Non-IgE mediated allergy to wheat or Coeliac disease? 13

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.

http://www.coeliac.org.uk/healthcare-professionals/healthcare-professional-newsletters/july-hcp-exg/the-spectrum-of-coeliac-di

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!

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13 comments

  1. Wow! You ask all the questions and share the same sentiments going through my head on a daily basis. I too have a conspiracy theory over the diagnosis of coeliac disease regarding prescriptions and the use of testing regarding cost. More importantly what we are both seeking are the answers to lots of questions that could be resolved with a diligent doctor and some relevant tests. I have come across several people and articles referring to well practised tests for both gene and Ige. However, when I have mentioned them to my GP, the gastro consultant and the dietitian they have all dissuaded me from their suitability or robustness! It is difficult enough to even find out which tests you have had done let alone persuade anyone to do more.
    I look forward to a future of better understanding of IgE and non IgE allergies, intolerances and coeliac as right now there are too many people without enough knowledge and that is in within the medical profession!

    • Thanks Emma – for the lovely comment and the RT. Much appreciated as always. I heard from Allergy UK today and they are doing loads to support their Nurses campaign including wristbands and all sorts. Might be an interesting idea for your website? Perhaps this is all we can do for now, just get more allergy nurses out there because it does seem the training and interest is just woeful! Best wishes and thanks again.

      • Thank you for the suggestions I will certainly look into that. I gave donations last week in support of their campaign but I would love to do a more permanent contribution.

  2. I agree with you both and I too, am on the same journey of trying to find knowledgeable ‘professionals’ who will listen to us ‘experts’ who are living with these intolerance’s and who have years of experience which would definitely assist with any research that was being done – but do they already know some of what we know and do they choose not to listen? Brilliant website!

    • Hi Victoria. Many thanks for the comment. I am sorry to hear you are having the same struggle. An all too common story. I always find it a tricky path to tread as you can see GPs getting irritated when you self-diagnose but what else can you do? They are so disinterested and I have a horrible feeling they are being advised to discourage us from getting to the bottom of our cases. As you say we become the experts, I was even asked by one paediatrician if I had a medical background as I seemed (to him) unusually well informed!!! I just explained that when you have a two year old that is blasting out of his nappies eight times a day you make it your business to find out what is the cause and won’t rest until they are well.
      I am sorry to say, this afternoon’s appointment confirmed my hunch. The GP said that although the gene test could be carried out at the surgery, the results would come back to her and not the specialist and she had no way of analysing them. She advised us to call the hospital and request they complete the testing that Dr Fox requested last November!!! She also said that she couldn’t see that it would make a great deal of difference if we do it tomorrow, as we don’t have our next NHS hospital appointment for another six months – so in her words ‘what difference would it make’. I had to use all my self control not to bite her head off and say ‘it might just save me about £30 a week for a start, as he would be entitled for food on prescription!!!’ But I didn’t say that, because I didn’t want to appear like some loon bag benefits crazed mother with an axe to grind. I just want an answer for Zac. He is 4 and a half and he was one when I started on this journey and I think he deserves better. That’s all!!!!!
      Thanks again for getting in touch. Best of luck with your personal campaign. Nicola x

  3. Am an adult, but have been through years of trying to persist to get diagnosed with why I feel like I do when I eat wheat. NHS no help. I hate that the health service seem to abandon you if you are not obviously in daily pain/dying and don’t fit into an easy category when you ‘fail’ their blood test for coeliacs. Wish I could share some great insight……but I can’t. But here’s some sympathy and empathy.

  4. Hi MIB, Thanks for getting in touch again. I always appreciate your comments. It is shameful that they try and dodge this. I bet they hate the fact that more and more people are learning about the gene screening and asking for that – as I bet that is uncovering many more cases.

    Like you I am super sensitive to wheat and have been written off as an IBS sufferer. I have had a coeliac blood test but again ‘failed’ – but I have been gluten free for ages and did not eat enough for long enough for a sound result. Dr Fox told me you have to do it for months to get a solid result yet the GP said a few weeks would suffice. Well it will if you are looking for a negative result. Crafty devils!

    I had a flat refusal from my GP today on the gene test for Zac, despite seeing a letter on her computer from Dr Adam Fox asking for it – back in November. She actually asked me who he was, so is clearly clueless on all counts. Surely that is like a tv chef asking who Delia is? The headed notepaper was a clue so I am starting to wonder if she can even read because I could see if from the other side of her desk!

    As usual, I am sitting here open mouthed at the lack of care. Time to change surgery and start beating up some more GPs I think.

    Best wishes with your personal campaign and thanks again for the empathy and sympathy.

    Kind regards,

    Nicola
    x

  5. Pingback: Non-IgE mediated allergy to wheat or Coeliac disease? | talkhealth Blog

  6. What a….!! Crikey! Drives me potty, it really does. The NHS does frustrate me so much.
    I too have been written off as IBS. Doesn’t help, does it? I pushed to see a dietician, who was more helpful tbh. However, the gastro consultant wouldn’t see me until I did gluten challenge with another blood test. Said needed to eat wheat for three weeks beforehand. At the time, life was stressful enough and considering I get stress tummy for sure adding wheat to that wasn’t going to help. They don’t suggest any way to help you get through weeks of eating so much wheat whilst managing daily life (I know someone who was hospitalised after 2 weeks but it never was coeliacs). The coeliac org don’t recognise the respiratory/sinus symptoms I get but still the docs just seem to go: “Wheat, did you say wheat? Ah, you must be a coeliac!”

    MyItchyBoy seems to suffer with wheat on his skin a bit – esp homemade play dough at nursery. He also seems to suffer in summer with it being in the air. Still, am not even going to try to get any of that diagnosed as quite frankly, got enough to get wound up each day right now.

    Big hugs and optimism!

    • Thanks again for the comment and support. Sounds like you and I have a lot in common and so do our itchy boys. I also think that as the doctors take ‘history’ they could do more with the ‘family history’ information. Perhaps I could have the gene screen instead of Zac and that might tell them all they need to know! Not sure how I will ever get another needle in him so I might suggest it. If we ever get the green light on this. I might just email Dr Fox and ask him to beat them up a bit – failing that I might just have to whip up the press again. As it is allergy week etc, and probably Coeliac week coming up soon, might be easy to get them to come in on some press with me/us. Grrrrrr

  7. Hi, I’m so sorry you’re having such a tough time getting a diagnosis- the lack of communication between consultants and GPs can be ridiculous- they both seem to assume that the other one is doing things and nobody is. It may be worth talking to the PALS at your hospital to see if you can get them to advocate for you.
    My daughter was diagnosed with coeliac’s via an endoscopy when she was young (I blog about it here http://gluten-free-kid.blogspot.co.uk/2013/03/getting-coeliac-diagnosis-im-in-e-they.html) but the experiences with the NHS has been mixed at times. The really sad thing if you want a definitive diagnosis with coeliac’s is that you have to eat gluten, which is awful when you know what the reaction will be.
    I hope you get the support you need without too much of a battle.
    Jen

    • Hi Jen, Many thanks for getting in touch. I appreciate the advice. I did contact the PALS service at Northampton hospital when they made us wait over 4 months for a blood test result. I think I will complain about my GP surgery as we have been dismissed time and time again. Thanks for the link to your blog. Always good to read others. Best of luck with everything. Nicola x

  8. You think you have it bad? Try living in a Big, Northern (Underfunded / Corrupt) city..

    But I think you are hit the nail on the head here! **

    Think about it, If the TRUE amount of Gluten/Wheat allergic people were diagnosed the Nhs would be seriously strained by having to give everyone gluten-free food subsidies. There is a definite cover up of this going on and they are telling people to continue damaging themselves and that they’re fine (It’s all psychological)

    What about all the people who do not test positive for the blood test but when getting a endoscopy they have noticeable inflammation / damage.

    The Nhs needs to be investigated.

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