Gluten where you wouldn't expect it. - Gluten Free Guerr...

Gluten Free Guerrillas

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Gluten where you wouldn't expect it.

philaustin profile image
19 Replies

I got caught out this week by a can of Cola. I never bothered to check a can of Coke, Pepsi or Sainsbury's Cola before. This week, being desperately thirsty, I poured myself a glass of Sainsbury's Classic Diet Cola from a can and downed half of it before loking at the can. "Allergy Advice - Contains Barley Gluten". Oh dear me, I thought, I've just gone and glutened myself. Woops. (or words to that effect)

I waited for some symptoms but none have appeared....yet.

Tonight the present Mrs Austin and I did the weekly shop at Sainsbury's. We both like stir frys and have made many before using gluten free soy sauce from the chinese store in Bedford.

"All fruit and vegetables, meat and fish are okay for coeliacs", right?

WRONG. My wife noticed tonight that all of Sainsbury's stir fry vegetable packs have a label stating that they may contain gluten due to the production methods used.

Whaaaaat!!. Do Sainsbury's mean they can't chop some carrots and mushrooms and mix them with a few bean sprouts and mange tout without getting gluten all over them?

"Hey Charlie, what happened to that bucket of flour".

"Dunno Guv, I think I might have accidentally dropped it in with the stir fry vegetables"

In future, as companies are forced to take on cheaper labour,don't be surprised to see labels stating-

" May be contaminated by monkey poo because our vegetable choppers cannot be trained to wash their hands"

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philaustin profile image
philaustin
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19 Replies

Gluten where you would not expect it? in this day and age gluten is a bulking agent and will turn up anywhere, foods, beverages and pharmacuticals although any reaction that you may have will be down to your sensitivity.

I stopped smoking and tried the nicorette microtabs, after just three of the tablets I blew up like a zepplin and was advised by the manufacturer not to use them, the lozenges or gums.

India1 profile image
India1

M&S cola also contains gluten - I ordered some in their cafe and noticed just in time. I was so outraged that I complained and they gave me a refund. I complained online too, since M&S tend be be pretty good for GF food and I had quite a nice response from them. I like to think they'll talk notice of GF customers if we keep telling them we're here.

India1 profile image
India1

Tony - your message is a little worrying as I thought that all UK pharmaceuticals were GF. Yikes.

philaustin profile image
philaustin

A law is needed to prevent food, drink or pharmaceutical manufacturers from adding gluten to their products unless they have a damn good reason for doing so.

Hi India, there are laws made to protect the manufacturer and none to protect me as far as i am concerned, "GF" food currently contains 200ppm of gluten changing to 20ppm was declared safe for years, so why change? There are many food ingredients that contain gluten that are exempted as the manufacturer says they are safe. Pharmacuticals are so refined the gluten is negligible, Alcoholic beverages made from grain also contain negligible gluten, I know these contain gluten as I react to them as I have found out over the last 4 years and advice given is avoid gluten and cook basic food from scratch.

Welcome to the world of profit.

philaustin profile image
philaustin

Thank brings me full circle Tony.

Trying to avoid gluten by cooking a simple stir fry from scratch using good honest simple basic packs of stir fry vegitables, but finding that they "may contain gluten due to the manufacturing methods".

If a supermarket can't guarantee that a packet of bean sprouts doesn't contain gluten what chance do we stand?

Even soy sauce ( which would normally be made using wheat) can be made gluten free, so why can't a simple packet of vegitables, that really should have been nowhere near any gluten?

What would the gluten free alternative to bean sprouts be, I wonder?

FionaGFG profile image
FionaGFGAdministrator

People - vote with your feet and email these manufactuers and supermarkets. Money talks! Profits are tight - they're all keen on keeping customers for life. Point this out to them. You will be surprised to see that many retailers take note of comments and do change their ways. M&S for example has been slowly taking the flour out of their ready meals and replacing it with Cornlour - it's not just to be nice - they want more Coeliac shoppers! So praise the 'good guys' and write to the ones that need to do more. Perhaps part of the problem is that we consume and buy so much of our foods from supermarkets. In the past local grocers, fishmongers etc would have sold us great produce and told us where it was sourced from and there'd be less packaging and food waste.

Have a peek at these great shows bbc.co.uk/programmes/b00zf9vd

Whilst not labelled 'Gluten Free' they are showing and highlighting the foolishness of mass consumerism, losing touch with local producers and how we can expand our diets by buying great British diet minus the Carbon from freight and airmiles of imports. Worth a peek...

I agree that beansprouts should just be beansprouts - yet mass production and packaging means that many naturally GF items are fed along conveybelts and factories that use gluten. So complain, then shop elsewhere if the supermarkets don't take note.

Mark3 profile image
Mark3

It annoys me that I cant pick up a standard box of rice bubbles, cornflakes, corn crisp bread, corn flat bread etc. without going to the GF section of a supermarket because of a manufacturing process and when we going to know the ins and outs of Oats, are they in or out?

We are at the mercy of the decision maker,the law, the manufacturer and until the term "Coeliac" covers all sensitivity levels we have little hope on this planet.

For Fiona, we could expand our diets through correct labelling ie if it is made from a gluten source it should be labelled as such, no if's or but's. If the process or manufacturing is in an area that uses gluten again it should be labelled or not allowed.

For Mark, I would personnally not touch oats, again it is who or what you believe.

FionaGFG profile image
FionaGFGAdministrator

@Mark

Oats: contain Avenin which is a very similar protein to Gluten (Gliadin). So...best to always get blood tests before and after eating ./ consult Dr/ Dietitian. I personally have decided that's too much faffing around for me as I have to wait 6mths - year btwn hospital check ups so I eat no oats. In the past oats were also confusing due to cross contamion. Alchemy now do 'GF' non contaminated oats in Waitrose. Yet they still contain Avenin so should only be introduced into a Coeliac diet with cauction and with medical advice.

Mark - have you tried Whole Earth Cereal? I use those (in the mainstream gluten ridden cereal aisle) eg Sainsbury's Waitrose do them and they really are just Corn. I always make a point of trawling the mainstream aisle - often their is naturally GF stuff that is hidden or GF soy sauce that is cheaper than in the Free From aisle. Just it is irritating and slow. Yet I now view food shopping as an additional hobby....!

@Tony

Yes real GF labelling would help. However, retailers are cauctious types. As some Coeliacs are zealous moaners (human nature I guess) they scare retailers so it pays to be positive and polite and keep emailing their customer service team to raise the issue. If they see demand and £ signs they often improve their ranges.

If we're unhappy with ambigous labelling then we need to get emailing producers otherwise nothing will change. Yes a change in the law would help yet many retail improvements are done voluntary with less red tape and more money saved...

Here's to better labelling and more 'polite' pester power!!

philaustin profile image
philaustin

Oats? This has got me worried. A month ago I started eating porridge again after realising that a packet of the 'gluten free' stuff costing 3 pounds wasn't bad after all cos I could get 8 healthy breakfasts out of it.

Still seems like a rip-off though when you compare the price with 'ordinary' porridge oats.

Now on my third packet and I don't think it has affected me, but how can I be sure? Do I really need visit the gp to ask for tests before and after eating oats. I'm sure he will just tell me not to eat it 'just in case'.

philaustin profile image
philaustin

Got this reply from Sainsbury's:

"

Thanks for your email. I'm sorry for the unexpected presence of gluten in the products you bought. I understand your concern as you're a coeliac.

The cola contains barley gluten but it's at such a low level that it's suitable for coeliacs so you don't need to worry about drinking that. The factory where the vegetables and sprouts are packaged also handle products that contain gluten so there's a risk of cross contamination and we have to warn customers about this.

We do have a guide on our website to which of our products are suitable for coeliacs. You can find it here www2.sainsburys.co.uk/food/....

I'm grateful for you taking the time to contact us.

Kind regards

Neil Ditchfield

Customer Manager"

I guess I'll have to shop somewhere else then if we want to cook a strir fry. Anyone checked Tesco, Morrisons, Asda or M&S stir fry veggies for cross-contamination warnings?

FionaGFG profile image
FionaGFGAdministrator

Phil

I'd suggest you do see your GP and package it up as you need your Coeliac blood checks + blood pressure done eg chlorestral, B12, Vitamin D, Iron, Ferritin, TSH, and the ttg (anti-body check to make sure no gluten anti-bodies are lurking). That way I am sure it'll be an easier sell wrapped in a general blood test vs trying to explain that oats consumption should be monitored. There are also tips on the Coeliac UK website if you are a member. Or route B is to ask to be referred back to your dietitian and raise it that way.

Shame about Sainsbury's. Unfortunately many items inc Barley are classed in many quarters as OK for Coeliacs at the moment. Yet I personally avoid these - anything directly coming from grain (bar Vodka etc! ) I err on the side of cauction with. It always seems fishy to me that the levels should be low enough for us. It implies they are still present just under the 200ppm etc (until 2012 when some may become 20ppm). Plus other countries like Oz don't recommend it so why do we? Along with saying maltodextrin, malt vinegar, etc is ok? It may well be ok for many Coeliacs yet I think - why take the risk - especially in the first 1-3 years of healing and trying to get your body back in shape. It's very easy to forget that CD is an auto-immune disease for some parties and that it's not just the gut that is affected and needs to heal. Often our bodies have been holding the fort for a while and other areas go ka-put/ need a rest/ are unbalanced - as I'm learning myself. So I maybe biased but I recommend taking things simple - yet ensuring you have tasty options in the first few years.

Well done in contacting Sainsbury's. No harm in writing back and saying that if they can't guarantee veggies are GF you're look at buying these elsewhere. It's always useful for them to get feedback. Of course the other option is to buy fresh and freeze yourself - yet who has time to do that each week?!

PS My sister was glutened by another supermarket that did the same with new potatoes with butter and herbs for the microwave + gluten. Pretty poor really.

My motto is - check and re-check all 'processed' / packaged food. It it's wrapped up in any way (drink or food) read and re-read the label. I keep a handy list of the names gluten my hide under on my phone. A bit OCD (!) but handy for when I've lost the plot reading labels...; )

philaustin profile image
philaustin

Thanks Fiona. Suggestions taken on board. I must say that the last time I saw a dietician she asked me if I was eating oats. I replied that I wasn't cos I thought the Free From ones were too expensive.

I went for blood tests some weeks ago, at my request, through the dietician to get checked check for the antibodies. Never heard anything from the docs so assume all was okay. I started eating oats since then.

I wrote back to Sainsbury suggesting that maybe everything in their supermarkets except canned food could have been contaminated by wheat flour and should have warning labels on it.

Flour bags leak, right? People put all their shopping in their trolleys then decide they don't want things and put them back. So anything I pick up that is not wrapped, boxed or canned could have been contaminated.

The only real solution would be to sell flour and unwrapped bread from a seperate building.

Would washing bean sprouts remove any gluten, I asked Sainsbury's.

My wife shopped at Tesco this week and found their stir fry packs had no gluten contamination warnings on them. So either they can't be bothered to put the warnings on or Sainsbury's can't be bothered to clean their lines down between products or fit curtains to keep the wheat flour dust clouds contained.

What really annoys me is the millions that Sainsbury makes by cutting costs, which means that cross contamination control is avoided to save money.

FionaGFG profile image
FionaGFGAdministrator

Phil It's a complex area.

My sister had the same problem with some vegetables then realised she could've given them a good wash (I think they were chopped carrots?). My knowledge is that water doesn't remove gluten. Only water and washing up detergent does.However, I guess some kind of common sense / risk assessment is needed - how likely is it the veggies were cross contaminated - would rinsing them get any surface gluten to run off? Hard to say. I personally avoid anything that says 'maybe contaminated' 'produced in the same factory as gluten - maybe cross contaminated etc'..half the time I suspect these are some new style labels - due to the new legislation & retailers ever increasing fear of being sued by every Tom Dick and Harry. Yet who'd have the time, money and energy to do so in this day and age ? ! Anyhow - I opt to avoid buying any that can't reassure they are gluten free. Or I only purchase things where the ingredients look fine, there is no allergen in the box label, it is low risk of contamination from processing eg Toblerone chocolare bars!

I suspect retailers have opted ahead of the law change to slap 'may contain gluten due to manufactuering methods' as a catch-all on many items as they can't ensure they're less than 200ppm unless they do more tests/ change processes...don't worry this is on our radar of things to quiz them on...!

PS As Colin & Justin DIY team say 'Don't Assume - it makes an ASS out of ME and U'. I assumed that my Dr would let me know if I had any problems and it was only a chance visit as I felt like a 90yr old that showed I'd had a test 12 mths earlier which showed by Vitamin D levels were 17 when they should be 75! Remember the onus is on US not the Drs to follow up / call people about blood results. Unless we've got Cancer etc they're unlikely to buzz us or have the time to. And when you ring up and they say 'oh yeah it's fine' - consider booking into see your Dr as I've also found many many times that that statement is incorrect and that another test was poor / low yet I was told all was well. I guess no-one's perfect. Yet 5 mins follow up also allows you to build up rapport with your GP and help increase/ raise awareness of CD by delicately asking them about things. I've also been reading that high blood pressure/ liver problems etc are a result of the immune system being damaged due to gluten etc. So I'll post more on that in future. In women it may result in the same or hormonal problems.

Good luck.

PS have you tried Ocado? GF food is listed and they price match Tesco!

I must do a blog on the easiest to use supermarket for Coelias soon..

Mark3 profile image
Mark3

I'm Australian so every brandname you guys mention is unfamiliar to me, but yes supermarket shopping has become a hobby, ( as long as I remember to take reading glasses.)

Stuck between the rock and hard place here as we have a wheat driven export economy. Unlike say the USA the home of Maize/Corn, I still can only wonder what cornbread looks and tastes like, I can't seem to make the stuff. Would you believe in Australia they can sell a product called Cornflour that is made purely from Wheat starch.

I remain Celiac undiagnosed as endoscopes are not an option whilst I have Lymphoma ( probably as a result of UK atomic bomb testing in my back yard in the 60s - Joke ...sort of ), due to the risk of ulcerations. Plus they probably wouldn't find anything as I've been GF for too long. I carry the gene however. Our Celiac Society here wont admit me as a member till I take the Gluten Challenge and be diagnosed, thats not an option as I'm amaemic and nutrient deprived as it is without putting my CD and Lymphomic and Chemotherapy bashed body through that stress. So I'm denied their teaching aids, lucky I have google and the internet in general. Labelling here is adequate, I dont believe them totally I'm just glad not to be hypersensitive.

My simple irony is, though I am the sickest I have ever been in my life my body has never felt less stressed ever, since being 99.99% GF these past 5 months.

Mark3 profile image
Mark3

P.S. I have been drinking a few 1.5 ltr bottles of Lipton Ice Tea, I read the ingredients and couldn't believe I was reading the words contains wheat!

philaustin profile image
philaustin

Exactly the point I wa trying to make inthe first place Mark. Who would have thought to read the ingredients on an iced tea container. I wouldn't. I bet there could be other iced teas that don't contain gluten, like our Sainsbury's diet cola contains barley gluten but diet coca cola doesn't.

Sainsbury's told me that the gluten content in their cola is so low that it is okay for coeliacs. Have you asked Liptons if their iced tea is okay?

Apologies for the behaviour of the nuke testing crazy English aristocracy by the way. They were twitchy about the Russian 'commies' taking a pop at us and trying to make everybody equal.

Some years ago on holiday with husband to australia, flight delay so purchased Iced tea ( pre diagnosed) Was very poorly knew it was due to tea. On return contacted firm but couldnt work out what had effected me. The were ok about it. Now it is clear why. Left it alone since. will look at bottles as matter of interest.

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