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.
We discussed the only test Zac had ever had – the Coeliac blood test. That had come back negative but he felt that it was not a very ‘sound’ result as Zac had only been eating gluten containing foods for a few weeks running up to the test, and he usually advises it to be several months. Zac had been very ill throughout those weeks and ended up in hospital at the end of it, so that seemed to point even more to an allergic response than typical Coeliac symptoms.
However, he did mention that as well as the blood tests for food allergies, Zac should also be screened for two genes that can help rule out Coeliac disease. I had never heard of this before, so looked it up.
Here is a link to the Coeliac UK website, which explains it a bit better.
According this article – ‘About 90% of individuals with coeliac disease will carry the DQ2 gene and most of the remaining individuals will carry the DQ8 gene. These HLA genes are associated with approximately 40% of the heritable risk of developing coeliac disease.
Testing of these genes cannot be used to diagnose coeliac disease as these genes are also present in people without coeliac disease. It is unlikely that someone would have coeliac disease if they do not have these genes.’
So, to me it looks like this says, if Zac does not have these genes, coupled with the negative result it is highly unlikely that he has Coeliac disease. So that is still an answer isn’t it? Surely tests are as much to rule things out as confirm?
If he does have the gene, perhaps they would reconsider his reactions to wheat and gluten, and remember that the wheat allergy tests were negative, so then would it be safe to assume that he probably does have Coeliac disease. Or perhaps it all points to the non-IgE mediated allergy that was also considered. http://www.nhs.uk/news/2011/02February/Pages/new-NICE-guidance-for-child-allergies.aspx#allergy
When we met the dietician at our last hospital appointment, she asked if he’d had the gene test, as she also felt it was a worthwhile exercise, and she noted that Dr Fox had requested it. I explained that ‘for some reason’ it was missed. In fact, when they ran the first lot of food allergy tests, I received a letter to say that despite taking four vials of blood, they did not have enough to complete the tests and requested he return for skin prick testing to get the rest of the results. Needless to say he is now terrified of nurses and needles, so I am not sure how we are going to persuade him to have one more test, but I really feel it is important that we do.
So as the hospital has said they don’t need to see him again for another six months, and advised us to keep him on his very restricted diet, I have called my GP surgery this morning to demand this test. As usual, they have shown little interest in this case and even though Dr Fox wrote to them requesting all these tests, they have not once called me to discuss the results or question why the tests were not complete. Again, this proves why the Allergy UK Nurse campaign is so important. https://feedingmyintolerantchild.com/2013/04/28/supporting-the-allergy-uk-nurse-appeal/ It is all too easy for people like us to be cast aside by the doctors who are simply not interested in this kind of case.
If the GP won’t comply then I feel I will have to call the hospital again and possibly fork out for another private appointment with Dr Fox. It just feels like such a battle all the time and if I don’t keep fighting absolutely nothing will be done.
If it does emerge that he has the gene, then we could be looking at the possibility of him being entitled to gluten free foods on prescription and I cannot help but wonder if that is the deterrent. Are the doctors avoiding testing, to keep the numbers low and save the NHS money? If that is true then that is a huge scandal and should be investigated and I promise I will do all I can to stir it up!