Just found you!!!

[Lou C]

Hi everyone,
I've just found this site by accident, I'm so glad I did!! My son has what the paediatric consultant described as "an impressive milk allergy" We discovered this when weaning him we gave him some baby porridge which you mixed with water rather than milk, moments later projectile vomitting and hives from top to toe. The GP suggested we try just a teaspoon of normal formula, as it may have been something other than the milk, but after just the teaspoonful he had hives around his mouth and chin, and possibly inside his mouth as he cried and refused to eat for a good few minutes after (not like him, he likes his food!!!). We manage okay although not much variety, and in some ways he probably has a healthier diet as we cannot just give him anything. I am toying with the idea of the whole family becoming dairy free, as we all have eczema and are (for want of a better term) a bit mucusy!!! I also have M.E. and it has been suggested that I may be wheat and dairy intolerant, contributing to by illness. Lou xx

[Jo17]

Im new 2!
Wanted 2 reply 2 your post as i see you have ME!
I 2 have ME, suffered for nearly 5 years now.
I am on a dairy and wheat free diet and have been for about 8 months now.
It has really worked for me i havent suffered with me ME while on my wheat and dairy free diet. I wasnt at my worst when i started the diet but it has really worked for me. I suggest giving the wheat and dairy free diet a go after all there isnt many opitions in treating ME

[Copper]

Welcome to the site. Other members on this site have seen a dramatic improvement in the skin after going dairy free.

It seems as though these things often run in families - I am lactose intolerant and so is one daughter. My other daughter has problems with her skin sometimes. My mother has lactose intolerance and so does my brother. One sister has problems with her skin too.

[cnc]

Welcome to the site. :welcome:

I'm interested in the links to M.E. with wheat. I already have asthma/ overproduction of mucus caused by milk, and am intrigued about the link about wheat and ME.
Sorry I only ask as I'm barring a couple more tests being diagnosed with Post-Viral Fatigue Syndrome and am desperate for help!!

Hope you are both going to stay around and hope that the millk free (and wheat free) are helping you both.

Best wishes.

[Jo17]

Claire -
Hi, Sorry to hear you having a rough time i understand how frustrating all the tests are!
Im not sure about the link with ME and wheat! I suffered for 4 years with ME quite badly however there is no treatment except rest. My doctor was great so i was lucky however there was nothing he could do apart from treat some symptoms.
I was introduced to Holistic therapy about 8 months ago and this is how i found out i was dairy and wheat intolerant! Since the new diet i have been ok. However when i started my diet i wasnt at my worse i was able to hold down a job 4 days a week but wasnt going out etc so it defintly helped me get over the ME (I HOPE!)
Anyway feel free 2 ask any questions you like i know how isolating and frustrating it can be!

[cnc]

Decided that instead of hijacking this thread, I would message you directly!!

[Copper]

PA and I worked out that she had a wheat intolerance which was iconfirmed a week later by the tests. PA was very tired for weeks on end probably due to the wheat intolerance. I think that she finally feels better now. No doubt she will post something here if only to contradict me :)

[paranoidangel]

I am mostly better. I still need more sleep than I used to, and any physical exercise completely wears me out. But I am a lot better than I was.

It might not be helped by accidentally overdosing on things I'm intolerant to (or suddenly discovering my lactose tolerance has gone down).

[Lou C]

Hi Claire, I am a member of our local support group and have found that many people develop sensitivities to foods, partularly dairy and wheat as well as other things like chemicals, perfumes etc. it's not really known whether the M.E. causes the sensitivity or the other way round, but many people find that a restricted diet can significantly improve their symptoms. I saw a Dr privately who specialises in allergy and environmental medicine, she was recommended by other sufferers and is also an adviser to one of the major national M.E. charities. She has a website which has lots of advice and info, but I'm not sure if I am allowed to post the link? It was her who suggested I cut out Wheat and Dairy, but as yet I haven't, as to be quite honest I don't have the energy!!! Catch 22!! I've decided I am gonna start with the Dairy as I have had to find alternatives for my son Zac, I'm half way there. Feel free to msg me and I can point you in the right direction for info with the M.E.

Lou x

[Pam]

Hi Lou, welcome to the site. Although being dairy free is a bit of a shock at first you soon get used to it and it becomes a lot easier. There's no reason why the whole family shouldn't go without milk as there are plenty of alternatives and it isn't actually neccessary for a balanced diet.

I don't want to worry you but from the reactions your son has had so far it seems that he has a very strong reaction to milk and this can get worse if he is introduced to it again. Has the specialist talked about giving you an Epipen? How old is he now? You might also be advised to keep some antihistamine syrup in stock - just in case. I hope you are getting the help that you need.

[Nic]

Hi and welcome!

Just thought I'd mention, my dad runs a local ME / CFS support group and does some work for one of the national ME / CFS charities. He's had it for years - had lots of difficulties getting diagnosed in the mid 80s, is largely better but still has relapses. So if anyone needs a bit of advice, he'd be happy to help. Just pm me, and I can put you in touch.

Nic

[Lou C]

Hi Lou, welcome to the site. Although being dairy free is a bit of a shock at first you soon get used to it and it becomes a lot easier. There's no reason why the whole family shouldn't go without milk as there are plenty of alternatives and it isn't actually neccessary for a balanced diet.

Hi Pam, I am working towards the whole family going dairy free, my eldest son Jacob who's 9 has eczema and asthma, we hoped he would outgrow it but he seems to have got worse this last year. I took him to the GP this week re the eczema and asked if I should consider his diet, she said straight away Yes try cutting out dairy and wheat, do it as a family! My daughter who is 5 also has eczema as do I. So I can only see it as an improvement for all of us.

I don't want to worry you but from the reactions your son has had so far it seems that he has a very strong reaction to milk and this can get worse if he is introduced to it again. Has the specialist talked about giving you an Epipen? How old is he now? You might also be advised to keep some antihistamine syrup in stock - just in case. I hope you are getting the help that you need.

I am worried about Zacs reactions, no-one has mentioned an epipen, I think I will ask about this when I go back in May, it's hard because I don't want them to think I'm some neurotic mother!

Thanks for your advice.

[Lou C]

Hi and welcome!

Just thought I'd mention, my dad runs a local ME / CFS support group and does some work for one of the national ME / CFS charities. He's had it for years - had lots of difficulties getting diagnosed in the mid 80s, is largely better but still has relapses. So if anyone needs a bit of advice, he'd be happy to help. Just pm me, and I can put you in touch.

Nic

Hi Nic, which group does he run? I am on the committee for ours here in Leeds. There's a lot of us M.E. sufferers about!!!!

[Pam]

Any allergy which causes immediate swelling to the mouth can be dangerous and in some cases where a child shows a more severe reaction with a second contact this can indicate that future contact my produce an even worse reaction. This is often seen with insect stings - the first sting might cause a bit of a swelling but the next time a sting can cause a huge reaction.

I know this sounds like scaremongering and I hope that this isn't the case for you and that Zac never gets anything more than the hives around his body but it is something you need to be aware of.

Have you considered joining Allergy UK? They can give you a lot of information and also have a scheme where they can put you in touch with other people local to you who have similar problems. They have lists of where to go for help too.

[Lou C]

The consultant said we will do a milk challenge when they see him again in May, to be honext I'm quite scared. Do I refuse to let them do it unless they have adrenaline to hand. It seems that he is very allergic, I am very careful for him not to have anything but one occasion on our Holidays in Turkey I asked for plain vegetables i the restaurant after one spoonful he came up in hives round his mouth, they must have been tossed in butter. Nothing has got near him since. When my olser son has been blowing rasberries (after drinking milk) on his tummy he has come out localised hives, I don't know whether I should test a small amount on his skin before we go then if he gets the reaction I can refuse to let them do it. I haven't joined Allergy uk or anything til I found this site as I was lead to beieve he would grow out of it.

[matt]

they'll be ready for any bad reaction so will have the needed medication. they need to find out for thmselves. just tell them what happens so that they are prpared for thereaction and start small. should be a skin test to start anyway.

good luck, might be worth seeing if they will bring the test forward...

[Pam]

Don't do a challenge at home. They are better prepared in the hospital if anything goes wrong. They need to see just how severe the reaction is for themselves. If Zac has had hives inside his mouth rather than just around his mouth you need to contact them and get the appointment brought forward. If the hives went into his throat he could end up with breathing difficulties in which case you would probably need to carry an Epipen just in case. Sorry to be a merchant of doom, but I am the worrying type anyway. You know how bad the reaction has been so far and whether you need to be concerned to that extent.

[ellsie]

Pam is right. Don't do a challenge at home. This reaction is what happened to me as an adult and each time I had a reaction it got worse. You need to have anti histamine to hand for him as a first step in case he does have a reaction as this will help. It does sound like you need an Epipen and if his reaction has got worse since you saw your consultant you should try to get in quickly. One of the things that happens during the reaction is that your throat starts to close and the passages in your head like ears and nose also swell, so you have difficulty breathing. The Epipen has adrenelin which helps to counter this until the ambulance arrives and whisk you off. I don't want to frighten you but it is a very serious condition. I would try to push for an appt.