Why does nobody consider the GF diet ... - Gluten Free Guerr...

Gluten Free Guerrillas

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Why does nobody consider the GF diet as a cause?


I note on many occasions that many on the GF diet having continued symptoms say they are on a strict GF diet and yet never consider the gluten content of this diet may just be to much for them. I exclude everything from a gluten source, yesterday I had one cup of tea with soya milk containing maltodextrin in and this morning its loo time.

40 Replies

I have some ongoing problems and one of the possible reasons is that my diet isn't as gluten free as I'd like it to be.

Once you add maltodextrin and glucose to the list of wheat derived things to avoid, then it's a lot more restrictive and almost impossible to follow unless you cook everything yourself from scratch.

I ate a coconut and nut bar last week that was supposed to be gluten free but could well have been cross contaminated given where it was made. And then my digestion gets worse, my tongue gets very sore and a week later it's only just starting to heal.

On the other hand, maybe I am clutching at straws. What if there's a second food intolerance, or something completely different wrong with my gut? How am I supposed to know?

I try to maintain a normal attitude around food, which is totally incompatible with extreme paranoia about wheat derived products and cross contamination. What's the answer?

Tiggykanga in reply to poing

I too have ongoing issues despite sticking to a strictly GF diet (after the initial flurry of trying replacements; breads/pasta etc so I rarely buy any processed food now preferring to cook at home but using several different proprietary "GF" flours). Another appt with the specialist 6 months ago resulted in a diagnosis of IBS to add to CD! Now my vegetarian diet is much more limited than it previously was (who would have thought that some vegetables/fruit are not good to eat :)

Anj1a in reply to Tiggykanga

How did they diagnose IBS just out of interest?

Tiggykanga in reply to Anj1a

Initially I had an endoscopy (and ususal bloods) to diagnose CD and more than a year later I had a colonscopy to rule out anything nasty as a result of my ongoing issues. It was after this that the consultant gave me a diagnosis of IBS (at which time I was told my GF diet was working well). But I discovered that a previous consultant (about 8 months into my diagnosis) had mentioned the possibility to my Dr in a letter which I had not seen.

I had a look around M&S a couple of days ago and in ours could only find one Xmas Treat which suited my taste, not marked GF but not containing any highlighted ingredients - within an hour of eating it I was in agony, along with a terrible headache and nausea. It may be that there was an ingredient but below 20ppm and not declared. If so no wonder I was ill (and I am one of the "less reactive" CD sufferers).

I tell you this because I wonder about labelling laws - take Maltodextrin for instance: If it is derived from wheat does it not have to be declared as a gluten containing ingredient (even if it is below the 20ppm standard)?

Must pose the question to the relevant authorities and Coeliac UK.

Anj1a in reply to Tiggykanga

I've been diagnosed with CD but still having symptoms. I don't want that colonoscopy

My answer is simple but is non profit making. Get a diagnosis first then go totally free of gluten (which means correct labelling) then introduce legal gluten free products, if that works there's the answer. if symptoms return there's the other answer. It would provide a better indication of sensitivity levels within the condition. Why diagnose and then feed a person low levels of gluten? not logic. Only winner being the manufacturer not the coeliac..

Remember pre January 2012 the safe level for coeliac's was 200ppm not 20ppm.

I think if food manufactures are so confident that their customers are ok with food containing any gluten they should have to list precisely how much on the packet e.g. 5ppm, 0ppm.

I think the 20ppm is far too high in the UK and lets manufacturers get away with more than my digestive system can tolerate.

poing in reply to pretender

Not that simple. I've tried to get a diagnosis but failed. I'm now at the point where I know that I couldn't eat gluten for long enough to get a diagnosis. There are two separate points here: diganosis isn't very good, and current gluten free labelling allows manufacturers to feed patients stuff that has a high probability of being contaminated (like wheat derived glucose).

pretender in reply to poing

How did you fail to get a diagnosis? The gluten content if foods for coeliac's is legal and very profitable for some.

I think one problem is labelling not being specific enough. I always assumed glucose syrup etc. was made from sugar. Imagine my surprise when I discovered it could be made from wheat. If we are not told what the food starts as, how can we make an informed decision? Another problem is the belief that 20ppm of gluten is safe. While it may be safe for some, I think most of the members on this forum would like the safe level to drop to zero. Until the Coeliac Society get on board with this ( I think they are burying their heads in the sand) we will have to stand together to get our voices heard.

Hummm! Correct labelling - such a bugbear and the Allergy Advice could not be left alone I do not know. With such small print on many labels it is too much trouble to try and seek out the gluten ingredients.

I'm thinking that many of you having problems are in the UK and buying in food labelled gluten free?

In Australia if it has any gluten it has to be labelled as having gluten, if it is processed in a factory/ kitchen that also processes anything that may contaminate it with gluten it has to be labelled as "may contain gluten". The catch comes with things that have glucose and dextrose as I am sensitive to those as well.

My answer is not to eat out and to prepare my own food from ingredients that are naturally gluten free. Unfortunately I am also sensitive to salicylates, amines, colours, flavorings, preservatives, grains and dairy! So you can probably see why I prepare my own.

Restrictive yes but at least I know what is in my food.

The problem with the UK is that we have had to accept opinions and Directives from the EU. The opinions are found by manufacturers carrying out their own tests etc which will of course exclude any who reacts and corrupts the tests. Most importantly they are not Coeliac's.

I eat out whenever the opportunity arises and have had few issues of contamination or ill health as a result, I take my own soya milk (less maltodextrin) avoid dairy and anything from a gluten source (knowledge gained with experience & research) I also have to avoid E464, and any foods that produce formaldehyde of which there are many.

The biggest problem are the alleged coeliac's and organisations who swear by the term "Gluten Free" irrespective of the gluten content who do not support those who have sensitivity issues, a Coeliac is a Coeliac.

I cook everything for me, from scratch. I do all my own washing up and always rinse. I check every plate, cup, tray that comes out for my use. And i am gluten free. I also have around 20 other intolerances, yes it is very difficult- mostly to keep my weight down! On a positive note- i have two friends that work at Doves Farm. They tell me all their gluten free products are prepared in a separate warehouse, well away from the other flours. I have tested some of their products and feel confident. Why can this not be done in other factories? They cant be bothered to do it properly, and have jumped on the gluten free bandwaggon!

Margo in reply to windymillersue

Hope you don't mind me asking windymillersue, do you make your own bread? It is so expensive to buy, tried making my own but it was awful. Wondering if you have a recipe?

Jerry in reply to Margo

Hi Margo, I bake all my own bread and use Doves farm flour and here's the recipes:


There are things we must not do when baking gf bread and one is to knock the dough back once it has risen as it will not rise a 2nd time and comes out like a brick. And you have to add just the right amount of water and I find a thick batter makes a better loaf.

The other thing that you could try is making rolls first and then when you've got it spot on make loaves.


Margo in reply to Jerry

Oooh thanks Jerry for the info' will give it a go at the weekend. Frankie

pretender in reply to Jerry

Having discussed GF with you Jerry on many occasions I was of the understanding that you were supersensitive and preferred the Australian GF level ie 5ppm. You are also aware that Doves Farm Flour has up to 20ppm of Gluten per kilo finished product which I understood you were sensitive to.

As you are aware Doves Farm Flour contained to much gluten for me and I gave away my breadmaker.

Jerry in reply to pretender

I was buying rice flour from an Asian shop and then noticed that I was sometimes waking up with a head ache so switched to Doves farm and the head aches went. Doves farm test their flours to be below 20ppm which does not mean that do contain 20ppm. It is buckwheat flour that periodically is tested to be above 20ppm and this is because it is often grown close to wheat or barley.

And I would much rather that we had more robust standards on gluten free in the UK and would very much like gluten free to mean none of the forbidden grains and to have undetectable gluten just like they do in Australia, rather than over here where if a food is below codex like malted breakfast cereals it is classed as OK for coeliac and contains gluten.

pretender in reply to Jerry

So you are not as sensitive as I was led to believe, this is a response from Doves Farm when I contacted them several years ago. I would sooner see labelling giving the origin of ingredients than the fancy names of refined grains.

Thank you for contacting us. We guarantee our flours as gluten free up to 20 ppm. For more information on our products please visit our website at :


Best Regards

Malago in reply to Jerry

Here here Jerry!

Lexy in reply to Margo

Hi Margo, I just recently tried this: bbc.co.uk/food/recipes/glut... It worked well for me and tasted good. Found it easy to make and lasted quite well too. May be worth a try?

Margo in reply to Lexy

Thank you so much Lexy. Brilliant!

And i cant do matldextrin


I have found that some supposedly gluten free things affect me ie:- cornflour, sugar,soya and oats which are in a lot of the free from foods and breads

pretender in reply to gizziesmum

Be careful of Free From foods as well as prescription foods because the majority contain "Hydroxypropylmethylcellulose" not everyone can tolerate this ingredient as in foods is an unknown quantity as it is not time tested or any known tests on coeliacs unless anyone knows of any. To many maybe blaming the wrong ingredients rather than what is in the gf product.

Sorry...please dont assume that all gluten free food producers are lax in their procedures and products.

Far from it.

If you need to ask me things...please dont hesitate to contact me.

Janet (aka Apricot)

pretender in reply to Apricot

Very true Janet but you need gluten or an alternative to produce many foods on the market for Coeliac's. The concern is that not all Coeliac's can tolerate the derivatives that are permitted and these Coeliac's are not understood by food producers, gastroenterologists or other Coeliac's, these continued symptoms are never considered to be the result of eating advised low levels of gluten in the diet.

I'm glad you posted this. I agree entirely. My gluten-free "journey" (trying hard to think of a less annoying word and failing!) consisted of starting off eating everything, feeling ill and eliminating something then feeling rough and eliminating something else. Etc etc ad nauseam – literally. Now I almost always cook from scratch and buy in occasional bits of processed food I know I'm OK with. It's taken me two and a half years to know what I can eat - I so wish I'd taken control and eliminated everything at the start!

I think part of the problem is that people become gradually more sensitive, so that something that doesn't bother them at first will later. At first I could eat dextrose/maltodextrin/glucose syrup etc but now I can't. And it takes a while to educate yourself about all this – not helped by the fact it's so hard to tell if processed foods have gluten in. I recently went to the GP with an apparently random upset stomach that went on for weeks – later on I read that the "gluten-free" rice milk I'd recently been happily drinking every day used gluten in the manufacturing process, and when I dropped that I was fine again.

And I think a lot of people with gluten problems (I'm not a diagnosed coeliac) look for guidance to Coeliac UK, who, with the best will in the world, suggest a whole load of things that I for one can't eat without problems. It seems to me that in the end you either you have a choice of feeling vaguely unwell and spending a lot of time trying to learn about commercial manufacturing processes or you just remove yourself from it as much as you can and feel better.

I agree about Coeliac UK, I wrote to them to ask if they could include the ingredients in their food and drink directory because I can't tolerate oats,corn i.e. maize starch,,dairy,lactose which are in their food directory products, but the answer I was given was to check the labels in the supermarket.

So basically the food and drink directory is of no use to me

Coeliac UK are not interested in Coeliac's who cannot tolerate the Gluten Free diet. I say this through experience communicating with them its called profit.

Okay, so what about if we eat nothing but fresh veg/fruit/meat/fish, foods we can identify and are pure, in the sense that they are completely un-processed besides being chopped up?

Should that eliminate any possible irritants?

I have found as a coeliac that I get more choice of foods by knowing where the ingredients originate ie Maltodextrin likely from wheat, glucose syrup likely from wheat then do not buy them. With my allergy I have to keep away from dried fruits, cauliflour, banana's, mushrooms, grapes and many more. You learn as you go along

Indeed we do learn as we go along ...... but am wondering why Pretender had that cup of tea the other day, knowing that often soya milk contains the nasty Maltodextrin!

pretender in reply to Malago

I found out a long time ago that many soya milks contain Maltodextrin so only buy soya milk that does not contain it and I take soya milk with me when I go out so I do not use any other.

So then what happened the other day!

pretender in reply to Malago

Grand-daughter 18 months old (stayed overnight, only the second time) is lactose intolerant so she was on soya milk, hers had maltodextrin in and I just grabbed the first carton from the fridge.

Having read down this thread my impression is you appear to be quite knowledgable regarding derivatives used in GF produce and I wondered why you did not think to check the Soya Milk ingredients before ordering your cuppa?

2 years on I still flounder through the shops, trying to determine just what is GF and Soya Milk would not have occurred to me so thanks for that!

It is a shame that Coeliac UK do not provide us with a list of derivatives which could be from a gluten source and even more of a shame that they are not campaigning to get the food labelling laws changed to a degree that if anything in a product has any form of gluten in it it has to be "in bold" so that those who react to the slightest ingestion of gluten can be better informed.

Pretender: I just read this again and my response looks like a criticism for which I am really sorry, it was not meant to be but just a question. I am as a result of this thread much more careful when reading ingredients - and I always thought I was anyway so I learnt a valuable lesson here).

quite frankly, all the so called gluten free food is now a very LUCRATIVE INDUSTRY and probably the only way to remain really well is to choose not to eat any food that contains gluten,

When in SA i did just this and was well had energy and no problems with weight ,

here I was tempted with bread and goodies and convenience foods, and that vague feeling of ill health returned, but I trusted the industry,

After a miserable year last year I reverted to totally gluten free foods, Potatoes do me very well for carbs and other veggies, magic? feel great again.


One way is to write to manufacturers and tell them that we won't be buying their products unless they really are gluten free, and they may change,

We can actually eat healthily without them so have a trump card.

The problems then are for those who are not acutely sensitive and yet are damaging their intestines all the time and risking the later complications of cancer.

Its my choice what I eat and I prefer vigour and energy to vague feelings of ill health.

ALSO, the way coeliac disease is diagnosed is daft, why should people be made ill just to get a positive biopsy which may be incorrect anyway, Dicke in his thesis,noticed the improvement of children in post war Netherlands on diet and consulted the kitchen staff, who told them about the variety and scarcity of grains available and it was through observation that he postulated his thesis.

So its up to us, make our own choice and bombard manufacturers with letters and refuse to buy certain products and tell them why

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