Allergic attack?

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Discussion

996Type

Original Poster:

823 posts

157 months

Wednesday 10th July
quotequote all
I’m on with my doctor already but they are being a bit dismissive.

Interested in opinions on the following.

50 year old male, don’t drink or smoke, lost a lot of weight recently on a health kick, weigh 80kg down from 110kg but symptoms pre date this

I’ve started to get a collection of symptoms about once a month.

Lasts for around 90 minutes.

I call them “attacks” as it feels like something is trying to kill me…..

Starts with minor itching on the palms of both hands, I then go bright red and itchy all over, face swells.

It’s like I’ve got sunburn!

Accompanied by stomach cramps and diarrhoea.
Eyes go bloodshot.

Apologies in advance for this bit - I’m never sick, but very nauseous and the smell from both ends is fking terrible.

Not a normal “ill” smell - just wrong.

Burp it up as well as smelling it out back.

Lovely.

First attack about 3 years ago following mild concussion at football (headed a long ball that nearly punched me out!)

First attack I thought I was having a stroke as it came 20 mins after the concussion (coincidence or has trauma kick started this whole thing damaging a gland in my head!?)

Couldn’t speak well, just wanted a shower to get the battery acid sweat off my body and I then calmed down.

Wife was terrified as speech affected but I kind of “knew” I would be OK.

Third attack (under doctors orders) went to a bemused A&E who prescribed big antihistamine dose. First three attacks happened over four months then symptoms stopped for a good year.

Doctor there was lovely, attack symptoms long since passed by the time I got seen (which is lucky as if it had been a stroke I might have been dead by then).

She assured me I was having some form of allergy reaction to something / NOT a stroke, she was great tbh.

(Rocked up to A&E with a bag expecting to be admitted at 5AM Saturday morning with all the night-out victims and was back home for 10AM, nice).

Returning to my doctor, he said “ah, yes, I’ve actually had the same as you, never thought to mention it….”

Attacks became rarer but have returned earlier this year, mostly mildly, around every 4 to 8 weeks, majority in the wee small hours of the day.

Had a massive attack around May which took me out (gastro wise) for a good 2 days, lost 3kg in that one.

During an attack I could rip my skin off (itching is so pronounced), heart rate doubles and waves of stomach cramps. I am beside myself during these incidents, just cannot leave the loo and get really distressed with it.

So there’s some form of emotional trigger it’s working with also. For example, my mind seems to insist it’s a heart attack or some other form of attack and these are just the fringe benefits I’m enjoying….

Post attack, I go into shock and can’t get warm, teeth chattering / shaking.

Doctor says “it’s not shock” (which I disagree with as how can they discount any symptom if they can’t say WHAT is going on!?)

Feel washed out for 24 hours following an attack.

Dr. Google (when not stating I should already be dead of course), points me to:

Endocrine (maybe pancreas / gall bladder / thyroid?)
Allergy reaction (food or environmental)
Immune system misfire
Other gastric related issues (IBS?)
Stress??
Something else that might of course be much worse.

There are occasions where the stomach symptoms come on before the itching & vice versa just to keep things interesting.

My own doctor, after asking me to “book in” during an attack, despite the fact I can’t actually function as a human being during one and they have a 2 week wait for an appointment, says create a food diary, which I have, but if I AM allergic to a certain food, I react inconsistently to it on some occasions and on others it wants to kill me.

They won’t submit me for an allergy test as the suite of triggers is “too broad and the test request would be rejected”.

Happy (but angry) to go private.

Just seeing if anyone else had similar experience before I embark on the journey?

I hope no one else suffers from this but if you do (firstly sorry) WHAT IS IT / have you been formally diagnosed / how / plus how do you treat it (preventative / Epi pen / etc!?

996Type

Original Poster:

823 posts

157 months

Thursday 11th July
quotequote all
Bumping for attention, in summary, anyone else get full body allergy reaction? Any ideas where to steer the conversation with the doc?

Gnits

936 posts

206 months

Thursday 11th July
quotequote all
For clarity I'm no doctor but the first thing that came to mind was some sort of gut parasite kicking off an immune response on the basis that it takes a while to brew up a foul rear end but only seconds to have immune response which would surely suggest the gut issue is the primary cause. Some parasites can hide themselves quite well from the host so could survive quite some time.

silentbrown

9,156 posts

121 months

Thursday 11th July
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The random repeated episodes makes me think of Malaria - have you been anywhere you could have got that?

Jugosaurus

98 posts

49 months

Thursday 11th July
quotequote all
Not a doctor, but throwing the symptoms you listed into an AI tool has suggest potential for Systemic mastocytosis

https://www.nhs.uk/conditions/mastocytosis/


996Type

Original Poster:

823 posts

157 months

Friday 12th July
quotequote all
Thanks for the responses!

I’ll run these through the doctor….

uknick

930 posts

189 months

Sunday 14th July
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My partner has suffered from massive histamine attacks for many years suffering many symptoms you've suffered. Whilst your case may well be a mast cell issue, she found she suffers from Candida (internal fungal growth) and also SIBO (small intestine bacteria overgrowth). Her GPs were completely clueless and left it to her to research the issues.

Both were caused by excessive prescribed antibiotics. SIBO can also be caused by proton pump inhibitors; drugs that reduce the amount of stomach acid made by glands in the lining of your stomach.

For Candida you need a endoscopy to diagnose and for SIBO a hydrogen breath test. You can get both of these on the NHS usually at a specialist gastric unit. I don't know where you live but she went to St Marks Hospital which is based in Northwick Park Hospital London

If not these it could be HIT (Histamine Intolerance) which needs a DAO blood test to diagnose. This looks for the enzyme diamine oxidase. Unfortunately the NHS don't offer this and has to done privately. At present only The Doctors Laboratory (TDL) in London do this test.

996Type

Original Poster:

823 posts

157 months

Sunday 14th July
quotequote all
Really interesting and thank you.

I’ve not been subject to any drugs other than those for low thyroid activity, but I will also add these two conditions to the list.

Do you mind me asking how your wife treats her condition / any tips on managing the symptoms and effects?

I had a minor attack early morning Saturday and took a lot of antihistamines, I think I headed off a bigger incident (but will never know). Now I’m a bit more used to them, there is relief in being able to handle them, so I’m wondering if stress in my case plays some part.

Attacks are now getting more frequent, around fortnightly, but they are also less in severity (although still a major inconvenience). Just started a new job and while not stressed, I do wonder if this has been a factor.

trevalvole

1,196 posts

38 months

Sunday 14th July
quotequote all
A few random thoughts:

Do you have any bloating? I was listening to a King's College London ZOE podcast on Histamine Intolerance last night and they said that 92% of those with the condition suffer from this.

Have you suffered from hay fever? I have, and recently when using some epoxy wood filler, got a rash and itching like you (but none of your other symptoms). I think it was allergic contact dermatitis triggered by the hardener in the epoxy which is an amine i.e. same family of chemicals as histamine.

Is there any correlation between episodes and what you've been eating/drinking or chemicals that you've been exposed to? As well as histamine intolerance, there's histamine poisoning, typically when you've been eating loads of (and perhaps not in good condition) herring and mackerel etc, or perhaps cheese - see 2nd paragraph of section 1.1 of : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC83083... The last sentence of that paragraph sounds a bit like your symptoms.

Edited by trevalvole on Sunday 14th July 18:02

MaxFromage

2,058 posts

136 months

Sunday 14th July
quotequote all
Jugosaurus said:
Not a doctor, but throwing the symptoms you listed into an AI tool has suggest potential for Systemic mastocytosis

https://www.nhs.uk/conditions/mastocytosis/
My Mum has this and your symptoms sound very familiar...

Triggers for her are stress and certain foods.

MaxFromage

2,058 posts

136 months

Sunday 14th July
quotequote all
trevalvole said:
A few random thoughts:

Is there any correlation between episodes and what you've been eating/drinking or chemicals that you've been exposed to? As well as histamine intolerance, there's histamine poisoning, typically when you've been eating loads of (and perhaps not in good condition) herring and mackerel etc, or perhaps cheese - see 2nd paragraph of section 1.1 of : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC83083... The last sentence of that paragraph sounds a bit like your symptoms.

Edited by trevalvole on Sunday 14th July 18:02
Yes my Mum has to be very careful with fish and cheese.

996Type

Original Poster:

823 posts

157 months

Sunday 14th July
quotequote all
Thanks for the info.

I’ve been keeping a basic food diary but it’s inconclusive regards immediate correlation of any food and the trigger.

I’m off alcohol and the last trigger I’d not had a drink for a few weeks so I can rule that out!

No bloating, no hay fever. Hoping there is a trigger food as I can consign it to history, but I’m off al lot of processed food, maybe not all of them, but majority.

That research paper is interesting, I’ll give it a thorough read.

I’m wondering if I’ve become intolerant to something that I was previously OK with. My bet might be bread. I’ve cut right down on this and it won’t be a consistent trigger, maybe different types or when combined with dairy or something.

One episode I’d been doing some carpentry, caught some sun and had a pint of cold water, the cramps and attack that followed that was severe, I had hives around my neck that mimicked sunburn but took a week or so to pass and were sensitive to sunlight for a couple of weeks.

Also, I’m sure I have a very low level of reaction ticking along most of the time in the background. Very low level gripes and maybe a little heat around my neck up to my ears.

Really weird, has come from nowhere to the current level over a relatively short period, hope I can get to the bottom of it….


trevalvole

1,196 posts

38 months

Monday 15th July
quotequote all
996Type said:
I’m wondering if I’ve become intolerant to something that I was previously OK with. My bet might be bread.
One of the main types of food that contain histamine are those that have been aged or fermented. There are various, often contradictory, food lists online.

Wildfire

9,820 posts

257 months

Monday 15th July
quotequote all
I have terrible allergies and between stress and other things I have a few reactions throughout the year.

It is worth diarising what you were doing at the time too, have you been in contact with anything and have a look to see if anything, no matter how small has changed. Washing powder, detergent, hand soap etc.

996Type

Original Poster:

823 posts

157 months

Monday 15th July
quotequote all
Thank you, not so far, the attacks were so spaced out originally it was meaningless, now they are arriving with the inevitability of an unloved season, I’m going to have to start to do so.

Washing powder is interesting, one T shirt gave me issues around my neck, the doc also asked if I’d been doing anything strenuous that day (had been, some DIY joinery work).

I do hope beyond hope it’s a simple allergy reaction and not one of the other possible causes above….

Also that maybe they stop as suddenly as they arrived.

Maybe look to get an epi-pen as the tablets really seemed to stop the last attack dead….





uknick

930 posts

189 months

Wednesday 17th July
quotequote all
996Type said:
Really interesting and thank you.

I’ve not been subject to any drugs other than those for low thyroid activity, but I will also add these two conditions to the list.

Do you mind me asking how your wife treats her condition / any tips on managing the symptoms and effects?

I had a minor attack early morning Saturday and took a lot of antihistamines, I think I headed off a bigger incident (but will never know). Now I’m a bit more used to them, there is relief in being able to handle them, so I’m wondering if stress in my case plays some part.

Attacks are now getting more frequent, around fortnightly, but they are also less in severity (although still a major inconvenience). Just started a new job and while not stressed, I do wonder if this has been a factor.
For the SIBO and Candida she uses probiotics. As the NHS were pretty ignorant of SIBO she had to research and then buy them herself. It is pretty pricey as probiotics are relatively new to the health industry. Before you start to spend on these I do strongly suggest you try to get a SIBO test. The probiotics mitigate the symptoms of SIBO and Candida. But, the SIBO can be only only be got rid of by strong antibiotics such as Rifaximin.

With regard to possible HIT this is really only dealt with, apart from antihistamines such Fexofenadine treating the symptoms, by a diet change, but I think that's been covered by other posters. Try looking at books by Janice Jonej on the subject. She talks about the body being a bucket of histamine and when it overflows by too much being generated you get the problems.

Finally, if you don't have enough to think about, look up IGE mediated histamine. This is the histamine problem that can lead to anaphylactic shock and is diagnosed with a skin prick test.


Badda

2,783 posts

87 months

Wednesday 17th July
quotequote all
996 said:
Maybe look to get an epi-pen as the tablets really seemed to stop the last attack dead….
epi-pen is for anaphylaxis.
If the tablets stop it dead…why look to something else?

996Type

Original Poster:

823 posts

157 months

Wednesday 17th July
quotequote all
Apologies, meant they seemed to stop it progressing further, but I’m still ill / in attack mode even after the tablets. Some of the attacks have been brutal, epi pen was mentioned as a possible response.

Badda

2,783 posts

87 months

Wednesday 17th July
quotequote all
I’ve not seen Adrenalin used to counter allergies, only anaphylaxis. That said, your symptoms are borderline systemic so maybe it would work.

With no wheeze, hypotension or airway compromise I still think the antihistamines would be a more appropriate option. Strange one though!

Edited by Badda on Wednesday 17th July 18:08

996Type

Original Poster:

823 posts

157 months

Wednesday 17th July
quotequote all
Agreed, attacks are getting to be around 10 days apart but much milder, hoping beyond hope they just phase out but will be back on with the docs shortly with the above info for a private referral…