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.