I have been diagnosed as coeliac for 18 months, and I am still learning. I have not yet got my blood test results down to where they should be, in spite of being very careful and mostly eating my own home cooking (and nothing else by my own home cooking thanks to Covid!)
I have some questions that I hope someone with more experience can answer.
Firstly I have given up oats (10 days ago) because I couldn't think what else I am eating that could possibly still be giving me a bad blood test result. I have read conflicting advice about this, but decided to follow the Australian "rules" rather than trusting the UK ones. Any comments about whether this is likely to be my problem would be helpful
Secondly, I have been reading old posts on here and realised that there is a potential problem with glucose syrup. I generally avoid sugar of any sort, but I have just read the ingredients on my packs of Kallo GF organic stock cubes, and one of the flavours lists glucose syrup. All three of the ones I have also list yeast extract in their ingredients. Should I be using them?
Finally - typing this made me wonder about gravy granules. I have just looked at my pot of Tesco GF gravy granules, and it lists maltodextrin - is this safe?
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Whydothis
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Hello Whydothis I avoid oats because I am very sensitive to gluten and all coeliac experts agree that avenins the gluten like protein in oats have the ability to upset all coeliac. Oats are naturally low in oat gluten (avenins) I don't like the advice to introduce them slowly to build up a tolerance and not to eat more than 50g in 24 hours it doesn't sound very GF to me!
The other problem is oats are notorious for being cross contaminated with wheat and I've seen GF oats where they boast that they are contain >10ppm of gluten.
Some coeliac can tolerate oats and some can't. In the UK it is claimed that 5% of coeliac can't tolerate them yet in Australia is was 25% and with the coeliac children the trials were ended as all the children had a reaction.
Now maltodextrin comes up all the time because artificial sugars are known triggers for IBS and artificial sugars that are what derivatives do not have to be listed as such and maltodextrin can be a wheat derivative as can dextrose used to coat French fries.
You have to look out for supermarket breakfast cereals containing malt as well as malt is not gluten free.
Then you get down to artificial sugars used in meds and supplements and a common artificial sugar used in many supermarket supplements uses manitol which's a wheat derivative and used as a baby laxative so these supplements are a disaster for me and are clearly labelled as gluten free. Caramel colours E150b,c, and d are wheat derivatives. Citric acid can be.
I eat a whole food gluten free diet and cook most of my food from scratch and my blood levels are good and my villi has recovered as I've had a second biopsy.
I post lots ion recipes on the Healthy Eating community please see:
I like the Australian system as they have undetectable gluten and none of the forbidden grains as their definition of gluten free with the addition wheat derivatives having to be being labelled as such by law.
For gravies I use the Marigold low salt gf bouillon:
I am upset about not getting this right so far, as I was very positive when I started and treated it as my new project - to research thoroughly and sort out my new diet. I have always been wholefood inclined, and very keen to eat foods in their natural state, so I do cook most of my meals from scratch, but I did start by trying all the various breads and wraps on offer, and eat them occasionally, and I have accepted processed stuff from other people when I am out, thinking it was better than cross-contamination in their kitchens.
I now realise that my big mistake was to base my research on the information put out by Coeliac UK, because they are recommended by the NHS. I received no advice at all after diagnosis, and had to ask for every blood test I have had. I was not told about oats, and certainly not about some people being unable to eat them, and the 50g suggested maximum - I have learned these things much more recently. I did understand about the contamination with wheat (we used to farm, so I know what the inside of a combine and a grain store look like!) I felt so much better on my GF diet that I didn't realise my guts were not yet back to normal, and thought I was doing well until I got the results. I did ask to see a dietician after the one year blood test, and she convinced me that the test was due to cross-contamination at Christmas (February test) rather than oats, and told me to give the oats another 6 months. After my recent test (no advice, just the test result over the phone) I have given them up - and suddenly I have remembered what proper digestion used to be like - I have got rid of problems I had got so used to I didn't notice!
All this has made me reject the CUK advice and look further - and found the Australian, which is making me completely reject the whole 20ppm thing, and question all the ingredients in everything.
I am now reasonably confident that so far as eating at home goes I will now get it right, but I am feeling very worried about the implications about eating out - I have a group of friends who like to cook for one another and share meals, and I visit family and some friends for weekends (in "normal" times!). It is upsetting me to think that this is going to disrupt my social life even more than it has for the last year and a half.
Sorry - I am "going on" about my problems again!
On a positive and practical level - thank you very much for your pointers. Yes - I have seen your recipe ideas in the Healthy Eating Community - they are inspiring - thank you.
And thank you for the Marigold bouillon info - I will get myself some. I have just given my favourite Kallo organic stock cubes in three flavours away to my sister, and the gravy granules I use occasionally will go on the compost heap in the morning! I will now play my game by Australian rules!
Good morning Whydothis firstly your post reflects what happened with me as I only ate naturally gluten free products my anaemia and villi recovered very quickly but I was a single working dad so started eating foods in their food list and I went anaemia and Dr’s thought I had IBS! I threw their food list in the bin researched things and have a badge as a blood donor.
Unfortunately we can get codex wheat on prescription in some areas and if codex wheat is safe then all glutenous grains below 20 ppm are deemed OK so U.K. coeliac are “allowed” to eat foods not considered gluten free around the world.
The funding from the codex prescription suppliers has made the U.K. charity the biggest most influential coeliac charity in the world! But they have big overheads and are struggling financially because of the lockdown.
Really coeliac who are very sensitive to gluten are the coeliac who need and deserve the most support yet we are ignored as are our needs.
I have had very similar conversations with Hidden so if you check out her posts you will think deja vu.
I realise that I’ve chatted to you on HE I thought I had on PWB so that’s my mistake.
Food for thought the Australian coeliac society even give advice to their members who are super sensitive as do the US charity.
As you say how can a U.K. coeliac eat out safely when food clearly labelled gluten free contains allowed levels of gluten...
To me being healthy is my priority and I’ve a neighbour who is a vegan and they’ve chosen to be gluten free and we use the same flour from the same shop so I get home made gluten free cakes sometimes.
Just as a thought - I've found Kallo products generally to be an issue, even their rice cakes. I no longer trust them as a brand. They also make the Mrs Crimble products. I've checked with them and they do produce wheat-containing products in the same factory. They claim to test the GF products, but I just avoid them now generally through unusual experiences with their products that are meant to be GF<
Thank you - I have occasionally had Kallo rice cakes when hungry as they are the only thing in my mother's kitchen I thought i could eat! Friends love buying Mrs Crimbles for me to go with every cup of tea - I will put a stop to that! I hadn't checked them for the "produced in the same factory" notes, as I don't buy them myself - I am now unhappy with anything that relies on being tested to 20ppm rather than being free of gluten.
Mrs Crimble also contain glucose and dextrose which may come from wheat source.
Glucose syrup comes from grain source, which can include wheat. Same for maltodextrin.
Our current cack food laws mean that manufacturers don't have to state what the source is as they are considered so processed that no gluten left, but many will tell you otherwise.
Similar to yeast extract - brewers yeast/by product of brewing industry is common source of yeast extract.
Since being ok with lots of GF products for years, and then not for the past few, I just avoid these ingredients now. If you are still reasonably new to gf diet, best to adopt a whole food diet and avoid additives. No only can additives be a possible source of gluten, they generally are damaging for GI tract, so important to avoid to fix damage.
It is confusing, and I still fall foul even with a stringent diet.
The issue we have is the seal of approval they receive with the likes of Coeliac UK and the EU directives on the 20ppm. It irritates the heck out of me, and I think you are arriving at the point that many arrive at. I recently got really ill from a brand of cassava flour that claims gluten free on the packaging and state (when contacted) that the flour made in a completely gluten free factory. So why did I get ill?!! Manufacturers out to make money and will be cagey with the truth. I check a lot these days and find, as the poster above has stated, that most GF labelled products are produced in factories where gluten present. It would be nice if we could trust the GF labelling, and crazy that people with coeliac can not even trust products that are labelled at GF. Makes no sense. I think you do well to go with the Australian standard.
The various flours are now the thing that will worry me most. I have started to run all my grains (buckwheat, rice, quinoa) under the tap to remove any dust, but I buy buckwheat flour, rice flour, gram flour - I will just have to trust them about contamination as there is nothing I can do!
Dove Farms Freee is a really good manufacturer of GF flours. They have a dedicated factory for their GF flours and do a full range, from standard GF flour, to the individual buckwheat flour, rice flour, millet, etc. I think they are your best bet, and you'll find many of the posters on here who struggle with the 20ppm will recommend Freee by Dove Farms. They are stocked in the bigger stores/Tesco/Sainsbury or you can buy online.
More often than not maltodextrin comes from corn, which is GMO. This is something of concern when in the hospital on an IV. Always, demand a saline drip, not one of dextrin.
Thank you. I did use Doves Farm Freee to start with, but for the last few months I have been shopping online from Forest Wholefoods as they do larger packs of organic, gluten free flours. I especially like their buckwheat flour, which is labelled GF. However, on another look at their website I realised that this is "packed on premises that handle . . . " I did email Forest to ask about this, and got the usual reassurance that everything is tested to 20ppm so I will have to go back to Freee. I didn't realise they sell online, so I will look at their website.
Thank you to everyone who has helped here. I have just found a manufacturer I like the sound of - I will post separately in case it helps others as well
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