So, this is a good example of the absolute bollox we face day in and day out. It would make an excellent case study:
ALPRO OAT MILK
- The Oat Milk packaging makes no mention of gluten/'may contain gluten', but does highlight the oats in bold font in the ingredients list. Us sensible coeliacs know this is a no-go if the oats are not safely marked as gluten free, but there is no mention of the 'may contain' on the packaging, despite their website stating "Except for the Oat drink, Alpro products are wheat free and gluten free. This is also explicitly mentioned on all packs". The packs do not state this - they are outright lying on that.
- If you visit the Alpro website they state the following on the allergens FAQ page "Are Alpro products gluten free? Except for the Oat drink, Alpro products are wheat free and gluten free. This is also explicitly mentioned on all packs". So if they can find their way to put gluten free on the ones that are, why not put 'may contain' on the ones that aren't. What is the issue with doing this?!
- They then, on the FAQ allergen page state the following joyous piece "What is a gluten intolerance? Gluten intolerance or celiac disease is an allergic reaction of the immune system to gluten protein found in wheat, barley, rye, and sometimes oats." This is a multi-million pound company, owned by Danone, and they can't even write a proper statement on coeliac. Coeliac is not gluten intolerance, gluten intolerance is not coeliac. Coeliac is not an allergy, per se, either - it's an autoimmune condition.
- So website is as clear as mud, no 'may contains' or 'gluten free' labelling, logos or statements on packaging, and you have to physically visit their website and do some digging to find the gluten status of the Oat Milk, and then you Google 'Alpro Oat Milk gluten' and it leads to two different retail websites that state the Alpro Oat milks IS gluten free: veganrecipeclub.org.uk/cont... , britishcornershop.co.uk/alp... . I haven't checked any other retail sites beyond these two, but suspect this is the tip of an iceberg. The mainstream retailers, e.g. Tesco don't list gluten as a possible allergen, but just list 'oats' under allergens, even though (as per a call I made to Alpro) they clearly state the oat milk product does contain gluten.
So, there you have it. All as clear as mud, and beyond the ridiculous. I've looked at this specific product after my café latte glutening experience earlier this week. I've asked Alpro to get back to me on if they do actually test their soy and almond milks/yogurts for gluten or are they just guessing at the gluten free status.
Bloody nightmare food companies! Is there any other disease/health condition that has to navigate this level of day-in day-out bollox??!!!!
It seems to me like they don't understand what gluten is... Or why it's a concern at all. That is quite concerning, and I hope they change their FAQ on gluten at the very least.
I think the only thing I don't envy, more than a coeliac, is someone with a nut allergy. It seems the default to state "may contain nuts" on everything!
I just find it astonishing how conflated the wording and message is. You're right about nut allergy folk - a person with a nut allergy must just live in a constant state of fear and high alert. Our food producers really are just money-spinning sharks.
Now that is so right!!!!! Like most large firms, they do not care!!! If there was a problem they would pay lawyers to fix it and Joe soap wouldn't stand a chance!!!!
Gosh, they're huge, they must have very well educated food specialists........or maybe not. Go get 'em Benjamin.
Cooper27 Your comment about nuts made me realise - I used to go to my local bakery and get an almond croissant and a coffee, and the staff would roll their eyes at the till and say "I've got to tell you that This may contain nuts" If I had a plain croissant the till didn't offer a warning. There is no sense to any of it.
The phone call with their customer service was even more interesting. They clearly read from a script that doesn't allow for ackward questions or arsey customers. Danone have no shortage of scandals around them. It stops being about food and is all about profit and shareholders the further up the line you get. Health and welfare is a basic disclaimer in small print on a website - you're a unit of purchase/consumption, not a human being with the basic right to good health.
It's weird that they pick just that one allergen to mention though, what about the other major allergens: wheat, dairy or egg? Is that the line at which places expect people with allergies to ask questions, rather than assume?
It took a lot of digging to find the gluten info. There is no clear link to allergens on the home or products page, and basic search brings back little if nothing. Takes a bit of digging around. I did find this in reference to nut allergy/allergen:
"Are Alpro products suitable for people with a nut allergy? Can the nut-free products still contain traces of nuts by cross contact? In our production facilities we take every possible precaution to prevent cross contamination, however in cases where the smallest risk exists on the presence of traces of allergens this is indicated on the label as “may contain traces of….”. Only in the case of completely separated production lines will this sentence not be indicated. .......We do however advise to always check the ingredients list on the packaging for the most recent and detailed information."
So, this seems to be their line with nuts. So surely if gluten/wheat considered an allergen, and they are aware their oat milk contains this allergen, would they not detail a 'may contain traces of"? Or is it they only detail a 'may contain' if the cross contamination happens onsite and not somewhere previous on the grower/supplier chain?This is the thing about gluten/wheat that makes no sense in terms of labelling. I've seen this with other GF food producers who put a 'may contain' for nuts, soy, dairy, but not for wheat/gluten when they do have those onsite also. I just feel there is a major food industry mind-blindness to the significance of this, be it deliberate or otherwise. Without undermining those with life-threatening nut, etc, allergies, the average population % with a soy allergy is 0.3%, whereas coeliac is 1%, wheat allergy just around 1%, and then more with general wheat/gluten intolerance. It seems the only things that get labelled are those that risk anaphylaxis, wherea coeliac is death by a 1000 papercuts, so it's ok to let coeliacs suffer as you are only likely to be sued if someone dies immediately from eating your product.
It's also - without stretching out my rant - the fact that the actuall additives are not labelled as coming from gluten/barley/wheat/rye source, if that is where they come from. Reading something earlier this week (a link was posted on here) about xanthum gum possibly being grown on a wheat medium, so may contain trace gluten protein, but no law to specify this risk on labelling. Try asking customer care at the likes of Alpro what medium their additives are grown on, and see how far they can be pushed!!! I tried that question with Coca Cola - in terms of the source of their Caramel Colour - a generic 'everything's cool' response received, I pushed for specifics, and it was radio silence.
What gets me goat on all this is that this feeds down (no pun intended) to our primary care GPs and secondary care Gastro clinicians who buy the line that gluten-free means gluten-free, and that if you are following a so-called 'gluten-free' diet on basis of what manufacturers put on their product labels, then why are you still ill and there must be something else terribly wrong with you.
This sounds like a typical occasion where the technical team has been over-ruled by the marketing team. Sadly, this happens a lot and only serves to increase confusion. The technical team will supply accurate information, it is their job to do that. But, this may not be particularly marketing friendly. So on pack information tends to be manipulated to appease the marketeers. It's wrong, but it happens a lot, especially in large organisations. Marketing trumps accuracy every time. What the marketeers want on pack is what they think the customer wants to read, with scant consideration for people who may rely on accurate information. I speak as a former (frustrated) tech manager. Ultimately, it is self defeating because if you buy the wonder product and react badly, you don't by it again do you?
You're right - it is self-defeating. I think their market is so big, that one or two lost customers means nothing to them. Difficult to get anywhere with complaints, and near impossible when the parent company and production is based outside UK - who the heck do you report that to?? I bet the Techs in food companies would make excellent whistleblowers if they weren't probably scared of retaliation against them. Very good programme last night on BBC by Dr Chris Van Tulleken on ultra highy processed foods. All Alpro products would qualify as ultra highly-processed, yet the marketing message is one of health and vitality. If I was not allergic to dairy I would prefer dairy products as they are absent of most of the cack in the fake milks and yoghurts. Apparently quite a few of the additives used in fake dairy products are murder for gut bacteria, so actually, in the long run, cause more health problems.
The whole ethos is to increase sales. Although I have come across the complete opposite from a well known manufacturer of pasta, where they put 'may contain' on everything, despite the fact that most of it was unnecessary. They viewed it as a sort of insurance policy against complaints. I didn't know about the additives in dairy analogues being bad for the gut. I am fortunate to be OK with dairy. I watched Chris Van Tulleken too, it was chilling. I have to wonder why we ever needed 'special food' for children. Yet another marketing opportunity I guess.
The biggie apparently is Xanthum, Gellan and Guar Gum - not harmful in their own right, and may have some benefits elsewherem but apparently bad for good gut bacteria. Also they need to be grown normally on a growth medium which may be wheat based, so small inherent coeliac risk. Also emulsifiers - these can irritate and inflame GI tract which not good if you have damage already.
The fake milks are grim in the main. Only one I've ever found ok-ish was the unsweetened soy milks. They are all just water with calcium and additives thrown in. Such a con as there is no calcium in soy or nuts that is worth talking about, so it's the added calcium and vitamin D that makes them a dairy substitute. Better to just buy high quality supplements for calcium and vit D and save on the carton/packaging waste of the fake milks. The calcium they use is not great for absorption/uptake either. Depending on how long you have not had dairy in your diet, I find that you do get used to black tea. Interesting to go to countries in South East Asia where milk/dairy just isn't part of the diet and the only available milk tends to be the little imported UHT milk sachets. Cheese is a biggie, and fresh cream on desserts - no substitute ever can equal those.
Youre correct that it’s not classed as an ‘allergy’ in the well-known possible anaphylaxis ‘type 1’ ‘igE immediate reaction’ sense of the word, as it’s an autoimmune condition (mediated by other antibodies). BUT in medicine coeliac disease is also listed as a ‘non-igE mediated allergy’. So technically it can be called an allergy. Allergic disease is a complex scientific world encompassing many diseases. There are four types and Coeliac disease is classed as a type 4. 🤓
Wow, that's really good info. Coeliac UK are clear on their definition that it's not an allergy, but good to know where it falls in the medical definition. Every day is a school day in coeliac world. Thank you for that.
I didn't get the chance as they were intent on telling me about gluten sensitivity and wheat allergy. Anyhow I've now read the reply below so we would have been talking at cross-purposes!
I didn't know that - thanks. Always good to be able to speak to clinicians in their own language. So - which specialism does coeliac fall under? Allergy specialist or gastro?
The Sheffield gluten research centre has been mentioned on previous posts on HU. Nellie237 posted a good link on how gluten affects the brain.There’s still drs out there unaware and think gluten is primarily a gut issue. 🤭
This is where I question the role of Coeliac UK in failing to push the dissemination of knowledge/learning at primary care level. Equally, through my own questions with Arthritis UK, I've found that Arthritis UK and Ceoliac UK do not speak to each other in terms of joint-research or learning. Arthritis is known impact of coeliac/untreated coeliac is most developed nations, yet stupid UK doesn't recognise that, so if you look on American websites for coeliac, arthritis is listed as side-effect/symptom but not on naffing NHS/NICE info, therefor zero research happening in UK by either CUK or Arthritis UK on link between gluten comsumption and arthritis symptoms/pain management. There genuinely is no health condition or immune disorder that does not seem to benefit from the ommission of gluten from the diet.
Yes similar scenario with Arthritis linked to dairy/cows milk intolerance or allergy. Driven by complex immune reaction. Likely a ‘delayed non-igE type allergy’ . Especially autoimmune rheumatoid, but osteoarthritis too. There’s case studies of cows milk being the sole cause of debilitating arthritis in some patients.And there is the link of early introduction of cows milk and a particular ‘allergen’ linked to autoimmune diabetes type 1 (which is also higher in coeliacs).
It’s said it takes 10-20years for scientific research and knowledge to filter down to gps and clinical practice.
There’s so much info in the scientific literature that could benefit people. Don’t let unaware Drs dismiss symptoms!
It shows from the last 12 months of the pandemic that scientific research and knowledge doesn’t have to take 10-20 years to filter to the Drs on the front line!
This is a great link. Thank you for sharing this. Really ahead of the game in understanding wider issues. Why can't this filter into our blooming GP practices and gastro clinics?!
Scientists are only just understanding the cellular mechanisms of autoimmune diseases.
I heard Dr Alessio Fasano (coeliac specialist researcher) say in an interview online that gluten and coeliac disease the most researched autoimmune disease, with gluten the cause, is a framework to understand other autoimmune diseases.
Gluten is a big player but there’s likely others too. (Dr Gundrys Plant Paradox comes to mind.)
Research paper Quote, “Allergists and gastroenterologists need to pay attention to the multitudes of individuals who elect to follow a GFD” Gluten Free Diet.
You've really done your work! These are excellent links. We need somewhere to store all these links, in a dedicated thread. These are some of the best things I've read in a longtime. It's heartening to know the research is out there, but hellish when none of it gets absorbed into NHS. In lookin at one of your links (the Sheffield research) I stumbled on this amazing person who has nailed it on all levels - Dr Vickki Peterson. She is totally switched on. Various videos but one where she talks about the actual gluten blood test - it apparently only tests for one peptide from the gluten protein, whereas there a loads more that cause coeliac, so realistically on 50% of people with coeliac react to the one specific peptide that the blood test tests for, and the blood test only works wehn their is major end stage damage. She's on youtube.com/channel/UCICTBx...
We need this info to help us not feel like we are going mad with all the symptoms and negation from docs. Dr Vikki seems to sum it up so well, from why so many people with symptoms have negative blood tests, through to why simply adopting a 'gluten free' diet is not the answer, and is the reason so many are still ill and not fixing. She also states that immune response testing shows everyone who eats gluten has an inflammatory immune response, just not coeliacs/gluten intolerance, and that immune response over time kicks off all sorts of automimmunes. She also says doing the 'gluten challenge' is actually dangerous as the suddent influx/over-load of gluten if you have not had it in your diet for a long time will potentially trigger secondary autoimmune conditions. She's great.
Yes she explains it well. Thanks for linking Dr Vikki. 👍
Just done a gluten challenge (12 weeks grrr). So hope not!
But I finally figured some symptoms out after years gluten free diet (n=1, reiterates why going ‘gluten free’ not enough lol).
Coeliac test was negative. But borderline or sub clinical hypothyroid need to keep an eye on.
(Interestingly anti gliadin antibodies cross react with the thyroid).
After extensive reading of scientific literature about the immune system and allergies. I decided to pay for Allergy igE test and ‘intolerance’ IgG test with York tests to get a better picture personally.
Finally confirmed for me my reaction to gluten grains as allergy.
Interestingly had borderline IgG for gliadin, and more reactive to milk (which confirmed what I knew). Dr Vikki talks about the gluten sensitive test (rather than coeliac IgA and IgG) and IgG anti gliadin antibodies being high.
There’s a spectrum of gluten related disorders - coeliac disease autoimmune; non-coeliac gluten sensitivity; wheat (and gluten grains) allergy.
There is also a gluten antibody (Antitransglutaminase 6) that the neurological researchers at Sheffield have discovered in relation to gluten effects on the brain.
It's pretty fascinating stuff, and a world away from this NHS binary notion of 1) you have coeliac or; 2) you don't have coeliac, based on limited parameter blood test and multitude of symptoms that go with coeliac that NHS doesn't even recognise. Or the schtick of if you are following a gluten free diet (i.e. eating a load of old sh*t from Tesco that is full of 'allowed' gluten and damaging additives), why you still ill, much be all in your imagination or down to some hysterical disorder you must have. It's all about self-education unfortunately and not allowing our GPs and gastros to wear us down with their gaslighting and ignorance.
Re food manufacturers, why do they say 'allergens in bold' on the ingredients list, but if there's no gluten containing ingredient, they don't specify gluten-free?
And why is the vague, non-informative 'flavourings' still allowed?
I now find I react to most commercial GF products (eg crumpets, breaded/battered fish, cake), Why? What are they including?
Re cafes, in the days I still used them, they mostly had no idea what gluten was. One said the meal would be ok because there was no milk or cheese in it. So the chances of them knowing if there's gluten in a hot drink or syrup would be virtually nil. (Aware that there's a maple syrup on the market that contains mostly wheat syrup I asked a cafe to check the one they were offering - they were unable to do this very simple thing. Their breakfast smoothie which should have been ok had date syrup in it instead of actual dates - contained wheat)
That's interesting that you react to GF foods a lot. Is there any specific brand, or is it all brands? It's so frustrating to have to educate everyone who goes anywhere near our food, and watch them like hawks to see if they are f'ing things up or not. Too much stress in coeliac world.
Pretty random. Shar bread is fine but not Genius. Supermarket brands (eg an own brand breaded chicken) are not generally good. I don't know if it's gluten connected or some other ingredient as there are often a multitude.
Genius seem to be gluten-safe, but they are heavy duty on the additives. Schar do use codex wheat in some of their products, but do make a nicer bread - their freezer bread rolls that you re-heat are lovely. Seems to be many fall into this very confusing zone - is it contamination of gluten, is it intolerance to the codex level, is it additives from gluten source not labelled, or is it intolerance to the basic additives. It's a nightmare at times.
With Schar it tastes like 'real' toast which is my favourite comfort food. Pity the loaves are so tiny though, the cost is astronomic compared to wheat loaves. I had the most delicious GF toast in a cafe, tracked down the manufacturer and could have ordered, but with postage was £6 per small loaf! I know I could make my own but I tried and it looked ok but was like eating stale cake 😐
It is a treat to find a good loaf of GF bread. Shame the postage was so crazy. The GF flour is a funny old game to work with. I'm not a baker so the most I can manage is a reasonable pancake or flatbread. Hot buttered toast and a cup of tea is the cure for many things. Keep experimenting maybe and you might get there
Don’t you just love the way the doctors say, all you need to do is simply avoid all gluten in your food..........it’s almost as if they’ve never actually tried to do it themselves. I avoid 99% of all processed foods for this very reason, although I appreciate its much harder to do if you’re diary intolerant and you’re looking for milk substitutes. Would it be possible for you to experiment with making your own nut milks?
Oh, I've never thought of that. It's really the calcium that I'm after, and not sure if there is a lot in nut milk? Yes, being coeliac and still being able to have dairy would open the door of food options. I don't think it would change the level of problems in terms of commercial foods and dining out, but it would be great to have cheese. I dream about cheese
Hi Benjamin123,Thanks for your interesting post. The world of food labelling is a mindfield to navigate. You really have to be you’re own sleuth and advocate!
Personally I’ve tried alpro products and never ‘done well’ with them. Not a fan of the additives, gums etc. Like said not good for somes gut. I just found out after a long gluten challenge that my personal problem is allergy to dairy, wheat, and soya. Coeliac negative.
I think anyone with compromised gut should be advised by their medical practitioner to avoid processed packaged gluten dairy free products until can prove their gut has healed fully.
Big food companies will follow all the necessary legalities. It really comes down to the labelling laws! I thought wheat derivatives had to be labelled as such. I’ve seen labels in UK with glucose starred and derived from wheat before so just assumed this was law. Food standards agency might need lobbying.
In terms of human history and autoimmune disease still in baby steps stage.
It is the irony that products labelled and marketed as healthy dairy alternatives are less healthy than basic glass of milk. Dairy has come in for a lot of flak, but if you can source from small-welfare oriented suppliers, it is the lesser of two evils. I feel very nervous about the current push toward plant-based products and meat/dairy substitutes. Excellent to protect the planet and animals, but the plant-based vegan alternatives are horrendous for the number of additives. Food companies love a good old gimic, and plant-based has faced the usual industry interpetation of the concept which unfortunately will not benefit people or planet. Soy - it gets good press, it gets bad press. Great you don't have coeliac though - that's half the battle.
I agree. a lot of dairy alternatives marketed as healthy alternatives are far from. What nutrition is in there? A lot a processed product with clever marketing. Same with fake cheese. Where’s the nutrition? Real milk and cheese offers protein, fat and natural vitamins and minerals. The push should be for natural sustainable farming practices and high animal welfare (which Britain leads at).
There are some dairy free milk alternatives that are just nuts, water, sea salt. I like Plenish brand but expensive.
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The Food Labeling Modernization Act of 2021 (FLMA) is a game-changer for everyone living gluten free! 
Recommendations by a dietitian diagnosed with coeliac disease:
Gluten Free or Wheat Free.......... that is the question !
