THE VALENTINE’S GIFT LIKE NO OTHER

Valentine's gift

It’s Valentine’s Day 2017. Another afternoon, another specialist. This time I’m sat in front of a very jolly endocrinologist (hormone specialist) armed with my A4 lever arch file of hospital letters.  It’s been more than 14 months since my health started to horribly misbehave. The unexplained and spontaneous allergic reactions, the foot drop, the bizarre sensations in my face and fingers, the stabbing pains all over my body and the extreme heaviness in my legs. Although I’ve seen a raft of specialists, there’s been no explanation for the cause of my ill health and, in some ways, not knowing has been the hardest part.

“What’s been going on?” the consultant softly asked. “I don’t know where to begin,” I sighed, before handing over a couple of sheets of well-thumbed A4 paper. Keeping track of everything had become a full-time job in itself so I had compiled a succinct list of every clinical episode and every blood result in chronological order in the hope he would be able to glance at it and arrive at a concrete diagnosis. “Interesting,” he said. After five minutes he looked up. “Your latest blood tests have come back abnormal.” I could tell from the look on his face that he was about to give me some news.

“I could tell by his face that he was about to give me some news.”

Do you know what’s wrong with me?” I replied, heart pounding before blurting out that I just wanted the reactions to stop and to feel even 80 per cent again. “It looks like an auto-immune problem that’s attacking your thyroid,” he replied before explaining that I’d need to have another scan –  this time an ultrasound of my neck to double check that there were no suspicious lumps and bumps there.

“You’ll need to go on medication right away, have your bloods rechecked and come back in see me in a month or so,” he continued. “If you respond to the thyroxine we can discharge you and you’ll then need to be monitored by your GP  every six months.”

Now,  I’m not sure how many people would be delighted with a Hashimoto’s diagnosis but I was pleased purely because something had been identified at long last. I could have kissed him.  Hope flooded through my veins, especially as the thyroid gland is part of the endocrine system, which produces hormones that coordinate many of the body’s functions. Could this be the reason why my body was acting up? Was I finally on the road to recovery?

“Could this be the reason why my body was acting up?”

A few week later I had another appointment, this time with my wonderfully patient immunologist. My tongue was still spontaneously swelling although I’d noticed a pattern – whenever I ate citrus fruit, mature cheese, marmite, baked beans, and vinegar I’d have a reaction.

During the course of my research, I’d stumbled across something called Histamine Intolerance – a condition which causes allergic-type reactions in people who do not have sufficient levels of a gut enzyme called diamine oxidase (DAO) to break down the histamine found in foods that contain high levels.

“I’d previously had skin prick allergy tests for all sorts of things including oranges, lemons, limes, and pineapple.”

Yet all had returned negative. But in those with histamine intolerance, the results always return negative because they’re allergic to the histamine in the food, not the protein. And guess what? High-histamine foods include mature cheese, wine, beer and cider, yeast, shellfish, sauerkraut, fermented soya products, and most fish. Certain fruits also release histamine including citrus varieties, grapes and strawberries!

I enthusiastically explained my findings to the immunologist who explained that there was very limited high-quality peer-reviewed research in this area. However, he also pointed out that it was not to say that the condition did not exist and supported me in my quest to try a low-histamine diet for three months, before attempting to reintroduce the food.

So far, so good. I’m having fewer reactions although I did have one recently after eating a packet of plain crisps. The intermittent stabbing pains which occur all over my body also seem to be improving so I’m keeping everything crossed.

I have a follow-up appointment with my immunologist next month and will be sure to report back on my progress.

 

 

 

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4 Comments

  • Reply
    Sheila Dickerson
    8th July 2017 at 12:03 pm

    I have had similar symptoms and also diagnosis of idiopathic angiodema. I take a antihistamine daily and increase it if any reaction occurs. The immunologist put me on three antihistamines per 24 hrs for 6 weeks to start with and I had no reactions during this period but as soon as I reduced them either tongue ,lip or cheek swelling started. If I can go two weeks without a reaction I feel lucky.. like you, I feel the lack of control causes anxiety. Glad you did the blog as I feel I’m not the only one with these problems.

    • Reply
      Helen Gilbert
      9th July 2017 at 1:44 pm

      Hi Sheila, Thanks so much for your message and kind words. I’m so sorry to hear you’ve been suffering too – it seems we’re not alone. Since launching the blog, I’ve had lots of people contact me who appear to be in the same boat. Regarding my treatment, I was on the long acting antihistamine initially, as well as the fast acting. I’ve recently started reacting again about three times a week – tongue swelling/closing throat. Triggers seem to be accidental ingestion of high histamine foods BUT it also happens when I haven’t eaten for long periods or whenever I exercise or get hot! So frustrating. What’s the name of the antihistamine you’re on? I’m seeing my immunologist again in a few weeks so there’ll be an update under the Helen’s Health section 🙂

  • Reply
    Mary Roe
    3rd April 2018 at 6:55 am

    Hi Helen, what a fantastic blog. Relaxyaselftohealth is….I am so sorry you have had to deal with so many exceptionally worrying symptoms. I presume you’ve read Janice Joneja’s book on histamine intolerance? It’s eell worth a look if you haven’t already. All the very best

    • Reply
      Helen Gilbert
      3rd April 2018 at 7:12 am

      Hi Mary,
      Ah, thanks for your kind words Mary! Yes, I have 😊 Another good resource is Yasmina over at Healing Histamine xx

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