We have now had our letter back from Zac’s appointment with Dr Adam Fox at Great Ormond Street Hospital. The meeting was great and I came away feeling very reassured. Now I have my letter I feel even more vindicated for all my pushing over the years. I now feel I have something to show the GP’s at our surgery and the NHS people we are due to meet next week. No more will we be sent away saying ‘he will grow out of it’.
I am now armed with a very long and detailed letter which shows just how thorough Dr Fox is. In my humble opinion he is what a doctor, and a scientist should be. He felt that anecdotal evidence is not enough to base a diagnosis on and he explained what his hunches are and wants them confirmed with blood tests.
At the meeting and in the letter he explains that he believes Zac is likely to be suffering from ‘non-IgE mediated allergy – to milk and wheat’. http://en.wikipedia.org/wiki/Food_allergy
He has pointed out that you can still be ‘allergic’ to something without being in anaphylaxis. He said if you suffer pretty much instant reactions such as bloating, vomiting, upset tummy, generally feeling rubbish – that is an allergic reaction. Intolerance is much slower in developing and less severe.
He also said he felt that the three weeks Zac was made to eat gluten for the coeliac blood test was nonsense as you need around 6 months to make the test valid. He said that the severity of Zac’s reaction during that three weeks, that culminated in him being hospitalised with a temp over 40 degrees, a lacy skin rash and a very poorly tummy indicated a massive allergic reaction to what he had been eating. This makes him confident that Zac has an allergy to wheat, and the coeliac thing is a red herring.
However, being a thorough medic and scientist, he feels that the only way to confirm anything is with proper blood tests and to screen him for allergy against everything. The reason being that Zac is in a semi permanent allergic state and his histamine levels are permanently too high and he over reacts to everything. Because of the constant tummy troubles it is now too difficult to ascertain what the trigger is because everything aggravates a sore tummy. Think of it as a blistered foot. No matter what shoe you wear, it is going to hurt because you have a sore foot! He said an allergic persons gut is ‘sore’ and will react badly to most things, until you treat it. Apparently there is a drug which will fix the ‘sores’ on his gut and make him able to tolerate foods much more easily.
Now here comes the bit of news which pleased me but also shocked me. Coeliac disease can be screened for in blood – without having to eat the wheat!!! He said it is dangerous for Zac to do this and it was frankly reckless of the other medics to suggest I challenge him after what happened last time.
As it is apparently dangerous for Zac to eat wheat, he has said that in the blood you can screen for two ‘genes or anti bodies’. I can’t remember which. I think it is a bit like the cancer gene they can screen for these days. If this ‘gene’ or whatever shows up in your blood, and you have the symptoms, then they are usually happy that you have coeliac disease. However, if this does not show up then it dramatically reduces the likelihood that it is coeliac and is almost certainly wheat allergy. The things he will screen for are called HLA DQ2 http://en.wikipedia.org/wiki/HLA-DQ2 and HLA DQ8 http://en.wikipedia.org/wiki/HLA-DQ8
Interestingly Dr Fox says there are NICE guidelines, which explain a lot about non-IgE mediated allergy and all GP’s have been issued with them, and in my opinion no-one we met has read them. http://www.nice.org.uk/nicemedia/live/12164/50202/50202.pdf
So we are now waiting for our appointment to get Zac’s blood tested for everything you can imagine – because he also feels we cannot rule out IgE related allergy to foods such as eggs and nuts, as he has never eaten them in their pure form, e.g. an omelette or peanut butter.
What a great doctor. Even though he is so certain it is wheat allergy not coeliac, he is happy to test for both. Even though he is convinced it is non-IgE he is happy to test for both options. I guess because it is dangerous not to. You can’t mess about with allergy, because as we all know, a severe response is life threatening.
The final piece of genius advice was to give Zac a little bit of anti histamine every morning and every night. He did a basic test on Zac which proved he is dermatographic – http://en.wikipedia.org/wiki/Dermatographic_urticaria
Basically, he softly dragged the blunt end of a pen across Zac’s skin three times. Three livid ‘train tracks’ instantly came up. He explained that Zac’s body ‘reacted’ in an allergic way to it, proving his histamine levels are over reacting. Apparently this is a classic symptom in children with non-IgE mediated allergy. Along with being very sweaty – which Zac is, particularly at night. How basic a test was that? Any of the people we have met over the years could have and should have thought to do this, especially as the most recent symptoms have been skin related.
Needless to say we have been giving him the anti-histamine(a non drowsy cetirizine)and he is a different child. So much more lively. I guess he feels better now that his body is not constantly fighting itself. It also gives him a bit of protection in case he accidentally consumes, inhales or touches something that aggravates.
I am no doctor and it is not for me to tell anyone what to do, but I do think this information will be of interest to anyone having these battles. Remember you are not mad. There probably is something wrong. It can be fixed. There are drugs which can treat it and you could also be desensitised over time and effectively cured. So there is hope. We saw every GP at our practise and consultants at two hospitals, and were rejected by a third before we gave up and went private. In one 45 minute appointment we went from scrabbling around ‘in the dark’ for answers to having a full plan of action and the glimmer of hope and some concrete answers. It was the best £300 I have ever spent!
Not only has he acknowledged that we need answers about what has caused all these problems for our little boy but he also wants a full picture of what this may have done to him over the years. He has also requested we have checks for full blood count, as well as ESR http://en.wikipedia.org/wiki/Erythrocyte_sedimentation_rate, CRP http://en.wikipedia.org/wiki/C-reactive_protein, Vitamin D levels, iron studies and a bone profile. He has recommended ‘proper dietetic support’ from a dietician rates very highly. He mentioned she has some of these conditions herself and really is an expert on how to manage diet with these restrictions. He feels that we can manage Zac’s condition and ‘get him through it’ as soon as we have the full picture and can work out an action plan for the future. What a relief. It sounds like there is a lot to be done and it is not going to be fixed overnight – but it is also quite clear that he would never have simply grown out of these conditions, as everyone else said. Scary to think I almost believed them!