Allergies ?? Very confused and need advice please

[rugrats3]

any advice would be greatly received.

My dd is on a milk,egg,soya,wheat and gluten free diet. She is also no longer allowed anything with nuts in.

She has reactions: Hives,wheezing,cough,tiredness and irratabilty .

Finally had skin tests done today and everything they tested her for came bk negative. The allergy clinics attitude was to tell me she doesnt need to be seen again by them.
Then saw her dietician afterwards and they have told me I still need to avoid all the above foods and that I still need to carry my dd's epipen with me at all times.

Feeling very confused and frustrated at the whole situation as not getting any support.
My drs attitude is if I piriton her twice a day everyday then I wont have to worry about her reacting to anything.
Dietician has told me not to piriton twice a day and only use it when needed which is what I have been doing (only giving it to her when she needs it)

Although I know there are alot of children with allergies out there I am feeling very isolated,confused and upset at the moment with the whole situation.

Any advice would be greatly received
Thank you

could she be allergic to something other than what you've excluded? did they test for housedustmites, pollen, etc? just an idea - not something I really know about. Good luck

Thank you for your reply
they tested for housedustmites and grass

The dietician has said even though she came up as a negative she could still be allergic?
Very confused about it all

Could the skin tests have been negative because you've been avoiding the allergens for too long? I'm not sure whether it works like that though.

My dd's allergic to dairy and egg - she's reacted to dairy food (trip to a+e after face swelled up) but we only found out about the egg through a skin prick test (and I'm sure she's had egg at least in her mouth before). We've got a food challenge for the egg next month.

We don't have an epipen but we did get prescribed piriton. Although it says to give her the piriton twice a day they said not to bother if we didn't think she needed it. We've been very careful with what she eats (she's only 21 months now) and she's not needed it so far. We're also fairly certain she's not allergic to airborne stuff or anything she touches so we're quite lucky there.

I did a www.yorktest.com (only suitable for those over 2) and found lots of intolerances - I know it's different to allergies but it's another test.

I've found it really hard to get appointments for the allergy clinic (waiting list is many months long and they keep cancelling appointments) but the person doing the clinic and the dietician we saw both gave us phone numbers for if we had any questions - I don't know if yours did similar. Would it be worth trying to phone the dietician or allergy clinic to see if they could explain it a bit better? If not, maybe you could try the paediatrician's secretary and get another appointment?

You have my sympathy - I really hate having to be careful about what my dd eats all the time and it sounds like you're having an even worse time of it.

Did she have the skin 'prick' test? Did you stop giving her the piriton for at least 5 days before the test? Ask for ige/RAST blood test as this is more conclusive. When my dd had these blood tests we were told to stop all antihistamines for 2weeks as it may cause a false negative or a diminished result!

Hi
Saw my dds consultant again yesterday,(very thankful to him)
It was the skin prick test
she had had piriton 3 days prior to the test.
She has a epipen due to a reaction she had to a bar with nuts in and the fact that it is difficult to get her to take piriton.

The paed has now arrange for her to have a blood test (he has told me that thuis will probably come bk as a negative as well) but that she is definately allergic.
He is also testing for Cealiacs?

He wasnt impressd with my drs or the advice they have given me
He is also going to arrange for her to have the food challenges at the hospital?

I havent kept a food diary as I am very strict with what she eats. Some of her allergies the paed thinks are airborne?

The wheezing is accompined by a barking cough and difficulty to breath. We dont know what causes the seperate rashes.
Sorry if I am rambling
Sorry for the ? marks but still very confused
Thank you for replies and all advice and help is really appreciated.

Paed has said to keep her egg,dairy,soya,wheat,gluten and nut free till he sees her again in 2 months.

Allergies are a pretty complex area, tbh - not surprising you are confused, I am only ever surprised when people think they are simple (and I have a masters in immunology but it's quite old now and things move on fast).

However - the skin prick tests are a good guide and that's all. They are not a definitive result. It is possible that your DD's immune response has not been activated because it hasn't been challenged by these antigens for some time; or that she doesn't have classic anaphylactic allergy but a strong intolerance that can still cause severe reactions.

Coeliacs disease is a gluten intolerance (not allergy) - it is an immune reaction to the gluten that causes damage to the villi in the small intestine, to the eventual extent of flattening them completely. This can cause real problems with digestion, which can also appear to involve other intolerances as the brush border enzymes needed to break down other food components are no longer available due to villi destruction (lactose is a common co-intolerant)

It is wisest to keep her off the trigger foods regardless - difficult though that may be.

I trained with a girl who had allergies and an epipen - she got quite stressed during the training and ended up having a new "allergy" every week, pretty much - at least 3 times we had to call an ambulance to her because she was reacting so strongly. But they weren't all new allergies, her immune system was just on "red alert" and cross reacting with almost anything.

Got to go - Ds just woken - HTH despite being a bit rambly.

Thank you
Every bit of advice helps.

I am feeling abit more positive since seeing the paed and reading peoples answers.

I think it all just got on top of me
Thank you x

Had her checked by 5 differant doctors for croup and whooping cough,they all said no.

My dd is 19 months
Her reaction to nuts (it was a cashew bar with orange) (the only other thing she had had that morning was a banana) The wheeze started then the cough then puffy ness? of the face after 20 mins approx a rash.

I am going to start a food diary as i need to know the triggers (if any)
She has been milk free since 5 months old (took the paed that long to see her) She reacted to nutrimigon,instantly and has been on neocate ever since.

thank you for all your replys

I presume the paediatrician told you that the coeliac test will be pretty unreliable if she is off gluten? She needs to actually have gluten in her diet to show the damage it can do to diagnose coeliacs, unfortunately. When is she due to have the test? She might have to go back on gluten for a while prior to the test - worth finding out or the test could be pretty meaningless.

she is having the blood test on the 12th july, the paed has told me to re introduce from the 5th.

I did try to reintroduce gluten a few weeks ago and she was hell so i am not looking forward to it

i dont think i could cope with her being back on gluten for 6 weeks.
The Paed said if she was that unbearable back on gluten then not to worry. He is almost certain that the blood tests will come back negative. He did say something about her ige? and that she will be one of the children that they would have to diagnose by history?
She is 19 months.
I dont go anywhere without her epipen or mine
(i am allergic to wasps)
I think the thing that scares me is not knowing what makes her react. I know how I felt after a wasp sting and dont want her to go through that

So long as they give you a diagnosis - because then you can get gluten-free foods on prescription. Although some of them are not as good as those you can buy from supermarkets, if I'm honest.

Keep doing what you're doing - if it's working for her then there's no reason to change it.

Oh - and can I suggest you keep her away from sesame seeds/oil as much as is practicable as well? Can be quite a common allergen in people who have the allergies you have listed in the op. Chick peas possibly too - there was a thread about that a few weeks back - it's a common allergen in cultures that eat a lot of chickpeas.

Thank you for all of your replies.

We have been getting gluten free food on prescription for about 2 months now and that is without a diagnosis but trying to find food with everything free has been a nightmare