Hi I had a TG6 test in December the results were 6.6 but they want it under 4. but I stick to my Gluten Free strictly for the last 40 plus years. so now checking all my things to check for cross contamination. anybody had the same problem . I am seeing a dietician at the end of August .
TG6 TEST RESULTS: Hi I had a TG6 test... - Gluten Free Guerr...
TG6 TEST RESULTS
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lynnm
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Hi Lynnm. I suppose good starting point would be where do you suspect the cross-contamination is coming from (if that is what your suspect as reason for unintentional gluten intake). From my own experience I now avoid all commercial gluten free foods, bar one or two 'safe brands'. I think the limits and legal requirements are too wooly. I also don't eat out, make all my own food, and live in a gluten-free home (no gluten in kitchen). I've found cross-contamination risks are 1) eating out; 2) eating in other people's homes where they are doing the cooking; 3) commercial gluten free foods that are not tested, or properly produced to 0ppm standards (I don't seem to tolerate the legal 20ppm limit) and; 4) supplements and foods with sneaky gluten that goes under mystery names like 'starch' and 'maltodextrin'. I have read about a random trial that show about 8% of so-called gluten free food is over the 20ppm, but also approx 20% of people with coeliac don't tolerate the 20ppm or any gluten full stop, so you may be in that category.
Hi lynnm I had exactly the same problem and it was foods that were labelled gluten free but contained malt or traces of gluten.
I now cook most things from scratch and won’t touch allowed levels of gluten and it works for me my villi has made a full recovery as have all my blood levels.
What people have to realise is that 1ppm is 1mg per kilo and in 1mg there are literally trillions of gluten molecules…🤢
Wheat derivatives do not have to be labelled as such in the U.K./ EU so the manufacturer doesn’t have to change the label because they’ve changed the source of the grain.
Cross contamination can come from anywhere like supermarket conveyor belts poor handling and thoughtlessness as you have to be a coeliac to understand the fear and the consequences of consuming gluten.
So good luck as this sounds very frustrating fir you so it’s important that you realise you are not alone in your symptoms.
• in reply to
"Wheat derivatives do not have to be labelled as such in the U.K./ EU so the manufacturer doesn’t have to change the label because they’ve changed the source of the grain."
Can someone please get that message across to Coeliac UK as they state time and again that gluten-based derivatives have to be labelled if from a gluten source. They seem to not actually have a clue.
• in reply to
What we have to realise is that if wheat starch is classed as gluten free with > 20ppm then wheat derivatives with only a few parts must seem harmless, especially as its been distilled.
In an ideal world we'd have zero gluten because it's still toxic to us regardless of its perceived effects.
• in reply to
I'm a big fan of Gluten Free Watchdog on Twitter. Her research was the reason Coeliac UK could no longer peddle the BS on barley malt - she took them to task with the research showing she was right. She is the warrior that we all need.
You may have to go entirely grain free. That is what I have had to do, with much better results in my overall health.
Hi lynn’s, have you thought about other grains and foods that can closely mimic gluten? I am not coeliac (not sure about this though, but gluten sensitive) had a cross reactive foods test recommended by a therapist who really understands the effect of gluten on the body, and don’t underestimate the autoimmune effect of gluten either.Even neurologists I have seen do not understand or can even dismiss the full impact of this potential toxic ( to some) grain. Also most hospital labs will not be doing sensitive and reliable enough tests.
Also dairy can be a potential problem for some.
I wish it was as easy as just being GF but unfortunately for me it isn’t and irreparable damage may have been done to my CNS!
I’m hoping not, but only time will tell!!!!
Go with your instincts and do what is right for you.
What is CNS please?
It stands for Central Nervous System, so the brain and spinal cord, arms and legs are the peripheral Nervous system.
Thank you penelope2. Since being diagnosed I now have chronic fatigue, gluten ataxia and other issues which may relate to that but I just live in hope of finally recovering in some way but my doctor doesn't think I will get better, which scares me. What you have said may help in some way as I can ask my neurologist next time I see him (hopefully I will remember to ask)! The more I look back at symptoms I've had I think I've had Coeliac Disease forever 😵. On a positive note though, touch wood, my asthma and eczema have gone 😊
I hope your dietician can help when you see them soon. I've stopped seeing mine as they weren't on top of their game re coeliac.
My tupenneth has already been said in various ways but I only got my innards under control when I weeded out all the so called gluten-free made from wheat and barley. So goodbye Juvella bread etc. The next problem was booze. I once read a scientist's paper (but can't find it now) that suggested spirits need to be distilled 3x before the chance of reacting to bits of fragments of gluten becomes almost zero. Whiskey, vodka and gin are only distilled once typically. There are vodkas and gins distilled more times who usually make a thing of it on the label, otherwise I stick to Chase who make theirs from potatoes. Greens beers have some made from naturally gluten free ingredients although mostly you have to order them online as the supermarkets typically only stock beers made from barley and you can't blame them as Coeliac UK has aided and abetted the problem.
It was only after doing all this weeding that mine came down and I wasn't permanently ill.
Good luck!
I DONT DRINK ALCOHOL so thats not a problem . but thanks for you message it will help others .
• in reply tom0ezp
This is so true, and so the case - all the lovely gluten free foods and drinks that are not free of gluten. It is just absolutely crazy that this is the mess we are all supposed to navigate. If they took all the crap out of the gluten free section in supermarkets that is not free of gluten, the shelves would be pretty much empty. When I went gluten free over 10 years ago there was only one brand of 'gluten free' beer I could find, and it was only in the big supermarkets I could find it. Sometimes it wasn't even in stock. Now all the big supermarkets and all their small local express outlets stock multiple versions of 'gluten free' beer. Not a single one of them is actually free of gluten and the myth behind the fallacy that is 'deglutenised barley' would be laughable if it wasn't such a serious danger to our health.
m0ezp• in reply to
Yes, in many ways we've gone backwards haven't we. Coeliac UK have made some positive noises lately in acknowledging the 'possible' problem but it is very much of their own making and it will be a huge job to change the message for manufacturers and retailers.
• in reply tom0ezp
I see that, but many of us have kept the receipts of them gaslighting us over the years and lying, including implying that maybe it's some additonal health condition not just coeliac and that these fabulous gluten free products are ok. It was the GF beer that put me on to suspecting Coeliac UK were not to be trusted - such cageyness when I phoned them up to enquire why I was ill after consuming something with their GF logo on it. They need to be sued through the courts and shut down. They have been fully aware of the issues, but any indication of awareness now is because they can't hide the dirty secret anymore.
m0ezp• in reply to
I completely agree that it all seems it was about protecting their reputation and not the coeliac sufferers. I'm more inclined to hope that there is change from within. I follow GIG the USA group who seem to do their job properly and Coeliac UK could learn a lot from them.
I seem to be missing something here?!? Please help. What has changed with Coeliac UK? As my my Coeliac disease has left me with chronic fatigue as well as other issues, I seem miss things. I have been reliant on Coeliac UK telling me it can take up to 5 years to get the full benefit of being GF. That means I should be better by May. This keeps me going as my doctor thinks I won't ever get better. I have seen it said elsewhere about the 5 years so I won't give up hope yet but I would like to fully understand what Coeliac UK are doing wrong! What is the barley issue? Is this why I can't have branston pickle now when I am sure it use to be on the okay list?
Hi,
I don't think anything has changed with Coeliac UK and I'm still a member. I do feel they have allowed themselves to be swept away by manufacturers and slow to react to new research.
I was diagnosed almost 9 years ago and thought I'd be fine drinking GF beer and eating Juvela bread etc. I was surprised to find I wasn't and so tried to find out what the issued might be. Research outside of UK/EU seems to suggest that the 20ppm limit either doesn't work for all coeliacs or testing is giving us false information.
Put simply (and I'm not a microbiologist), our guts are watching out for fragments of gluten proteins found in wheat, barley, rye. If that gluten is shredded by enzymes or other processes to create GF beer and Codex wheat starch then the suggestion is that the standard ELISA tests can't see whole gluten proteins anymore BUT perhaps our guts still recognise and react to some of the fragments.
The USA GIG research suggests that our coeliac reactions are very personal; some of us react only to wheat, some only to barley, some to both. Some people will drink GF beer, have malt vinegar and Juvela bread with no problems at all but importantly others (me included) do have problems and don't really know how much damage to our guts might be happening. I won't touch anything originating from wheat or barley.
The GIG research was seeing some coeliacs reacting to GF beer (made from wheat or barley) which Coeliac UK are in denial about. I put more info here:-
brewertons.co.uk/gluten-fre...
I wrote to CUK's CEO four years ago and got a rubbish answer. USA and I think Australia and NZ don't allow our GF beer to be labelled "Gluten Free"; they have to label it as "Gluten Reduced" and as a result the USA has lots of truly GF beer available whereas we only have a few of the "naturally GF" beers made by Greens and that's typically the only brewer marketing naturally GF beer in the UK. Sometimes other brewers have tried but usually give up because its more expensive to brew from sorgham, millet etc when the market is saturated with the other stuff.
I also once read some research which suggested small amounts of gluten was detected after a grain spirit single distillation process and they believed grain spirit needed to be distilled three times to make the chances of getting through so small you could be relaxed about drinking it. So I also avoid spirits made from wheat or barley like whisky, gin, vodka unless its been distilled at least 3 times and not then coloured by storing in barrels that might add gluten later. Hardly any whisky passes that test. You can get 3x (and higher) distilled Vodka and Gin fairly easily but it needs some checking.
I miss Branston pickle too! 
Thank you m0ezp, this is really appreciated. Maybe I'm not getting as better as I should because I am still getting glutened though when I get my blood tests at Sheffield they've said it's okay?! Next time I'm due to go I'm going to have a couple of beers a day for a few days before.I never really had gut symptoms as such and I think looking back I've gone for many many years undiagnosed because of this. Just recently I was told after my second dexa scan my spine is still thin!! I didn't know it was thin!! I have had a debilitating problem with my upper back since i was only 30 (1993). I was told I had a 50 year olds spine on a 30 year olds body. One doctor finally said it was a type of arthritis back in 2006. Now it looks like it's been Coeliac Disease?!? Since going gluten free I no longer have eczma or asthma thankfully (suffered since I was a child, along with stomach issues?! Forever being given milk of magnesium), my teeth are better than they have been for years (dentists use to tell me I didn't look after them properly even though I spent a fortune on different toothpastes and brushes)! Sadly I can't make everything from scratch because of the chronic fatigue but hopefully I can be more careful with my alcohol with what you have told me (alcohol helps my energy levels so I have a couple on an afternoon which gives an energy boost).
Thank you again and I'm going to look at that link now 😊
My son and one of my daughters are undoubtedly coeliac as is my partner but its no fun eating ‘normal’ bread and beer etc for two months and then an endoscopy to look forward to. I don’t know why they don’t check to see whether people have one of the two DNA sequences that are susceptible and then just do the antibody test.
I have similar DEXA bond density results as you and osteoarthritis issues advancing faster than normal. I’m trying to get my GP’s attention to help me look at malabsorption. I’ve had anaemia for about 15 years, not iron or B12 deficiency; extra dry skin; weird tendon/muscle problems. It turns out that Calcium +Vit D only sends calcium to bones if you have enough Vit K. Statins and PPIs like Lansoprazole (acid reducers for Hiatus Hernia) they inhibit oil based vitamins like B group, K etc but so does coeliac disease. Saw a Rheumatologist privately recently and he told me not to take Calcium, only vit D for that reason.
Its all much more complicated than our GPs or Coeliac UK seem to understand and meanwhile our teeth and bodies are crumbling.
Good luck with your journey 🍀
I stopped taking calcium funnily enough and drink milk instead so my hips had improved but I don't think there is much hope for my back after 30 years sadly. I use to enjoy singing but had a very bad acid problem about 11 years ago. It burnt my throat so now I can't sing. With all the other problems I'd had you would think it might have been picked up on but you are right, I really don't think doctors are aware of this disease as much as they should be. I think my doctor is now as he did say to me once he can't understand how they missed it. On a positive note tho, Dr Martin's Christmas special brings it up and also says how bad it is!! 😊 I was really chuffed, I hope a lot of people took it in!! 😊
I agree, I think doctors (and CUK) give a message that sounds like as long as you stick to GF its business as usual. Its far too simplistic and so not like that! My GP was looking in all the wrong places with me for 8 years and it was only when I went in complaining how bad I'd felt for days drinking 3 pints of beer through an afternoon at a real ale festival that suddenly a light switched on.
I didn't see Dr Martin's Christmas Special but it sounds to have given the right message. All too often you hear nonsense like Saturday Kitchen Live a year ago with Sharleen Spiteri; she's coeliac but not wanting to cause a fuss she just tried to avoid gluten on the plate giving a completely wrong impression.
Lets hope 2023 brings us all the right inspirations and understandings to heal ourselves when its unlikely anyone else will on their own 😊
Oh the beer sounds familiar. I'd got to the point if I had more than a couple of pints, the next day I was comatosed!! If we'd have had a fire someone would have had to carry me out 😭😭😂😂. Sadly I have spent so many years being told that things are in my head, or I am not looking after myself and many other comments!! I just thought it was me!! My partner thought I was paranoid as I kept saying it was something I was eating/drinking but because I had never heard of Coeliac Disease, gluten had never crossed my mind. At least when I was finally diagnosed the "you are paranoid" finally stopped and thankfully he is pretty supportive now. Yes I agree, it seems we have to find a way of fixing ourselves. Now I am not needing to sleep all the time I just wish I could recover from this terrible chronic fatigue and pain. I just want to go for a walk in our beautiful countryside!!! I watched Shawshank Redemption last night (did me in but was worth it)! It reminded me, hope!!!!!! Never give up HOPE!!!!! 😊 Take care and I hope your journey brings you back to healthy!! You're a Yorkshire Man!! I'm a Yorkshire Lady!! 😊 born and bred, you'll understand why I miss walking and my independence!
• in reply tom0ezp
Coeliac UK have zero interest in health. They are nothing but lobbyists and enablers for food companies. They do no GP educational work either nor work with any other health-related charities that deal with aspects of coeliac damage.
m0ezp• in reply to
Coeliac UK are laughably poor compared to similar groups internationally. Years go by with them still not looking at relevant research years ago. The previous CEO was certainly bad. I'm wondering if the new one will do a better job.
• in reply tom0ezp
The new/most recent CEO started her career in marketing for Coca Cola, so I doubt her interest is health. The Chair of their Board (who claims to have ceoliac...), is a lawyer who specialises in fast moving commercial goods sector (FMCG), so expert in bending the law to shove bad products on the market. They'e a pair of bookends. The CEO claims to have a child with coeliac. I am at the point where I don't even believe those stories. Any research they do seems to be geared towards benefitting manufacturers of food products, and not user-informed in any way. They don't want the codex research to be examined as the improvement in standards to zero measurable gluten (like Australia) would wipe out most GF products on UK shelves that have the cross-grains symbol. They're a scam that is literally killing people with coeliac.
m0ezp• in reply to
Ah, I was unaware but not surprised. I agree the whole eat and drink codex and 20ppm level is fine issue can’t be justified medically when you don’t need to look far to find research saying its rubbish and can do us harm.
Yes, I was thinking perhaps I was being paranoid with so many vague symptoms that didn't add up (to me). I know GPs can't be experts in everything but once diagnosed we should get a better service from the NHS (current issues apart).
I hit painful mobility issues out of the blue in April. Its been difficult getting any focus from GPs. I've accepted that osteoarthritis is part of the problem and so 14 years after giving my bike to my son due to osteoarthritus in my neck I bought an e-bike in August. I only do about 20-30 mins when I can and walk if I can't but keeping muscles working.
I was convinced it wasn't as simple as advancing osteoarthritis and so had a DEXA done privately. So 8 years on from taking Adcalc the DEXA showed that the calcium wasn't getting in my bones and only recently I found out about vit K being essential when taking Calcium and Vit D. The BMA, US FDA etc information is out there which implies that without enough vit K the calcium will probably end up in our arteries rather than bones adding to our overall medical needs. Yet all we get is the possibility of an annual dietician review - I stopped going to those because it was clear they didn't have enough understanding of CD to advise me.
If you can walk 100 yards a day its still worth it! 🍀
• in reply tom0ezp
The NHS/GP advice on calcium intake is dire. Similar to you I took adcal for quite a few years, and I'm horrified to think of a) the lack of difference it made; b) cummulative impact. Only going to a private dietician set me on the right track. Boron, magnesium, copper, D3, K2 - all needed to absorb the calcium, help bone building and stopping the calcium collecting where it shouldn't. Adcal is also the least absorbable type of calcium (calcium carbonate), and they contain artifical sweeteners linked to cancer and 'starch' of unknown origin. Any NHS prescribed supplement will always be the worst type possible with the least absorption and most likely detrimental side-effects. Similar for prescribed iron. Solgar have brought out a bone-health supplement that has all the necessary in one pill. Not the cheapest and i haven't tried it yet, but looks good. NHS is driven and lead by pharmaceutical companies and lobbyists so anything presribed is to be viewed with the greatest of suspicion. I firmly believe if I had listened to every bit of cack GPs have told me since I started to notice my health going wrong (with coeliac, but wasn't aware at the time) I would be very much dead or disabled at this point.
m0ezp• in reply to
The whole GP approach has everything wrong with it you could imagine. I can't even move to another practice really because they're all part of the same company here and you never see the same person twice. I wish I could have my GP budget and spend it sensibly!
By chance I was talking to a Prof of neurological medicine last month who said always take Black Pepper with Turmeric to have any chance of Turmeric working for arthritis. I take Turmeric at the moment but not with black pepper so that's still something for me to sort out.
Boron wasn't on my hit list either so I'll look into that.
I ordered some vits from Natures Best earlier this week which I intend to replace my Adcal D (no other supplements other than Turmeric):-
Vitamins D3 1000iu & K2 90µg, High Strength Formula
Multi-Max® Advance, Over 50's Multivitamin
vitamin ingredients
• in reply tom0ezp
Those look good. I've had good results from Turmeric a few years back for bad hip joint pain. Curcumin is the active ingredient, so if you find a supplement that is curcumin with black pepper, it's even better. I genuinely think it's amazing. GPs are sheep and I sometimes wonder what the hell is taught in medical schools when they land out into the real world with zero knowledge on the fundamentals. Food is everything, diet is everything, gut health is everything. Shoving pain killers for sore joints at people who's sore joints are cause by gluten is like peeing into the wind. Dangerous people.
m0ezp• in reply to
Yes, it’s outrageous ignorance from medical professionals who have that aura of knowing what they’re talking about so understandably we follow GPs instructions only to find we stack up more new symptoms and the old ones don’t go away. At best we get an annual dietician review but they are no better in their ignorance of coeliac disease either. We’re not much further on from “you need a good bleeding” from the quackery we face are we!
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