A bit more on Histamine Intolerance – the lesser known condition 7

Allergic reactions – but negative blood test results. How is that possible? I know I am not the only parent/person faced with this puzzle. I belong to a few ‘allergy groups’ on Facebook and have got to know a few other bloggers and sufferers over the last 12 months have discovered that there are many of us in the same boat.

We all feel we are going crazy, because we have such real reactions and yet it is so difficult to get doctors to believe there is anything wrong. Then you have to beg and plead for allergy tests. If/when they finally relent and you go through all that stress and receive negative blood test results – should you stop or continue to strive for a diagnosis?

We only got our allergy tests after 4 years, 3 hospitals, a public spat with my MP and giving up altogether on the NHS and forking out for a private appointment with Dr Adam Fox. So you can imagine that we were kind of hoping for vindication and positive results, at least then I could turn round to my GPs and say ‘see, I told you he was allergic’. But that didn’t happen and to be fair Dr Fox did warn us that this might happen – but because he is brilliant, he took the trouble to explain why.

Zac is one of the many, many children/people whose condition is more to do with his mast cells than actual specific allergens. He mentioned eosinophilic disorder. There is a support charity for sufferers of this condition that explains it all well. http://www.fabed.co.uk

Here is a quote from the site: ‘ Put simply, Eosinophilic disorders occur when eosinophils (a type of white blood cell) are found in above normal amounts in various parts of the Gastro-Intestinal tract. When the body needs to attack an allergen, eg: an allergy triggering food or an airborne allergen, eosinophils respond by moving into the area and releasing toxins, and in usual cases protecting the body.

If the body produces too many of the eosinophils, they can cause chronic inflammation in the affected area. This can lead to damage to varying levels of the tissue in the affected area.’

And that in a nutshell is what he suspected was happening to Zac. He had many of the classic symptoms. http://www.fabed.co.uk/symptoms.html

Aside from the tummy troubles, when he used to eat dairy, wheat, we had over time noticed that he was becoming very sensitive to fruits and grass. Both caused chronic itching . Dr Fox demonstrated his dermatographism  http://en.wikipedia.org/wiki/Dermatographic_urticaria by running a pen gently on the inside of Zac’s arm. The red line that jumped up was his body sending eosinophils to the area and releasing to create the mark. He also remarked that Zac looked sweaty and was that normal for him and we said yes. His itching (http://en.wikipedia.org/wiki/Itch) and excessive sweating are all additional symptoms and all absolutely connected.

So when we talked about Zac’s skin infections, he explained that it was most likely these cells that were causing this. Looking again at that definition, it does make sense. ‘If the body produces too many of the eosinophils, they can cause chronic inflammation in the affected area. This can lead to damage to varying levels of the tissue in the affected area.’ So this obviously happens on Zac’s skin when it gets damaged whether by a cut or scratch or spot or insect bite. There is no doubt he suffers chronic inflammation at the site of the ‘wound’  and that is why he gets infections, the tissue is damaged by his body over reacting to the problem.

The most recent episodes and negative blood test results have confirmed this diagnosis in my head. We are now going back to see Dr Fox in September to update him on all that has happened since we met. I also hope we will come away with a plan on how to deal with it. Just yesterday, an insect bite on his calf has gone from ‘being normal’ to swelling up so that his calf is almost completely covered in a huge red blob with a very nasty looking head on it.

He has also had some chronic itchy episodes after rolling around on the grass playing with his sister on the hot days. His blood tests said he was not allergic to grass, but within minutes of his naked flesh touching the grass he was clawing away. He has also recently stopped eating nectarines because they ‘make my mouth sting’ – but his skin prick tests on the fruits all came back negative.

So I decided to find out more about it, why is fruit and grass so troublesome. In my last post I shared a link to the Allergy UK page about Histamine Intolerance. http://www.allergyuk.org/common-food-intolerances/histamine-intolerance

This explains it very well. It gives a list of the foods and products that are high in histamines or cause the mast cells in the body to release too much histamine leading to itching, sneezing, vomiting etc etc.

The fruits that Zac reacted too so badly in the past are all in the second list. As are many that he still eats regularly and would account for why he is still a bit itchy somedays, even though he has a daily dose of anti-histamine and I thought I had eliminated all triggers from his diet.

As you will see, if you are histamine intolerant, and react to most things on this list, it becomes very hard to see how you can sensibly manage your diet and that is why we all need a good deal more support from healthcare professionals before trying to ‘fix’ this. Dr Fox suggested we see a dietician asap. The NHS one we saw was poor, so we are now going to see if we can afford to see one privately, but I am going to wait and see what he says before we start removing even more foods from Zac’s diet.

He is already on a multi-vitamin, which I am sure helps a lot, I do my best to make sure his diet is as good as it can be, but I think that we may have to consider more eliminations if we are ever to conquer the itching and scratching and skin infections. It is very likely that the recurrent skin infections are caused by him scratching too hard. So we need to stop the itch. We have conquered the gut trouble by eliminating dairy and wheat, but now I fear that we are going to have to look long and hard at the fruit and vegetables in his diet to successfully stop the itching. Gulp.

So, I have written this post – not wanting to scare you all but to share with you my hunch and our experience. If you are also experiencing ‘allergic type’ symptoms but are not sure why, it might be worth looking at the triggers on this list and keeping a diary of what happens if and when you consume them. Then you can approach your GPs etc with your evidence. If you get blood tests and they are negative, do not give up, because it could be that the negative test results are actually valuable because they are pointing to a different diagnosis – they are NOT saying that there is nothing wrong with you and you are not experiencing allergic symptoms. You know best.

So for all those people who are suffering with hay fever and wondering why the anti-histamines are not doing much, it is worth re-visiting this list. It might be that you are overloading your system with ‘summer fruits’ in a bid to be healthy but it is the fruit that is affecting you as much as the pollen. And here is the final nugget – fruit is pollen. I don’t know why I didn’t think of it before. I heard it in a healthcare podcast debate on the hay fever explosion. I can’t believe it hadn’t occurred to me before.

Of course it is pollen – it comes from seeds and trees and bushes and fruit trees etc rely on cross pollenation to produce their flowers/fruits. No wonder strawberries are such a problem and can cause instant oral reactions – their ‘pollen’/the seeds are all over the outside, so when you put one in your mouth, your confused body detects pollen and sends histamine flying to the site! I guess that is why Zac says some fruits sting him. I thought he was being fussy and just reacting to the citrussy sharpness, but he probably does experience a sting or itch because so much of the ‘pollen’ is in the skin. So probably best to peel them in future! Or avoid all together.

So for any of you dealing with these kinds of symptoms in yourself or a loved one, don’t be put off by the doctors. You may have histamine intolerance. It is real and you should not be made to feel like a hypochondriac. Just try and get it checked out. Best wishes.

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7 comments

  1. Thank you for this post Nicola. In my desperate search for answers for my son I have come across histamine intolerance but your article explains it well and thank you for the links. We are still on our journey, no one wanting to listen but I am becoming more and more educated each day about my son’s coeliac disease, blood sugar control and the dangers of fructose – like you we have always eaten lots of fruit but I now realise too, that this is not as healthy as it has been suggested. I find out tomorrow if our referral to GOS has been accepted – if not you may too see me in the press!! Thank you again for your website and invaluable advice and support Tora x

    • Hi Tora. Many thanks for getting in touch. I am really glad you found this interesting and potentially of some use. Sounds like your little one (and you) have plenty to deal with. As usual shocked but not surprised to hear how poorly people are treated. Really hope you get that referral. If not, let me know and I am happy to tweet or blog my support for you etc. Best wishes. Nicola x

  2. Hi Nicola!
    I’m a mom of an intolerant little guy, too. 🙂 We have mast cell activation disorder, though. You mention mast cells briefly here, but more on eosinophils. Eos and mast cells do tend to congregate together, and many kiddos have higher levels both when they have an increase in one, especially in the gut…but I am curious if he talked about mast cell activation syndrome with you at all?

    I have some slides I shared at the national conference for mast cell disorders last fall, that have some information about helping lower a histamine overload.
    http://www.slideshare.net/tiffanyblackden/working-with-histamine-overload-april-2013-20158082?from_search=1

    It helped our little guy a LOT. We haven’t had to medicate in some time, but we’ve reduced his overall chemical burden, and been really vigilant over his diet. He still reacts when he gets exposed to chemicals that bug him, but our life is so much more calm, and his health is SO much better!!

    Oh, and these are some of the non-IgE mast cell triggers…do you know about these?

    http://www.mastocytosis.ca/symptoms.htm

    Wishing you the best, for your little guy!!
    Blessings,
    Tiffany

    • Thanks so much for getting in touch. Your slides are absolutely amazing. So helpful. Well done you for working so hard to get to grips with all this for your little man. Like you I am curious as to which condition Zac’s symptoms will be attributed to when we meet the doctor, as they were all put forward as possibilities. But in short, I think more people need to understand that the reason for the ‘allergy explosion’ is very much driven by our environment these days and is not a whole bunch of paranoid mothers dreaming this up – I mean, why would you. It is more than clear that there are so many differences in how food and everyday household items are produced compared to say when we were kids, that it is little wonder that so many of our kids are suffering. An absolute overload of junk in all areas. Thanks for sharing that slide. I would love to tweet it/share it. Would you be happy with that? Thanks also for the mastocytosis link. I had seen a similar one and again, this is on my list to talk to the doctor about. Really appreciate all of this. Best of luck with everything and please do stay in touch. Kind regards,
      Nicolax

  3. Thank you Nicola. I am so relieved you are making progress (albeit through your own blood, sweat and tears rather than NHS help). This post, and the comments below, are incredibly helpful for both me and my little boy. I am awaiting my allergy clinic appointment and feel even after fighting for tests they will probably come back negative and I will be dismissed. I have taken notes and will be able to ask many relevant medical questions at my appointment and insist on more help.
    Your research has enlightened me to many links between my symptoms and will help no end.

  4. Hi folks,
    I got the diagnosis having a HI (histamine intolerance) 3 years ago. It was very hard for me because I could’nt eat certain kind of vegetables and stuff like that. Sometimes it was so hard I could’nt eat sth except of rice. I always had this weird headache and didn’t know whats going on.
    Then I found Doasin. This supplement helps me to handle my intolerance pretty easy and I have no more symptoms and problems at all!
    Hope I can help someone 🙂

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