I am confused......:(: I am not a... - Gluten Free Guerr...

Gluten Free Guerrillas

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I am confused......:(

BakersMan profile image
15 Replies

I am not a coeliac - but we sell a Gluten free product and i want to become educated in the best way to deal with the needs of a Coeliac.

My desire is to open a GF Deli and coffee shop where only GF products are used.

I read with interest the question from Benfowler re the questions you should ask a restaurant. Scary really as a food supplier with limited space in a kitchen environment - but understandable from a Coeliacs point of view.

But we have attended the local Coeliac support group, where one meeting they provided breakfast for the attendees - some Coeliacs with non coeliac partners. Breakfast was bacon or sausage sandwiches or filled oatcakes (Staffordshire kind)

As we on our stall have been ultra careful with cross contamination, i was surprised that GF and non GF bread was on offer, in the same kitchen, served from the same counter, served by the same ungloved person; I questioned them later and the chairman of the group - himself a coeliac, told me that there wasn't a problem,as the amount of gluten actually in a crumb was so small - he himself ate a few crumbs of non GF bread at a meeting to show that the risks were very small.

So you see my confusion.

Benfowlers questions made me think that the only way to provide GF food is to ONLY do GF food, but the support group were way more casual about the risks of cross contamination

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15 Replies

This suprised me and the problem is not all coeliac are that sensitive to gluten. CUK the charity for coeliac say that coeliac shuoud not ingest a single bread crumb.

I personally would not eat any food handled in this manner as I am classed as super sensitive and actions like this make things much harder for coeliac like myself. Also the bread the coeliac were eating was proably codex wheat starch which has the bulk of gluten washed from it but it still contains a few traces of gluten which coeliac like my self have to avoid.

The same goes for oats whether ''pure'' oats or not as oat gluten ''avenin'' affect me just like gluten. And coeliac like myself need to be reassured that oats are mentioned whether they are classed as gf or not. I read on another coeliac forum about a cafe that caters for coach trips and they serve gf food and they sell flap jacks labelled as gf but when questioned by a coeliac they said that they did not use pure (gf) oats and no coeliac had complained and some came back for more. Whereas to me this is food that I have to avoid. And this shows the different sensitivity to gluten that coeliac have.

So in my opinion if you want to cater for coeliac then use wheatfree gf products and keep them free from all cross contamination and inform coeliac of products containing oats. I know a cafe that caters for coeliac and they make gf cakes and keep some in the cake cabinet at the front counter of the cafe but when you ask for one they ask are you a coeliac? and then get one that was wrapped in cling film straight after being made to keep it free from contamination and the coeliac unwraps it at the table and this is spot on in my opinion.

I would like to commend you for going to the trouble of asking about this as this is very important to the vast majority of coeliac.

So thank you, and any others queries then please just ask,

Jerry

HI, thanks for trying to improve the world.

I have the same super-sensitivity as Jerry so wouldn't eat anything handled in the way you describe. Less than a visible crumb is enough to make me very miserable indeed.

One of the problems is the variety of responses to gluten and the time lag. Whilst some people react immediately, others may not show symptoms at all, despite trashing their gut, and others will show symptoms some hours later - too late to know not to go back for that second delicious but dangerous cake.

I can eat safely at my local indian restaurant despite the fact that they make nan and other items with wheat flour - but I always remind them to keep everything separate and not touch my plate if they have handled anything made with flour. Apart from a ghastly week after eating a pappadum I presumed was safe I have been fine there many times.

So, treat products with gluten the same way you would treat raw chicken. If baking have different utensils and tins, especially anything that can't go through the dishwasher.

Have wrapped single portions available for things that keep a while.

Use separate coloured plates and tongs etc for serving, with a sign behind the counter saying what they mean (the Tate doesn't do this in their cafes and it always worries me, they say they wouldn't use the same tongs, but how can the customer be sure).

oats - 10% of coeliacs can't eat even 'uncontaminated' oats, as they react to the oat protein avenin the way others do to the proteins in wheat, rye and barley.

Remember the hidden gluten in malt, sauces etc.

and, a final plea from me, don't pile xanthan gum in everything as it trashes my guts.

If you want any recipes that have been tested on many people, including foodies from the Slow Food society, just let me know. Happy to help.

Jacks profile image
Jacks in reply to

I absolutely agree with everything that Jerry and Lois have said especially the bit about treating it like raw chicken, I can't tolerate oats, CODEX wheat starch or Xanthan gum and am avoiding maltodextrin as I'm noticing DH emerging after consuming 'safe' foods that contain it,

The man at the meeting? What an irresponsible action when we're all struggling so much getting the message of cross-contamination across. If he leads that local group he needs reporting to Coeliac UK.

swarthy profile image
swarthy

I think to re-enforce what the others have said - levels of sensitivity can vary considerably.

I wasn't diagnosed until my early 30's - now I know, the sysmptoms had been starting me in the face for a long time - coupled with lifelong horrific eczema for which I'd been taking high dose steroids, and cleared once I changed my diet.

I am beginning to understand now, as explained by the people above why so many outlets are wary of claiming 'Gluten Free' - because there are a number of affected people who get much more severe reactions - an old school friend of my daughters risked anaphylaxis if she came into contact with even the minutest amount of cross contamination.

I do consider myself lucky in that if I get caught out (happening less and less) that normally the worst I will have is a VERY bad tummy for a couple of days - although I do suffer from Collagenous colitis which can be triggered with no warning and is pretty horrific and disabling.

Whilst it's a ncie idea - I am not convinced that a wholly GF business would work unless you worked by mail order and stocked food in supermarkets - a lot of coeliacs also have sensitvities to cheese and other dairy produce - cheese gives me migraines and more than a little dairy could trigger an eczema outbreak - but nothing that I can't now deal with now I know the causes and can isolate them much easier.

Who would you cater for? the Coeliac with Dairy Allergies or without? the ultra sensitive or the not so sensitive like me? There is no doubt that GF products containing eggs and milk taste better than those without, but then that won't help others with tougher allergies.

===============================

Would you not open a Deli with two kitchens and ensure the GF kitchen operates in a sealed environment so as to avoid cross contamination - many coeliacs have unaffected friends and family - and that is the best way to get the business - and believe me, where these facilities exist - word spreads fast and business can go through the roof.

Good luck

swarthy profile image
swarthy

Sorry - that should have read - early 40's

judyblue profile image
judyblue

I personally always wash my hands if I have been handlng non gf food like bread when I am cooking for the family, I won't take the chance. It's great that you are providing gf food and researching it properly.

BakersMan profile image
BakersMan

i was planning on just being GF - there are many delicious foods naturally GF which we all enjoy.

I really appreciate all your comments so please keep them coming :)

FionaGFG profile image
FionaGFGAdministrator

Hi BakersMan,

We're pleased your question received a lot of responses. Firstly you've come to the right place as we don't advocate eating gluten breadcrumbs here!

Our stance is this:

- coeliac is an auto-immune disease not just an allergy or intolerance

- the body of coeliac therefore reacts badly to 1 breadcrumb as it would to eating a whole slice of normal bread - as after all the immune system doesn't know it's only 1 breadcrumb - it goes on a Rambo all out attack come what may

- so coeliacs contaminated by gluten often display different symptoms

-we're very clear as is much of the growing gastro / endochrinology world now that any cross contamination of gluten nevertheless damages a coeliac the difference is as Lois says whether your symptoms are obvious or appear more silent

In terms of making a gf business we also believe this can take off esp as you say - because so many great tasting foods are naturally gf. Consider the 1% of people in the UK with Coeliac, then add in their friends (who eat out with them) circa 5% + the faddy / gym bunnies going gluten free for 'health' reasons and let's say there's at least 20% core customers you'd have.

If you'd like to message us on the site here directly feel free we'd be happy to point you in the direction of more help/ research.

kateatug profile image
kateatug

There really should be more cafe's and stuff available to sufferers of Coeliac, in my home city there is the bare minimal in high street supermarkets and even when i go out they ask me what coeliac is.

I hope your business succeeds and more people follow in your footsteps, I'm tired of cooking for myself, I want to be able to eat out.

hope you are all well and taking good care of yourselves ;)

ladyshelly profile image
ladyshelly

I am really pleased to see this whole conversation & would just like to say that I too am a super sensitive & wanted to add my voice to the ones here. I thankyou for being so considered in your thinking & I reckon the coeliac guy who ate the breadcrumbs needs a firm word on the dangers of misinformation. Also I am intorerant to dairy & am vegan/vege & anyone helping to cater for the coeliac is top in my book.Good luck.

TheGob profile image
TheGob

When I was first diagnosed as a coeliac I immediately began reading everything to do with it and two primary points struck me:

1. Every coeliac is different in regards to their responses to consuming different levels of gluten, and even the type of gluten it is (rye or barley or wheat, and even oats).

2. Most of the books explained why we should not continue to eat gluten, even if we can 'ignore' it or 'not suffer obvious discomfort'. By doing so we greatly increase the risks of gaining lymph cancers later in life.

Basically this (I will not say stupid) ignorant or misled gentleman eating normal breadcrumbs is 'smoking' with gluten. He is gambling with his own health and with others by telling them such.

There is gluten-FREE and there is not. Simples! As several meercats would squeek!

Jacks profile image
Jacks

I believe the difference between coeliacs is down to how long they were undiagnosed. The more damage done - the longer it takes for the villi to heal, if ever.

My consultant told me gluten free at 200 ppm was pre-2009 because the CD diet was extremely limited in the past. Studies showed the legislation needed changing - hence the <20 ppm.

Coeliac UK say that new coeliacs need to have a strict GF diet - naturally GF or less than 20 ppm - in order for the gut to heal.

Having CD seems to be a bit like playing Russian Roulette!

BakersMan profile image
BakersMan

Thanks again for the comments - it does seem a minefield this world of Gluten!

I hope to be able to ask more information of you the coeliac population if my dream gets closer to reality.

annepat profile image
annepat

Diagnosed 1year ago aged sixty told I was probably coeliac all my life . Everything makes sense now but having been so careful with my diet I am not feeling as good as when I first started gf diet . I am very lucky to have a gf bakery close by and get my bread etc from there. Hate supermarket nonsense so called bread.

It does seem confusing however it is because the actual amount of gluten in a few crumbs is microscopic, so to speak. Therefore, it does not cause a reaction in someone as badly however we are not all the same. The time for a reaction can be quicker for some and may depend on what he had eaten. I would cater for gluten free the same as a nut allergy or like the Jews do using two kitchens. I am only intolerant so avoid cross contamination wherever possible but a small amount does cause a reaction. It is also much worse if the same crumbs were eaten by a gluten free child. A friend has had a terrible week due to a small amount of gluten being ingested, the reactions are painful and too gross to type! I am also intolerant to dairy which is common in people who are intolerant to gluten.

I would be more concerned about the hygiene without gloves.

If you can it would be good to have a cafe which caters for all which is what is happening where I live so then I can eat with friends. Also, some friends would eat gluten free as less bloating even though they are not actually a coeliac or intolerant.

I hope this helps you have had some great replies and it is fantastic you are providing this service.

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