Gluten Free Guerrillas

Gluten Free or Wheat Free.......... that is the question !

I have been Gluten Free for nearly 6 months now and I have managed pretty much without relying on "Fake" bread. It is a nuisance not just been able to reach for a slice or 2 of toast when hunger strikes but I've got used to it now.

The other day I received a nice little box from Glutafin with a sample of their sliced bread and a small roll. Both products contain Wheat Strach and say they meet the Codex standard. They do however say they contain Wheat Starch. I checked my Coeliac UK bible and both items were listed in there. Today I had a real hungry spell mid-morning so thought I'd try a couple of slices toasted. Pretty nice it was too.......... can't believe it's not butter and Golden Syrup topped it off just for the record.

A couple of hours later I had a real stomach ache which was a fairly familiar symptom of months gone by before diagnosis. I can only put it down to the bread.

So after my ramblings - is this Codex wheat still a cause of problems for some coeliacs and is this why some of the bread and other products is labelled Gluten Free and others are labelled Gluten & Wheat Free.

Does this mean I am more sensitive than the average Coeliac (if there is such a thing) ? and should I extra vigilent ?

Any comments gratefully recieved.

22 Replies

Codex wheat starch is wheat flour that has been chemically treated to remove most of the proteins that trigger coeliac disease.

Many coeliacs are OK with this, but many are not and will get a traditional gluten style reaction.There are alternatives that do not use codex, but if you have had a reaction to this my advice is keep off anything that says wheat starch on it. Coeliac UK promote codex as being safe for most.....

There is a movement to say that clearer labelling and explanation is required....



A good question. Yes many coeliacs often report problems with gluten free products that contain GF wheat starch aka 'codex wheat starch'. This is wheat starch that has been processed in such a way that the gluten has been removed and it of course conforms to the new EU regulations of less than 20ppm. In fact for many brands it's closer to around 6ppm but they often just round it up to 20ppm for simplicity in their marketing materials.

For example Gluafin's products fall into 2 categories:

1) Select Gluten Free - contains GF wheat starch at 20ppm

(with codex wheat starch)

2) Glutafin wheat free & GF products - based on maize, soya and potato flour so they have no 'wheat' derived ingredients

However, there's a few other points to bear in mind:

- many newbie coeliacs are ultra 'sensitive' to all they eat whilst the villi recover from the damage due to the immune system battling gluten for a long time so you'll find tolerance of alcohol, chilli, caffeine, dairy, fruit can all be odd

- so it's often best to avoid any wheat derivatives even if they are gluten free during the first year or so of recovery - after that many coeliacs find that

re-introducing small amounts of food with codex wheat starch or maltodextrin for example are ok for them.

If you've ruled out any problems with cross contamination of your butter or any gluten in the maple syrup it may well be that you've reacted to the bread.

Although do bear in mind that many Free From food items are high in fibre and this can be bit of a struggle for your body to cope with - especially if you've not eaten any in a while. Genius regularly post on their Facebook page that some people react to their bread as they contain high fibre. In addition many coeliacs often discover that as their villi heal they can no longer process sugars in the same way they used to e.g. they may get severe bloating or wind especially from artificial sugars like aspartame, mannitol, sorbitol. It may be your maple syrup is very sweet and was tricky to process or it maybe it contained other sugars that were hard to process. It's always hard to know as obviously many factors can impact on how you react. Some GF breads also contain grains or ingredients that you may never have eaten in your life before eg teff, millet, potato flour. As such the immune system can sometimes react to these as if it is gluten as it classes it as a foreign invader - although this is rare and research in this field on cross reactive foods is still hotly debated.

If in doubt stick to GF foods with non-wheat derivatives then try and

re-introduce gradually ones with codex and see what your reaction is. Personally that's what I did and it worked well for me.

It is extremely rare for coeliacs not to be able to tolerate any foods that are less than 20ppm or continue to have severe ongoing problems like refractory coeliac disease. So it's sometimes trial and error. If you'd like to try non-codex breads some of our favourites are the brown Warburton's loaf and the Sainsbury's own brand Free From brown loaf with seeds.


Hi Fiona,

Thanks for your reply. I'll have another try with the bread when I am feeling 100% but this time without syrup, the butter should be OK as I have my own "special needs" butter as my kids call it!

Interesting what you said about sensitivity to other things, I never thought chilli NAND fruit would be a problem, you don't get mor naturally GFREE than a good old banana etc. If anything I have doubled my intake of fruit just to fill the gaps left by other things.

Thanks again.


Hi Fiona,

Thank you so so much for posting this. I have had a positive blood test result and have my endoscopy next Thursday. Regardless of the results I'm going to go gluten free immediately afterwards but I'm really struggling to get my head round it at the moment. Codex wheat starch was one of the things that was confusing me the most but you've explained it really well :) Thank you


In our country, Canada, gluten free and wheat free mean the same thing. There is no such thing as a little bit. It either is or it isn't. As long as you know all the hidden glutens by name, label reading is easy.


That sounds like a much simpler system, lucky you!


i have been celoic for 10months and like you had a frebie pack with there bread and at first had the same as you did but i have been ok with it since i can not have the brown bread as it does make me ill i asked celiec uk and they said to keep off brown bread for a while


Thanks barny, I'll leave it well alone for a while and maybe try again in afew months. It was nicer than some of the other breads I tried when first diagnosed.


Codex wheat is washed repeatedly in solvents to remove the bulk of the gluten it is inert and has no nutritional value.

I didn't go the codex prescription route after diagnosis and when I tried it I gradually went down with IBS? and my iron levels plummeted.

So I stopped eating it and I avoid oats and allowed levels of malt in breakfast cereals and my iron and mineral levels are normal and I am a blood donor.

And that to me speaks for itself.

In Oz they do not recommend codex wheat allowed levels of malt or oats for coeliac and have 5ppm which's undetectable gluten. In Oz I am an ordinary coeliac in the UK I am a super sensitive coeliac!


Hi Jerry,

Thanks for your reply - I have just taken the plunge and got a pre-payed prescription card to try some of the prescribable products. The main reason was that you can now get Nairns Porridge Oats - I tried some recently and had no negative response to oats. As a regular runner and cyclist this type of nutrition is really good for me to keep me full for longer.

I hope I don't regret it.


In the event of a negative reaction to the Codex Wheat Starch - does it result in long term effects or does it just cause a blip in the gut ? I know I felt better the day after but are there loner term unseen issues ?


Hi Ian, I'm not a medic, so this is my understanding. The reason our villi collapses is to prevent absorption of toxins so gluten does not stay in our bodies as we get the runs and pass it.

Now back to your question on oats. I remember when the topic of oats was first aired and in was seen as naturally low in gluten (avenins) as long as it was uncontaminated oats.

What concerns me is that coeliac are advised to introduce oats slowly and adult coeliac are advised not to eat more than 50g per day and coeliac children 15g. So my question is: if they are 100% gluten free why can't coeliac eat unlimited amounts of oats.

This is what the Australian coeliac say about oats and pure oats:

My son is a keen cyclist and eats oats for the same reason (he is not a coeliac) so I understand your interest and you can monitor how your body reacts to oats.

I'm an amateur cyclists and like cycling off road and on cycle tracks and when my son buys a new bike I buy the old one, I have a 24 speed Specialized mountain bike and a Trek sports road bike and often kids shout out ''nice bike mister''

Lastly I am not an expert but a coeliac and I don't make the rules on what is 'safe' for coeliac and what isn't so all my comments are from my personal observations.


Hi Jerry,

The Australian document makes interesting if not saddening reading! I was looking forward to having some porridge and feeling full for longer - breakfast is a real problem I find.

I have tried the breakfast cereals that CUK say are OK - for example Asda Rice Snaps and Corn Flakes but I'm again not sure I should be eating them in the first year or so. I really am getting miffed with this whole diet.

At least I can ride my bike to get some relief from it all - I'm sure you know where I'm coming from there ;-)


Hi Ian, you can make a porridge/gruel with many grains. i make a porridge with rice flakes sometimes, quinoa flakes are also a very healthy alternative. And I'm sorry I didn't mean to put you off oats I'm just a great believer in ''us'' the consumer being aware of what we are really eating.

So try the oats and see how you get on and if they upset you then at least you know.

Now sneaking in a recipe! you can make porridge/gruel by adding 55g/2oz to 1 pint and it doesn't matter if it is oats, polenta, quinoa, rice flakes or ground rice it's the same ratio,

Going back to malted cereals I personally wouldn't touch them with a barge pole regardless of what anyone says. This is because the test we use for gluten the ELISA test which is designed for wheat prolamins: gluten so it depends on the ELISA test used they either get an under reading or an over reading and if they use the most common ELISA test they only get a gluten reading of 6-8% of the actual gluten content. And again if you refer to the Australian coeliac society they do not allow ant malted cereals for coeliac.

Lastly don't get miffed with the diet just find what suits you and your body and at the end of the day we are what we eat and once you get on top of your diet it is well worth the effort. I feel I'm on thin ice contradicting what CUK say and I get miffed that I am a diagnosed coeliac who has to avoid food clearly labelled as gf but at the end of the day I am of rude health so it is well worth having gone the extra mile.

Here's a link with an exert about malt:


Why the confusion over barley malt extract?

It is very tricky to test for barley contamination in food. One of the assays (sandwich omega-gliadin ELISA) severely underestimates gluten contamination from barley; the other (sandwich R5 ELISA) overestimates gluten contamination from barley by a factor of 2. And when it comes to testing for gluten in a hydrolyzed product (a product that has been partially broken down), such as barley malt extract, the test that usually overestimates barley contamination may now underestimate it. It really is a confusing situation! Fortunately, there is an assay available for testing hydrolyzed ingredients. It is called the competitive R5 ELISA. <<<


Great advice Jerry and I the more I find out the more I get your point that you really have to paddle your own canoe and find what suits you and stick to it. As an engineer I like things where you can apply some logic to understand things - this clearly isn't the case with this diet - it all seems so varied.

I gladly listen to people like yourself who clearly have been through the same thing and come out the other side more informed and better equipped to look after yourself...... so again thanks for the advice.


yes it is there is a category of coeliacs who are super sensitive to gluten and can not eat any wheat starch even though the codex says you should be able to handle it


My understanding is that small or trace levels of gluten only affect a small amount of villi in the coeliac upper gut tract and this area of the gut is much less sensitive in the majority of coeliac. And an endoscopy only looks at some of the villi, this was in a research paper around 16 years ago when we had 200ppm as gf.


If you find that you can cope with Nairns Porridge Oats try eating Nairns Organic Oatcakes which are Wheat free. On the box they say they contain Gluten but as I undesrtand it ( and if like me, before you got diagnosed you havent thought much about what you ate- just whether you liked it!) it is Oat gluten which is quite different from Wheat.Anyway- I seem to be able to tolerate it. I promise you that once you get 'organised' wild horses wouldnt drag you back to a non GF diet- I felt immeasurably better within weeks and continue to do so. Wishing you the best of luck.


Thanks for your comment. I did try some of the porridge oats and didn't have any obvious reaction to them - but then again before diagnosis I didn't seem to have much in the way of stomach trouble. Since going GF though I now notice I have more stomach issues, maybe it's my system becoming accustomed to GF. My worry is that I eat oats with no noticeable issues but in fact inside it's causing havoc.


Hi JaneyD, I don't mean to say the wrong thing here but these oat cakes are made with organic oats and not the pure oats which are classed as gluten free.

This is a misconception that many people have that organic oats are the same as ''pure'' oats.

Nairns do have some oat cakes in their 'coeliac friendly' range so for safety it might be worth checking them out.

I have read about other coeliac who seem to be OK after eating ordinary oats, so each to their own.


Hi Jerry,Thank you- as I said I do find it very confusing.Happily I seem fine on them. I didnt know they did a coeliac friendly range though.I'll Google that and see what I come up with.I've recently discovered thanks to this web site that I can eat cornflakes- so hurray to that! All advice gratefully received.


Yep it would appear to me that even a small crumb of Wheat makes me ill, as I found out quite some time ago now...My son had friends in after a night out & of course they had some supper......Wanting toast one of them inadvertently Used MY Toaster and so they next day, I was ill but could not decide why I would have been ill.....but doing a bit of detective work, realised that my toaster had been contaminated....but I forgave the lads....I am still very sensitive to these small crumbs, I believe that I have become more sensitive, the longer I do not eat GF or Wheat.


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