Testimonials

Food allergies are NOT the same as food intolerances

Fact: Unlike food intolerances, food allergies are “IgE mediated.” This means that your immune system produces an antibody called immunoglobulin E (IgE for short) when it detects a food allergen. IgE antibodies fight the “enemy” food by releasing histamine and other chemicals. These chemicals then trigger the symptoms of an allergic reaction.

Food intolerances do not involve the immune system. And while they can cause great discomfort, they are not life-threatening. A food allergy, on the other hand, can be fatal. (Source:  Food Allergy Research and Education (FARE))

Testimonials

Thank you to our allergy parents for sharing thier stories.


Our Testimonials

S was always a very sickly baby, always grumpy, never slept, very high needs. She wouldn’t settle in a pram or bouncer never happy to sit and play on the floor. And once weaning started she never ate more than a mouth full.
At 18 months I was looking at ingredients for no real reason and saw EGG in the list and it clicked. What if all her unhappiness no sleeping and reflux issues were actually egg related? So after beating ourselves up we binned everything in our home that contained egg, she seemed to get happier her sleep got a little better she started to finally eat a little more food.
I trawled the internet for advice but struggled to find much. I found a few the groups, but they were mainly American based which made it hard to get replacement food advice. Family and friends didn’t believe us and would say “oh a little cake won’t hurt" or “don’t you think you’re being a little OTT"
We have now found that her reactions have intensified, and she only needs a small amount to make her violently sick. We are also going on our first foreign holiday and that fills me with all sorts of emotions.

Thank you so much for the opportunity to contribute to this resource.
Neither of our families have any experience with food allergies whatsoever. So C and I had to reply completely on medical advice which at times we found extremely confusing.
I found the whole experience of coping with a baby with CMPA extremely hard and at times frustrating. Mainly, as G never dropped his growth centile he was deemed as 'thriving'. However, despite me mentioning on countless appointments that he had a host of symptoms that I felt were indicating he was in discomfort - I really didn't get any advice that pointed to CMPA.
We only realised the culprit was milk when he started weaning at 6 months. He then had an acute reaction which led to quick diagnosis. It was later concluded as G was breast fed his exposure to milk protein was minimal hence why he never dropped a centile.
I have to say that was achieved by relentless feeding. He was feeding little and often and very very slowly. The quality of life we had with him first six months was not great. I can make that statement freely now as I've had same issue with my second baby and i've stayed dairy and soya free and it's been a completely different experience.
Our families labelled G as a hard and needy baby. His reluctance to be led down (now we now he had silent reflux), screaming at car seats, hating the pram etc was down to allergy symptoms. As a new mother I found myself following my instinct and keeping G comfortable. He was carried a lot, slept upright in my arms, held by his Dad. We allowed him as much time as he needed for a feed. I'm glad I followed my instinct sadly to detriment of my relationship with in-laws at times.
Since the diagnosis it's been a challenge going up the milk ladder as it appears G just isn't developing tolerance past step 2. It's now been determined he should stay off dairy for nursery meals and we need to keep trying him on the ladder.
As again he is in good weight and developing well we are unable to access any further support as he was signed off paediatrics.

I started noticing something wasn’t quite right with C when he was about 2, unexplained sickness and diarrhoea, extremely sensitive skin and prone to reactions. I started to keep a food diary and after a while realised that it was possibly egg that he had an allergic to. I took him to the GP which didn’t go well I was told to keep trying him with foods that contain egg so he builds up an immunity to it. This was difficult due to C being an extremely picky eater anyway.
We had numerous trips to the GP with the above symptoms and none of them could make a diagnosis or would do a referral. During this time C noticed that trying new foods seemed to make him poorly which meant he restricted his own diet even more so.
Fast forward to the age of 4, I got a job at the GP surgery and built a really good relationship with one of the doctors, she seemed to listen to us and made a referral to immunology. It took us 9 months to be seen but it was confirmed a definite egg allergy along with cat and dog hair. The immunologist gave us antihistamine and an action plan to keep C away from eggs then to slowly start introducing egg back into his diet and see if he could tolerate.
I’m sure as a Mum you can understand that you cannot control absolutely everything that your child is given to eat and egg is present in so many foods. I had to be very strict with where he was going and what people were giving him to eat.
C was invited to a football party with some friends, I took him along and gave the Mum my number for emergencies. I had been home 10 minutes and she rang saying that C has tummy ache and felt sick after being given a marshmallow. I rushed to collect him. I got him home just in time before the sickness and diarrhoea started, I had managed to get some antihistamine in him too but something was different. He was almost frothing from the mouth and couldn’t talk, face was bright red and crying in pain. It was then I knew he was having difficulty breathing and this reaction was a lot more severe than it ever had been before. I rang 999 and within 7 minutes the paramedics were with us. Because I had managed to get some antihistamine in him that seems to of been the thing that saved him I think! We were taken to A&E as a precaution.
We managed to get an urgent appointment back with the immunologist. He had the skin prick test again with an extremely nasty reaction and we were given epipens and antihistamine along with an emergency action plan without hesitation.
This has caused other problems with C though, he now uses the allergy as an excuse not to eat, I can count the amount of different foods he will eat on my hands, he is underweight and very pale. A major worry for me as a Mum I feel like I am failing him sometimes. C can have no egg whatsoever, cooked or raw, white or yolk he has an allergy to it all.
Food shopping takes a long time nowadays!

Nobody in my / my husband's family have any history of food allergies (just eczema, asthma and cat fur allergy) so when G developed severe eczema at 3 months old and became extremely fussy, constantly feeding in small amounts and was unable to sleep properly due to itching we had no idea there was a link to food allergies. It was torturous to watch and although some of the health visitors suspected food allergies every doctor I spoke to said there was definitely no link, you either have eczema or you don't and prescribed antibiotics for his constant skin infections. We also found that G was constantly unwell with various things and this sometimes resulted in us driving round in the early hours of the morning with him in the car just to allow him to drift off to sleep as he was so uncomfortable. It was a very stressful time for the whole family and we saw doctor after doctor, tried so so many different creams for his eczema and bought him silk scratch mitts so that we didn't have to stay up holding his hands through the night to avoid him cutting himself.
Fast forward to 7 months old and he was still so uncomfortable, suffering terribly with eczema and was on a 2 week course of antibiotics for scarlet fever. He was really really poorly but his favorite meal at the time was beans on toast so I gave him some just to try and get him eating a little and he immediately became really distressed, started screaming and just didn't know what to do with himself. I was confused and a moment later he projectile vomited it all up and when he looked at me I saw his lips had swollen up HUGE! I panicked and rang an ambulance. They were really good, treated him and took him to hospital for a while. In the back of my mind I knew beans and peanuts were related and was worried he'd be allergic to peanuts too so was too scared to try him on them. It was all very baffling as he'd eaten beans with no issue for about a month then suddenly had such an extreme reaction.
A few months later we saw an allergist at the hospital who advised we try him with some peanut butter at home but did not want to test G for any other allergies because of his age. The next day I cautiously put the teeniest dab of peanut butter on my finger tip and put it in his mouth. He reacted immediately to such a tiny amount - projectile vomiting, swelling up and this time his airways swelled causing a scary croupy noise. Once again we called an ambulance and the crew again were amazing but I really don't understand to this day why the allergist didn't advise we try him with peanut butter at the hospital!
His list of allergic reactions and allergies grew over the next year to more legumes, tree nuts, fish, sesame, egg, wheat and some random ones like banana pineapple and melon. He often had allergic reactions where we could not identify the cause. The most severe of his allergies are peanuts and tree nuts. Eating out became virtually impossible and I would be too anxious to enjoy it.
I feel sorry for him at times as he is sometimes left out of activities due to his allergies (e.g. cake baking) and I just want him to have a normal life so have been doing lots of research into Oral Immunotherapy (OIT). Treatment has just started in the UK in CambridgeAllergyClinic for peanut allergy but costs approx £22,000. I have been looking at ways of getting treatment over in the US but there are pros and cons and there is no standard length of time for the treatment. I am hopeful that the treatment will start to become more common here in the UK and that other treatments may become available over the next few years with so many pharmaceutical companies putting drugs / patches through trials. As time goes by my anxiety levels have improved and we do enjoy meals out together now in some restaurants and pubs (with a bit of careful pre-planning! :) )

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