UKH

I saw a post last year (Graeme?) about alpha gal - a supposed allergy from tick bites I had never heard of!!

I have just been diagnosed with alpha gal allergy. 
 

Multiple tick bites in summer of 2019 (and again in 2020) while hiking in Kintail and Skye.  Never gave it another thought.....until I had multiple allergic reactions over 8 months getting worse and worse. Itchy rash all over body (hives) swollen tongue & lips and problems breathing - always during the night. I now know it was always after eating a steak or lamb - usually pink. 
 

I found a great doctor (NHS couldn’t help sadly) and got multiple The Kintail Blanket (VS 4c)blood tests. Now carry antihistamine, steroids and an epi-pen as if it happens again I could go into anaphylactic shock  

Interestingly, really well cooked meat doesn’t seem to bother me (pies, stews etc). The doc thinks cooking may denature the carbohydrate that causes the allergy. No more steaks for me. 
 

There is no real evidence yet that the allergy dissipates over time. Does with some people not with others. 
 

Clear message tho is protect yourself from ticks. This is no longer just an illness that is in the US.....it’s here in Scotland. Wear tick repellant!!
 

That’s a bummer. My daughter has now had zero issues after having given up mammalian meat. So we’re fairly sure of diagnosis. Just need a hot summer to see whether sun has a part to play, or if it’s definitely just meat. Interesting about the cooking of it. 

This is worth a listen

https://www.wnycstudios.org/podcasts/radiolab/articles/alpha-gal

That’s awful, good luck managing it.

I’d never heard of this before, so I looked it up and found a really informative Mayo Clinic web page if anyone else wants to know more:

 https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-...

I, too, have never here of this but thanks for posting.

Dave

Interesting. I had really bad skin rash two years ago. No one knew what it was, we thought it was bed bugs so got rid of masses of clothes/bedding etc, and I slept on the floor in the conservatory (all while trying to sell the house), but that didn't help. Eventually got a week's 30mg prednisolone course, which got rid of it.

The day after the pred ran out I was bluelighted to hospital with swollen tongue, lips, face, the works. A real Mick Jagger/Bo Selecta thing. Diagnosed much later with spontaneous ideopathic chronic urticaria and angioedema, and after eight grim months of a massive 720mg dose of fexofenadine (an antihistamine) and slowly tapering withdrawal from pred (whose role as a PED, incidentally, is much exaggerated; if anything my road bike times suffered), I'm now on 180mg fexo every other day, which seems to keep whatever it is at bay, although I still have tingling in the old extremities.

The immunologist at Derriford said she had no idea what the cause was, but it was probably some stressful life event and that everyone who had walked through her door that day had the same thing... 

Haven't been to Scotland in tick season for years.

I feel your pain. I have also been on all the same drugs as you. Suggest you ask your immunologist - it’s a simple blood test to diagnose it. 

Oh - and also it’s not just a Scottish Highlands thing.....anywhere where there are deer!

A reason for putting midge repellant on your legs.

Ah, OK, thanks. It took six months to get to see the immunology consultant in Devon; there's only one consultant for whole of the West Country, remarkably. Now moved from Devon to Cumbria. Maybe it will take a while, given the current situation. Will look into it. Certainly came across some ticks in the New Forest just before it developed, which was when I was living in Hants.

The doc said the urt/angioedema typically lasts 18 months, but I've got it 3 years on (my dates wrong above). If I try to come off the fexo, my insides in abdo area start swelling, which is agony. So perhaps it is something else. That said, if I just take the fexo, which I understand are benign, I don't notice a thing, except that tingling.

In any case, I'm not sure I understand. You say that tick bites cause it, but also that steak causes it. How does that work? I don't eat red meat. But maybe dairy? Or is it the case that once it's triggered, that's it. Is there any treatment for Alpha Gal?

Very interesting, I got covered in ticks in Kerry 45 years back and also in Skye about 35 years ago

Will not be so careless now I have heard that podcast 

The tick bite causes an immune response, that causes an allergy to red meat. 

Although not all red meat, if you stick to eating apes, old world monkeys and humans then you should be fine. 

Ah OK, got a bit of long pig lying around somewhere.

That's really interesting, thanks for that.

Ticks and their after effects are by miles the scariest thing about climbing and walking in Scotland. This gives me yet another reason to never, ever wear shorts when I'm out and about.

Also reminds me of  thread a few years ago where some absolute rocket was adamant that ticks were rare in the UK and were only a problem in mainland Europe as we don't have the right conditions over here (......!!!!)

First time of heard of this in the UK. I'm in Australia (SE Queensland) and it seems to be fairly common in Oz, particularly around the tick hot-spot of Sydney Northern Beaches area. I don't have Alpha Gal, but have a severe anaphylactic reaction to tick bites, which is often viewed here as a precursor to Alpha Gal; fortunately that hasn't developed with me yet. As such, my focus is on tick bite avoidance and what to do and not do if bitten. There's a very active FB group here https://www.facebook.com/groups/516819061808417 (AlphaGal & Tick Allergy - Australia) that is a good resource for information if you're on FB. Let me know if you want more info on anything that may be of help.

Sorry to hear your diagnosis.I live in Fort William and my business partner was diagnosed with Alpha 2 years ago and is now an epi-pen carrier due to severity of allergic reactions.He found it easy to eliminate the obvious meat sources but has been caught out by cakes and sweets that contain animal products.

Interestingly when he was diagnosed 2 years ago he was told he was only confirmed case in Scotland.Now I know 3 people in Fort William alone with confirmed diagnosis of Alpha.

Scary stuff as tick bites are a normal fact of life growing up here.I have 2 small active sons who have already had a few, we are careful but it’s almost impossible to avoid.