A plea for help: Get me a diagnosis

Helen Gilbert seeks diagnosis for baffling condition

Do you remember that time my tongue started to swell up on a long-haul flight? Well, it happened again. Only, this time I was on my way back from Austria. “Would you like anything to eat?” the air hostess politely asked as we departed Innsbruck for London Gatwick. Ordinarily, I’d decline but didn’t on this occasion.

I’ve previously written about the need to be prepared if you’re travelling with allergies or, in my case, suffer from bizarre reactions that cause your airway to close up. Usually, I’m well-organised but I’d been on a press trip with a jam-packed itinerary and ran out of time on the last day.

Unlike my companions, I couldn’t eat at the airport because every option contained a trigger food. And by the time I’d settled into my plane seat, I was absolutely famished. So, I did something I would never usually do while cruising thousands of feet above the ground – I bought a packet of crisps. I quickly scanned the ingredients list; potato, sunflower oil, and salt and figured I’d be safe.

Uncomfortable sensations in body

“I’ll be fine with this,” I smiled, before quickly working my way through the bag and drifting off into the land of nod. Shortly afterwards, I awoke with a start. “We’re circling because there was a bird strike involving another plane and the runway’s being cleared,” our friendly host explained.

Being an animal lover, I’d usually feel for the deceased flock in a situation like this but my mind was distracted by the uncomfortable sensations in my body. “I don’t feel right,” I blurted out as beads of sweat trickled down my forehead. “Oh no, in what way?” the PR replied. “My throat feels sticky. It’s hard to swallow.”

Now, our host was well versed in the trials and tribulations of my baffling condition. Fortunately, I’d only had one reaction on the three-day press trip; that wasn’t particularly nasty so she immediately knew what to do. “Let me see your tongue,” she demanded. Her eyes widened. “It’s enormous,” she screamed before running off to get more water from the back of the plane.

Airway affected every time

As some of you know, my peculiar tongue swelling and throat closing reactions first took hold 20 months ago and doctors remain perplexed as to why they occur. Histamine intolerance – the body’s inability to metabolise the chemical histamine found in certain foods– is one possible theory. Symptoms mimic an allergic reaction – in many people these present in the form of a rashes or itching – but my airway is affected every time, which means I must carry an emergency kit of antihistamines, steroids and adrenaline pens wherever I go.

Trigger foods include lemons, limes, oranges, mature cheese, Marmite, alcohol, anything aged or fermented. Oh, and vinegar, which is in everything – from condiments and pickles to salad dressing and makes eating out and buying lunch almost impossible.  What’s more baffling is that my symptoms also occur when I get hot (which, incidentally also happened on the flight) or do any form of cardio, so I’m constantly walking on eggshells.

Yes, I was hungry on the plane but, with hindsight, I was immensely stupid buying those crisps. Vinegar may not have been listed as an ingredient, but the production belt at the factory could easily have been contaminated. According to my immunologist, antihistamines must be taken at the onset of a reaction to halt the swelling, which can become too difficult to control once set in yet I’d unwittingly wasted valuable time in the ten minutes I’d been asleep.

Vicious circle

“Here, drink this,” the PR instructed as I scrambled for my meds. I shovelled the pills down my throat before being ushered off the plane. The reaction was pretty horrendous – my tongue remained swollen for three days, the medication wiped me out and I suffered from severe brain fog and writer’s block – not ideal for the day job.

Despite being super careful with my diet since – the reactions are now happening again almost EVERY DAY. This requires more antihistamine to control the swelling which – in itself creates a vicious circle – as it can inhibit production of the diamine oxidase (DAO) enzyme in the gut that’s responsible for breaking down the histamine in food.

Over the past year and eight months, I have deduced that certain foods, heat and exercise – even dancing – can set off a reaction but, astonishingly, nobody can explain why and my immunologist admits he has never seen anything like it in his life. He has now prescribed stronger daily antihistamine in the hope it will break the cycle of swelling, which he says is very unusual especially as it is always symmetrical.

I’m determined to try and carry on as normal but am equally desperate to raise awareness, find a reason and gain some sort of control. I’ll let you know how I get on but in the meantime, if you’re going through a similar experience or know someone who is, please do get in touch, share or comment on my post.

Someone somewhere must know the answer.

 

 

 

 

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14 Comments

  • Reply
    Amanda Johnstone
    9th August 2017 at 11:28 pm

    Great article Helen, thanks for sharing, must be a really frightening thing to be going through, and I know you have found a way to live with these things, but someone out there must have a solution as to why you a going through this. Let’s hope you the answers you need, I look forward to an update soon!

    • Reply
      Helen Gilbert
      10th August 2017 at 7:59 pm

      Thanks Mandy. Just need to be able to manage it so I can get back on track 🙂 xx

  • Reply
    Rachel
    10th August 2017 at 5:55 pm

    It must be so frightening Helen, so sorry to read this and the struggle you face with everyday things that we all just take for granted. I hope this helps you find the answers you’re looking for soon. xx

    • Reply
      Helen Gilbert
      10th August 2017 at 7:58 pm

      Ah, thank you Rachel. Fingers crossed xx

  • Reply
    Tyler
    11th August 2017 at 1:24 pm

    He tongue is the window mainly to your digestive system and organs. Planes are very dehydrating. I peeled an orange one time and 45 min later the peel was crisp. You may have already been dehydrated or had inflammation and this aggravated it. So much to learn about how to travel. Essential oils, fresh chopped fruit. Hydrationa nd more.

    A big detox will also prevent this from happening. Look into juice fasting.

    • Reply
      Helen Gilbert
      11th August 2017 at 1:33 pm

      Thanks, Tyler. Appreciate your comments. It doesn’t only happen on flights. The tongue swelling is every day at the mo, also when I get hot or exercise and, funnily enough, when I fast. I’m a very clean living kind of gal. I used to juice every day but for the past year, I’ve been on a very restricted diet because high histamine foods (like citrus fruit) set me off. I’ve also been diagnosed with an autoimmune disorder so it could all be connected. Just need to be able to draw up all the dots 🙂

  • Reply
    Donna
    16th August 2017 at 11:00 pm

    WOW! How terrifying! I really do hope that you get some answers and life can return to a small part of normal for you xxD

  • Reply
    Darryl Edwards
    16th August 2017 at 11:14 pm

    Thanks for sharing – your honesty will help those who feel that they are struggling to find a quick answer. Sometimes these things take time! Best of luck.

  • Reply
    Caroline Maraj
    23rd August 2017 at 6:17 pm

    My 16 year old daughter has very similar reactions to you. She has been allergic to nuts since the age of 3 but in the last 2 years now soya, latex, wheat, animals and the list goes on. Even heat and touch can
    Smother her in hives. She saw a professor from immunology he didn’t have any answers. She takes cetrizone daily, piraton as needed and carries epipens. Feel like we have hit a wall. Just feels like she isn’t living life to the full 😩
    Please let me know if find any answers and visa versa

    • Reply
      Helen Gilbert
      23rd August 2017 at 9:46 pm

      Hi Caroline, I’m so sorry to hear this. I was on cetirizine twice a day at one point but it didn’t stop the reactions so I was having to take the Piriton tablets on top. I was walking around like a zombie. I’ve also been prescribed steroids as well as the epipens and recently fexofenadine. My immunologist is also at a loss. It’s so tough. I’m sorry your daughter is going through this. Yes, I’ll definitely continue to blog and post any answers I come across 🙂 Thanks again for getting in touch!

  • Reply
    Katy
    8th September 2017 at 1:34 pm

    Hi Helen, I’m so sorry to hear you are going through this, and think you are being incredibly brave being so vibrant and busy! I went through a mysterious illness a few years ago – didn’t have the throat closing up but I would get visual migranes, low energy and joint pain – I did a lot of research, and found that Sulphites in food can be a big problem for me – so basically I have to try and avoid preservatives. They are also in wine, which is a pain! I did hear that citrus fruit is absolutely covered in preservatives and that we should wash them as other fruit. Also, I have always had an inkling that I am allergic to yeast and so anything very sugary means there’s a danger of yeast overgrowth for me. Also too much fermented food – vinegar, soy sauce, is a problem basically everything that is going off like blue cheese – and every preservative that attempts to stop it going off! I realise I’m off limited help here – but thought I would share with you as I really really hope you find a way through this! Very kindest regards

    Katy Manning
    From Redactive

    • Reply
      Helen Gilbert
      8th September 2017 at 6:58 pm

      Hi Katy, I’m sorry to hear that you’ve had a tough time of it. This is very interesting. I’ll definitely look into it, thank you. Did you investigate histamine intolerance too? A number of the food items that you mentioned are high histamine (although I’m not a doctor). Here’s an article I wrote on it for the Daily Mail and the symptoms can be wide-ranging.
      http://www.dailymail.co.uk/health/article-4511228/Is-love-cheese-giving-upset-tummy.html
      Also, did you manage to work everything out yourself over time or did a doctor help you? I know it’s not ideal but I guess at least if you know the triggers you can perhaps manage it a little bit better. So frustrating. I hope you feel well soon and thanks so much for sharing your story too 🙂 Take care x

  • Reply
    Katy
    8th September 2017 at 2:55 pm

    PS I thought you might be interested in this also – showing how sulphites are used in crisps.
    http://www.stmarkjamestraining.ca/breathing-emergencies/are-potato-chips-triggers-for-sulfite-allergy/
    I’m sure you will be able to do better research on this of course – Also thank you for prompting me to revisit this as I am recalling a few symptoms of my own that I may have misdiagnosed. KM x

    • Reply
      Helen Gilbert
      8th September 2017 at 7:00 pm

      Ah, thank you. No worries, I’m so glad it’s helped. I hope that you’re able to track the symptoms to something concrete. Please do let me know how you get on 🙂 x

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