Most of the treats I featured in my last post about dairy free chocolates were recipes I’d developed, adapted or simply followed. However, I don’t always do everything from scratch. When I first started dairy free and gluten free cooking I used a few packet mixes – Hale & Hearty were my favourite. They were so good – easy to use, not too expensive and the end product was delicious. I bought mine in Sainsbury’s.
In this house, you can always tell when it is going to be a ‘bad hay fever’ day. First of all there is stereophonic snoring, courtesy of my grass pollen allergic husband and my intolerant child. It is enough to bring the plaster down from the ceiling. Last summer, Sophia came wandering into our room in the middle of the night and said she couldn’t sleep because she could hear tigers!
The other sign is that despite all the windows being tightly closed – the snoring turns to sniffing and snorting by about 5am and by 6am the sneezing attacks start. My husband is a hay fever expert, having lived with it every summer of his life. He tells me it is always worse first thing in the morning, when the pollen rises and in the early evening when the pollen comes down! In June our windows are always closed but somehow it permeates the double glazing! Probably need to get them looked at!
Windy days are also very bad and today is a very windy day and when we got to the school playground this morning, I could see we were in good company. Rows and rows of Mums in sunglasses. It wasn’t even that sunny. I know we can be a vain old bunch but just for once they were as much for function as for fashion. Clearly I am not the only one who has been told that big wraparound sunglasses are a good defence on the worst days as they act as a barrier – and in my case, hide the fact that my eye make-up is being washed away rapidly by the very itchy tears.
When we met Dr Fox in November, he agreed that the only way to successfully diagnose Zac was to run proper allergy tests. Sounds a bit obvious, but in three years of trying, he was the first doctor we met who came up with that conclusion. Alarming.
After going through his case history, he thought Zac’s reactions to wheat and gluten could either be pointing to wheat allergy or non-mediated IgE allergy to wheat and gluten, as Zac’s reactions when eating the foods seemed so sudden and quite dramatic – instant bloating, liquid stools, tummy ache and itchy skin. More…
Yesterday was a big day. Zac had his follow up appointment with the allergy specialist to discuss his blood test results. He also had an appointment with the dietician. I am happy to report it all went well.
Zac was very anxious going in for the first appointment and when we walked past the room where he’d had the blood test last time, he pointed it out and shuddered! When the bloods were taken (over 3 months ago) he was extremely traumatised. He had to have 4 vials of blood taken, from each arm. They had put numbing cream and a plasters over both elbows to prepare the skin – but perhaps unsurprisingly, Zac had an ‘allergic’ reaction to those and looked like he had been branded with a hot iron when they removed them. Rather than numbing his skin it was ‘on fire’ and he screamed the place down.
Anyway, yesterday we saw the dietician first and she was lovely. He cried when he first entered her room but she had a lovely manner and soon assured him that she wouldn’t hurt him. He’d had his height and weight checked on arrival and she said that they were perfect and she could see he was thriving. We had a discussion about his current diet etc and she confirmed that his anxieties about foods are normal and it is ok for me to ‘sneak’ foods in with whizzed up pasta sauces etc, as it is crucial we get the good stuff in him, by any means.
When Zac had his appointment at Great Ormond Street hospital, we were told of a drug that might help him – Nalcrom. The consultant, who I really respect and trust, said he thought it was something we should consider once Zac had got the blood test results. Great.
When we met our NHS consultant, she read his letter with this advice, agreed with it and gave us a prescription on the spot, before the blood tests had even been carried out. Both assured me that this could help his tummy, as it acts a bit like a ‘plaster’ on his gut. As both consultants (correctly) suspected that Zac has non-IgE mediated allergy, medication could be the answer and this is where I came up with my blistered foot analogy.
Because Zac’s tummy has been aggravated for so long, he ‘reacts instantly and allergically’ to many foods now, but he is not technically allergic to any of them. In the way that if you have a blister on your foot – all shoes are going to rub. It is the same for him when he eats. Most days he has a distended abdomen no matter what he eats, and according to the consultants this drug could help with that.
It has been a while since I gave an update on Zac’s condition. This week we had a distressing new symptom to deal with and I wanted to share it with everyone – just in case anyone else is going through this and is as puzzled as me. Zac has been ill with his intolerances and allergies for more than three of his four years. I have been seeing doctors and paediatricians and dieticians since he was one and they all say the same. He will grow out of it. But the truth is he has grown in to it – he started off dairy intolerant, then became so sensitive to wheat and gluten that I suspected and still do suspect he has Coeliac disease. He is also allergic to cats, has hay fever and has started night coughing, which I know (from experience) is an early sign of asthma.
I have argued that he needs a full allergy screen and further tests. So far all he had was a blood test for Coeliac which came back negative. But previous to this he had been on a gluten free diet for months. We introduced gluten containing foods in the three weeks before the test but I suspect he hadn’t eaten enough to give a positive result. He was so ill by the end of the third week, he could hardly eat at all and ended up in hospital!
Despite all this, not one GP at our practice thought he needed to be seen again and like a fool I accepted this. They flattered me by saying how well I was managing his condition and just said I should keep him on a very restricted diet for several more years and then they would consider challenging him again.
Then in recent times we have had some accidental ‘gluten’ incidents which have told me that we still have a problem. The first one was several months ago when he had a gut bloating reaction after eating Burger King fries – which I later discovered are not gluten free. Then more recently after a supposedly gluten free, dairy free meal at Carluccio’s he was suddenly hit by an uncontrollable urge to scratch. He was literally clawing at his face. I ran to the nearest Boots and got him some anti histamine. Within about twenty minutes, he stopped scratching and fell asleep.
As far as I was concerned that was an alarmingly swift and very definite allergic reaction. So I went back and saw yet another GP and begged for a referral to a different hospital (our third). This GP was sympathetic and surprised that both previous had discharged Zac. He referred us to a dermatologist at another local hospital but warned there could be a wait. A month later and I still have not got my appointment.