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Allergies and intolerances

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Whats the link between milk and soya allergy? And whats ige allergy?

34 replies

WhiteTrash · 15/02/2012 09:32

I hear some who have milk allergy are allergic to soya because of same proteins. So if my son isnt allergic to soya does that mean its not the protein in milk that he's allergic to but something else?

Also I hear about ige allergic or not. What does this mean?

My son had a blood test 2 weeks after his anaphylaxis during a time he was covered in hives - urticaria so still reacting and it was '80'. The allergy specialist told me nothing. In fact I diagnosed hus 'eczema' as urticaria after weeks if research and after I called her to say she said "Oh yeah, we thought that.". So she, excuse my language, is absolutely shit for us. So despite my extensive research theres still some stuff im hazy on.

I asked to be referred to someone else only to get the appoinment through to see the exact same person. I cancelled it. A friend saw the same person recently and came away equally as flat, let down and none the wise to her daughters allergies.

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Iggly · 15/02/2012 09:35

The proteins are similar, not the same, hence the likelihood of reacting to both. It doesn't mean it will definitely be the case.

I don't know about ige.
Can you make a complaint about this person??

eragon · 15/02/2012 10:59

IgE levels are measured in the blood test, higher level than normal indicate allergy. A blood test to explore causes of food allergies is called RAST. Skin prick tests are also carried out, using the protein in the food, in very , very small amounts pricked in to skin.

Allergic reactions happen when a food protein enters the blood stream, by eating or rubbing in to eye, or in the case of hay fever, when breathed in for instance. The body mistakes the protien as an illness or virus and the mast cells that attack an infection , realease histamine. Histamine has nothing to fight, and causes two main serious effects on the body.
It causes the small blood vessels to dilate and loose blood, and produces symptoms like lowering blood pressure, dizzyness, feeling faint, and is a serious symptom.
It also causes smooth thick muscles to narrow and contract, and this can cause the small tubes in lungs to narrow (asthma) or cause the muscles in throat to narrow, constrict or block.

Other visable symptoms are the hives, the swelling and vomiting and loose bowel.
understanding these symptoms and how to treat them is important, the anaphylaxis campaign can help with this , please ring their help line. I have , many times over the years!

Milk allergic children used to be given soya formula milk, but this was found to be not recommended. As soya is a legume, like peanuts and can cause more problems within this food group, also other problems found in soya milk were proved to be unhealthy, but i cant quite remember why, sorry.
Now infants with IgE response food allergies are given formula that has totally changed protein strands, such as neocate and others.

Treatment for those having anaphylaxis is normally an epi pen or ana pen, whcih give a small dose of adrenaline which given early enough works well. If epi pen is required, hospital visit is needed every time. A epi pen is not a cure, and sometimes reaction can start again, so hospital need to check lung function, blood pressure etc, and give oral or drip steriods to control the reaction. after discharge from hosptial these steriods are continued for some days afterwards to prevent reaction from returning.

a good book to buy is 'the complete guide to food allergy and intolerence' by proff j brostoff , published by Gamlin.

when you go back to this doc, take a list of questions with you and go through it one by one. good luck.

freefrommum · 15/02/2012 14:00

Just to make it very clear, just because your DS is not allergic to soya does not mean he's not allergic to milk protein. It's simply that about 50% of children allergic to cow's milk protein are also allergic to soya so the guidance for medical professionals is not to prescribe soya-based formula to babies with milk allergy. There are also concerns about the phyto-oestrogens in soya milk and therefore it is not recommended for babies under 1 (especially boys).

I would contact the hospital again and make it very clear that you want a second opinion from a different consultant not the same one. This might unfortunately mean going to a different hospital as many only have one paediatric consultant that deals with allergies. eragon has explained about the IgE blood tests and this is the scale for interpreting the results for specific allergen tests:
100.00 : ALLERGEN LEVEL 6 - EXTREMELY HIGH LEVEL OF ALLERGEN SPECIFIC IgE
These results are for specific allergen testing (eg milk, wheat etc) NOT for overall IgE level testing as this is different. Was your DS's blood test for milk specifically? If so then, as you can see, a result of 80 puts your son in the allergen level 5 category (very high). Tests for allergies are sadly notoriously unreliable and should not be taken as evidence of an allergy (or lack of) on their own without further information such as patient history. Given that your son had an anaphylactic reaction and his IgE was so high then it's pretty safe to say that he has a severe allergy to milk. Have you been prescribed epi-pens? If not, you need to push for this urgently. You should also carry anti-histamine medicine wherever you go for mild reactions like coming out in hives (normally due to touching something that's had milk on it). There are new NICE guidelines about diagnosing and assessing food allergies in children: guidance.nice.org.uk/CG116. You might want to quote them to your local health authority to spur them into action!

WhiteTrash · 15/02/2012 16:26

Thank you. This is what has confused me. He was definitely not tested for individual foods.

They wanted to but the results came back as this : Hes too young to be tested for individual food allergies (unless we want to do a skin prick test) but his ige is 80.

Does that then mean hes very allergic to everything? (he really isnt, just milk and eggs). Could it be that at the time he had urticaria, i.e had very reactive skin as an aftermath of his anaphylactic reaction 2 weeks before?

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freefrommum · 15/02/2012 16:42

In that case, I'm assuming he just had a total IgE level blood test and in fact I'm pretty sure 80 is not considered high (my DS's overall IgE is 3000 believe or not!). I know that for adults, anything up to 100 is considered 'normal' but I'm not sure what the range is for children sorry. My DS's specific IgE results are over 100 for milk, 63.5 for wheat & 73.9 for egg. I don't understand why they couldn't do specific IgE allergen testing but I would definitely ask for skin prick tests.

WhiteTrash · 15/02/2012 17:09

Thanks loads for making this clearer for me.

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babybarrister · 15/02/2012 17:56

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Message withdrawn at poster's request.

freefrommum · 15/02/2012 19:01

Overall IgE levels tend to be highest in those with eczema as well as allergies I believe.

WhiteTrash · 15/02/2012 19:07

Really. Every inch of his body was covered in horrific eczema at the time. Its far more under control now though. We had an awful urticaria/eczema 2 month battle.

More than likely will happen next time he has anaphylaxis too.

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freefrommum · 15/02/2012 19:14

Hopefully there won't be a next time :)
Push for the 2nd opinion and skin prick tests. You do have epi-pens?

CasaBevron · 15/02/2012 19:32

Someone on here once linked to this page which I found helpful in understanding DS's RAST scores. Apologies, I can't remember who it was, I just saved it to my favourites at the time! There is information at the bottom of the page that shows how each food has a different igE score to indicate whether a reaction is likely, and how likely.

Sorry if this has been asked before WhiteTrash, but whereabouts in the country are you roughly? If you are not happy with the care you are receiving you are quite within your rights to ask to be seen elsewhere, even if it is outside of your local area. We are under Adam Fox at Guys and St Thomas's, even though we live a couple of hundred miles away. I figure it's worth the treck to see a proper paed allergist (or one of his team) as opposed to a paed who has an interest in allergies - not the same at all!

I agree with freefrommum, I would be pushing for skin-prick testing. RAST and SPT combined can give a much clearer picture than RAST alone. DS was RAST tested at approx 3 months and had SPT at approx 6 months. Although the results are not necessarily as accurate as they would be when the child is older, testing is always possible - and really helpful! I had been avoiding wheat for months (breastfeeding) as DS's score was elevated, but SPT showed nothing and he now eats it with no problems. By the same token, he had a positive weal to cashew nuts so we are able to avoid them without having to find out the hard way that he is allergic. Don't let the docs put you off Smile

youarekidding · 15/02/2012 19:35

My DS has suffered a bout of chronic urticaria as well as having allergies. During this time we had to use oilatum and soap free products, non-bio etc. I was told that chronic urticaria can happen in people without allergies and is idiopathic usually so there may or may not be a connection. We just used extra AH during this time.

My DS overall IgE was 'normal' (no idea of actual levels) but his eosinophil count is raised. I would ask if they tested this as it's an 'allergic disease marker'

How old is you DS? I can't see any reason why they couldn't do RASTS for milk, egg because he was already having a blood test and having been exposed to the allergen there would be a IgE response if allergic.

I second what everyone has been asking - do you have epi-pens?

WhiteTrash · 15/02/2012 20:00

Sorry people have kept asking me that, yes we have one epipen.

My son is nearly 9 months old but was just turned 5 months when the anaphylaxis happened. The egg thing was very recent but minor in tat a minute bit of egg touched his leg which broke out in hives.

We are Brighton bound. Im not reallu sure what they can do for us anyway? I mean we avoid egg and milk like the plague now. I asked the allergy specialist if doing a skin prick test would set of his urticaria again and she said 'it shouldnt do'. Having already been let down by her her lack of confidence was enough for me to refuse. By that time by baby had been through months of hell and I wasnt willing to risk it again.

What I thought I might do is ask for a skin prick test in September when his epipen runs out (they dont last long do they??) see the severity of it then and do it again when he's two to compare. Does this sound like a fair enough idea? They were so crap I know they cant help us in any other way.

That said, when I do the above I'll ask to be referres somewhere else. Eastbourne possibly.

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CasaBevron · 15/02/2012 20:16

I believe Southampton is very good and I think a few of the regulars on these boards go there. It certainly sounds as though you need to look at alternative care if you are able to. It should be the hospital that put into place a plan for your ds. Have they arranged any further appts for him? Talked about further testing at a later date? Skin prick will not do him any harm at all and would certainly prevent any further reactions in terms of as yet undiscovered allergies (hopefully there are no more but you would rather know in advance i'm sure). Sorry am on my phone now so can't type loads as am in the bath Blush and the screen plays up once it gets too steamy! All I would say is that from experience the sooner you get into the system with a good specialist the more confident you will feel about dealing with all this and the happier your ds will be.

WhiteTrash · 15/02/2012 20:24

I really wish I hadnt read that link. I always told myself he had a great chance of growing out of it. Now I have pretty much no hope at all.

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babybarrister · 15/02/2012 20:34

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CasaBevron · 15/02/2012 20:35

Oh WhiteTrash, I didn't post it to make you feel worse, I'm sorry Sad. As far as I know, milk and egg are two of the most likely allergies to be outgrown, even in the cases of children who have been anaphylactic to them. I have a family friend who's daughter had a terrible reaction to milk as a baby who is now grown out of it at almost 7. Of course it's not what you want for your child, but there is every chance of a positive outcome for your ds.

babybarrister · 15/02/2012 20:43

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Message withdrawn at poster's request.

WhiteTrash · 15/02/2012 20:46

Thanks. Sodd it I'll hope anyway. Im an over-worrier, I feel sick at the thought of him being that reactive and being at school without me.

There was a follow up appointmemt yes, but as it would have bern the skin prick test which I refused, it was cancelled.

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CasaBevron · 15/02/2012 20:48

Pressed post too soon. Off the top of my head, something like 2% of babies are egg allergic, whereas only 0.something percent of the adult population remain egg allergic.

I hope my previous post didn't sound too shouty. We are only at the start of ds's allergy journey ourselves (he is about to turn 1) but I have learned a lot in a short time from these boards, and the one really important piece of advice I was given by our consultant was 'everyone is an expert but only on their own child's experience'. I am not for one second trying to devalue anyone's contribution on here, there is tons of really really valuable stuff here and I would have been lost without it - god knows I knew bugger all about allergies this time last year - but as I said before until you get into the system and under the care of a good specialist, you won't have any idea of your child's specific needs and potential outcomes. Don't let stuff on the internet frighten you, get help from a good source and you will be able to deal with this so much better.

WhiteTrash · 15/02/2012 21:04

No you didnt come across shouty at all. You've been really helpful thank you.

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CasaBevron · 15/02/2012 21:07

Probably going to be cross-posting all over the place, this is taking me so long to type!

Absolutely you can hope, I cannot even contemplate the thought of ds going anywhere without me at this stage, I am so lucky that I have the option of being a SAHM! I too am an over-worrier, I got so stressed before Christmas with all of this that I ended up being diagnosed with mild depression and having to be referred for counselling. It's a long and rather boring story, but actually it made me give myself a kick up the arse and see that yes, this is a horrible situation and not what I wanted for ds, but there are people on here with dc's who have multiple severe allergies who cope, so why can't I?

I really would recommend the skin prick testing, done by someone who knows what they are doing it will be invaluable. As an example, ds tested negative to peanut. As egg and peanut often go hand in hand (not always, I am not trying to worry you again!) we were advised to get him eating peanut asap and to keep him eating it regularly to maintain his tolerance of it. If we had not had the testing we would not have known in the first place that he was not allergic and we certainly would not have known to feed him the stuff - I would have been avoiding it like the plague...

Anyway I am meant to be trying to avoid these boards to stop getting stressed again but I can't seem to stay away Smile. BabyBarrister I noticed that your ds had a good outcome with his peanut tests, great news that you don't have to add another one to the list.

freefrommum · 15/02/2012 21:14

Just to say that my DS is 4 and started school last September. Yes, having a highly allergic child is hard and you worry a LOT but it is possible to live a relatively 'normal' life. It's amazing what you learn to cope with and how your idea of 'normality' changes. CasaBevron's right, there's loads of really helpful advice on this forum and I've got so much support from here but it's also true that what's right for one child/family isn't necessarily right for another and you have to pick & choose the advice as you see fit.

babybarrister · 15/02/2012 21:18

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Message withdrawn at poster's request.

WhiteTrash · 15/02/2012 21:20

Oh shit I didnt know that about peanuts. I HATE that my allergy specialist was so shit. I'll make an appt for another referral next week.

Does the skin prick test hurt? Do they really scream? What was your baby allergic too? Is it severe allergy?

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