AIBU to think that her ds might not really have food allergies?

[UsedToBeAPaxmanFan]

I know someone whose ds is friendly with my ds. The boys are now in their teens, but have known each other since nursery.

Her ds has multiple food allergies and a very restricted diet. So, no dairy, eggs, gluten, plus assorted other foods like peppers. He was diagnosed at about the age of 8 or 9 so has been on a restricted diet for several years now.

There was an article in The Guardian yesterday about children with food allergies, so I dropped it round to her thinking she'd be interested. We started talking about her ds's allergies and I asked her if her DS'consultant thought he would have them for life. It then transpired that he had never been diagnosd by a doctor but by a private nutritionist who had carried out the allergy tests by putting the trigger foodstuffs in a glass vial on her ds' hand. The foodstuffs had never come into contact with his skin.

I had never realised before that there was no formal dianosis, and think that this boy probably doesn't have multiple food allergies. I'm not saying he might not have one - he used to come up in hives occasionally when he was small, which is why his mum started trying to find the trigger in the first place - but that he's unlikely to be allergic to the amount of foods the "nutritionist" claimed.

Her ds is likely to go through adulthood with this very restricted diet when maybe he doesn't need to.

AIBU to suggest to her to review this and that her ds should seek a genuine medical opinion?

Absolutely agree with balloon slayer. It really is difficult to get help with allergies. It's just the luck of the draw as to whether you get referred to dietician and even then I've heard stories about them not being particularly helpful and that parents are having to work these things out on their own. One paediatrician will dismiss allergy despite child not gaining weight for years and vomiting every day. Another paed will suggest intolerance and how to do elimination test. Its so frustrating and demoralising as they don't really seem to have a consistent approach. So I can understand someone going privately to a nutritionist. I am speaking after years of taking DC to see several NHS gps, and paediatrics and paediatric gastros in various different hospitals.

I have been told numerous times by paediatrians that the only way to really find out if there is an intolerance is to eliminate it. Sounds like the Mum has done this eliminating symptoms. There are no reliable blood tests for intolerances.

Then one evening they were invited to a friend's place (friend also aware of the banana ban) and after their meal they were all sitting and chatting on the sofa when suddenly the allergic friend noticed a banana in the fruit bowl. She started feeling unwell, insisting it be removed and saying that she had known something was wrong as soon as they had arrived but hadn't known what. Now she was in the room with the banana, she could smell it and inhaling the vapour was making her ill.
It turned out that it wasn't even a real banana it was a wax one, put there to make the fruit bowl look attractive!

Nocebo effect. The Placebo effects less helpful brother.

Placebos don't work for me, but I can over react to Oscar Winning proportions when it comes to a Nocebo. DH has to read the side effects on any mess I take and keep an eye out for genuine reactions. If I read it I get all the side effects. Sometimes while the pill is still in my hand

The wussy knickers force is strong in me.

Bing0wings The OP's friend didn't take her child to a private nutritionist, some of whom can, at a pinch be vaguely reputable. She's based all of her son's allergies upon an 'assessment' by a kineisiologist, a whole new realm of whack-job quackery.

Allergies change as children grow up, my ds couldn't touch chocolate without hives but can eat it now. Milk, egg and nut caused anaphylaxis but 10 years later do not. It's necessary to be tested more than once by an immunologist.

elpha ok thanks. Noted.

But my point being that she has eliminated the cause of the hives/fog (albeit via whack-job) and seems to be thriving according to OP. So why mention it to the Mum? Her DS sounds quite old and that he's going to be making his own mind up soon. Is he even bothered that he is on restricted diet? Why does this restricted diet bother everyone so much? Half the country are eating too much sugar (including me) and we are not advising other parents about the rubbish their kids eat (mine eat loads of rubbish!)

I have a work colleague whose 13yo DS was diagnosed with severe diabetes about 18 months or so ago. He still tries to keep up with his mates' Mars bar intake, despite knowing his pancreas is pretty much non-functioning and that it could put him in hospital

🙄 When you say severe diabetes, do you mean Type 1 by any chance? Not sure how many Mars Bars it would take to put a person in hospital either. Most people with Type 1 these days (especially kids) will be on a regime where they can eat whatever they like, providing they cover their food with the correct insulin dose, Mars Bars and all.

Immunologist ? We haven't even managed getting a referral to dietician despite having a DC who is 6 yo but weight of 3 yo. We have been on meds for 4 years now but hardly any help with allergies or intolerances despite me going on and on. The first time I was taken seriously about intolerance is 7 months ago. It's not an easy route to go down.

TheHipho OK - does wildly unstable diabetes make your pedantic soul happier? Type One IDDM, sliding scale insulin, requiring four hourly BMs day and night? Been in hospital several times in ketoacidosis because he tries to have a normal teenage boy diet without a life ruled by an insulin pen?

I think 'severe' is a bit quicker and clearer to write, myself, particularly since most MNers aren't endocrinologists. FFS.

To all those who are saying 'oh, what's the harm in an unnecessary very restrictive diet for a child just in case of allergies' - I don't understand your attitude at all! If he was being put on a restricted diet for religious or moral/animal welfare reasons, everyone would be up in arms about how the parents are forcing their views on the kid and how he will grow up stunted and nutrient deprived. But if it's because of some bullshit quasi science reason it's suddenly OK, laudable even?

elpha

I just found it ironic that on a thread about being wildly misinformed about allergies, you come out with bollocks like severe diabetes and OMG! mars bars!

Back atcha.

If he is as unwell as you say, the likelihood now, is that he would be on an insulin pump. And if he is in and out of hospital with DKA, he isn't using insulin or testing his BS every four hours. It goes a little bit further than constantly guzzling chocolate.

I don't know...

My DS is intolerant/allergic to various things

From experience we know that if his skin touches grass he gets an allergic reaction. He gets a rash around his mouth if he eats tomatoes or citrus fruits/jujce

Yet GP never thought it necessary to test him, he is just a highly akeric sort of person (hayfever, eczema etc.)

Would love to have him tested properly but don't think nhs offer that, they just say steroid cream and antihistamine. He also gets migraines and I don't know what triggers them. My DH has had a few anaphalactic shocks so it seems to be in his genes. Yet GP does nothing.

So I understand people going to quacks

What else can one do?

I've worked as a clinician in acute medicine for twelve years now, thanks Hipho. I was illustrating how I got to my point, by succinctly referencing a personal experience. I didn't realise I had to document detailed evidence of background knowledge on a vaguely unrelated aside to qualify to make a comment.

Do you want to get back on topic now?

Bizarrely, I have just come back from a drinks party where this guy was going on about having been tested by a woman with a "special German machine". He had to hold two electrode type things then touch them to glass vials containing various foodstuffs, and the electrical resistance indicated whether he was allergic or not.

He appeared in lol other respects to be quite sane and rational.

"So I understand people going to quacks

What else can one do?"

Well, going to a private allergy specialist would seem logical.

I've worked as a clinician in acute medicine for twelve years now, thanks Hipho

Well done, you.

I was illustrating how I got to my point, by succinctly referencing a personal experience. I didn't realise I had to document detailed evidence of background knowledge on a vaguely unrelated aside to qualify to make a comment

You didn't 'succinctly reference a personal experience' either, but don't let that stop you. It was second hand, ill informed rubbish.

HTH.

Bertrand, I did not know allergy specialists that you could consult existed ()

Not been to a quack, myself but understand why people might go

Loved the guardian article!

0christmastree5 I'm excited to hear that your child outgrew a nut allergy. Would be very happy if my DD outgrew hers later on fingers crossed!

going to a private allergy specialist would seem logical n

• what are they going to suggest then? blood tests ?

Numerous NHS GP's and Paediatricians have stated that blood tests are unreliable and the best way of testing for food intolerance/allergy is an elimination test. Blood tests can give false negatives.

This is what this mother appears to have done. An elimination test.
Yes it does seem to be based on a whacky Vega test but seeing as allergy blood tests are also unreliable, does it really matter how she started her elimination tests.

the kid and how he will grow up stunted and nutrient deprived - but the OP said the child is thriving. So what is the problem? There seems to be a huge assumption that this diet is unbalanced? I have limited my dairy intake, but i compensate by getting calcium from other sources. This child maybe doing the same thing? Certain countries have no dairy at all in their diet. It just sounds very judgmental to be going on about this child and his different cereal that he bought on a sleepover. If he was gluten and dairy free at the time, then it is very difficult to find suitable foods and you do have to provide your own.

I wasn't judgemental about him bringing his own food with him because, at the time, I understood him to be a child who had been diagnosed with a range of food allergies, and I completely accepted that he brought his own food - just as I provide my ds with lactofree milk if he is staying elsewhere, as he has a lacto- intolerance ( not allergy) which was diagnosed after sessions with an nhs paediatric dietician and a process of elimination. Not after paying someone to place glass vials of milk on his hand.

However, it now turns out that this boy has had a very restricted diet for several years, based on not a lot of evidence. Yes, he appears to be absolutely fine on the diet, and from what I can gather his mum has made sure that it's a balanced diet, but it's possibly (probably?) Cut out lots of foods that he could have eaten.

Irritable. Thanks, it is an amazing relief, anaphylaxis is truly frightening to witness. My ds had first one at 4 months to milk and 16 years later can tolerate it, but doesn't like it. Cooked egg still causes hives but not always, it's very unpredictable. The nut allergy (cashews) we discovered by accident aged 4, when she ate some without asking. She can eat some nuts now, some are more allergenic than others, she eats Nutella (hazelnuts) no problems. But Suffers hay fever symptoms around peanut butter.
She always had adrenaline, even before she was too small for an epipen junior.
Have you contacted the anaphalyxis campaign or bsaci (British society for allergies and clinical immunology) ??

Ds is being retested for his allergies. We are waiting a double blind exposure test because apparently they don't do patch testing anymore as it is not reliable and testing has moved on. Mind you I suspect it depends on the type of allergic response type 1 immediate and life threatening vs type 4 (?) delayed onset and unlikely to be life threatening.
New NHS rules have made the entire situation a whole heap of a mess, plus you can grow out of an allergy to get it back.

Intollerances whilst not generally life threatening can have huge long term impacts. I am intollerant to nightshades. milk, wheat and gluten. Whilst I can eat with seemingly little impact the long term impact on inclusion of these things in my diet is huge. So huge it makes the difference between being able to lead a normal life and being completely bed bound.

Working around the intollerances is hard. The bonus with intollerances is that I can balance need and damage. Should I ever be eating these stuff? Nope. Can I eat in one off situations which it would be really awkward otherwise? Yes but I will suffer for it after the event. Does me eating the thing mean the intollerance has gone? nope. It is all about risk vs benefit assessment. But it is precisely this that complicates the whole situation as intollerances are so often labelled as allergies and so few understand the long reaching aspects of allergies as well as intollerances.

Lol Elphaba, 4-hourly bg-testing isn't severe diabetes, it's normal bog-standard T1. All T1D is "highly unstable". You don't get stable bgs without a functional pancreas. 4-hourly probably isn't enough for a teenager, actually.
And I've lost count of the number of doctors and nurses I've met who know nothing about T1 diabetes. It's really scary sometimes.

Oh FFS. What the fuck does it matter? My point was - I know of this teenage boy who needs to be really compliant with a certain regime. He's not, because he wants to be more like his mates, even though it affects his health. That's what made me comment that the teenage boy in this OP may not be entirely compliant with the quack-imposed dietary restrictions when out of his mother's presence.

Elphaba - it matters when someone claiming to be a clinician seems pretty clueless - TI diabetes is always severe if not treated. All T1s need to be really compliant with their regimens - it isn't something unique to him.