An extended GF list for hypersensitive coeliacs and DH

[Suit]

Hi

I'm not the only one battling with hidden sources of gluten, with a feeling that the standards set are a pure mockery.

I know there's plenty of lists, but not everything is covered in them either. This might help someone like me that is continously trying to figure out what to avoid.

What are you avoiding?

Do you know why that particular additive is causing you issues?

I'm avoiding following because I have determined them to be a devil in disguise for me.

Oats: must contain a lot of gluten even if it says gluten free.

Flour: is a big issue, I don't buy if it does not explicitly say gluten free. And even then I choose with care, sorghum does not work.. Why?

Rice, potato, corn and nut seem to be fine. Not buckwheat etc. I think they grind it where wheat has been handled, because I can eat them whole.

Dextrins; most of it seems to be derived from barley or wheat. I usually ask before I buy.

Potassium sorbate; I don't know why, but maybe it has something to do with the salt and rash?

Cellulose; I'm careful with this one, because it made my rash flare up. Turns out that it can sometimes be made from wheat if used in food. Not very often though.

Glucose syrup; I'm careful with this one, because it can be made from wheat. Not very often though.

Ethyl alcohol: any alcohol can be derived from wheat. This was in food that gave me a reaction, but together with potassium sorbate. Don't know if one or both were devils.

Alcohol: I don't dare. Do you know something that works for sure?

Sugary things I mind: anything that doesn't sound like pure sugar or honey. I cannot tolerate e150 for instance, caramel color, which was added in a gluten free soy sauce. (I haven't tried everything "sugary", because I am becoming phobic. Have you tried something that is OK?)

Food fillers: I mind carefully. Diligent research.

Peanuts: giving me an itchy rash. I don't think its the seed in itself, but salt or CCd.

I actually think that I cannot use tampons nor pads either, I usually don't, but when I do I get itchy after a while.

And I have also learned that I must use salt with care. Not an overload of it.

What else do we need to mind?

[Hidden]

Hi Suit,

Unfortunately Gluten free doesn't mean Zero gluten it means there is less than 20ppm so we have codex wheat, barley and as you rightly say oats all containing gluten and classed as gluten free.

Oats are a member of the tritcale grass family the edible members of the gluten containing grains of wheat oats barley and rye. But because 'pure' oats are naturally low in gluten some coeliac can tolerate 50g in 24 hours this is 1 3/4oz and coeliac children are advised not to eat more than 15g 1/2oz. All coeliac experts agree that oats have the ability to make coeliac ill. So why aren't they classed as low gluten? Because coeliac wouldn't eat them.

Many artificial sugars are wheat derivatives and wheat derivatives do bot have to be listed as such in the UK and the EU whereas they do in the US and Australia.

Now another anomaly is gluten free standards vary in other countries and Australia has the highest standards on GF with undetectable gluten classes as GF.

Here's a link to CSA:

coeliac.org.au/gluten-free/

I avoid lots of GF foods in the UK because they contain allowed levels of gluten so I avoid codex wheat, pure oats, malt vinegar and malted cereals, artificial sugars, caramel E152 amongst others.

The CSA have a list of foods for those who are sensitive to undetectable gluten so that should help you.

It took me a little while to get my head around the fact that gluten in gluten free foods was making me ill but now I know its easy to avoid, so you are not alone and I wish you well.

Jerry. 😊

[Suit in reply to Hidden]

Thanks

I will check out csas list.

Yes, under 2mg gluten per hectogram is a mockery to some of us. Especially when you know that a fair amount of the GF still have above 20ppm when tested. How can we make them change the standards and once again label derivatives?

I begin to get ill quite quickly and quite badly, I was lucky to go completely safe the first time, hence had a great starting point to realize that codex wheat starch was not gf or else I must have cancer or something (pain in bones).

[Hidden in reply to Suit]

Unfortunately it's how 'codex' is interpreted as some countries say none of the toxic grains and within codex whereas we can get codex wheat on prescription so barley is allowed if it's within codex.

Even acetic acid can be a wheat derivative. I find some saturated fats upset me too so I eat a naturally gluten free diet based on whole foods and there are lots of gluten free recipes I've put on here:

healthunlocked.com/healthye...

Once you realise what you can eat and focus on that it gets easier, so good luck and like I said before you're not alone.

Jerry. 😊

[Suit in reply to Hidden]

I know I'm not alone. That is double sided, a comfort and a frustration. We're many, and yet they expect us to follow standards.

Acetic acid can be made from wheat, or stored in a barrel sealed with glue made of wheat. I'm careful with this too.

Saturated fats is something I don't have an issue with at all, but we live in different countries. Do you think it's CCd or just damaged guts?

I've read that you cannot destroy gluten, it needs a lot of pressure and heat. What happens is that it breaks down gluten but the inner core of the strain is still intact. I'm guessing that ELISA cannot measure these broken particles as well as your body can, hence they've decided it's gf due to equipment failures.

Thanx for your links. I've got some homework to do now

[Cooper27]

Oats contain a protein called avenin, which looks very similar to the gluten protein. Unfortunately in around 10% of coeliacs, the body mistakes it for being the same thing, and it triggers the same reaction.

[Hidden in reply to Cooper27]

Hi Cooper avenin oat gluten is toxic to coeliac which's why we are told to introduce them gradually to build up a tolerance and then not exceed a small amount, so it doesn't sound very gluten free to me. Pure oats contain much less avenin (gluten) than wheat rye and barley do, hence low levels appear to be tolerated by some.

[Cooper27 in reply to Hidden]

The guidance has changed in the last 18 months - when diagnosed with coeliac disease, they now tell you to keep oats in the diet and only cut them out if you still experience symptoms or have elevated antibodies (according to a talk we attended by a paediatric specialist and an NHS dietician).

The previous guidance was to cut them out at the same time as gluten, and to reintroduce a small amount at first, to see if it caused any symptoms. This is pretty standard for anyone reintroducing a food - you would have the same approach for a suspected dairy intolerance.

This is the coeliac UK guidance on it:

coeliac.org.uk/gluten-free-...

[Hidden in reply to Cooper27]

Hi Copper just because their advice has changed the toxicity of oats has not so I like many others see oats as controversial as all coeliac experts agree that oats have the to potential to make coeliac ill.

If oats are gluten free then why are adults told not to eat more than 50g? and coeliac children 15g?

In Australia 23% of the coeliac were made ill by pure oats and all the coeliac children dropped out of trials...

[Cooper27 in reply to Hidden]

Unfortunately the guidance in the UK is really based on what's ok for the vast majority, and so because <20ppm is ok for 90%, that's the threshold, and because oats are ok for 80%, they say to keep them in.

Why oats are not ok for many is one of the great mysteries, they don't know why. But we've never been told to limit oats to less than 50g.

[Hidden in reply to Cooper27]

Unfortunately the guidance of what is gluten free and how codex gluten free is interpreted is greatly influenced by the fact that coeliac can get codex wheat on prescription so everything else under codex is gluten free including malted breakfast cereals and malt vinegar. Whereas other countries in the EU do not class malted breakfast cereals as gluten free or malt vinegar. This is my opinion.

I wonder if coeliac gave up codex wheat malted breakfast cereals oats etc for a couple of months whether they'd still be able to tolerate them...

When I have my annual blood test my Dr comments how healthy I am and how good my iron and micronutrients are and I've a badge for being a long distance blood donor, so my diet works for me regardless of my sensitivity to gluten. 😊

[Cooper27 in reply to Hidden]

I know the answer to this! Barley malt extract is typically used in very small quantities in food, and because of the very small amounts used, it often means the product can still come in below the 20ppm threshold. However, some products use just a little more, taking it over the 20ppm threshold.

If it contains barley malt extract, then it should be avoided unless you can check that it comes under the threshold or not (we'd usually err on the side of caution and avoid).

I agree codex is a bad shout, as are gluten removed beers.

I'm also really confused by malt vinegar - I think it's ok, but then I always doubt myself!

[Hidden in reply to Cooper27]

I am sorry cooper but I question ‘safe’ levels of gluten because it is still toxic there’s just less of it,

Not many coeliac societies recommend malt vinegar or malted cereals as suitable for coeliac and I think it’s only because we get codex on prescription that the UK coeliac society thinks malt is safe.

I cannot eat lots of food labelled gluten free in the UK but in NZ I can eat everything and that’s because they have far more robust standards than us. They have 5ppm with none of the forbidden grains...And they give advice to coeliac who are sensitive to the 5ppm threshold with wheat derivatives like dextrose.

I don’t think malt vinegar is suitable for coeliac and if you chatted to coeliac in the US or Australia they’d ask you why you risk it.

I think that gluten free should mean gluten free and would like to see zero gluten in gluten free food... 😊

[Cooper27 in reply to Hidden]

It just comes down to the standards - I know it's quite liberal here, compared to other countries, but it's just the line the UK has adopted.

Although gluten will always be toxic to a coeliac, each coeliac is different with what they can tolerate before getting sick - I know some who share a toaster, without getting sick (blood tests confirm), and they think we're daft for going so far as to have gotten rid of our toaster altogether.

It is possible for a product to contain barley malt extract and have less than 5ppm, so lowering the limit isn't necessarily the answer if you wish to avoid it, although I'm glad some countries do ban all gluten containing ingredients from GF food. I wonder how that works with the likes of distilled malt vinegar or whisky though.

[Hidden in reply to Cooper27]

No its the line the UK charity has chosen as they are sponsored by the prescription food industry making Coeliac UK the biggest coeliac charity in the world.

If you can get food on script you can go to the pharmacy at Tesco's and collect your Juvela bread at a cost of £8.40 for a 400g codex wheat starch loaf. You can then stroll around to the free from aisle and buy the same loaf for £2.80. So the poor old NHS has to pay 3 times as much for the same item, which is bonkers.

The UK charity interprets codex to suit them in my opinion with no regard for 'us' the coeliac. So to me its all about money and profits and I for one am proud not to be a member of the UK charity and I haven't been for many years as I won't let their food list make me ill.

I know coeliac who think they can tolerate malt codex etc and yet they have to have vitamin D supplements and take Immodium...And they think they're on a strict gluten free diet...

If you read the EFSA they say that 20ppm is unlikely to have a severe reaction on coeliac. So they know it's still toxic so will still cause us harm.

I think the less gluten we ingest the less that we can tolerate and feel that codex is a curse and a compromise that makes some coeliac ill and some people a lot of money.

So if it isn't zero gluten it isn't really gluten free...full stop. 😊

[Cooper27 in reply to Hidden]

I do get what you're saying, but I just think our opinions will always differ on this topic.

While we get frustrated that the likes of Domino's are still allowed to be accredited with coeliac UK, their research is pretty invaluable, and the people that we've met who work for the charity have always been driven by furthering understanding of the disease, and better patient testing.

[Hidden in reply to Cooper27]

Hi Cooper, I feel sorry for their staff who are obviously well meaning. But for me to want any association they have to have a much better ethos.

I think if their research was so marvellous they would understand how harmful gluten is to coeliac which to me they obviously do not.

So I'm sorry to disagree with you.

Jerry.

[Suit in reply to Hidden]

The standards to label fish in food is set by the lowest traces of fish that is recorded to cause a reaction. I think it's 5ppm.

Perhaps they ought to decide in the same way when it comes to gluten.

And introduce a second standard as I understand they have in the US, (one with 20 and one with 10.)

Europe could have one standard for the lowest recorded reaction in a lab, and keep the 20ppm for those who aren't that hypersensitive. And let people choose.

And reintroduce the requirement to label if something is derived from gluten grains. Even if the tomatoe paste used in another dish, like chili sauce, contains derivatives from gluten grains.

[Suit in reply to Cooper27]

Thanx, yes oats definitely seem to be the devils little brother. So, try to make the body used to oats or not?

[Hidden in reply to Suit]

Either it is gluten free or it isn't in my world, regardless of some experts.

[Cooper27 in reply to Suit]

As they set you off, I would tend to leave them out, as you may find they keep antibodies elevated and prevent your gut from healing.

It's a minefield of rules this disease!

[WobblyCaroline]

Really good list, thanks for sharing! I cannot tolerate some supposedly gluten free crisps. Anything grain GF I find tricky. Anything with malt vinegar (barley), some things with glucose syrup, gin, brandy etc. Sugar and dairy also a massive issue for me. I also had a really bad Hay fever reaction this year and I wonder how much of that is down to being in the middle of fields of barley and wheat even though they haven't yet been harvested (some have been flattened by the flooding recently so hopefully won't be dried as they are lost).

[WobblyCaroline in reply to WobblyCaroline]

One thing I forgot, I have a real problem with wild or brown rice... brings on poorly tummy and migraine almost without fail.

[Suit in reply to WobblyCaroline]

Thanx

I'll stay away from wild and brown rice

I was in a car with two others that had hay fever, one of them severe. When we drove through a long field both of them stopped sneezing. But I begun. This I found interesting because I thought I was sensitive to grass, but the one with severe hay fever reacts to grass too.

I do know now that I have some antibodies towards wheat, just slightly positive, but within range (2 digits under positive). Perhaps you have the same issue.

[WobblyCaroline in reply to Suit]

That is really interesting. I know there is a chart for cross reactivity for people with issues with certain plants. There are family relationships of pollens. I have an issue with Birch, Carrot, Parsley etc. I'll look and see if they are connected in some way to the gluten grains. I have had to stop sleeping with the bedroom window open and it is nearly summer!

[Suit in reply to WobblyCaroline]

There's supposed to be a possibility for cross reaction with grains if you are allergic to grass.

I don't have any elevated levels of grass nor anything else though.

But maybe the other way around.

[CATRYNA49]

Be careful of anything that vitamin E listed. Usually, it comes from wheat germ and be careful of ingredients in your topicals .

Avena sativa (oats)

Beta glucan (frequently derived from wheat)

Colloidal oatmeal

Dextrin palmitate (starch, possibly gluten-based)

Vitamin E (frequently derived from wheat)

Hordeum vulgare (barley)

Hydrolyzed vegetable protein (may contain wheat)

Hydrolyzed wheat protein

Laurdimonium hydroxypropyl (hydrolyzed wheat protein)

Malt extract (usually barley)

Secale cereale (rye)

Stearyl dimonium hydroxypropyl (hydrolyzed wheat protein)

Triticum vulgare (wheat)

Vegetable protein (may contain wheat, barley, rye and/or oats)

Wheat germ oil

[Suit in reply to CATRYNA49]

Wow, thank you for this list! Didn't know about any of them except vitamin E.

Which is supposed to be commonly used in meats, to keep them looking fresh.

[CATRYNA49 in reply to Suit]

Sorry. That I don't know or have forgotten

[Suit in reply to CATRYNA49]

No, I'm sorry. I meant that vitamin E is supposed to be added to meats in order to keep it fresh. used to be added anyway

[CATRYNA49 in reply to Suit]

Oh yes, I understand and yes, it was used for preserving the fresh look of meat. Don't know if they still use it or not, though.

[Hidden in reply to CATRYNA49]

Excellent list. 😊

[Penel]

Hi Suit

Best to avoid any food that contains additives, if you can. Some of the problems you mention may occur without gluten being involved.

There are animal studies which have shown that emulsifiers in food can cause gut damage and disrupt the bacteria balance. This can lead to a variety of health problems, especially in someone with already damaged guts.

Emulsifiers are often added to foods like margarine, bread, processed meats, ice cream and chocolate. Best to opt for butter, and check the labels on everything.

[Suit in reply to Penel]

Hi

Yes, I know. I always try to pick the groceries with no additives. But once in a while you can't find an item you need without it, like in vitamins.

I even try to buy items with pure ingredients, because no one labels what that tomato sauce in another dish contains.

[lovejesus7]

I need to do my best to avoid gluten, diary, and some types of fruit and vegetables I ate cane sugar,I have IBSC

I do my very best to avoid foods that have the things that hurt me.

But,there are times where I am ok

So I eat just a small amount of thses things once in a great while

So just becarful

[bookish]

Might be worth looking at Micki Rose's site purehealthclinic.co.uk/trul.... Her TGF master list is extremely useful for supplements etc and her book The Gluten Plan is fabulous.