"Gluten Free" .... how wrong could I be?

[Lynxcat]

Like many who have Coeliac Disease, I have been taking comfort in the fact that items, once checked and established as definitely 'gluten free' are a comfort when I'm out shopping. In otherwords, I can happily go along and pick them up and place them into my basket or trolley without an added care in the world. This is the daydream and misapprehension that I was up until yesterday happily living under. The only time I had been scanning labels for problems and issues of items containing some form of gluten was if I was purchasing something new, different, out of the ordinary and never purchased before.

How wrong could I have been?!!

For yesterday, I had eaten just a banana and a boiled egg - I knew that both those were perfectly harmless. I had felt a little sniffle coming on - didn't want to catch a cold, as who would? So I took a Vitamin C tablet. I had recently purchased the same bottle that I had had before: it states on the label - No Artificial Colours or Flavours. No Starch,No Milk, No Lactose, No Soya, No Gluten, No Wheat, No Yeast, No Fish, No Porcine.

About an hour after I had munched one - my tummy swelled up - I had swallowed a football! I had turned into Winnie the Pooh! I had been blown up with a air pump! Then I began to get gripes, twinges of pain a feeling of twisting inside followed by a nauseous wave and finally a headache. So I went through the ingredientsm, whatever could have been causing the problem? Then I found it Maltodextrin (but wait a moment - maltodextrin is safe if the product is manufactured in the US, isn't it - the information tells us that wherever we look? This, apparently was made in the US so why the problem? Well those of you who know me will know that I had to investigate further - after all, when something makes you feel ill then it deserves full investigation so I put my Miss Marple hat on and began searching for coeliacs and problems concerning US manufactured maltodextrin.

I found this, which so far is the only explanation I could find - but if any of you have further information please do add it to this post so that everyone else can share the benefits.

* * * * *

"(1) Maltodextrin, when listed on food sold in the USA, must be (per FDA regulation) made from corn or potato. This rule does NOT apply to vitamin or mineral supplements and medications."

"The interesting thing about maltodextrin for many commercial food manufacturers is that unlike other starch sweeteners, "maltodextrin" (the word by itself) can be used in your ingredient list regardless of the original source of starch."

So the only conclusion that I can come to - as I continue to have a slight headache and a tummy that feels as though a hedgehog family has spent the night in it - is that the source of the maltodextrin used in the vitamin appears to have been made from something other than corn or potato.

So NOTE TO SELF - and possibly to others assuming that if they purchase something on a regular basis it will continue to pose no problem: ALWAYS CHECK THE LIST OF INGREDIENTS AND BE CAUTIOUS ABOUT THINGS THAT COULD POSE A RISK!

[Hidden]

Hi Lynxcat and firstly I'm sorry that you've been ill. I think that it is a shame that wheat derivatives do not have to be labelled as such in the EU.

I know they have odd rules about vitamin tablets in the US as there was a craze with film stars et al taking mega doses and according to this 300 of the 420 vitamin supplements sold in the EU will be banned by the codex commission:

sdadefend.com/Health/codex2...

Some charming analogies on your Blog, What does your hubby do when you put your Miss Marple hat on? think you are going out LOL

And I hope that you feel better soon.

[Lynxcat]

I hadn't seen this about the vitamins before Jerry!! And regarding Miss Marple, my husband just does a Poirot and twirls the moustache!! Lol!!

The effect is slowly wearing off - haven't eaten today so far so hopefully will feel okay after the evening meal!!!!!!

[DiabetesPower]

Hello,

Thank you for that. I have 2 daughters who are coeliac. I will read even more closely in future.

Angela

[Lynxcat in reply to DiabetesPower]

Hi Angela, That must be tough for you. I live in a household of those who can eat gluten and those that can't and the separation of meals sometimes make me feel like I'm running a restaurant! Lol!

Please feel free to ask about anything you are not sure of and all of us will try and help to cut a path through the forest of facts and myths.

[DiabetesPower in reply to Lynxcat]

Hi,

Thank you. Do you have any thoughts on packed lunches and different options. Sometimes I feel the girls get fed up with the same old lunches.

Best wishes

Angela

[Lynxcat in reply to DiabetesPower]

Hi Angela,

Do your girls have a reasonable time for eating their food? Do they find it difficult to gain weight? Do they have to be restricted - do you have to watch their weight? All of these are relative as to what may be suitable for them to have for lunch.

What I have always found quite nice and is especially enjoyed by children and adults alike is a sort of pancake bread. This can be made the night before, is easy and full of goodness and filling. I think if you choose to make it though, it might be best to make it on a day when they are not at school and ask them if they enjoy it first and whether they would like it for school lunch.

To make pancake bread you will need a jug and a frying pan as well as a whisk or wand blender:

The mix consists of 4oz or 125g of gluten free flour - I use Doves Farm Gluten Free Self Raising Flour

1 large egg

Half-a-pint of full fat milk

a pinch of salt

(you may add favourite things to this like sesame seeds, poppy seeds, chopped walnuts, flaked almonds, the flesh of a tomato .. or whatever flavour appeals)

Whisk all of the contents together.

In a frying pan (I always use a stainless steel one) add one small knob of butter and a splash of nut oil - almond tends to be the most mild of all of the nut oils.

Heat up the pan and melt the butter an nut oil together and swish it around the frying pan. Pour in the batter .. turn down the flame .. cook fairly slowly .. turn over when the bread cake is firm on the top side and cook until golden brown. Allow to cool and add filling - it works well with fresh meat slices and shredded salad or salmon beaten up with a splash of butter and some cream cheese - add salt and pepper to taste - spread over the bread cake add chopped chives some baby little gem lettuce and sea salad (this is available from health shops and is all of the delicate seaweeds broken up and ready to sprinkle onto sandwiches, salads, soups, etc .. it is purchased as 'sea salad' is reasonably priced and extremely nutritious as it is full of natural minerals) .. another tasty topping that children usually love is peanut butter and cream cheese. You can also have banana filling - use a ripe banana mash gently and either add double cream, Greek yoghurt or cream cheese. Minced pork cooked with a pinch of brown sugar, half a chicken stock cube, half a spoon of peanut butter, a mashed carrot - cook the carrot with the mince and mash once it is cooked as it absorbs the goodness from the meat, add half a spring onion and a little pepper - mash everything together and place this onto the bread cake - it is like a sausage sandwich only much more nourishing.

phew!! that's all for the moment.

[Elisesmummy]

Hi Lynxcat, sorry you've been feeling poorly. Horrid. So can I just confirm, can coeliacs have maltodextrin? It's in the "best of" Bisto gravies which Coeliac UK says are fine, but now I'm worried. As you know, I'm struggling with getting everything under control with my 3 year old and I definitely don't want to be glutening her without knowing it! Thank you! X

[Lynxcat in reply to Elisesmummy]

Hi Elisesmummy - Well I may surprise many here but I had a copy of the CUK directory sent to me - as I joined them initially. Since reading all the literature that they made available to me I became extremely disillusioned by many of the items they advised were safe to include in a coeliac diet. It was then that I decided never to renew my membership to them again.

The main thing that is of vital importance with coeliac disease and with gluten intollerance is to avoid all gluten if a person is to become and remain healthy. There are some who may disagree with me but I am convinced that if we bend the rules and take in gluten unnecessarily then we could be risking more than an upset tummy or headache. On many of the US sites they now have disclaimers (in the US the law at the moment allows gluten free to contain up to 200ppm and it is said to be considering to make it more uniform to join in with the rest of Europe at 20ppm) very often, to cover themselves these sites place a warning that states quite clearly that they think it most unwise for anyone with coeliac disease to risk taking in any amount of gluten as it is not fully known what effect this will have on their health throughout their lifetime.

Apologies as I don't mean to sound all doom and gloom - but my thoughts are that if it potentially may contain gluten then for health, happiness and hopefully long life it is best to avoid something that may lead to developing further autoimmune diseases or life threatening additional illness.

Here is an excerpt from a US site that reads as follows:

"Yet an estimated 99 percent of people who have a problem with eating gluten don’t even know it. They ascribe their ill health or symptoms to something else–not gluten sensitivity, which is 100 percent curable.

And here’s some more shocking news …

Another study comparing the blood of 10,000 people from 50 years ago to 10,000 people today found that the incidences of full-blown celiac disease increased by 400 percent (elevated TTG antibodies) during that time period. (ii) If we saw a 400 percent increase in heart disease or cancer, this would be headline news. But we hear almost nothing about this. I will explain why I think that increase has occurred in a moment. First, let’s explore the economic cost of this hidden epidemic.

The most serious form of allergy to gluten, celiac disease, affects one in 100 people, or three million Americans, most of who don’t know they have it."

The thing to remember is by avoiding gluten we all stand a really good chance of having a normal, healthy, long life especially if the disease has been caught as a child. The older we get or the more gluten we keep adding to our diet the more chance we have of developing something bad.

So - to conclude: I would never risk eating any form of maltodextrin - no matter who said it was safe because, I do not think it could ever be worth the risk. I do not know whether Bisto has maltodextrin made from potato or corn but ask yourself why do they include it - why not just add sugar if they feel that their customers want sweet gravy?

[Lynxcat in reply to Lynxcat]

Apologies Elisesmummy - firstly for getting carried away (it annoys me the fact that so many in authority list foods as safe when they contain wheat starch and/or gluten - it is our lives that they are playing with not their own.) - the answer perhaps should have just been - no I wouldn't risk eating maltodextrin as I also wouldn't risk eating Codex wheat starch or oats too.

The full link for people to read if they so wish to do for the quote above is as follows:

drhyman.com/blog/conditions...

[Hidden in reply to Lynxcat]

I think this is the article you're referring to Lynxcat:

huffingtonpost.com/dr-mark-...

[Lynxcat in reply to Hidden]

Thanks Jerry, I had about 25 different sites open - as I am always trying to grasp more information on this disease that is attacking us! Lol!!

I have noticed that whenever there are any articles pushing the safety of Codex wheat starch and other variants that are deemed all right and the 20ppm ..... I have so far not seen one on testing a) the safety aspects on life-long coeliacs and b) a list of coeliacs who eat this kind of thing regularly listing what further ailments they have been struck down with in the course of their lifetime. How many have other autoimmune diseases that have developed whilst they are on this 'safe' diet? How many have developed cancers or heart conditions on this 'safe' diet? How many are there who have just coeliac diease and nothing else - in other words are 100% fit and well apart from having coeliac diease on this 'safe' diet? Where are those figures?

Sorry for the rant, Jerry ............ but those that advocate anything in with gluten and sell it as safe to coeliacs are a problem to us all and how do they determine these things are safe? How many coeliac volunteers have had full head-to-toe examinations using these foods? How many out of how many are 100% well - without headaches, and traumas and apalling side effects? Where are those figures?

Gosh!!!!! See what a little maltodextrin can do!!??!!

[Hidden in reply to Lynxcat]

Hi Lynxcat, you have a rant and please don't apologise to me.

When we used to have 200ppm as the safe level of gluten in gf food in the UK I did some web searches and found an article that said the reason that coeliac could tolerate this level of gluten is because levels like this only attack a small area of the upper gut tract and this upper area is far less sensitive in most coeliac.

My opinion on this has always been what about gluten crossing the coeliac blood brain barrier and affecting more than just our upper gut tract, like our other vital organs.

I also believe that because many UK coeliac go from a full on wheat diet to a wheat starch and malted cereals one, that they still have a tolerance to this allowed gluten. And in the EU and UK the experts reckon that 5% of coeliac cannot tolerate 'pure' oats whereas in Australia where they have 5ppm no codex wheat no allowed levels of barley they reckon 22% of coeliac can not tolerate 'pure' oats. Please see:

coeliac.org.au/content/down...

You make a very valid point and it would be interesting if coeliac on a text book gf diet with other issues like anaemia, thyroid issues, IBS or type 2 diabetes avoided codex wheat malted cereals and just had naturally gf foods. They might feel better and want to get on their soap box like me LOL...

[Lynxcat in reply to Hidden]

Just an extra little note Jerry: Might it be that those coeliacs that go straight from a wheat/barley/rye standard diet and onto a regime of guideline Codex wheat starch and 20ppm gluten diet, perhaps never know what it feels like to feel fit and well and normal. It is often the case that when people develop any kind of disease they get to a point when they think they can never get any better than a certain point ....... a very sad way of looking at things, but often so true.

I would say to anyone, if they are coeliac or if they have gluten sensitivity - give up all gluten - from every source. Make time to heal yourself and you will be surprised at just how fit you can feel!

[Hidden]

I have to agree with Lynxcat here about maltodextrin being a wheat derivative and containing gluten in the EU and UK.

efsa.europa.eu/en/efsajourn...

According to this the EFSA tested people who are coeliac and wheat imtolerant with maltodextrin and dextrose derived from wheat with 30ppm this is 50% over the maximum of allowed gluten in gf food. They also say it is important not to go above the codex limit.

I think that one of the issues that we have in the UK and the EU is that codex wheat starch is deemed safe for coeloiac and according to Coeliac UK it is safe for all coeliac. When many of us know that we cannot tolerate codex wheat. So my opinion is that because we can get codex wheat on prescription at great cost to the NHS that wheat derivatives with traces of gluten have also to be considered as safe for coeliac. In fact Coeliac UK say on their web site that wheat starch used in prescription meds is highly refined pharmaceutical quality, and OK for all coeliac. I cannot tolerate this pharmaceutical grade wheat starch because my body cannot differentiate from pharmaceutical gluten and ordinary gluten, as to my body gluten is gluten full stop.

One small point here is that gluten free in the US is 20ppm as the US congress passed legislation on this, sorry to pick you up on this.

Some gf food manufacturers like Wellfoods use maltodextrin derived from beet, I've also seen it listed as from tapioca. So why do some manufacturers go to this extra trouble.

In the UK many coeliac eat codex wheat, barley malt in pickles and malted breakfast cereals and uncontaminated oats and we have 20ppm as gf.

In Australia and NZ they have 5ppm as gf and no wheat no barley or oats. And wheat deriv's have to be labelled as just that. In Australia they also reckon that over 20% of coeliac can not tolerate pure oats.

I am an idealist and a great believer in us the consumer being aware of what we are really eating so I apologise if my views and contrary to the UK coeliac society.

[Elisesmummy]

Thank you much to both of you for responding to me. I really am starting to realise that we are on our own, except for being in touch with guys like you! It's absolutely invaluable to me that you are so knowledgeable and are willing to pass that knowledge on to me. I am desperately trying to help a 3 year old feel better and that is so hard. I do know what you mean about the coeliac society's food guide - the number of breakfast cereals they say are ok when they're not is amazing. My toddler is now on Natures Path cereals - almost £3 a box but who cares!!!!! Thank you again. And please rant all you like. It all helps! Xxx

[Lynxcat in reply to Elisesmummy]

One breakfast that you may like to try is:

Boil up a desertspoonful of millet grain (washed well beforehand) in a small saucepan with a tiny pinch of salt - only a few grains

Once it is tender - take it off the stove and strain any excess water off

Allow a minute or two to cool in the pan, then crack into the pan an egg - return to the heat

Beat the egg with a tablespoon so it spreads through the millet grain then either add a teaspoon of honey or drizzle some honey into the mixture .... keep stirring for a while until the egg is cooked - it only takes a few moments.

The result is a lovely and nourishing breakfast that tastes rather like egg custard. This is one of my favourites (except being an adult I use a tablespoon of millet grain) - The recipe is called Wicket, if you've never tried it then perhaps give it a go it makes a lovely change.

xx

[mcroucher1]

do you know if there's been any research done in the UK to estimate how many CD sufferers are also intolerant to pure oats? I've tried Free From muesli and have got a packet of Free From oaty granola in my drawer. The muesli made me feel awful last week so am thinking of taking back the granola and exchanging it for something else.

[Lynxcat in reply to mcroucher1]

Personally, I would say that that all CD sufferers are intolerant of any form of oats purely because - oats are a rotation crop. Therefore the following pieces of information have to be considered: A field of oats may previousy been a field of rye, barley or wheat; the equipment used to gather in the grains (combine harvesters, etc) are usually so expensive that they are shared .. they couldn't afford to buy one to be used on a field of oats alone; pure oats, washed oats, gluten free oats are most likely those sold below 20ppm gluten some as low as 10ppm - I believe but none at 0ppm - in other words they all contain wheat, barley or rye gluten as well as their own avenin (gluten) which is left whole and not removed from their grains.

The point of a gluten free diet is for it to be gluten free - this gives us all a maximum chance of regaining our health and for our health to remain at an optimum level throughout the rest of our lives. If we dice with minute amounts of gluten then we could potentially allow other autoimmune diseases to strike us down, develop other major conditions that we would rather not choose to think about or in a very worst scenario simply shorten our lives

There are many who would advise you to carry on eating oats and even to eat Codex wheat starch and othr foods that contain small mounts of gluten as manufacturers are able to sell them to us at 20ppm. I would say we have to take ownership of our condition - it is proven that gluten can bring about our demise and make us susceptible to many more diseases and other long term issues with our organs and bones, etc .. so to sum up I would, and this is my own personal advice, say I do not think oats in any form are safe for any coeliac to eat under any circumstances.

[mcroucher1 in reply to Lynxcat]

Thanks Lynxcat. It makes you wonder why companies make such items as pure oats muesli and granola marketing them as gluten free! I will definitely take my granola packet back and change it for another breakfast cereal

[Lynxcat in reply to mcroucher1]

I think people will sell whatever they can - it's all about the money!

[windymillersue]

hi

maltodextrin is a bit of a minefield. I have avoided this for ten years or more because i have a reaction to anything corn/maize derived also. You just cant really tell where its from, and it will change throughout the year, and its sneaked into so many things!

I just put it back on the shelf, there are others to choose from. I have been coeliac for 18 years and major other allergies for 25, so much more choice now! everyone knows so much more!

[Lynxcat in reply to windymillersue]

Hi Sue,

The one thing that we have in our favour now is the Internet .. at least we can spread the word to each other which is a good job. It is so helpful when we are warned off different things by others and it saves many of us having to go through the bad experiences in the first place.