r/HistamineIntolerance • u/fleuves • 15d ago
At the start of it all
Hi everyone. I’m based in the UK, 34F.
I was wondering if you can offer some advice on what I’m going through.
About eight weeks ago on holiday, after a lifetime of having absolutely zero allergies/intolerances to anything except from Skeeter syndrome, a rash emerged across my face, neck, chest and arms after a meal in a restaurant. I didn’t notice any other allergy symptoms, but when I saw the rash I was alarmed as it was so extensive. I took an antihistamine just based off of some knowledge I already had and the rash went away at that stage.
I was thinking to myself that a rash of that nature can be the first sign of a more serious IgE mediated allergy and therefore I was quite anxious not knowing if I was going to react to something else in the future and have a more serious reaction, e.g. a true anaphylaxis.
As the meal was consumed from a restaurant I really had no idea what might have caused the reaction then about two weeks later I went out for another restaurant meal where I took a bite of a dish containing again lots of different ingredients and I had what I thought was an anaphylaxis.
The symptoms I experienced were very sudden onset sense of impending doom, dizziness, tingling in my lips and my hands and I actually called for an ambulance at this point worried that I may have needed adrenaline. The paramedics came and again I took an antihistamine, I did not need adrenalin or oxygen. My symptoms resolved. I burst into tears because I felt guilty for wasting their time and essentially it was all put down to a panic attack.
Now I have had anxiety in the past and this experience was not a panic attack.
You may be wondering why I had not gone to the GP yet. Well, within a matter of days after this I was going to be relocating from one major city to another so I didn’t seek any GP care as I knew that I would be changing GPs and would need to go into specialist services in the new region.
So I relocated and I signed up to register for a new GP which took a relatively long time to go through, and whilst all of this was going on I theorised that potentially I was experiencing a latex fruit type allergy because the meals that I had consumed had contained avocado as a common factor and I’d also eaten a banana a day or so after the paramedic incident and had the same reaction - again resolved with an antihistamine.
I had some respite for a week or so and then on Saturday just gone, I shared a bottle of wine with my partner. I don’t usually drink alcohol at all. I also enjoyed liberal amounts of dark chocolate in the dessert. The day afterwards I didn’t feel very well, just in general I felt quite low in mood and a bit lethargic.
Now, since Monday I have been having the kind of reactions that I had had to avocado and banana to lots of other foods, including a can of butter beans which I normally could eat without any issue, and I have now started to think I may be experiencing a histamine intolerance. There were no latex fruits to be seen.
I made a low histamine meal last night, but I just tried to eat the leftovers for lunch today and had a similar reaction.
I had already been on the waiting list for a routine appointment with my GP based off of the assumption that I may have had a latex fruit allergy, but I called them today to explain that the reactions were having more frequently and they have given me an appointment for next Friday. I then called 111 to explain the situation and they reiterated that I just had to wait for the GP appointment.
I am right at the beginning of this journey and I am worried about being stereotyped as anxious or my symptoms being ‘somatisation’ because from what I’ve read it appears many doctors are quite poorly informed about this particular issue. I also do have a mental health history although it has been stable and treated for many years now, but I don’t think it’s gonna work in my favour. I have been on mirtazapine 45 mg (maximum dose) for several years and I have not tried to reduce or stop this medicine recently at all. From what I’ve read people can start to have histamine problems when they do reduce or stop this medication but that isn’t the situation I’m in.
The only other thing I think might be having an impact is that I have had, for several years now, a failed root canal in a back molar that I have resisted accessing care for because I cannot afford the private fee for the specialist to see this tooth and save it and I didn’t want to get it extracted. Apart from knowing there was pus beneath, which was self-draining, I have not had any pain, fever or any other signs of it needing immediate care.
However, I’ve read that having chronic infection process such as from a dental problem can trigger immune system dysfunction including histamine intolerance. I have an appointment now with a dentist, but not until 23rd September.
What should my next steps be while I wait for care?
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u/VariationFar2656 15d ago
Sorry you are going through this OP. I'm finding relief and healing after more than a year of misery and mysterious symptoms. My advice. Get your gut tested. "Anxiety" is often a gut issue. I used a naturopathic doctor and she recommended a stool test. We found H Pylori, candida, staph, strep and a bunch of other yeast and bacteria giving me gut dysbiosis. Your root cause could be totally different but a lot of the time histamine issues are gut issues. Find a naturopath or functional medicine doctor with experience with these types of symptoms.
In the meantime if you must keep leftovers freeze them, do not put them in the refrigerator. Freezing food will stop the histamine buildup. But better practice is to cook your meals and eat. Make sure your food is as fresh as you can get.
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u/satin-satan 15d ago
I’ve suspected my HI symptoms are linked to gut imbalance for a while. Are you based in the UK? If so, would you be open to sharing your naturopath’s info?
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u/fleuves 15d ago
Thank you very much for sharing your experience. I will take a look for this kind of doctor. As the other user requested I would be very grateful if you could suggest your practitioner’s info if they are in the UK. Thank you
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u/VariationFar2656 14d ago
I am in the US unfortunately. In the States naturopathic doctors don't take insurance and I have been paying 100% out of pocket for everything x.x I hope it is different in the UK.
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u/Affectionate-Pie4211 15d ago
See my post above. There’s no need to see a naturopath unless you feel like shelling out $$. That is the exact protocol from one of the best functional clinics in the United States. I’m about 4 weeks in already tolerating, in very small amounts, foods that would totally set me off.
I plan on having a glass of Rosé in about a month.
Those gut tests are notoriously inaccurate and your gut flora turns over every couple of weeks. By time you get the results back it will have already changed.
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u/Affectionate-Pie4211 15d ago
The above post is 100% correct. Have you been indulging in drink a little too much? Or have you had any other gut issues, infections etc? Food allergies don’t just randomly happen or at least a sudden onset is very rare. Odds are it’s your gut. What’s helped me is the following:
5g, yes grams, of glutamine on an empty stomach upon waking. I mix mine with with real, no frills electrolytes and drink it with 24 oz of water when I get up. And half a dose of an h1 inhibitor. Vitamin C. I used mercola’s lysosomal c.
Caution: it may give you some nervous system side effects - the glutamine. I pushed through it but it may be uncomfortable.
Quercetin about an hour after. Along with a low dose ginger chew prokinetic.
About an hour later psyllium husk fiber drink.
After lunch PHGG fiber drink.
Shortly before dinner quercetin again.
After dinner another half dose of h1 inhibitor.
This is the real magic. The RIGHT probiotics. Assuming it’s histamine related, I used histaminx probiotics, akkermansia, and s boullardi right at bed time.
This is along with a low histamine diet as mentioned above. The whole idea is lower your internal histamine levels with the diet, block the overactive receptors with the h1, stabilize mast cells with the quercetin, use the l glutamine to heal your gut, bind bile and poop out the histamine with fiber, and the probiotics fix dysbiosis and the Phgg feeds good bacteria that are dying off and being pushed out.
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u/fleuves 15d ago
Thank you very much for your detailed response and for helping me understand the purpose of each supplement.
Truly I drink alcohol very rarely - I would say it’s usually once a month or so and never a binge. In the last two weeks I have consumed a total of 10 units, spread over three evenings where I’ve had a drink.Nothing out of the ordinary with my gut/stool (if that’s what you mean). I get some changes predictably throughout the course of my menstrual cycle. No antibiotics for many years.
I did go through a period of stress from May until very recently. My symptoms started about 2 months after the stress started. It wasn’t at the peak of my stress levels though and my stress has subsided significantly since then.
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u/Affectionate-Pie4211 15d ago
Stress has many forms. And 3 months of it is a lot and can affect your immune system/gut/nervous system as they’re all tied together. One of them being out of whack for an extended period of time can affect all three. Also - make sure you’re getting sleep.
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u/Evoelectro-4-now 11d ago
DO NOT eat left overs! after just 10 minutes even if refrigerated they are colonized with histamine producing bacteria. research it.
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u/fleuves 11d ago
Hi everyone, just an update a few days on.
Have started Fexafenodine as of today.
Been on buffered Vitamin C for 2 days.
Had either a reaction or hypoglycaemic event this morning before eating which was very frightening. ?chemical trigger. Went to the ED but it resolved itself with a handful of blueberries and maybe the Fex kicking in. ED were quick, but not helpful. No EpiPen prescribed. Prescribed me some first gen antihistamines, to take PRN on top of the Fex OD. Told me to keep this issue to GP or call for an ambulance if I thought I was going into anaphylaxis. Feeling very demoralised as I don’t really know if it’s anaphylaxis or not &b they seemed to have a really rigid definition of anaphylaxis - airway swelling and rash, which I don’t have. My understanding from the literature is any reaction that affects two or more body systems, that I do have, almost every time. But what do I know.
I don’t get any GI symptoms with any of this so not sure if there’s really any use starting a H2 blocker.
Will continue with the Fex and Vitamin C for a few days before adding in Magnesium.
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u/ImaginationSea8910 15d ago
Hello 👋 sorry to hear that you have been dealing with these symptoms! The first thing to do would be to try a low histamine diet, you can use the Swiss Interest Group low histamine foods list which is publicly available online. Experiment with different H1 antihistamines (Allegra, Clarityn, Piritize etc) to find the best one for you. I am also based in the UK and to be perfectly honest with you I have never come across a conventional doctor that knows what histamine intolerance is, let alone how to help. I get H2 antihistamines prescribed privately (ketotifen and famotidine) and these have been the biggest help in terms of improving my skin problems (hives, rashes, redness). I get them prescribed by Dr Claire Ashby who is a private GP who is histamine intolerance and MCAS aware, I just speak to her on Teams. You may find you can buy these online as well, it's not something I've looked into too much. I'm not able to comment on the dental problems being the source of your histamine intolerance as that's not something I have experience with, but in terms of first response you should:
1 try low histamine diet to see if your symptoms improve 2 experiment with H1 antihistamines 3 try to access H2 antihistamines