I am former member of this group from a number of years ago, but have not used the forum since about 5 years ago. I have dealt with coeliac in an ongoing fashion but have become intolerant now to the BS of the 20ppm codex and the failures of Coeliac UK to lobby for better. I can not tolerate any 'gluten free' food that is commercially sold, do not eat out, and find I am living a very limited life as a result.
I have had correspondence previously with Coeliac UK on this topic, but find myself concluding that their primary interest is helping food manufacturers to pump out more of the same, despite the injury it is causing for many. They have disbanded their APPG so we have no parliamentary representation, GPs are still as clueless as they have always been, and I do not feel in any way represented as a person with a lifelong medical condition.
I plan to write a letter to Board level at Coeliac UK in the first instance raising the following issues:
1. Failure by CUK to provide transparency on gluten codex
2. Failure by CUK to provide advice to those who can not tolerate gluten codex
3. Failure by CUK to put research funding towards finding out how many people with coeliac/gluten intolerance can not tolerate codex.
4. Failure by CUK to reinstate the Coeliac APPG
5. Failure by CUK to lobby/support improved labelling of ingredients that come from gluten source (e.g. yeast extract, glucose, dextrose, etc.)
6. Failure by CUK to improve awareness of coeliac symptoms and testing at Primary Care level (GPs).
7. Failure by CUK to represent all people with coeliac, not just those who tolerate codex.
Coeliac UK is a charity and they have to abide by charity rules. In respect of the above points, they are currently falling short as a charity and harm is being incurred for those with coeliac in UK who are supposedly represented by this charity. People who do not tolerate codex are being gaslighted on the safety of gluten free products, and there is no transparency by Coeliac UK on what the codex level means and the cumulative damage that can occur even for those who do tolerate codex. Coeliac UK is, in effect, supporting harm-doing to those with coeliac despite drawing in funding on the basis of supporting those with coeliac.
If you would like to co-sign the letter (once I have it drafted/written) please state so in the comments section and I will supply an online link for the letter. If you would like to add any additional points to the list above, please provide those also in comments.
Many thanks,
Veronica
Written by
NorthernCoeliac
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I will sign it too. I have only recently been diagnosed with Celiac disease in December and luckily someone on here told me about the codex wheat. I also think that the Dieticians should know about it too. I spoke to one a few weeks ago after being referred, and I told her that I wouldn't be eating any products with the codex wheat in and at the end of the conversation, she asked if I had tried Juvela products. I told her no because that has gluten free wheat starch with a trace level. I told her I didn't know why it was being promoted for us to eat as it's on the prescription list too, as my understanding was that I had Celiac disease and that I shouldn't be eating even traces of gluten. She didn't know what to say to me
That is such a common story, and great that you were forewarned on here. The codex goes beyond the wheat starch and any product labelled gluten free can contain 20ppm of gluten, and don't actually have to be tested to declare gluten free status. Most food companies work within the law and are happy to answer questions, but all state they work to current legislation so are doing nothing wrong. Upshot though is this just doesn't work for us all, and it's unclear how many that is. I hope you are adapting, despite the dietician being so poor on knowledge.
I am really careful and also aware thanks to people on here that gluten doesn't have to be labelled in many things. I read the labels really carefully. I have just had it happen with my Ferrous fumarate tablets too. The brand I have been having have been ok, as I rang the company to check if they contained any gluten. I have had my repeat prescription and been given Ferrous fumarate tablets in a white box, with no brand on and no patient information leaflet. When I rang to ask them to tell me what brand they are, and if they contain any gluten, I was made to feel like I was making a fuss and being awkward. I am not bothered and stood my ground and told her I am the one taking the tablets, and I need to know what they contain, as they could make me really ill. I also know from the Thyroid forum that all medication should be labelled properly and should come with a patient information leaflet. The problem with iron tablets is that they are classed as a food product, so also don't have to say if they have gluten in
Now that is bad when you are given something without ingredients, manufacturer or patient information. Stunning fail on the part of the pharmacist. Yes, they are good at making you feel like you might be the problem, not them. It's just not on their radar. Similar experience I've had where pharmacist dumped it on me to chase up with the manufacturers, and then GP prescribed an offending version of iron for a second time that gave me a bad reaction (not gluten though). I did not realise the supplements feel under 'food'. Well done for standing your ground.
It's a good idea, but for me I have experiences of approaching local MPs that has changed my perspective on them massively and not for the better. In terms of Minsters for Health, etc., because Coeliac UK dominate the space they are influencing the opinions and decision making of those who might be able to do something, and are keeping coeliac too far under the radar for anyone's attention. It needs a motivated MP (rather than my local one.....) to take it up at Parliamentary level and for the APPG to be reestablished which Coeliac UK are just not doing. The big road block ultimately is that the 20ppm codex is a World Health Organisation directive so if they are saying it's ok, it's difficult to do anything about. I think until that changes the most we can hope for us a standard to take hold in UK that is for us, not the food manufactures, and more transparency on the 20ppm and the labelling of ingredients that may be gluten containing. GIG are making some inroads into UK and their directive is 10ppm, but they still only have very small influence. One angle I had thought is getting a food retailer onside. Waitrose are doing the labelling on their own products of ingredients from gluten source, so they clearly are thinking ahead and have people influencing that.
Can sympathise regards not tolerating ‘gluten free’ products. Not because of dx coeliac but because of food allergy personally.
Your point 3. “ Failure by CUK to put research funding towards finding out how many people with coeliac/gluten intolerance can not tolerate codex.”
I read some research about the number of people with refractory coeliac disease - meaning not responding to a gluten free diet - and people categorised as super sensitive not able to tolerate trace amounts upto the 20ppm according to the codex alimentarius.
I will see if I can find the reference again. If I recall correctly it stands at about 30% of dx coeliacs not able to tolerate ‘gluten free’. And they require a naturally gluten free diet avoiding all packaged grain foods.
Personally and my opinion based on reading of the research, why charities like coeliac UK can be invaluable to those newly diagnosed I think all coeliacs newly diagnosed should be advised to avoid packaged foods even gluten free until the gut is healed maybe 6-12 months.
You only have to read some packaged labels and think you need a chemistry degree to interpret. Such concoctions you wonder how a damaged gut is truly going to heal with the emulsifiers, refined starches, sugar, processed seed oils etc. that’s in gluten free packaged foods. They’re processed foods at the end of the day not nutrition for healing.
Thank you Researchfan - you're name lives up to your knowledge! Now that is some worrying numbers that you are quoting. It seems utterly bonkers that so many still stay ill/partially ill and the number of so-called gluten free foods just keeps on growing. Every man and his dog is pumping out products and claiming 'gluten free'. Just a very scary situation that seems to have evolved. I'm going to have a read of that paper. That is very helpful of you.
Here’s a recent review article, all about ‘gluten free’ products and potential contamination with gluten, even naturally gluten free foods. Not to worry anyone but to be aware.
I've read it now. This is scary. It just seems avoidance is futile, and realistically all grains, including so-called gluten free flours, are to be avoided, in addtion to anything with a 'gluten free' label (which many of us have concluded). It just does not marry up to the ever expanding gluten free range and all the products carrying CUK cross grains. Complete disconnect between the market drive and the health requirement. I have long wondered about the efficacy and corruption of the actual testing process also. I've had clear coeliac reaction to a product which a local authority tested and it showed no measurable gluten. It was nothing else but a coeliac reaction, as I can eat a different brand of the exact same product with no issue (tahini). It's both overwhelming to consider but also anger-inducing as this research is clearly out there but it's hidden in plain sight behind a wall of marketing and obfuscation of the nature of 'gluten free' products. The cold hard fact - the diet that a person with coeliac requires is unlikely to make any money for food manufacturers as they can not ever meet the true standards requirement. Illness (as far as I can see) only comes into focus when there is money to be made out of it. Currently pharmaceutical companies can't make a dime out of coeliac as no cures/treatments to cash in on. The only folk who can make money out of us are the food companies but they can not/are unwilling to match our requirements, so the truth is firmly kept in check by the charity that is supposedly advocating for coeliac. I would love to see a random check of a selection of our UK 'gluten free' products (they are missing from the research paper studies quoted). I've seen one in the past that also exluded UK that showed 8% of GF breakfast cereals are way over the 20ppm. I have also had test results provide to me by a popular brand of rice cake product (that I shall not name) but they seemed to produce the test results so freely that I questionned the authenticity of them. Also conducted abroad in a different country. This I am finding also - a lot of UK branded gluten free products from UK companies are not actually made in UK which extends the net of risk. I have noted on posts on here by another poster the fact that the CEO of CUK started out in marketing for coca cola. I also note the Chair of their Board of Trustees is a legal person with a background in FMCG's - so two top leads are food marketing buffs. Not a good look and does not bode well for any change any time soon. We need ethical health experts advocating for improved standards for health, not BS processed food product marketeers. As the saying goes, if you want to get to the heart of the problem, follow the money.
I would very much like to sign the letter. I have tried contacting Coeliac UK about this very problem in the past, but received no response at all. I am unable to tolerate any amount of gluten (or wheat, rye, barley whether codex or not) and suspect many people are harming themselves without realising it because of this 20ppm nonsense. No wonder some people have refractory coeliac disease.Thank you so much for doing this.
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