Hospital, societies and specialists 4

Information Websites – Useful links

A selection of links to websites that have provided me with some answers and vital information. The ones for hospitals and specialists are excellent and these were given to me by a friend who knew a child who had been successfully treated and cured of all of his allergies. She urged me to try them and I am in the process of trying to get an appointment for Zac. If we are successful, I will share our experiences with you.

 

Dr Adam Fox

Allergy UK

Anaphylaxis Campaign

British Dietetic Association

British Society for Allergy and Clinical Immunology

Coeliac UK

Cows Milk Allergy

Crohns and Colitis UK

Crohns UK

Dairy Council

Dairy Free UK

Dietary Needs Direct

Food Hospital – Channel 4

Food Reactions

Great Ormond Street Hospital

Guys and St Thomas Hospital

Lactose Intolerant

Nics Nutrition

Nutramed

Patient.co.uk

Vegan Society

Vegetarian and Vegan Foundation

 

 

 

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4 comments

  1. I went to the GP that believes in food allergies inorder to get a referrel last year. I got a second opinion and demanded skin prick tests. My daughter is 14 but has always been ill with asthma etc. and since changing her diet and not having soya/nuts and milk she is a lot better and has better control of her asthma now. If you can’t get a referral, write a letter to the doctors inorder to get listened to.

    • Thanks for your advice on this one too. I am starting to think I need to get both of my children seen and tested. My daughter is really struggling with her asthma at the moment. She is also so terribly skinny and looks far more like an allergic or Coeliac type person than Zac. She has had soya milk since she was one, as cows milk used to make her sick. That is how I was able to spot it so easily when Zac appeared intolerant of dairy. I have always thought Sophia is ok with other dairy, e.g. cheese and yoghurt, as she seems able to tolerate it in these more ‘treated’ forms but perhaps if I think of it in the context of her developing asthma, perhaps this is how it is manifesting with her. Also she is such a carb lover and actually eats a lot of wheat and gluten. She has such skinny arms and legs, which I believe is a physical sign of Coeliac, but she is well apart from that. Whenever I speak to health visitors or doctors about either of them, they look at me like I am mad, because in all other ways they appear to be thriving. I need to perservere. Thanks for getting in touch. You have persuaded me to have yet another go at my GP etc and keep going until we get some answers.

  2. ifyou suspect Coeliac in either child then demand a blood test from your GP or if you can go private. CD wasn’t even on the radar when I was getting no where with my little girls issues. Had been to GPs multiple times with different complaints. bloating, diahorrea, constipation (poor thing was on suppositories and laxatives at 2) and no one thought to suggest they were related. Eventually I pushed for a referral to go private as I thought it was her dairy allergy (she had been refluxy as a baby and on prescription formula). The specialist was the first who mentioned CD and did loads of bloods for everything under the sun, we quickly had a diagnosis of CD BUT we had to keep her on gluten until we had an endoscopy to definitevely diagnose. She is now 4.5 and thriving with so much more energy.
    So now we have O with CD and dary intolerance and E with soya, dairy and potentially wheat allergies too (not yet CD)
    Good luck

  3. Hi Andrea, Sorry for the delayed reply. I think you are right. I need to ask to get the children tested again, but I fear their tests will be negative as they both eat a lot of GF foods. Because of Zac’s condition, I have altered my family cooking so that we all eat what he eats, so apart from bread and breakfast cereal, Sophia eats mostly GF foods too. I was told if there is not ‘reaction’ to it then it might not show on the test. When I first and (last) had Zac tested, I was told to feed him ‘normally’ for three weeks. I did that. He was so ill that at the end of the three weeks he ended up in hospital, yet the test came back negative.

    I am now wondering if perhaps he is wildly sensitive to gluten containing products, as a result of the damage done to his gut by the dairy allergy. I have just been reading about a cows milk allergy that is believed to cause the same damaged to the villi as coeliac disease and presents in a similar way. I don’t know what testing is done for that but I need to get it checked out. It is just getting past the GP’s for that referral. I have tried 3 GP’s at my surgery and they just referred me to paediatricians (who were not allergy specialists) and neither of them were interested and chose not to run any tests, they just suggested keeping his diet ‘clean’ for several more years and said he will grow out of it.

    However, as we all know, you don’t grow out of CD, and what if you don’t grow out of this other dairy affected disease? What if, we start reintroducing these foods in a year and he gets dreadfully ill again? Because I keep him well, he is not ‘ill’ so I guess they have to give their time to the immediately sick kids.

    It is a hugely worrying and hard thing to do. I want to rattle some cages and push forward and get a proper diagnoiss, but as he is well at the moment and we are managing his condition so well, won’t they think I am crazy and looking for trouble?

    The more people I hear from is definitely helping me build my knowledge and is great for giving me more ammunition for the next time I do try and get him assessed. So I appreciate you getting in touch and wish you all the best with your children. Please keep in touch and keep following the blog and I will let you know how we get on.

    Kind regards
    Nicola

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