' labels on their products are absolute idiots if they can not trace the entire supply chain to field/farmer. This is particularly relevant for the idiots who label gluten-free but do not test.

I know this is gluten-contamination, as I have used another brand of light tahini that causes me no issue whatsover.

Waiting to hear back from the actual company that produces the tahini, but I am anticipating the usual schtick of 1) we don't test; 2) but our sesame seed supplier assures us it's safe; 3) no we don't know anything about the farming/harvesting chain; 4) Oh, well maybe you should not use our product if you are 'highly sensitive' to gluten. They are probably also entirely clueless about the actual sesame seed oil they add into the product - big whoop if the whole sesame seeds are processed in isolation, but can they claim the same for the bulk bought sesame oil that's added to them?

I despise these people. I absolutely and truly despise them all.

[Hidden]

Mise, I'm new on this forum but have joined as I am similarly frustrated with our food standards.

I'm 15 years diagnosed coeliac, and have plodded what I consider to be quite a lone furrow on gluten free life. I found from the outset that what Coeliac UK was stating and what the reality was, were two very different things. I disregarded them totally.

I eat a very limited range of foods as I do not trust any food manufacturer to have done proper due diligence on the sourcing of ingredients. In my books - if it grows in a field and is harvested in a manner similar to wheat, then high risk that same equipment used to harvest non-gluten seeds/grains as gluten grains.

As to the tahini - sesame seeds tend to be grown in developing countries where wheat is also a cash crop. If you are a small farmer, you are unlikely to have the big machinery to harvest, so will hire in. If you are someone who hires out farm machinery for profit, unlikely you will limit to gluten-free grains!

For food producers to stop due diligence at supplier point and not go further upstream to the actual farm/farmer/grower is to miss a big part of the issue. I'm currently chasing down a company that produces tofu for this exact reason. Tofu is something I avoid but did take a gamble and the gamble did not pay off. The food producer is doing fancy footwork to avoid being pinned down on the truth. I've previously been told they do not produce the tofu in a factory where gluten is present and that the DON'T test the end product for gluten. This time - I chanced the same question again - they state they DO test the product for gluten, but made no mention of factory being free of gluten. Absolute liars.

The track/trace of supply chain for foods is complicated massively if sourced outside UK, and a supplier based in one country abroad that is sourcing from other countries abroad. Many of the seeds/grains will be produced in countries that don't have EU/US regulatory practices for gluten.

As far as I see it - we have absolutely no regulations for gluten in the UK - it's a free for all that can be played with and negated as manufacturers see fit.

[Hidden in reply to Hidden]

Hi Abbey, thank you for your reply and sorry to hear you've been given the runaround. Similarily I've read that lentils are biggest culprit from a farming/grower perspective for gluten, and then soy as close second. I hadn't even thought about sesame seeds until the recent tahini incident. I agree that 'track/trace' should be a given for gluten free products. We are supposed to operate on blind trust, and too many manufacturers just couldn't care less. What are your plans for your tofu complaint?

[Frodo]

This is very helpful, thank you - I hadn't considered that my 'upset stomach' after eating GF could be due to cross contamination at source. I would certainly never have thought of tahini - even if not labelled GF I thought it was intrinsically GF.

[Hidden in reply to Frodo]

Hi Frodo. Everything is intrinsically gluten free apart from wheat, barley and rye. It's our bloomin food production that is the problem and the utter chaos and disinformation that dominates with regard cross-contamination. I haven't read anything so far with regard sesame and cross-contamination, but if (in my opinion) a food producer has no idea what is happening at the grower/sourcing end of the food production story, then they can not, in all honesty, claim their ingredients are safe unless they test every single batch of every single ingredient that comes into their production facility - this seldom happens with most GF foods. I had a conversation with the tahini manufacturer yesterday - he gave me a call. He doesn't have a clue what is happening at the grower end of the market, but assures me that when they have tested their product, it has been fine. If you check out information on lentils and soy you will find quite a bit out there is terms of the cross contamination risk at grower end of the scale. Lentils are apparently the worst offender as they are a 'rotation crop' for wheat - wheat takes nitrogen out of the soil, beans/legumes put nitrogen back into the soil, so farmers rotate. With lentils, it's not uncommon for both crops to grow side by side (wheat and lentils) in strip cultivation of fields - so the cultivation of the strips alternates each year from wheat to lentils. Similar for soy. The next bit of the story is what machinery is being used to harvest the non-wheat crops and has it being used for wheat harvesting. The guy I spoke with yesterday threw out random suggestion that he is sure that if the equipment was used for wheat harvesting there would be policy to 'wash it down' - that is a pretty s**t answer as 1) he has no idea if that is actually the case, so should find that out rather than hypothesise and 2) no wash down will make any combine harvester/harvesting equipment safe - gluten is tiny, and wheat grains are very small - they become lodged within machinery, and unless machinery is checked with magnifying glass and a tooth pick, unlikely it will ever be free of contamination risk. As to the finished end GF products - too many of us are being made ill, and whether the contamination is happening at source or during production, none of us should be exposed to ANY gluten EVER and if coeliacs are being made ill by GF products we need to shut down any manufacturer claim of GF safety and shut down the A-hole charitable body that gives them the backing. Following article is interesting: foodsmatter.com/coeliac-dis...

[MTCee]

I absolutely understand your anger and frustration. I was made ill for about a month after eating a packet of gluten free crisps. I felt as if I’d had major abdominal surgery, I was in such pain. It also caused all sorts of inflammation in my body. I got backache and joint aches for weeks after too and could hardly walk. I’ve come to the conclusion that I can’t trust any manufactured food that claims to be gluten free and that I should just stick to whole foods, avoid all grains and lentils and just make all my own food. It’s restrictive beyond belief but manufacturers simply don’t care.

[Hidden in reply to MTCee]

I hear you right back. Isn't it the shame of all this that the only people who acknowledge our pain and the damage to our health are fellow-coeliacs. The gluten free food market is a criminal scam - nothing more, nothing less. I have been lied to more times that I care to mention. Food producers are not even legally bound to test for gluten, and if they do (on basis of some half-arsed award like CUK's) they only have to test once or twice a year. They are producing 'GF' food everyday, and everyday is a risk for cross-contaminated ingredients and production lines. I finding myself wanting to scream somedays at the restrictive lives we are supposed to live, the continual ill health from gluten in GF foods and the utter utter idiots and money grabbers who are profitting in the ££££millions each year from our illness with no regard or concern for the damge they do to us or the upset they cause. When I say I despise this people, I am not lying. I would love to corner Hilary from CUK, shine a bright light in her face and ask her to answer to the fraudulent behaviour of CUK and what they do to people with coeliac. They have the market and the publicity cornered. Everywhere I look on social media and forums I see people calling them out as not to be trusted, yet no one is doing anything about them. They genuinely are nothing more than a criminal enterprise.

Regarding the crisps that you got glutened by - what brand were they and did you lodge complaint with the manufacturer?

[MTCee in reply to Hidden]

Seabrooks crisps. I mentioned it on this forum a little while ago. Someone else on here mentioned they’d had problems with them too and that they’d contacted the company only to be brushed off with....oh, just try the plain salted ones only then.....It’s all such utter rubbish. If all the different flavours are supposedly gluten free, what difference would that make? In short they haven’t a clue and don’t really care because the numbers of people that react badly to them are small. I once tried a gluten free White Rabbit pizza and had a bad reaction to that too. I contacted the company and they basically said the flour mix they used was supplied to them by another company and there wasn’t anything they could do about it......what can you say to that? Where do you start? Sorry for the rant. Contacting the companies involved seems pointless.

[Hidden in reply to MTCee]

I've been made ill by both those things also. Seabrooks told me they test to under 5ppm but their crisps do not agree with me. Haven't had any crisps in a long time as a result. Seabrooks used to work for me, but then not anymore. Whiterabbit pizza is lovely, but again made me ill, but I wasn't sure if it was the other grains they use that I react to (maize, etc.). Very very confusing sometimes, and so unfair, as you say that these companies do naff all due diligence on the supply chain. I might rattle Whiterabbits cage a bit as well and demand info on their supply chain and sourcing. Did they actually say that they gluten test at all on the ingredients or the finished product? That is not an answer to give to coeliacs and clearly they fall into the faddy lifestyle gluten free that's just about stupid people thinking avoiding gluten will make them skinny whilst they wolf down a fat and caloire laden vegan pizza.

[MTCee in reply to Hidden]

I think you’re completely correct about most manufacturers trying to appeal to the fad of gluten free being seen as healthier. It’s a win win for them, since they don’t have to test much for gluten and don’t have to bother with due diligence. They just stick a gluten free label on and lots of branding that appeals to their chosen audience....which isn’t coeliacs. I laugh when people say to me that there’s more choice than ever now in terms of gluten free food. No there really isn’t. There’s just lots more claims of being gluten free and very few actual good products. I’d even argue that the situation is worse because it’s hard to know what to trust anymore. I didn’t pursue the case with White Rabbit. They clearly didn’t want to engage on the subject.

[Hidden in reply to MTCee]

I agree the expansion of GF ranges/offering doesn't mean better standards, and if anything it has lowered the standards. My rule of thumb - visit the product website. If the business is run by a couple of hipster dudes with groomed beards and top knots who met at uni, and have lots of branding slogans that want to be your friend, disregard the product. Husband and wife teams are also to be avoided. If the business was set up by someone who actually has coeliac or has set their business up because their child has coeliac, it's a safer bet. I keep toying with the idea of the need to set up a whole new coeliac platform/online retail outfit for 'coeliac safe' to avoid the bollox of the hipster faddy gluten free schtick, and make a a medicalised food standard with zero measurable gluten in any of the products and proper coeliac advice on what is actually safe.

[MTCee in reply to Hidden]

Great way to distinguish between “real” gluten free companies and the pretenders 😂. I’ll bare that in mind from now on.

[Narwhal10]

Sorry to hear you are ill again ! 😩 It is outrageous with regard to food labelling and I would swear on your behalf. I hope that they give you a reasonable explanation (doubtful, I know). Take good care

[Hidden in reply to Narwhal10]

Thanks Narwhal10. The guy at the tahini firms states he has coeliac and has no issues with his products, yet he completely didn't have a clue what was happening upstream on the grower/supply chain and was just putting blind faith in his supplier who is based in Netherlands but sources from Ethiopia. I contacted the suppliers Ethiopia office and they refused to answer and shunted me back to the manufacturer. Make of that what you will.

[Narwhal10 in reply to Hidden]

Hmm sounds like the Ethiopian office is passing the buck.

[Cooper27]

This sounds very frustrating. I think it's why Morrisons have may contain warnings on their cabbages!

Only thing worth considering is whether you are liable to cross-reactions, which is where your body doesn't always distinguish between gluten proteins and the proteins in similar foods (this is why around 50% of coeliac are dairy intolerant). Sesame is considered a common cross-reaction food too:

celiac.com/articles.html/gl...

Your theory sounds very plausible though. I'd just look out in case you react the next time you have sesame (from another source)

[Hidden in reply to Cooper27]

Thanks Cooper27. Yes, I've explored the whole cross-reactive thing, but fine with some but not others, so not sure if a) if you cross-react to one on the list, you cross-react to all (?); b) if the cross-reaction generates the same level of damage that gluten does. Unfortunately no GP or gastro will ever be able to answer those questions as they are utterly without knowledge beyond telling people to not eat gluten but at the sametime to do eat GF labelled foods that do contain gluten!! I'm actually fine with some tahini brands, but not this one. I normally buy Cypressa which Tesco and Asda stock. I go for the 'light' tahini as it is roasted and hulled - apparently the hull is not good is you had dodgey GI tract. This was very definite coeliac reaction (I know the signs at this stage....) rather than a normal random food reaction (which I do get to certain foods). I think as MeTeeCee says, avoidance of all grains and lentils (and in my book I would extend this to seeds and shelled nuts) is the safest option. Until food producers play the game and find out where their actual ingredients come from, the risk is too high. On a more worrying level - if they don't know what's happening at grower end of the chain, how can they claim ingredients are even organic or safe and not sprayed with illegal pesticides or grown in polluted land/water. Blind faith in what suppliers are stating is not a safe way to source anything.

[Cooper27 in reply to Hidden]

I don't think you'd cross react to all foods on the list, just some of them. It depends on your own immune system really. I think you'd experience with all kinds of tahini if it were that though.

Very frustrating for you, I can't make any more suggestions, but I hope you don't suffer again!

[Hidden in reply to Cooper27]

Thanks Cooper. I think it's just stick to whole foods and the 2 or 3 'trusted safe' brands.

[Hidden]

Hello Hidden it does feel very unfair being made I’ll by food clearly labelled as gluten free.And the really sad thing is it’s for profit...so I feel for you and share your emotions.

[Hidden in reply to Hidden]

Thanks Jerry. Yes, we are just cash cows to the businesses and CUK. Your health is irrelevant but your cash is very important.