Behaviour and food allergies/ sensitivities

[AuntPru]

Hi! My 5yo son is currently being assessed for possible ASD. The main challenge we're experiencing is extremely angry and violent tantrums/ meltdowns. My husband did some research online, and came across quite a few articles about a link between gluten/ dairy consumption and behavioural challenges. There is a family history of gluten intolerance (not coeliac's disease) and we've experimented with removing gluten from his diet. Anecdotally, the prolonged angry outbursts have only happened on days where he did get given gluten (school are a bit slow with accommodating him and communicating his new dietary requirements), so it does seem like there might be a connection. However. I can't help but feel it sounds like quackery. He has 0 physical symptoms of gluten intolerance (our younger son has nappies from hell when he inadvertently is fed gluten) and it just sounds a bit too simplistic to me - surely the GP or HV would have mentioned this as a possible explanation for his behavioural challenges if it was a thing? It just sounds a bit "vaccines cause autism" to me, IFYSWIM.

Would anyone mind sharing their experiences of the link between diet and behaviour/ mood in their children? I am open to being persuaded!

you really shouldn’t remove gluten from a young child’s diet as regular grain food are generally fortified in the U.K, GF foods aren’t, so they can end up low in B12/folate, iron etc.

Annatto -a colouring in pizza, custard and some ice cream cones, used to send our ADHD/ASD DC into rages, in fact the majority of anything processed -sausage rolls, crisps etc used to have awful effects on him., along with fruit squash. We could always tell if he’d inadvertently been given anything with certain additives in. I was thrilled when I picked something up one day and there was a warning on it about it containing Annatto which ‘can cause adverse effects in children’, I thought food producers had finally woken up -sadly not as I don’t see warnings often.
We did used to have a book full of the E numbers to avoid, I will see if I can find the info, but it was a fair while ago!

It’s not quackery, just GPs don’t focus on diet or food really. My DD has coeliac disease, you would be amazed what it is responsible for including neurological issues. Food and behaviour are very closely related. Look for peer reviewed medical articles regarding gluten intolerance and sensitivity relating to behaviour.

It is absolute rubbish... unless your child has a genuine intolerance. Other than too much sugar in the diet causing the ups and downs and crashes. food, uk food colourings etc do not cause behavioural issues in neurotypical or neurodiverse children. I've been where you are searching for answers, there are no cures just coping strategies. as a parent learning my child's triggers and sensitivities to the enviroment helped massively with behaviour and meltdowns, you have to try to remember that by the time the child is in that state they are extremely anxious and overwhelmed often we miss the build up behaviours (fidgeting, asking to go home, sitting quietly, withdrawing, overly engageing all different in every child) so think the child is reacting to one simple thing this is usually not the case, easiest way to explain it is like when we catch our toe on that table leg you know it's there you know it's coming but if your already having a bad day we swear and get pretty mad with the table when in reality your already pretty frustrated as on a good day you would be able to cope with that better. Autism awareness courses may help and are often available online or via parenting groups to help with understanding why your child reacts the way they do, I have 3 sen children and basically my whole family 20 out or 23 cousins are diagnosed with either adhd or asd sometimes both, I then trained and became an independence tutor for sen children and young adults before having to leave to cater to my children's own needs due to them being pretty severe.

It is not rubbish as a previous poster said. I have a gluten intolerance - I get depressed mood, anxiety, headaches and get 'gluten rage'. Feel great when I don't have gluten or sugar and my mood is very stable.
There is lots of growing evidence of the massive impact food has on our mental health.

Thanks for your views. Just to clarify: we're not totally removing gluten from his diet, he still has fortified breakfast cereals and we're trying to substitute sourdough for regular wheat products. @Sprinkles211 Whilst I would never claim to be an expert on autism, I am a teacher working at a school known for its excellent SEN provision, so I do know a thing or two about it. I have witnessed my child go from 0-60 at an incredibly minor trigger and be stuck in a completely dysregulated state for half an hour, if not more. Over the past week, this has happened every day he's had gluten and not once when he hasn't. I was/ am sceptical about the gluten-behaviour link, but as this is not a scientific experiment, I'll give it a few more days, and if this pattern stays the same I'm happy to conclude that correlation is indeed causation in this case.

@MattyMatthew I said UNLESS you have an actual intolerance. I say this as my child who has multiple disabilities including asd and arfid leading to being tube fed had every allergy and intolerance test due to her self restriction in food even a biopsy taken from inside her stomach, she got a team of gastroenterologists and dieticians all of which said that the taking away of gluten or dairy for behavioural reasons is now outdated advice and potentially harmful to restrict an asd child's diet unless there's a proven allergy/intolerance due to the nature of children with asd and sensory issues you could inadvertently cause more harm.

It is definitely worth making notes on what you think has helped or hindered. Then you can look at any patterns. Food diaries are a right faff but will hopefully give evidence for any reactions that you've noticed. I have been dealing with ASD/ADHD and possible coeliac so I completely understand why you are trying to get to grips with this. My suggestion would be to make sensible swaps where possible, depending on what your child is prepared to eat. So swap Weetabix for cornflakes, and bread for Nairns oatcakes for a few days, and see what happens. Still normal foods, but without the gluten. If you suspect coeliac (it's possible) then don't cut out gluten completely until properly tested. If your child struggles with their interoception, they may be experiencing discomfort but are unable to explain this to you. Hence the outbursts of frustration. Best of luck to you @AuntPru and I hope you find out the answers you are looking for.

You can ensure he has sufficient iron, b12 and folate without eating fortified cereals. Many people eat whole food diets without fortified foods.

There is a possibility that he has gene mutations that prevent the absorbtion of certain forms of B vitamins so the fortified foods might not be helping anyway.

Excluding the possibility that he has celiac disease (can also be done by gene testing) is useful but beyond that, it is perfectly possible to have a balanced diet without gluten and there are links between the gut, gluten and mood.

I think you should believe in your gut feelings.

I have PTSD. And likely ADD and ASD. But undiagnosed because doctors do not recognise it in women. I have troubles with food since childhood. I refused milk. But was forced to drink it.

I turned out with heavy psychiatric problems (partly because of abuse). I have told doctors I responded with emotional stuff to food since 2013. Said I suspected milk and gluten were a problem, as well as additives. They labelled it a delusion. And forced me to eat it in a ward. Denied testing. And persuaded me it was nonsense.

In 2022 my lactose intolerance was confirmed. I went on a dairy free diet. It helped a ton. Whenever I now have milk…even a tiny bit, like a teaspoon of yoghurt…my character changes radically. Within an hour. I was a gentle and calm person by nature. But milk turns me into a werewolf. I feel so extremely horrid, that even as an adult I cannot contain it. It is the most horrible feeling. It seems emotional, but I feel it comes from my body. Like a monster lives inside me. All trauma comes up. I am severely depressed. Suicidal. Impulsive. Delusional. It happened more than once, that I nearly jumped in front of a train, because I had milk. And that is literal. I feel such extreme emotional pain. I am full of rage at the people who hurt me, or did not believe me, and feel the urge to scream and hit them. Mind you, this a a grown women who really doesn’t want to hurt anyone and has even forgiven incest. So I’m not aggressive by nature.

I have some very mild physical symptoms, like painful belly and diarrhoea. But barely. It is mostly emotional. And blind: I can feel when I had a wrong food accidently, like when I accepted something that had milk without my knowledge. Oh and: I do not know what else is the problem, but lactose free milk does the same. So there’s something else in milk I’m responding to.

I also researched gluten too. There is celiac. Which can be tested for. And there is non-celiac gluten sensitivity. Which needs an elimination diet to show. And has more emotional symptoms. Glutamate is a problem for me. Be it MSG or Parmesan. Also blind tested. And histamine may be. I’m still figuring out what foods I respond to. And doctors are useless. They are educated to not look into food/diet.

I tried an ADHD diet which is named few foods diet. It is very restrictive at the start. And meant to find the food sensitivities causing ADHD and ODD. It made a radical difference to me. I was organised, happy, calm and reflective. The girl I originally was. Others noticed. It was like magic. Only it is so restrictive that I did not stick to it. It is supposed to be done with a dietician only. It really takes away all allergens, and reintroduces them bit by bit.

https://edepot.wur.nl/521352

I know doctors and many others say it is nonsense. But I KNOW it is true. Everyone who doesn’t believe me is - and I mean this - welcome to come test me blind for milk and glutamate. I feel such extreme horror inside after having it, within a short time. That it cannot be missed. And it is absolutely cruel doctors are denying children (and adults) this help.

Help your kid and be strict with food sensitivities. If he feels like I do when having the wrong food…I understand he acts out. It isn’t fun to hear….he isn’t difficult, he is in extreme emotional pain.

The more you ignore it, the worse it gets. I got very sensitive to many foods, as well as hormones and medicine. I suspect my
primary problem is milk and glutamate. Which is in the family. And the rest came from ignoring that for decades.

Sorry for the long post, but I want to see your kids happy. And I think it is important for adhd/asd kids parents to understand.

My daughter has a dairy allergy with very distinctive gastro symptoms.

She also turns into an arse.

It wasn’t us that noticed the behaviour correlation, the dietician did.

I was a scout leader for a long time, and definitely saw diet impact on kids with adhd.

Good that it was taken seriously. For me it wrecked my life.

My son has refused milk instinctively. When he had it, he had a rash. My parents would force him to drink it, but I refused to give it to him. And told them to fuck off with the milk. Excuse my words. I think he cannot tolerate it either. And it is important to listen carefully to a kids signals.

He grew up a lot healthier than me. I think diet should be taken a lot more seriously.