TG6 TEST RESULTS: Hi I had a TG6 test... - Gluten Free Guerr...

Gluten Free Guerrillas

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lynnm profile image

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 .

14 Replies

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.

Benjamin123 profile image
Benjamin123 in reply to Jerry

"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.

Jerry profile image
Jerry in reply to Benjamin123

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.

Benjamin123 profile image
Benjamin123 in reply to Jerry

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.

lynnm profile image
lynnm in reply to CATRYNA49

Glad your health as improved. Many Thanks.

Will look into that.

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.

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!

lynnm profile image
lynnm in reply to m0ezp

I DONT DRINK ALCOHOL so thats not a problem . but thanks for you message it will help others .

Benjamin123 profile image
Benjamin123 in reply to m0ezp

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 profile image
m0ezp in reply to Benjamin123

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.

Benjamin123 profile image
Benjamin123 in reply to m0ezp

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 profile image
m0ezp in reply to Benjamin123

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.

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