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New on the scene, and learning gluten-free does not mean free of gluten. How do you navigate this?

MorganSpice profile image

I'm newly diagnosed and reading a lot of old posts on here to get myself up to speed. There seems to be a lot of posts regarding 'gluten free' foods not being safe or actually free of gluten. I'm (now) aware there is a level of allowed gluten up to 20mgs per kilo of food weight, and that manufacturers don't have to, by law, even test for gluten before putting a gluten free claim on their packaging. With this minefield situation, how do we know what is and isn't safe? Does anyone on here actually eat commercial gluten free foods and, if so, are you actually healthy or are you still sick all the time?

25 Replies

Hi MorganSpice, and welcome to the forum.

I was dx in Nov 20, so not that far ahead of you. I do eat some GF foods, ie., bread, hobnobs, even the occasional use of GF bisto. My TTG at dx was 43 (Range .5 - 3.5), I was tested again in July, and it was down to 1.........so, I think I'm OK with GF foods. After reading posts on here I have avoided codex, and anything that says 'may contain'.

In the beginning I realised that I was never going to bake my own bread, so.....I'd have to try commercial GF bread or live without it. I'm now waiting to see what my TTG level is in probably a year, and if it hasn't come down to zero, I will grudgingly give up the GF stuff.

I feel well, I hope that you do too.

Thank you nellie237. Glad it's going well for your recovery so far, and you have found foods that are safe for you. You state you do use some GF products but that you avoid 'codex'. It is my understanding that 'codex' is the standardised measure of 20mg gluten, so if you are eating commercial gluten free products, e.g. bread, are they not working to that codex level? Sorry if that's too many questions, I'm learning a lot and feel I need to learn fast to survive the many challenges for coeliac.

Codex is listed on GF foods as "Gluten Free Wheat Starch", and means in simple terms that they've washed the gluten out of it eg

Schar pain au chocolate contain codex

ocado.com/products/schar-gl...

whereas Schar frozen white rolls (a bit like part baked bread....so pretty good for GF) do not

ocado.com/products/schar-gl...

Lots of people avoid maltodextrin (GF Bisto, and loads of GF foods) as this can be derived from wheat starch, and I think was probably only from wheat starch not that long ago.

Mannitol is also mentioned as something to avoid, but I think this is a bit like lactose ie likely to cause a problem if your gut hasn't healed, or you have added intolerances.

So, to answer your question. Yes Codex or not, there is only a requirement for any GF food to contain <20ppm, but I live in hope, and check all ingredients.

My understanding and what I've learned of 'codex' is from 'The Codex Alimentarius' - a collection of internationally recognized standards for food and argriculture, one of which is gluten, with the regulation standard set to 20mg per 1kg of food weight, so it's not just referring to a particular ingredient or product, but is just the term that is used. I hadn't realised there was such a thing as gluten-free wheat starch, so thank you for flagging that up. I have not tried Schlar products so I am glad I have managed to avoid them. I was not aware of maltodextrin either, and not sure if I have been eating that, so I will make sure to look out for that also. I'm not sure if I should just hope for the best, or avoid all these things. It's very overwhelming level of learning we seem to need to do to begin with, and not a lot of proper medical guidance on this. I found this forum as I've had NHS dietician appointment and felt a bit confused and skeptical when I left that. Thank you again for this information.

Yes, I'd forgotten I also looked up The Codex Alimentarius too when I first joined the forum, but I got the impression that GF Wheat Starch is colloquially referred to as Codex here, but that is probably me skim reading.

In the first few months I found I couldn't eat things like seeded bread/nuts without an immediate gut reaction. I was also quite lactose intolerant.........still am a bit. I stuck with things that were easy to digest at first. Now I can eat things like chilli & curry that I haven't been able to eat for quite a few years, and I'm really looking forward to trying alcohol at some stage too. I haven't had a glass of wine for must be over 10 yrs.

NHS dieticians.......I don't think I need to say anything. Yes, the medical guidance is out of date.

Did they check your Iron, Folate, B12 & Vit D? I had to ask for these to be tested. I also asked for a DEXA scan.

I think the symptoms you had which led to diagnosis may help with decisions on what you can/can't eat. If it was gut symptoms (like me) I think once you are healed it is relatively easy, whereas if diagnosed without gut symptoms but after investigations for on-going anaemia or ataxia, where the impact must be felt much slower, I guess you've got to avoid everything.

I read a study where coeliac volunteers who'd been GF for a long time were given gluten (quite large amounts). I can't remember what the study was for, but the people conducting the study were very surprised that so many of the volunteers were immediately violently sick.

The British Society of Gastroenterologists guidelines recommend the following annual blood tests

Once the disease is stable and the patients manage their diet without any problems, annual follow-ups should be initiated. The physician should check on intact small intestinal absorption

full blood count,

ferritin,

serum folate,

vitamin B12,

calcium,

alkaline phosphatase

associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),

and serum glucose),

liver disease (aspartate aminotransferase/alanine aminotransferase) and

dietary adherence (anti-TG2 or EMA/DGP), although the sensitivity and specificity of the latter cannot substitute for structured dietary interview.

Between 1.5% - 3.8% of people with autoimmune thyroid disease also have coeliac disease compared to 1% in the general population.

Personally, I'm banking on how I feel combined with blood tests to keep a check on things, but that is just me and everybody is different, and you will work out what is right for you.

Thank you. My symptoms have been fairly standard digestive issues. My blood tests show low for vitamin D, but fine otherwise. I've been taking multivitamins for a few years, so something has clearly been finding its way through the damage. I'm still not there with recovery, but notice a massive difference. Not had a dexa but will ask about that. Wasn't aware of the need for annual tests either, so thank you. I'm not sure how clued up my GP is so I think I will have to be taking the lead on asking.

Hello MorganSpice welcome to the community and what you have to remember is we were all new to this once and know just how daunting it is as we are bombarded with what we cannot eat and the secret is to look at what we can eat and embrace foods from around the world that are naturally gluten free.

So back to your original question my opinion is gluten free should mean exactly that with no ifs buts or nuances as gluten is toxic to all coeliac so how do we know what a safe level is?

Whalen I was first diagnosed i found the commercial gluten free products and especially the codex wheat much too processed so only ate naturally gluten free foods and prepared all my meals from scratch. I went from being very anaemic to fighting fit in a couple of months and my villi made a full recovery. But when I tried to introduce commercially produced codex gf foods I became anaemic and my Dr said suggested IBS, I reverted to a natural gluten free diet and have a badge as a blood donor so my body likes a real gluten free diet as opposed to a Codex gluten free diet!

Malted products even pickles made with malt vinegar and as for malted breakfast cereals these have a very adverse reaction on me so my opinion is that no foods within codex can be tolerated by my body because I went totally gluten free after diagnosis.

Another thing that you want to be aware of is wheat derivatives like maltodextrin and artificial sugars made from grain and usually wheat as these are only a few parts per million and don’t even have to declare that they contain wheat and low levels of gluten as the label can say gluten free and display the cross grain symbol. Artificial sugars are also known triggers for IBS so it is complicated.

I personally dislike the cross grain symbol and see it as a warning rather than thinking it’s safe sadly.

So my advice is to eat as wholesome a diet as possible focussing on nutrition and find what works for you as all I know is that allowed levels of gluten keep coming down so less is better and none is better still.

On the Healthy Eating community we have a gluten free Topic section with many gluten free recipes and advice and coincidentally all three of us who are admin are gluten free and we have different levels of tolerance so there is no easy answer its what works for us.

Here's a link to HE Topics please see:

healthunlocked.com/healthye...

Lastly I hope that this helps and my advice is to take things one meal and one day at a time to see what works for you and start to look at all the healthy and wholesome foods that are naturally gluten free that are out there.

So good luck and well done for joining us and introducing yourself.

Jerry. 😊

MorganSpice profile image
MorganSpice in reply to Jerry

Thank you Jerry. Much appreciated. That is very indepth and considered advice, so thank you for taking the time to put that together. Your account of what is safe/not safe has really got me thinking now. I'm tentatively trying some gluten free products, mainly bread, but I just see a minefield ahead in terms of what people are writing on here. I just don't understand why after so many years of awareness of this illness and the feedback people seem to be giving on the products, that a culture of poor quality products that make coeliacs ill still prevails. It does not sound right at all.

Jerry profile image
Jerry in reply to MorganSpice

Thank you MorganSpice we have a few problems like how codex is interpreted and as some coeliac in the UK can get codex wheat on prescription everything else with similar levels of gluten or less has be classed as gluten free. 🤢

Whereas other countries define gluten free as below codex with none of the forbidden grains.

And as mentioned by BabsyWabsy in Australia they have 3ppm as undetectable gluten with none of the forbidden grains and this works for me.

MorganSpice profile image
MorganSpice in reply to Jerry

Bizarre that we can't have the same standards as Australia. I've been reading up on the fact that so many with coeliac never get diagnosed and the blood test may be as low as 30%, or thereabouts, effective/sensitive. I feel lucky just to get a diagnosis. It seems to me that coeliac is a hidden health scandal in the UK and anyone who has managed a diagnosis or who has found their way on here for support/advice is the very small tip of a massive iceberg of people walking around in very poor health who don't know what is wrong with them. The average UK individual GP has 2087 patients each. With 1 in 100 with coeliac, every GP in UK has 21 coeliac patients. I bet if you asked a GP how many coeliac patients they have, it would be a fraction of the true number, yet they probably have loads of 'IBS' patients who they have been prescribing drugs to for years for their tummy issues. It's taken me 5 years to get coeliac tests/diagnosis, and that for me seems way too long.

Jerry profile image
Jerry in reply to MorganSpice

Well Morgan it took 13 years for me to be diagnosed as Dr’s and gut specialist decided I was too healthy to have anything wrong with me, this was terrible for my morale obviously and I was on,y diagnosed after trying to donate blood and they said I was anaemic and sent me a letter to give to my GP I was borderline pernicious anaemia but I bounced back in 2 months eating naturally gluten free whole foods and I’ve got a badge for being a blood donor since, so I must be getting something right.

Now I will share something with you lots of coeliac are nervous of food made by others including me and what you have to realise is this is a natural reaction as it’s so easy for gluten to slip into food made by others who aren’t coeliac.

Another common feeling is why me? And it’s not fair so once you realise that being a coeliac we all have shared negative emotions knowing this is important as it’s empowering.

You’re in great company on here with us that’s that main thing. 😊

MorganSpice profile image
MorganSpice in reply to Jerry

Thank you Jerry. Those are kind and sensible words, and I am shocked it took so long for you to be diagnosed. Luckily no one wants to have me around for dinner since my diagnosis so I've escaped the wrath of others' cooking thus far, but that is good advice. Seems that the coeliac way of life is an exhausting non-stop 'fun' fest.....

Hi MorganSpice and welcome. Codex wheat starch is a bit of a minefield, and crops up in a number of 'gluten free' products, notably Juvela brand and Schars 'medical' arm, but must be listed as 'gluten free wheat starch', or 'deglutinated wheat starch' . It often crops up in other branded goods such as Ginster's gluten free pasties and others. Label reading needs to become routine. The 20ppm is also cumulative, so even if you can tolerate it, if you have a slice of bread with each meal, you can consume quite a lot without realising. The current 20ppm is EU law, so hopefully, when it gets round to it, the UK govt. may introduce their own standards. Australia's standard is the lowest detectible level, currently 3ppm. I am not coeliac, but wheat allergic and have been caught out by this. On a different topic, manufacturers who claim 'gluten free' must have their systems and processes audited and their products tested before they can put that claim on the label. They should also have special cleaning systems and use swabbing to ensure the cleaning has been effective.

Hello BabsyWabsy (great name!) and thank you for that. This wheat starch just seems crazy, and I am glad that I have so far dodged a bullet in avoiding products that contain it. I'm trying Tesco own brand gluten free bread at the moment and a few Warburtons and Genius bakery products. I'm not massively impressed to be fair, but I appreciate it's never going to be like the real thing, so at least it's a back-up. I don't eat a lot of bread generally, but it's biscuits and cakes that I am missing. I found some excellent lemon drizzle in a small café in Cornwall in August and it was a piece of heaven, so clearly a good gf cake is a possibility. My understanding on the factory system, from a thread I found on here, is that no proper systems have to be put in place and the product does not have to actually be tested for gluten to have the 'gluten free' assertion. It seems, from what I read, is that the testing requirement is only for those who have signed up to an accredited system, e.g. Coeliac UK. Otherwise, they can just declare gluten free on basis of ingredients and their own assertion. I'm not sure if I'm repeating misinformation at this point. We need a book or something to help us navigate all the vagaries at the beginning.

I have spent the majority of my working life in food manufacture and retail, and always always had to justify and verify anything that wanted to be called gluten free. Retailers, some in particular, are very cautious about anything which might cause a legal challenge, and if you are making stuff for a supermarket, they as the customer will dictate what is on the label. Therefore, to avoid compromising their integrity, they will insist on a full factory audit, including details of where ingredients are sourced and their GF accreditation. Unless there is full compliance to the current standard, they will not trade with that manufacturer. However, if you make your own branded stuff, you may be tempted to take a short cut, but if that company claimed GF and there was an issue showing their systems were inadequate to support that claim, they could be prosecuted by FSA and Trading Standards for making misleading claims, and have a civil prosecution for damages from a person adversely affected. Current UK legislation allows for 20ppm in anything claimed as GF, not just Codex. It really is not worth the risk to take short cuts. An ideal situation is where ALL products at a given manufacturer are GF, eliminating any risk of cross contamination. An issue which is often poorly understood.

Hi MorganSpice,

Yes, it is a minefield and your brain gets frazzled with all the information. Plus we roughly eat 3 times a day and it can be quite disconcerting- Am I eating the right thing ? Is this going to make me ill ?

I’ve been on and off the Paleo diet otherwise known as the Autoimmune Protocol most of my adult life. I didn’t even know it was a thing, my natural food choices are meat, fish, fruit and veg. It also has nuts but I cannot ration them - far too greedy. I’d have the odd bar of chocolate and haribo’s (most of which are gluten free) here and there. I also have a very strong opinion about us having to pay more for food because we suffer from an illness.

I second what Jerry says. I also make from scratch but mine is chopping and/or chucking in oven, plus seasoning. Ginger, oregano are great to calm inflammation. The codex is something I became aware of, thanks to people on here. I avoid ‘gluten free’ like the plague but my knowledge is poor.

However, if food does still have 20 ppm and Prof Marsh (the Godfather of Coeliac disease) said, ‘No human can actually digest gluten; it is just that some people can cope and never have a problem, others can cope for a time and a smaller number of genetic gluten sensitives don’t cope at all.’ (Paragraph 3 last couple of sentences).

foodsmatter.com/coeliac-dis...

Nellie237 mentions blood tests. However, it’s worth taking note of ‘How your hair feels ?’ ‘Your nails ?’ Your skin ? Are your lips chapped or dry ?

These all reflect gut health and that’s why big recommends from dieticians, nutritionists, functional nutritionists include bone broth (for the collagen and other nutrients). You can make your own (very easy) or buy a mix. Collagen helps fix the junctions in the gut (called zonulin - if you’re interested) caused by gluten. The NHS use an umbrella term called ‘Leaky Gut.’

Obviously, the Bone broth is a mere suggestion but you may or may want warmer and heartier food as it’s autumn (fall for 🇺🇸) and this can be a basis for casseroles, soups and stews.

Hope this helps.

Best wishes

😊

Thank you. And thank you for that link. I've found some good YouTube videos also. I fail to understand why something so damaging can be so prevalent in our diets, and why our gluten free food manufacturers still insist on including it in food. It's like they purposefully want to makes us ill. A lot of fast learning to do! Thank you again.

My pleasure. Great about the YouTube videos. Keep asking questions as there’s lots of knowledgeable people and we are a community. We understand, as Jerry said, it’s ok to be anxious, be upset, confused. I like to think of it as a journey, so just step by step.

The only thing I can think of with regards to gluten/wheat being so prevalent in our food is ‘bread and circuses’ - how to placate the masses and going back to Ancient Greece. But that’s my weirdo head. 😂

There is a scientific explanation though and won’t bore you.

🐳

I don't have much helpful information, after the advice you've had above, but I thought it might help to give a bit of context. The 20ppm guidance in the UK is based on WHO recommendation, which is set at this level as it is tolerable for 85% of coeliac's out there.

I suspect more than 15% don't get on with "gluten removed" products, like codex wheat starch or gluten free beers though!

Hi MorganSpice. You've found the right place for coeliac info. Yes, the GF commercial foods are a hot topic on here. I find some ok, others I would not touch for love nor money. Unfortunately owing to the blanket codex level, it's difficult to know which are skimming the 20ppm (or exceeding it in cases) and which are below measurable gluten. I find checking with individual manufacturers is helpful, if not tedious. Those who can declare no measureable gluten will be happy to inform you (Genius are one such company), others will faff around the topic, and some will not reply (tends to be the big companies, like Mars or Nestlé). We have no true representative body from what I can see (Coeliac UK are seriously missing the mark, and aware that they are missing the mark, and do not seem to give a hoot), so you are, without sounding harsh, a bit on your own with it all, bar what you can glean from internet and on here. Best to avoid GF in your first year, in addition to gf oats (if NHS dietician has mentioned that), and let your body fix. I find commercial GF are heavy on additives in the main, so try to avoid. It's a learning curve, your at the beginning, so the faster you can learn the faster you'll get healthy!

Thank you Benjamin123 - that's good advice. I do feel I'm off on the right footing by joining this group, so all the info and advice is really helpful.

The best rule of thumb I have found is to stay away from all grains and stick to meat, veges, and fruit. No packaged or boxed food.

Thank you CATRYNA49. That sounds healthy and limiting! How do you manage for convenience or if you are out and about. I'm seeing a lot online about avoiding all grains, so that's interesting that you mention that also. Do you avoid all grains because of gluten risk or because they are damaging?

I avoid all grains because me body does best without them, especially what with having DH for 50 years. I usually take nuts and dried fruit with me, along with water, when I'm out and about.

Good to plan ahead.

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