I've had a sample pack from Juvela and I do prefer the taste of their bread to supermarket gluten free bread. I know that gluten free wheat starch is considered safe but I also get the impression from these forums that many people won't eat it because of bad reactions.
So, what are everyone's thoughts on gf wheat starch and how will I know if I have a reaction to it?
Thanks
Hello, Codex wheat starch is a bit contentious. It is 'washed' to remove gluten, but 20ppm is allowed under gluten free labelling. However, this is cumulative, so if you eat a lot of bread, you may be ingesting more than you can cope with. I am not coeliac, but according to my GP, I am allergic to wheat. I react to any wheat or wheat derivatives, including Codex wheat starch. The only way to find out for yourself if you can tolerate it is to try it.
I don't know how you react when you ingest wheat, but if you don't tolerate Codex, wheat starch, you will probably get a similar reaction to what happened before. For me, I get a rash around my mouth and back of the neck, but also, within about half an hour, I get the tell tale gut discomfort, which I know will be followed within about an hour with explosive D. We are all different, you may be fine with Codex wheat starch. It is trial and error. Best of luck.
Would avoid like the plague. The notion that you can 'wash' gluten out of wheat is too random for words.
I agree Juvela products taste better than most but I didn’t feel okay until I cut out all the faux GF stuff. That includes all GF beer unless it’s made from non-GF sources (Greens make some as does St Peters). I don’t believe the little bit in malt vinegar is okay or that Whisky is okay (other than Bushmills as that is 3x distilled whereas most scotch is once) or most gin and vodka unless etc etc.
I think the real issue is gluten testing. There are 20+ copies of the DNA sequence that we react to in a cell of gluten protein. The testing can’t spot fragments that small and so it says everything’s fine and under 20ppm.
There’s a lot of research out there about this but Coeliac UK don’t want to get into this because it’s messy.
I’d avoid codex wheat like the plague if I were you! 🍀
Hi.
Good reply. Agree with everything you say.
In terms of 'faux' gf products. Do you include the standard certified gluten free in this as well, so the commercial gluten free breads/baked goods/general products.
I agree on the madness of de-glutenised barley for beer, malt vinegar, etc, but wondering if you extend this to all gluten free products.
Asking for a friend.....
Hi Mise,
It’s a good point. Certified because it’s passed what test I guess is the question in my mind.
I think we have to accept what we’re told generally but I draw the line with products that have wheat, barley or rye in their process anywhere. I read something a few years ago that suggested spirits made from wheat or barley need at least 3 distillations to be sure they’re clean of gluten.
Thanks for that m0ezp. That's sensible advice.
Just a shame we have to play the gambling game of blindly trusting the rest in the hope that we can trust the certification.
Ah, just wish CUK would stop messing around and just work for people with coeliac, not the manufacturers.
Yes, I’m with you on that. As time goes on I wonder what CUK is for.
When coeliacs have a physical reaction to products that test lower than 20ppm gluten I’d be wanting to ask questions like: is this triggering the autoimmune response? Can we do biopsy tests to see?
CUK don’t do that; they say the tests say no problem so no problem!
I've had the experience of them going one step further and gaslighting the situation with suggesting the issue/fault lies elsewhere with some other random health problem not gluten reaction.
The first time I smelled a rat was phoning them after having reaction to gf beer and wondering what the heck was going on - tried the beer twice and same issue. Something in the tone of the voice of the person on the other end of the phone and the terseness in their assertion it was all ok and gf safe got me looking into it further.
Once someone says 20ppm to me now I just switch off.
I've said it on here before, but will say it again, I would dearly love for CUK to be challenged in court over the foods they recommend and their clear bias to supporting food manufacturers rather than the people they are meant to represent.
Absolutely agree about the 20ppm mantra - again its, as measured by what test and what happens to the relevant DNA sequence fragments the test can't spot?
After getting nowhere with CUK's usual routes I wrote to their CEO in 2017 about GF beer and the ELISA testing method. I gave references to their US equivalent, GIG, and the Aussie/NZ groups who have all doing some research that suggests the ELISA testing is at least problematic and missing gluten DNA sequences that are still there. Eventually Sarah Sleet wrote back with a half sat on the fence / half ideologue message. You then hear medical sources saying coeliacs don't stick to their diets properly....my view is most do as they are told and yet they continue to have reactions!
The manufacturers and CUK do have too cosy a relationship but I blame CUK for that. When I was first diagnosed I could tolerate various GF breads on prescription but after CUK + medics pushed for more fibre to be added there are very few now that I can tolerate because the easiest fibre addition was insoluble fibre which clears you out too fast. Most of us have other things in the day we need to do than spend it in the little room. Soluble fibre has a soothing effect and is much better tolerated but few breads make use of it.
Then there's oats. We know a significant proportion of coeliacs can't eat or are told not to eat oats by NHS dieticians yet CUK's efforts with manufacturers have created these Free From sections that are stuffed with oat based products. I used to be able to get GF biscuits but as I can't have oats, there's often none I can have.
Anyway, enough on the soapbox! 
Sadly, I fear that CUK has a conflict of interest. Sometime ago, when working for a large retailer, I was tasked with getting range of products accredited as GF. The supplier involved already ran a completely GF manufacturing site. The process involved filling in lots of forms, at least one factory audit, two if they found anything questionable, and a regular review. Factory audits can take anything up to three days. All of these are charged to the supplier and are very expensive, with a charge for each subsequent review in order to carry the crossed grain symbol on packaging. It appears to me that this is the major income stream for CUK, especially with the current proliferation of GF products. They are writing their own rules. Membership subscriptions cannot hope to compete in terms of income, therefore become of less importance. Yes, I am very cynical.
You're spot on there BabsyWabsy.
That's really interesting to read how the process with CUK works when they are interacting with businesses. You'd think after all that interaction we would at least have safe products!......
Also explains why GF products so expensive. We're all carrying the cost of CUK over-inflated work. Goes full circle and back on the coeliac sufferer who has to bear the cost and still not know if the products are safe or not.
I've changed my attitude towards charities massively in the past two years. Had some interactions with a disability charity that lied to me about investigating an employer for disability discrimination. They are in the pockets of those with the money, provide a lot of complicity and then provide a front for shonky businesses/organisations to hide behind when called out.
You are right, it does add cost to GF products. However, I must defend the product range I was working with, it was actually sausages. They are still in production today and I still buy them and enjoy them. There are no anomalies with them, only crumb made with rice is used. Interestingly, they were the first retailer sausages to go GF. In the years since, all the retailers have followed suite.
In a sense CUK are a victim of their own success in creating a process fo GF accreditation that suddenly becomes a must have for all sorts of food products, where it used to be very niche and therefore manageable. GF is now big business.
I am sorry you had a bad experience with charities. Some are overwhelmed with workload. I am a trustee of a medium size charity in Leeds and a director of its social enterprise. I also volunteer for another charity. In my experience, they are heavily regulated these days.
The soap box is needed! All excellent points.
Thanks for all your replies. It's been enlightening! It's such a shame that the organisation that's supposed to be advocating for us doesn't seem to always have coeliacs best interests as the priority.
I also don't understand why these products aren't available for people to buy themselves! So I've ordered a glutafin sample box to try before I go down the prescription route. I'm really loathe to use anything with codex in as it seems wrong to be ingesting wheat! I also get very frustrated about oats in so much gf food. I'm avoiding oats until I see a dietician but I really hope I'll be able to tolerate them eventually!
Definitive List of Additives that come from Wheat/Gluten Source? 
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Feeling better after ditching dairy products and glutafin fresh bread.
