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Gluten Free Guerrillas
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How many of us have a reaction to foods containing less than 20ppm of gluten? Include everything, codex wheat, barley malt, maltodextrin.

I know this is not scientific but I am beginning to think that the so called minority of us who do is much larger than we are told. Perhaps Fiona could do a poll.

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Good idea Mia, you can always contact Fiona directly by private message.

They have to label wheat derivatives in the US and on other continents and I'm a great believer in 'us' the consumer knowing exactly what we are eating. So your suggestion gets a thumbs up from me.

Jerry

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I have tried to get this done via EU food labelling but the grain cartels are more powerful than the people running the show and in the EU they don't want that kind of labelling as standard. Waitrose is the only one who I have seen label glucose as "Wheat glucose syrup".

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i agree with jerry, a poll would be good to find out just how sensitive sufferers are. perhaps we should be putting pressure on coeliac uk to revise their standards?!

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I think there is a problem somewhere along the line, In the last 3 weeks I have been glutened 3 times, for me it is a sever reaction, being sick, also on the toilet at the same time, feeling absolutely awful, and I am so careful with what I put in my mouth.

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I think it would be a good idea to have a poll too Mia. As I have previously said I react usually very quickly to stuff and it is not nice. If I hadn't found this website and got advice from people on here and understood the science behind some of the food labelling I would be going crackers wondering what on earth was the matter with me as I continued to eat stuff considered GF as I really don't think my GP would have told me. I wonder if that happens to people who don't have access to this crucial information.

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A poll would be a good idea so long as everyone votes, this would give some indication as to how many react and how many do not.

I have a diagnosis (2007) of "Brittle Complicated Coeliac Disease" this I assume is because of reactions to the diet. So yes I react the next morning.

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I get zapped with minute traces, including glucose, dextrose, vanilla and many other things that are supposed to be so processed they supposedly don't contain gluten

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Vanilla?

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Hi LHine, some coeliac cannot tolerate corn and corn based alcohol is used in the commercial extraction of vanilla so even tho' it is gf it is not corn free.

As for artificial sugars it is much cheaper and easier to turn corn into dextrose, so this is one of the problems with processed foods and food intolerances.

Jerry

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Great idea but it needs to be structured so it is not skewed by self-selection bias i.e. only those that see the question as relevant to their own experience will reply.

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That's why I thought we could ask Fiona to do a proper poll rather than just ask people.

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I agree with Dartmoor/G.

Questionnaires/polling are very difficult to do properly and a recognised skill in their own right. Maybe canvassing our community to see if there's anyone out there who could help? They could then liaise with Fiona and off we go.

If we manage to get one up and running I would lobby for an outcome that quantifies the very sensitive coeliac (less then 20ppm), the 'normal' and the symptomatic.

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I was on one of the Facebook groups and I was a little concerned to find a group of coeliacs who have all been suffering from mouth ulcers and yet had not considered that this may be the result of glutening. All the advice was about taking cortisteroids or using mouth ulcer medications and none of it was about checking what they may still be eating that contains gluten. The problem is the symptoms may not just be gut symptoms.

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Interesting - I read something about this and it was news to me. It's tricky because I don't want to blame on everything on gluten - how do I know something is not related to something else? If there was something upfront along the lines "these are other (possibly related) issues" that would help. I've read a few articles (I've only been diagnosed a year) and I've not seen that mentioned in any of the articles I've seen yet it does seem to be significant.

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I am a recently (self) diagnosed gluten intolerant - and have gone gf. Now 3 months in I am trying to find what I can and can't eat and often getting glutened (I eat out a lot) . I have elevated rheumatoid factor and my knees go to pieces if I eat gluten. I also get bad vertigo, and tinnitus and tingling / trembling if I eat something I shouldn't.

I was about two weeks into the gf diet - knees and neuropathy had got massively better - when I started chewing some Spanish Orbit chewing gum. Within a few minutes my mouth had ulcers. Nothing on the label. But when I got home I looked it up: cannot guarantee that this is free of gluten because of manufacturing methods. Needless to say it has gone in the bin.

So, that for me was evidence of how the stuff can get everywhere. I think UK Orbit and Wrigleys gums are fine..

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Hi Claudio, I think that you have an intelligent and open minded view on this and agree that sometimes we get stomach bugs/ upsets and must not blame them on gluten. With me if I eat malted breakfast cereals that are within codex I get a head ache and upset stomach so it is self evident what the issue is, gluten at an allowed level.

The majority of coeliac societies advise coeliac to avoid wheat, barley and rye and only eat processed foods that are within codex.

You haven't tried oats yet and oats are an odd one as coeliac are told not to eat them straight away and then to introduce them gradually and not to eat more than 50g and coeliac children not more than 15g which's slightly over 1/2 ounce (14.2g)

I remember reading when they were first suggesting that pure or uncontaminated oats might be suitable for some coeliac because they were naturally low in oat gluten (avenin)

There are also coeliac who can eat chip shop chips and because crunchy nut cornflakes were classed as gluten free still eat them with no apparent issues and ordinary oats so this shows that some coeliac are much more sensitive to it than others and all I know is what makes me ill and that allowed levels of gluten are coming down and not going up.

So good for you for being open minded and just keep these things in mind for the future if you have issues with some foods.

Jerry

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This can work the other way around, that the coeliac cannot tolerate the gluten free diet because of the gluten content but because it is declared safe is never considered to be a cause of continued symptoms so continues consuming the permitted low levels in foods etc. My own opinion is to exclude all ingredients from a gluten source and then introduce them, keeping a food diary until a level of tolerance is found, not the other way around.

It was accepted at a Tribunal (19/2/2014) that 90% of the gluten free foods are not safe for me.

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I didn't know the thing about 50 g of oats (but maybe I'll get told when I'm allowed back on them) - that's a (just about) reasonable bowl of porridge and I'm really missing porridge. Thanks for the tip.

I tend to avoid processed food so it's relatively easy to check for gluten-free compliance. I do have breakfast cereal with 'barely malt extract' but at levels that don't worry Coeliac UK. Worryingly, the dietician I saw seem to think any barley malt extract is OK (I have yet to be convinced of that).

I'm somewhere between sceptical and open-minded. I try to listen to everything and when something seems significant - like mouth ulcers - I'll make sure I take it into account.

I do get a bit worried when people seem to take anything as fact without any challenge. I do like to see a bit of evidence - and the good thing about communities like this is that you can get enough anecdote to help you ask the right questions.

I also count my blessings that I seem to be able to cope with codex.

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HI claudia, here's a link about introducing pure oats:

csaceliacs.info/guide_to_oa...

I would wait until you've had a 2nd biopsy and know that one your villi has recovered and also see what your iron, vitamin and mineral levels are like then if you are deficient in any of these try the malt free breakfast cereals. So it is like everything it is one step at a time and see what works for you.

I also find it worrying that a dietician is telling you that all barley malt is OK when in many countries coeliac are advised to avoid all barley malt and malt vinegar.

Jerry

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I now won't buy gluten free stuff because of bone and joint pain. I do not get an immediate reaction if it's labelled GF but within 2 weeks I am in pain just moving. I will try something wait for a reaction, leave it for a month then try it again. If I'm in pain a second time it's not worth buying anymore.

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This is where language gets tricky. You don't mean 'gluten free stuff' as such, but something like 'products developed specifically for the gluten-free market' (and that phrase will never catch on!).

It then gets even more complicated as - it appears to me - some people will react to some ingredients but not to others. Some of those reactions may be related to coeliac disease but I guess that some might relate to other conditions.

Trying to get a labelling system to deal with that level of complexity sounds impossible. Wend 100 seems to have to rely on trial and error which isn't ideal but possibly the only choice left. I'm fortunate(!) in that it's only gluten that seems to be a problem for me. Mind you, I've yet to try and get back on oats, so I hope I haven't spoken too soon.

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Good idea. I am also reacting to GF food such as Warburtons lovely cakes and breads. I don't eat GF food anymore, it makes me too ill. Corn is another problem and corn is in nearly everything, and oats of course! Baking with ground almonds is my latest thing. I'm trying to eat an adapted version of the Paleo diet. I'm tired of being under par or ill all the time.

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I'm doing something similar with my diet. This is a useful site, if you haven't come across it before.

authoritynutrition.com/low-...

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Too many chemicals in GF food for my liking.

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The original study that deemed 20ppm to be suitable for coeliacs was taken from a very small cohort of participants. Some even dropped out of the study because they were ill.

Perhaps that's why many of us do so badly on such a small amount.

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This article has a link to the study that Jacks refers to, only 49 participants!

glutenfreetraveller.com/top...

There was a systematic review of tolerable amounts of gluten for coeliacs in 2001. They found that a daily intake of less than 10mg was ok, which I think means 10 ppm.

onlinelibrary.wiley.com/doi...

From reading other reports the suggestion is that approximately 0.2% of coeliacs react to 20ppm of gluten, although the reports do talk about the limitations of the tests and the fact that certain forms of gluten appear to be more toxic than others. This is one interesting report.

ncbi.nlm.nih.gov/pmc/articl...

I prefer to avoid all supermarket gf food.

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After reading all this I realise this must be why I have been struggling and feeling just under par this last year, A well run poll would be a good idea, I think I am going to revert to a really gluten free diet , cutting out all the 'manufactured stuff, tempting though it is

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For me the problem is that coeliac disease is an autoimmune disease triggered by gluten and does not only affect the stomach lining but lots of other parts of the body. There appears to have been no longitudinal studies on the effect of gluten at 20ppm with a large group of coeliacs and therefore we are all doing trial and error without any scientific evidence that we are not hurting ourselves. It looks to me that the 20ppm is more for the benefit of the food manufacturers than the people with coeliac disease

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Hi Mia, if you read the link on this post it likens coeliac experts to the blind men and the elephant which says how 6 blind men go and check out an elephant and one feels the trunk another its leg another it's tail and so on and then they all argue over what an elephant is like...

healthunlocked.com/glutenfr...

To me when those who say that 20ppm is a trace amount, on a molecular level just 1ppm of gluten in 1Kg is 1mg and will have millions of toxic molecules.

I look forward to us having a poll on here.

Jerry

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I agree that is why it concerns me and yet when you raise it you are immediately told that Coeliac UK says it is fine so it must be fine, actually to be fair what they say is that it can be tolerated by the majority of coeliacs but does tolerating something mean that it is not harming us in the long term.

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As a twice diagnosed with a further confirmation at the highest level, I react to the lowest levels. As there appears to be a language and very misleading problem with the terminology of "Gluten Free" and its labelling why do non coeliacs react when you tell them gluten free means it contains gluten? even at a low level.

Prior to the 1st January 2012 introduction of the current labelling system it was considered that 200ppm (which had an exceptional following from coeliac groups) was stated as safe for coeliacs so why the changes and with out many realising it the derivitives previously used have been replaced by 'Hydroxypropylmethylcellulose' why if 20ppm is safe? It is in the interests of the supplier/manufacturer not the patient as a whole and caters for it as such. It is not yet understood why Coeliac Disease is triggered and what the long term effects of eating these low levels will be, the choice is yours.

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ME! Big time. I was diagnosed with coeliac over 2 years ago. Badly affected by malt vinegar, glucose syrup if made with wheat (ie most), caramel food colouring, gf soy sauce (caramel colour), many balsamic vinegars. And various other stuff. But after I carried on being ill despite utterly rigorous gf diet, I found I had an extreme reaction to eggs and to some chicken. I have now worked out it's because they are fed on a high gluten diet. (Corn fed means wheat and barley, believe it or not). A top allergy specialist agrees it could be gluten in eggs and dairy. I have recently bought BioCare Glutenzyme plus and they seem to 'mop up' traces of gluten in so far as my digestive system fixed itself overnight and I stopped rushing to the loo. I just went on holiday and stayed well despite eating diary which usually gives me the runs. Just got glutened on the final night, contamination presumably. I take one glutenzyme tablet after a meal containing, say, chicken or when eating out but I still daren't eat egg as I can be ill for several days. Watch this space. Anyone else got experience of these tablets? They feel like a lifeline at the moment. BTW, so-called coeliac specialist nurse told me it's nonsense that I can be affected by less than 20ppm. So much ignorance among 'professionals' in the gastro field and I'm disgusted by the incorrect advice I've had since being diagnosed.

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Hi there, celiac.com have a section for super sensitive coeliac so here's a link to their forum for the super sensitive:

celiac.com/gluten-free/foru...

You might find it useful and one things for sure and that's you won't feel alone with your symptoms.

And here's some reviews of Glutenzyme:

celiactravel.com/articles/d...

I hope this helps, I find it really interesting finding out about coeliac around the world and I'd really like to know more about the South African coeliac societies as I've read good reports about gf pizza when eating out in Johannesburg.

Jerry

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Hello Hil101, I can't eat eggs either and worked out it could be the corn feed. However, when I went on holiday to Albania last year I tried eggs there and I was fine. I was so fed up with having such a restricted diet I started to occasionally use eggs for cooking and have found that if I have a small piece of whatever I have made I am okay. Interestingly just lately I am finding chicken tastes really strange and I don't like the taste. We get good stuff from our local butcher. I can't eat bacon which contains potassium nitrate, (nor supermarket hard cheeses). But again when I ate bacon in Albania and Scotland there was no problem. I definitely cannot tolerate glucose syrup - how do you know which products might not contain wheat? What an awful comment from the specialist nurse. What did you say to them?

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I found Waitrose 'essentials' chicken ok then was amazed to see on the labelling that it's maize-fed whereas good organic corn-fed makes me ill. Seems to me to be all in the feed. Presumably the same principle as regards cheese, I expect, and meat etc abroad. The specialist nurse was backed up by the dietician in ridiculing less than 20ppm being cause of glutening. Nobody listens to coeliacs; I'm sick of being treated like a delinquent teenager. I put in a complaint and 'sacked' the hospital.

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Well well that's interesting to know. For me whether I can eat cheese depends on whether potassium nitrate is used and this is the case with bacon. I can eat soft cheese.

How awful for you to have the professionals undermining you. I am glad you made a complaint. I hope you gave the management the facts surrounding your complaint. It must have been very upsetting to be in that position. Interesting that there seems to be three line whip to support the 20ppm case. I quite agree we should be listened to. We are all different!

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I'll keep an eye on potassium nitrate as an ingredient. The story was worse than that: the nurse ordered an endoscopy based on an antibody reading of 6 from a blood test I HAD NOT HAD! I'm fanatical in not eating gluten yet was telling them I react to 'hidden' amounts as in glucose syrup. Antibodies had started off at 116 and I have DH as well which presumably shows sensitivity. She'd looked at a year-old blood test result, I'd not had time for blood test the day I saw her. The hospital apologised. I cancelled the endoscopy.

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Oh dear! That is not good and does not inspire confidence whatsoever and undermines their professional opinion. Glucose syrup seems to really do me in!

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I think that a big problem is that we have non coeliac experts telling 'us' what we can and cannot eat. And at the end of the day gluten is toxic to coeliac and 1ppm is 1mg per kilo so there will be millions of toxic molecules in 1mg of gluten.

Some coeliac are far mare sensitive than others and in some countries they give advice to those who are very sensitive, celiac.com have a branch for the super sensitive so they know this. So you have done the right thing and it's a waste of time trying to convince someone who is convinced that they know best...

Jerry

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I have found I react to codex wheat starch and some of the other things mentioned. Maybe it's not such a minority after all.

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I am confused. My son has been gluten free for over a year but the last 4 months has been nauseous and very tired ( v similar symptoms before diagnosis). His paediatrician thinks he has post viral fatigue syndrome but I am now wondering if his coeliac is far more sensitive than we had realised. The Glutafin fresh white loaf he likes and eats daily contains wheat starch but is gluten free. I am now wondering if reading your helpful posts if we should stop getting this and switch to another bread? Any advice/ thought/ comments would be gratefully received. I want my well boy back!

KiKi x

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Kikideelili - you're wondering which I think is a good start rather than having decided what the problem is. I think your thought about trying another brand - which is wheat-free - is an excellent idea. And stick with it for a while.

Coeliac disease does seem to be very complicated (I've only been diagnosed a year). Having looked on a few forums, I've found some very odd ideas mixed in with some very sensible ones. It's only by asking questions that we can test out some of these things. It might be the wheat in the bread that is causing the problem; it might be something else in the bread; it might be nothing to do with the bread. A bit of experimentation may help to rule something or other out of the equation.

I think it's good that you haven't already decided what the problem is. The experiment seem worth doing - and please share with us what happens. I hope it works out.

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Hi Kiki I have had this happen to me at various times over the years. What I do is I revert to a completely natural zero gluten diet of fruit, veg, fish, meat, rice, pulses, eggs and dairy as I can tolerate it. Once I have no symptoms at all I start to add in the gf processed products like bread, pasta, free from etc one at a time and if I have no reaction then I stick with it, if I do I drop it out again. I hope this helps

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Yes, I agree with Mia on this point and I would remove:

1) All malted breakfast cereals (regardless of whether they are within codex)

2) Pure oats (gluten free oats)

3) Codex wheat

4) Processed foods especially with artificial sugars.

We are one of the few countries in the world who say that malt is safe for coeliac as long as it is within codex and Kellogs have introduced gluten free Rice Krispies in the US but do not see a market for it in the UK.

We had a campaign on GFG to Kellogs asking them to import them for us in the UK so if anyone is interested then please see:

healthunlocked.com/glutenfr...

We now have 2000 more members than 2 years ago so I think that we should have another organised pop at Kellogs soon.

Jerry

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Ps here's a link showing gf rice krispies:

kelloggs.com/en_US/kelloggs...

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hi i,m the same i,ve been coeliac for around 16 months and i,m still getting alot of the symptoms as before i cut out all gluten. i,ve been getting terrible headaches to the only problem that as gone is needing to rush to the loo but i,m abit confused about stuff like malt extract, so maybe it could be down to that i check that everything says contains no gluten ingredients but wonder if you can trust all packaging, cause the uk don,t have to label every little thing i use to still eat marshmallows until got a dutch brand and that stated wheat dirivitive on one of the ingredients so i cut them out its all so confusing i don,t eat out anymore.Hope your son gets feeling better soon

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Hi Kiki, firstly this must be a worry for all of you so i am sorry and at least you are on the case. I agree that you need to be open minded and it is well worth checking out bread made with naturally gluten free flours.

My other thought is are you buying him free from biscuits made with pure oats? I ask this because coeliac children are advised not to eat more than 15g of pure oats per day. And children do seem to be more sensitive than adults and often have a reaction to oats and pure oats.

The other suggestion that I have is that you keep a food diary and start with basics and gradually introduce more foods and by keeping a food diary can monitor his reaction. Just make sure that he still has a balanced diet. When I was a child I suffered with nausea and when i started primary school all I wanted to eat was mashed potatoes (which's logical when you think that maybe my body knew it was safe) But I was referred to a psychiatrist aged 6 who said that i did not need to see a psychiatrist!

Now here's a site that may interest you it is run by the parent of a coeliac child the same age as your son:

glutenfree4kids.com/

Good luck and I hope that you get your sons diet sorted soon,

Jerry

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Hi Jerry and Claudio

Thank you very much for taking the time to reply to me at a time when I really needed it! I have felt quite on my own with this as my sons paediatrician rushes our consultations and seems to have a low opinion of me. If it hadn't been for me we never would have discovered my son had coeliac disease. She was convinced he had post viral dysmotility. Which is what she is saying he has now. How can she know without checking his coeliac bloods? Anyway I will go see a gp and get his bread changed to a truly absolute gluten free one. What do you guys eat? I usually have Asda's own brand or Genius. My son was allergic to dairy ( from birth) and eggs ( from 2 years) but we tested him separately in the summer holidays and he was ok with both, no reactions. Then in October started feeling tired, then the nausea started. So we stopped all eggs and dairy but he got worse. He gets dark circles under his eyes still (which I've read is usually a sign of allergy) but the paediatrician thinks it's a post viral thing. To answer your question Jerry no he doesn't often each oat biscuits. He occasionally has homemade flapjack using Juvela gluten free oats. But he would only eat one piece per day. He usually has Glutafin gluten free digestives which he gets on prescription or I make him homemade ones using sugar, gluten free flour ( rice/potato mix) and vitalite dairy free marge. He is back at the hospital in July and then we will be moving him to a different hospital. I can't put up with a paediatrician who doesn't listen for the next 9 years!

I've spent the day emptying my cupboards of everything that contains dextrose, maltodextrose, glucose and not truly g/f and will start going back to basics like tonight's tea Pork, roast potatoes and broccoli.

By the way do you know about Deliciously Ella? She has a recipe app which I just bought (£2.99) and has a Cook book coming out soon. All her recipes are Gluten Free and contrail 100% natural ingredients. Thanks again guys. I'm so glad I found this forum!

Bless you ! KiKi x x

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This is from the food standards agency on gluten in weaning foods for children. I wonder if this is guidance that should apply to all of us as it seems to suggest that the reason for the 20ppm was to stop symptoms not in fact to cease any development of the underlying disease. Plus it also seems to be about enabling coeliacs to eat more and more processed food at a time when everyone else is being told to cut these out of their diet in order to have a healthy heart, lower cancer levels etc. It seems strange to me that being coeliac and therefore already having an autoimmune disease that we don't have more posts on how we can live a healthier lifestyle with a really healthy diet rather than one filled with cakes, pies, pizzas etc which all the non coeliacs are being told to cut out of their daily diets and only have as a very occasional treat.

Food Standards Agency Guidance: The level of 20mg/kg was set based on scientific evidence to prevent symptoms in people who were already diagnosed with coeliac disease, not as a threshold for determining the presence/absence of gluten in weaning foods. We do not have the scientific evidence to establish whether the potential increase in exposure to gluten (from 3-4mg/kg to potentially 20mg/kg) in baby foods for infants less that 6 months of age will increase the chance of infants developing coeliac disease, and/or an allergy to cereals containing gluten, later on in life. In light of these concerns, we recommend the following best practice. The full guidance for everyone can be found here multimedia.food.gov.uk/mult...

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Hiya Mia

Thank you so much. Very helpful advice. Bless you x

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