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AIBU?

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Original poster

To think emulsifiers should be banned or at least reduced

65 replies

MumofCrohnie · 02/04/2022 23:52

My daughter became seriously ill aged 10 with cramps, diarrhea, weight loss. Within a month or two she could barely walk 100 metres without getting a stitch, was breathless, routinely ran high temperatures and began vomiting randomly. She would wake at night crying in pain from her legs aching or her back hurting. She stopped growing and her skin went grey.

After 2 GP trips, 2 A and E visits within a month, and an emergency gastro appointment she was finally diagnosed with severe Crohn's disease. This disease was once virtually unknown in children but since the 1970s has grown enormously in children. It is now not particularly rare in children and increasingly common in adolescents and young adults. It is incurable and my daughter is now on 4 separate medications daily, quite probably for life. She has a 70 percent chance of in the future needing operations to remove sections of intestine, risks strictures, blockages, and fistulas in her intestines. She will probably go through early menopause.

There is increasing evidence that the Western diet contributes to the development of Crohn's in genetically susceptible people (her great grandma developed Crohn's in her 70s, back in the 1980s). Specifically, it seems that emulsifiers, carageenans, and maltodextrins may be a significant factor in developing Crohn's. In animal models there is pretty good evidence for emulsifiers. Emulsifiers bind fat and liquid and are used in bread, ice cream, sauces, baked goods etc almost ubiquitously in the UK. They are considered "safe", despite animal evidence showing they probably aren't. Since emulsifiers were added to prepared foods, Crohn's levels have increased hugely. This is a serious disease and it ruins lives.

AIBU to say that British food companies should be more wary of emulsifiers and label them in their food, provide emulsifier free alternatives and label items emulsifier free for families with an IBD history? Just like they make gluten free, dairy free and vegan foods?

OP posts:
LittleSnakes · 03/04/2022 08:00

What is carageenan labelled as on foods?

Southbucksldn · 03/04/2022 07:51

I think this is why medics all recommend whole food diets.
It’s the dose too - a little of ultra high processed food is ok but if that it your main food source then it will make you unwell in other ways.
It’s not about banning these substances but reducing them in our diets by eating more fruit and veg.
Easier said that done but processed food is a risk factor for diabetes and various other illnesses anyway.

DogandMog · 03/04/2022 06:58

Carrageenan is evil, drinking flavoured soya milks when I was vegan gave me bad stomach pains and an ache in my throat like I’d got a large vitamin tablet stuck sideways in my foodpipe. I’ve long since gone to eating a real food animal based diet, including fruit and veg, as eating highly processed, imported, over packaged factory food is worse all round.

Just remembered about a year ago I bought some gluten free tiger bread and that gave me the same cramps that carrageenan does. Other GF breads I’m fine with, but seldom eat... I’d much rather have a simple jacket potato than a sandwich.

Original poster
MumofCrohnie · 03/04/2022 06:30

As if me "demanding a ban" is going to make it happen!

It's virtually impossible to avoid giving your children foods with these ingredients, unless you bake your own bread and cook every single item from scratch (which we do now!)

They are in breads, cakes, biscuits, mayonnaise, other sauces, cottage cheese, icecream, gravy, margarine, wraps, "convenience foods" such as nuggets, etc. They are in the substitute foods you try when your child first gets ill and you reduce dairy and try vegan dairy alternatives such as nut milks. They are, as you say, in alternatives to wheat products that you try when you think maybe it's coeliac like her aunt and cousins. They are in sweets and chewing gum.

I think the public should have much better awareness, yes, and I guess I hoped this post might help. I am not expecting to wake up tomorrow and find that all emulsifiers are banned on the strength of this post!

But just maybe a few people with kids and autoimmune diseases in the family will change the way they eat, and avoid what has happened to us and many other families.

OP posts:
Summerfun54321 · 03/04/2022 06:25

Unfortunately the only way to avoid all the nasties is to home make all food including bread etc. Us humans are so lazy that even if we knew we wouldn’t want to change, look at climate change as an example.

ClumpingBambooIsALie · 03/04/2022 06:16

Then campaign for more research, better labelling/highlighting, public education if you can back it up, so people can make their own choice about whether to give their children foods with these ingredients. Demanding a ban is something else altogether.

Polyanthus2 · 03/04/2022 06:12

I think it's good to raise these issues. People need to be informed. You could contact your MP or maybe Woman's Hour or other programmes where they might discuss this which gives it publicity.

Original poster
MumofCrohnie · 03/04/2022 06:11

What do you think would be reasonable then, given that we don't know whose child is susceptible to Crohn's or colitis until it's triggered? And once triggered it's not curable?

OP posts:
Original poster
MumofCrohnie · 03/04/2022 06:09

It's not dodgy science!
It's medical journals such as Gastroenterology, BMJ, it's university teaching hospitals.

Can you link to any similar quality of research to show these additives are in fact safe?

To think emulsifiers should be banned or at least reduced
OP posts:
ClumpingBambooIsALie · 03/04/2022 06:02

It's not a competition about whether coeliac disease or Crohn's disease is worse (FWIW, yes, I would much rather have coeliac than Crohn's). It's about you popping up with some very dodgy science to demand bans that would impact on other people's quality of life, many of them people who would be your natural allies if instead you were asking for something reasonable.

Original poster
MumofCrohnie · 03/04/2022 06:02

Specifically - you don't know you have Crohn's until you do. So reading packets comes too late if you don't know about links to food additives that are pretty ubiquitous in our Western diet. By the time you find out, it's too late.

OP posts:
Original poster
MumofCrohnie · 03/04/2022 05:59

(post above to clumpingbamboo)

OP posts:
Original poster
MumofCrohnie · 03/04/2022 05:58

Actually you are right, I would like a ban on any specific emulsifiers and gums that might be proven to trigger IBD in susceptible individuals. Safe ones could still be used (like natural emulsifiers, soya lecithins)

The reason is that once triggered, you have Crohn's or ulcerative colitis for life. Children as young as toddlers are becoming lifelong medical patients. It's not reversible.

Families with coeliac in are at higher risk (we have 5 coeliacs in this generation; dd got the short straw and got Crohn's) as both are autoimmune bowel diseases so I am surprised that you think the way you do.

We were desperately hoping dd was coeliac. A life of reading packages or using 'free from' and she'd be fine. With Crohn's we have a lifetime of reading packages to try to find non highlighted additives that are in 55 percent of UK foods, and chances are she will still have multiple hospitalisations and operations and quite possibly a stoma.

If the specific emulsifiers, carageenans and gums shown to be linked were banned, my child and hundreds of others would quite possibly not now be lifelong medical patients.

OP posts:
Blossom64265 · 03/04/2022 05:54

As one of the increasing number of people suffering from autoimmune conditions and allergies, the chemical soup we are eating and using is an ever growing concern. I highly suspect future generations may use this time as evidence as what not to do with the food supply. Changes need to be based on hard evidence though and that makes things challenging.

rugbunch · 03/04/2022 05:47

Thanks for this OP, I had no idea. It's such a minefield. Sorry to hear about your dd.

ClumpingBambooIsALie · 03/04/2022 05:41

I was responding to your most recent mention of the question of bans, which was this: Rephrasing: not a ban then, only a ban on the dangerous emulsifiers, carageenans, gums? which is still calling for a ban. Your family's needs are not more important than other people's. Lots of people have to read labels.

Original poster
MumofCrohnie · 03/04/2022 05:28

Soontobe60
Carageenans are not at all shown to be safe with plenty of scientific evidence. Quite the reverse. Loads of references in this paper
www.ncbi.nlm.nih.gov/pmc/articles/PMC5410598/

OP posts:
Original poster
MumofCrohnie · 03/04/2022 05:15

"But they’re not dangerous to the majority of the population. There’s plenty of scientific evidence that shows carrageenan to be safe. The research carried out on rodents and cells were done at a molecular level. The product wasn’t taken orally. Therefore it is impossible to ascribe any findings in this type of research to oral consumption in humans."

Soontobe60 - wheat isn't harmful to most people, but they provide wheat free items. Dairy isn't either, but likewise.

Research has been carried out on humans. Obviously it's ethically difficult and recently been hampered by covid.
Examplekclpure.kcl.ac.uk/portal/en/theses/foodadditive-emulsifiers-and-the-low-emulsifier-diet-in-crohns-disease(81ccfe21-1eb1-457f-8c2f-46e8aceae7f6).html

www.ecco-ibd.eu/publications/ecco-news/item/diet-in-the-treatment-paradigm-of-crohn-s-disease-new-evidence-new-strategies.html

OP posts:
Original poster
MumofCrohnie · 03/04/2022 05:03

@ClumpingBambooIsALie

Instead of asking for a ban on things that other people benefit from (see PP's point about the fact gluten-free bread alternatives need many of these ingredients) and that haven't been shown to be dangerous to the majority of people, campaign for better labelling? You know, like coeliacs and people with allergies and other dietary needs have spent decades doing, without asking for bans on wheat or sulphites or phenylalanine. If you did that you'd have my support; on the other hand, if you campaign for a ban on ingredients that help make gluten free bread vaguely palatable, you'd have my strong position. It's best not to alienate potential allies.
If you read my updates you will see that I accept that my initial post was badly phrased. Better labelling and harmful emulsifier free options would be fine.
OP posts:
urbanbuddha · 03/04/2022 02:37

I agree with you OP. I'm sorry to hear about your daughter and I hope her condition can be managed, and that medical science comes up with improved treatments.
Don't beat yourself up about this. There is so much clever marketing and conflicting advice it's not always clear what's healthy and what's not.

ClumpingBambooIsALie · 03/04/2022 02:20

*strong opposition 🙄 bloody phone.

ClumpingBambooIsALie · 03/04/2022 02:19

Instead of asking for a ban on things that other people benefit from (see PP's point about the fact gluten-free bread alternatives need many of these ingredients) and that haven't been shown to be dangerous to the majority of people, campaign for better labelling? You know, like coeliacs and people with allergies and other dietary needs have spent decades doing, without asking for bans on wheat or sulphites or phenylalanine. If you did that you'd have my support; on the other hand, if you campaign for a ban on ingredients that help make gluten free bread vaguely palatable, you'd have my strong position. It's best not to alienate potential allies.

Cardboardboxingring · 03/04/2022 01:55

I'm with you OP, if not an outright ban I'd much prefer if there was more awareness of the potential effects of emulsifiers and better labelling of products which contain them. I went through a period of getting awful cramps, lightheadedness, sweating and actually vomiting from the pain after eating and it took me ages to realise it was guar gum that was causing it. While others say to just read labels and avoid it, it's not that simple: it's in everything from ice cream to salad dressings.

maddening · 03/04/2022 01:44

I think that despite all the advances the gut remains in some ways a mystery, I have IBS , which really means " we don't have a fucking clue what is wrong with you, try a couple of diets and peppermint products", it is frustrating.

Potatoesdonthavefaces · 03/04/2022 01:09

I had no idea OP, thanks for the warning. So sorry about what has happened to your daughter. It is not your fault. I am the type of person that is generally well informed on health issues and had never heard of this link, I don't think it's common knowledge at all.