This is week 3 of my personal long covid, histamine & SIBO healing journey, including how I respond to self-care setbacks and challenges. This week I explore root causes, how my body got out of balance in the first place.
I’m not going to lie – I felt pretty low after reacting to the Oregano capsules.
I think the SIBO test coming back as positive gave me hope and confidence that I was close to figuring out some answers.
I had spent years dealing with increasingly worse symptoms but the drs could find nothing wrong with me.
Mast Cell Activation Syndrome (MCAS) described me exactly but here in the UK the hospital told me they do not recognise the condition. And fobbed me off with a general Long Covid label and nothing they could do.
But SIBO (Small Intestinal Bacterial Overgrowth) was starting to be known in the UK and was increasingly being linked to Histamine Overload (or HIT Intolerance) and MCAS.
In theory, if I killed off the bacteria in my small intestines that was causing my immune system to go into overdrive, then healing was in sight?
I thought I finally had the start of a healing plan.
But if I couldn’t tolerate the medicine – Oregano essential oil capsules – then my plan couldn’t work.
The Dr Calls
My GP called me as I had sent him my SIBO results. He mentioned that I had 10x the amount of bacteria in my small intestines than I should. I have no idea how much extra bacteria other people have with SIBO?
We discussed why so many of my symptoms are only on my right side.
He felt it was nerve damage – Vagus Nerve.
Vagus nerve support was already on my radar – more to come about this.
Because symptoms on my right side were getting worse we discussed b12 being deficient. B12 supports the nervous system and the Vagus nerve.
The bacteria overgrowth in the small intestine block B12 from being absorbed along with many other crucial nutrients – which is a frustrating feedback loop.
Histamine overload is made worse when you are deficient in nutrients (for many important functions) and SIBO makes you deficient in nutrients.
B12 is tricky. I have been low in it before, but the supplement can and does cause reactions when I try to take it.
My GP offered antibiotics and antihistamines if I needed them. And I am grateful to know he will support me should I have no other choice.
A Strategy and Plan B
So I had stopped everything except the DAO, Boulardii and Vitamin C. I kept my diet and environment clean to reduce reactions.
I also started the B Complex (turns your wee yellow) as my body can tolerate that and at least some b vitamins are getting in.
Once I have had a big reaction – my body goes on hyper alert and reacts to tiny things.
It was a tiring week.(few years actually)
But I was curious. What else could I do if essential oil capsules made me react? Was there another natural remedy?
Was SIBO the real root cause? Why did I have SIBO?
Maybe SIBO was just another symptom of a deeper imbalance and root cause?
I was back on the trail of the root cause – which I needed before I could form a strategy and plan B.
I came across this interesting video about the many root causes of Histamine Intolerance (Overload) which I thought was worth sharing with you.
This video explains why this condition is so complex and if you suspect histamine might be causing your allergies and food intolerances and other random symptoms it is well worth watching to understand possible causes.
I suspected low stomach acid and leaky gut (gut permeability) and the covid viral infection as my main causes of SIBO and Histamine Overload. Contracting Covid after a few years of high level Stress probably impacted Vagus nerve function which directly impacted digestive function.
Discovering my root causes, the reason why my body had become so unbalanced that it was screaming for help through such intense (Histamine & SIBO) symptoms, felt like a huge step forward.
Digestion/Immunity and Vagus nerve/Adrenal stress were where I needed to focus my self-care alongside reducing the symptoms of bacteria in my small intestine and soothing those histamine reactions.
There is no doubt this is a complex condition, made worse because it is not recognised by most health professionals at the early stages – which is why I am sharing my journey.
Herbs to the Rescue?
Herbs of course are a huge passion of mine. Should I try oregano leaf tincture as a much weaker alternative to the essential oil capsules that my body might tolerate – not to mention adding Oregano to every meal?
Having been a herbalist for over 20 years this was something I could explore – if my body could tolerate the remedy. Herbal teas** had been fine so far and a big part of my personal self-care. But to kill bacteria would need a strong tincture.
I would also need to work on the root causes at the same time. Would my body tolerate so many (beloved) herbs and remedies?
I knew this gentle plan could take longer, like months and months on a restricted diet and lifestyle. With the risk that the bacteria blocking essential nutrition and continual histamine reactions could damage my nervous system even more.
** Many healing and wonderful herbal teas are either high histamine or high fodmap – meaning they can make your symptoms worse until you resolve the underlying cause.
Was I being realistic?
Or was this time to see my GP? And if I did would my body cope with various antihistamines? A childhood spent taking endless rounds of antibiotics that had weakened my health 30 years ago, made me wary.
In the early Spring of 2019 I ‘caught’ Covid-19 and by 2022 my symptoms put me in the ‘Long Covid – unexplained’ box at my local health centre .Since then I have been on a long journey back to health.
My experience of ‘Long Covid’ became the catalyst for creating the Make Selfcare Simple blog because simple self-care gave me the strength to get through each day.
This is my ‘Long covid’ story, it’s messy, I make mistakes, wrong choices, but also have breakthroughs, gain insights and slowly find answers for myself.
My story includes Long-covid, Chronic fatigue, SIBO/IBS, MCAS/Histamine/Allergy, Asthma, Skin issues and lots of ‘perfect test’ results that don’t help at all.
Honestly I am not sure how helpful sharing my story is, maybe reading my story will let you know you are not alone on your journey?
START your Challenge!
This is longer than I expected!
Why did I get Long-Covid?
I qualified (Master Herbalist & Natural Healer) way back in my early 30’s and went on to improve my well-being (I’d been poorly all of my 20’s) consistently for over 25 years until my mid-fifties.
So how come I was left with Long-Covid?
The answer is simple – Stress. I went though a difficult divorce and then my teenage daughter became very poorly (umpteen hospital appointments)for the next 5 years, I lost my dad suddenly, a new business venture had the plug-pulled and we moved home 7 times in 5 years.
I remember feeling this crushing responsibility.
Long-term Stress switches off your repair and maintenance systems.
My Long-covid Symptoms
I was quite poorly with long-covid, typical flu, breathing issues, and gastric flu symptoms all at once. But it passed and was over within a week.
But from that week my health has never been ‘right’.
Including 15 months of recurrent episodes of debilitating gastric flu and chest infections.
Gradually I started to have increasing random symptoms:
IBS – various and changing
Itchy ears – ezema inside my ear
Increasing Sinus infections
Asthma that started and finished very quickly
Weird skin rashes, from painful acne to rashes on my skin and inside my mouth and throat
Increasing joint pain, weakness and swelling
Hair loss one side of my head
Sinus swelling behind my right eye (extremely painful)
Feeling dizzy light headed in the head but my legs felt like lead
Low Blood Pressure
Fuzzy head and poor memory
Extreme Fatigue
Unfortunately this was during Covid. I still had to work and look after my daughter (single mum) and my local heath centre were unable to help.
The tests came back ‘good’ or as my GP told me, my tests were actually perfect for my ‘age’.
But I didn’t feel perfect.
Eventually my GP diagnosed me as having Long Covid because my health before and after Covid was so different.
Diagnosing Myself
The remedies I had used successfully for 25 years couldn’t help me this time
For a while I used my usual herbal remedies, essential oils, homeopathic pills, supplements and dietary changes. Remedies that had worked perfectly for the last 25 years based on supporting my inherited constitution.
And I seemed to get worse.
My local surgery offered me steroid inhaler for my asthma, steroids for my sinus, anti-histamines, Pronton Pump Inhibitors (PPI) and even HRT to ‘see’ if they ‘helped’.
I used a nasal steroid for my swollen sinus face once – but the next day the swollen face was gone and replaced with my right eye looking like something from a horror film. The ‘sinus reaction’ had escaped to the sinus area behind my eye.
I already had a long history of ‘reacting badly’ to normal medications and wasn’t convinced ‘testing’ by medication was the right path for me.
By this time I was worried and frustrated.
Without a concrete ‘diagnosis’ I was stuck in the dark.
I knew from my practitioner training that I needed to find a ‘root cause’ – but Long-Covid is cloaked in mystery.
The one ‘strange’ but consistent symptom pattern was waking up in the early morning with a ‘reaction’ usually sinus/skin rash/itchy ears which then developed into feeling faint, dizzy light-headed, followed by IBS symptoms and then joint pain/swelling and extreme fatigue.
This was a consistent pattern (70% of the time) – whatever I did during the day, my reaction seemed to happen between 3 – 5am the next morning. Weird right?
(Apart from quick onset asthma to chemical fumes/scents which were frightening)
I got tested for autoimmune which came back as negative.
Eventually I came across Mast Cell Activation Syndrome (MCAS) which finally seemed to describe me!
Mast Cell Activation Syndrome (MCAS)
According to the WebMD MCAS is “Mast cell activation syndrome, also called MCAS or mast cell activation disorder, is a condition that causes mast cells to release high amounts of chemicals into your body. This chemical release causes you to have many symptoms.
I spent almost a year researching MCAS. There is a lot of information online. But here in the UK after waiting months for an appointment an Allergy consultant told me ‘ we don’t recognise it here in the UK’. And shoved me out the door in under 10 minutes.
Yes I still feel bitter about that.
The harsh truth is that it is difficult to test for MCAS or histamine intolerance – unless and maybe even if you go private.
By this time I had no social life (apart from work) and had to leave at least two jobs because I reacted to something in the work place. By this time I was having sudden scary reactions to chemicals, perfumes and scents including essential oils – so I went into recluse mode.
Through trial and error (and many reactions) I confirmed foods high in histamine or histamine liberators were an issue for me.
Even healthy foods, herbs, essential oils and supplements can be high histamine.
A low histamine diet really helped. So did taking Diamine Oxidase enzymes and Saccharomyces Boulardii.
Some people follow a histamine bucket approach where they can strategically include a few higher histamine foods if they keep their overall lifestyle low histamine.
Other people take various anti-histamines but there is conflicting information about the long-term impact of switching off the bodies alert signal from the immune system. *With conditions like MCAS you may need to take both H1 & H2 blocking antihistamines and at much bigger dose.
Call me stubborn, but I still wanted to find the root cause and heal myself.
Insights fromLiving with MCAS / Long Covid
I firmly believe that the most healing diet is when you can eat a full varied diet. The low-histamine diet on top of my existing dairy and gluten-free requirements was incredibly limited.
Turns out that I could eat chips and plain crisps with no reaction – and boy did I make the most of this!
I spent hours researching ‘alternative’ recipes which was my inspiration for creating the ‘Nourish‘ Challenges. My beautiful kind daughter was very tolerant of my experiments and meal time choices
And if I ‘cheated’ or accidently ate a food that was high in histamine or an histamine liberator I was ‘punished’ with painful and weird symptoms.
I would wake early morning in agony with one red swollen eye and an unhealthy ‘pressure pain’ behind my eye. I would boil a kettle and grab a bowl and towel and steam my face. My eye would stream thick clear gunk and there was revolting post nasal drip. After this I could open my eye and see, but the whites of my eye were blood red. Nice. I would repeat steaming and use a heated eye-pack and my eye and the pain would slowly return to normal within 2-3 hours.
Then would follow various strange symptoms, sometimes I had a tight chest and lost my voice, I often felt dizzy and light headed and ‘wobbly’, and worse for me was that my head felt fuzzy and muddled. There would be pain in my neck, hips, and knees and sometimes my hands and feet would become swollen and painful. And for ‘days’ I would feel wiped out. Just in time for the next reaction.
I share this because so many people said they also suffer with ‘hay-fever’. This was not the same as hay-fever although hayfever may be linked to histamine overload.
I had a lot of problems with supplements and ‘natural’ remedies that also caused reactions. DAO (Diamine Oxidase) which is a miracle support for me, but when my supplier ran out (!) I reacted to each alternative I tried.
Let’s talk about my hair!
I quickly found that hair products including shampoo caused really big reactions. The more often I was reactive the more I noticed hair loss and just on one side of my head!
Honestly I spent a fortune on trying different ‘natural’ shampoos. If I didn’t react to the shampoo then it didn’t suit my hair. Call me vain but hair like straw is not a good look. Yes even the no-poo curly hair shampoo caused reactions. So did organic ones made with essential oils.
In fact it is very expensive having a reactive body! In the end I found an inexpensive unscented shampoo bar. It was the same story with all my body and cleaning products. Many essential oils trigger a reaction.
Reacting to Nature!
I also reacted to nature! As a former natural therapist & herbalist the irony is not lost on me. Grass and tree pollen were problematic and so was any time spent in my garden or walking my dog (RIP my beloved Sox).
Replacing lawns with beefriendly plants
My home and street is surrounded by grass – that needs regular cutting. I did remove almost all of my lawns and just prayed that the replacement plants were kind to me. I also gave up my dream of walking holidays and permculture forest gardening.
Most ordinary people would by now have taken all the anti-histamines!
I will try to explain.
Call it intuition, pig-headedness or dilusional thinking but I 100% believe that if I can find the root cause then I can find a healthy way to support my body to recover and repair.
And that was the problem with a MCAS or Histamine reactions or Long Covid Diagnosis – none of them gave me a root cause I could work with.
Whole Body Healing
Diet and supplements are never the whole picture when it comes to healing.
I include (where possible) many self-care practices in my daily routine.
Pssst my regular newsletter is where I share more details about my current self-care practice.HERE
Close family and friends are my life-line and are incredibly important to my whole body healing. I am still at the time of writing this, pretty much living like a recluse.
The enforced isolation that you can experience on the healing journey is one reason I would like to create an online self-care community.
I recently lost my beloved dog Sox, and know first hand how healing our pets can be and how real the grief of losing them is.
My beloved companion Sox – big part of my healing journey
Something else that I believe is that the body mind and soul are all connected.
Specifically I think that past experiences especially trauma links the mind to physical illness. So I was aware that my set of symptoms directly linked to fear – the world literally felt unsafe for me.
I am not a worrier by nature. But in iridology I have the golden eye which is linked to kidneys and fear. I deal with my fear (of histamine reactions) by controlling my situation and avoidance.
Which in one way is prefectly normal and practical.
So another part of my healing journey is to look at fear. I scheduled therapy sessions which were really helpful and have noticed that recognising my fear pattern is helpful in reducing my symptoms.
This is where Journal work has also been helpful.
Dealing with trauma or past experiences that impact your current health, is a work-in-progress for me.
However I am also cautious about getting stuck in your past – while its helpful to identify previous causes and patterns – please know that the focus should be on creating a better future.
I also try to avoid blame in all its forms. Tricky because it is so satisfying to give the blame to someone else.
Instead I try to ask:
How am I now going to respond to this situation?
What new and better choices and decisions will actually improve my future and bring me inner-peace?
Light at the end of the tunnel?
Whew well done if you’ve made it this far!
I had a bit of a ‘red herring‘ in that both my daughter and father had genetic Haemochromatosis (Iron overload) which interestingly can display many similar symptoms to what I experienced.
It took months to wait for tests and results – and I was hopeful that I’d found my root cause.
But no surprise my liver came back as ‘fine’ and blood tests confirmed I am just a carrier.
I am sure many of you have been in this strange situation where you almost want a test result to show something!
If my story does nothing else, it highlights the frustration of test results!
New Symptom –Upper Stomach Swelling
Anyway earlier this year 2025 I noticed a swelling in my upper stomach.
I thought it might be a flare-up of diastasis recti (caused by having C-section complications 20 odd years ago) and started following the exercises. NB I do think I have DR
However my stomach swelling quickly got larger and more painful despite me eating less food. It was a strange ‘stretched feeling’.
More tests and examinations followed all showing as fine!
Grrrrr
My GP was really pushing for Omeprazole – which conflicts with DAO – so I had a dilemma.
But for once my attention was on my IBS not my histamine reactions.
Honestly my IBS symptoms were much easier to deal with except now I had a painful swelling I couldn’t ignore.
Handy reminder to myself that ALL symptoms no matter how small are important
Long story short I started to consider SIBO Small Intestinal Bacterial Overgrowth.
SIBO can cause painful upper stomach swellingreduces DAO from being made in the body – ding dong! And there is a direct link between SIBO and Histamine intolerance (MCAS). AND Omeprazole can increase the risk of SIBO.
I couldn’t get tested for SIBO on the NHS so I went private.
My test result was positive for Hydrogen SIBO!!
Taking a rest!
Which brings me to the end of this mammoth post.
And the start of a brand new post.
This was my personal story about stubbornly holding out to find a root cause, probably a bit extreme to most people.
If you only take medicines to reduce/hide symptoms – without addressing the root cause – the body will keep giving you new symptoms
I quickly discovered that being tested positive for SIBO was just the first step and that there is very little free support/guidance for when you have both Histamine/MCAS and SIBO together.
