Week 4 of my Long Covid, Histamine & SIBO journey I discover that the combined low histamine and fodmap diet can cause new symptoms – and that one of them might be good news!
New Symptoms on low Histamine & Fodmaps Diet
My restrictive low fodmap (sibo) and histamine diet definitely helped improve the uncomfortable bloating, gas and stretched feeling in my upper stomach.
Although there is still a fullness and slight swelling in that area – I guess housing all those bacteria requires extra room?
And I know from experience that my histamine reactions would be far worse and more frequent if I didn’t avoid the high histamine foods.
So I am definitely confident the diet is supporting my histamine and sibo symptoms while I work on healing the root causes.
However I did start to notice two new symptoms which I think were caused by the diet.
Please note this is my personal journey, not medical advice
The diet is designed to starve the bacteria of the foods they love to feast on – carbohydrates and yeasts. ** There is no scientific proof of bacteria starving but it feels real when you go through it!
Bacterial signalling is when the bacteria signals your brain that it needs and craves sugar – it can make you feel desperate and emotional – but is really just the bacteria controlling you..
Anyone who has struggled with candida overgrowth will recognise this situation.
Between weeks 3 and 4, I really started to notice cravings. Random images of my favourite past treats – chocolate – kept popping into my head with the emotion of ‘its not fair’ being triggered.
To be fair my diet had been low sugar for quite a while as any refined sugar – even natural stevia, maple syrup, honey, xylitol, and coconut sugars caused horrible skin rashes and boils over my face.
Luckily I am just vain enough to be horrified and quickly remove as much sugar as possible.
** Strangely enough Agave syrup did not cause a histamine reaction – but am sure it is high fodmap and feeds those pesky bacteria.
Instead of succumbing to chocolate (remember the boils!) The cravings sent by the bacteria strengthened my resolve.
I was glad the bacteria were starving, getting weaker.
Because bacteria robbing me of all my nutrients meant I was also getting weaker.
This can slow your Gut Motility (Sluggish Bowel)
The combined low fodmap (sibo) and histamine diet includes resistant starches such as potato, rice, quinoa and oats.
Oats
Resistant Starches are considered beneficial for people with Sibo and IBS as they bypass the small intestines and feed the good bacteria that you need in the large intestines. They are also said to improve the gut barrier and reduce gut permeability.
This is all great.
Just be aware that resistant starches can slow your gut motility – slow your bowel transit time or even cause constipation.
I had enjoyed eating sweet potatoes but the 75g portion size (cooked) had felt challenging to stick to and if you go above this amount sweet potato becomes high fodmap and feeds the bacteria.
Same with oats, I love them, but have noticed that my portion size can creep up.
My typical low fodmap (sibo) & histamine meal plan included one resistant starch and a protein with some of the limited vegetable choices at each meal
This combination of starch and protein caused my normal transit time to slow right down.
Now for some people a slower bowel transit time would be no problem at all!
But I needed a good transit time because of a crucial new remedy I was keen to begin using. This remedy was known to slow the bowel transit time and yet to work effectively needed to not hang around in the colon for too long.
**More on this new remedy in week 5!
This week was spent exploring how to ease constipation and sluggish bowel naturally – especially when you can’t tolerate or take the usual OTC medications and remedies. It proved so helpful that I turned it into a simple challenge you can try yourself – see HERE.
I almost missed this Obvious Tactic!
In between encouraging my bowel to work better and dealing with bacteria signalling I almost missed an obvious tactic.
DAO – Diamine oxidase – is an enzyme that breaks down histamine in the stomach. About 9 months ago I started taking one capsule each morning and it acted like a miracle in reducing the intensity and frequency of my reactions.
As I mentioned before, there is only one brand that suits my body, and honestly it is quite expensive.
As I was searching for more solutions and answers I suddenly realised that maybe I needed to take a 2nd DAO capsule before my evening meal?
Sometimes we almost miss the obvious!
Medical Patient Drug Care Concept
Why More is not always Good
Reducing my intense histamine reactions was a big relief – because the constant reactions impacted my energy levels, cognitive ability, general weakness not to mention potential damage to my eye-sight and vagus nerve.
However the fact that I needed more DAO was not great news
One negative was that I would need to order double the amount of expensive tablets!
The other negative was that needing a 2nd DAO Enzyme indicated that my digestion was getting weaker.
This made sense as my diary shows that I was having histamine reactions 4 – 5 days a week and those reactions were to foods/scents etc that previously I had been able to tolerate.
On the days that I remembered to take this 2nd capsule my reactions were milder. I kept forgetting to take them before my evening meal and they don’t work after you’ve eaten.
My daughter got fed up with her forgetful mumand took action
So now if you meet me late afternoon and hear angry barking – it is just my mobile phone reminding me to take the blasted 2nd DAO!
Summary of week 4
Bacterial Signalling – shows up as cravings – and is a positive sign that your diet is starving the bacteria.
The restrictive low histamine & Sibo diet can mean that your meals include a larger % of resistant starches with protein which in some people can cause a sluggish bowel
Needing to take moreDAO Enzyme is a sign that my digestion is getting weaker
In order to prepare for a new remedy I need to ensure my bowel has every support I can provide (and tolerate)
Interested in Natural Self-Care?
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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 week 2 of my Long Covid Histamine SIBO Healing Journey I talk about my first steps after testing positive for SIBO
Have you been diagnosed with both Histamine overload/intolerance HIT (allergies, inflammation, skin issues, food intolerance, MCAS, fatigue) and SIBO (bacterial overgrowth, candida, IBS, bloating, digestive problems, fatigue) issues?
There is a long list of common symptoms which you might be ‘living with’ or ‘managing’ with long-term medications that can be linked to a condition called SIBO (Small Intestinal Bacterial Overgrowth)
Below I share what my first steps were after being tested positive for SIBO in week 2 of my own Long Covid, Histamine & SIBO healing journey.
Please note this is my personal journey, not medical advice.
The SIBO Test Result Practitioner Feedback Video
I had paid to not only have the SIBO test but also have a personal practitioner video (7 minutes) explaining my results and suggested next steps.
In the UK SIBO is not easy to get tested for by your local Dr which is why I paid to go private.
The gist of my message was that it was not good to stay on a restricted diet for any length of time (completely agree) but that I would have to combine low histamine and Sibo diet guidelines and find what worked for me to start with. They provided handouts for both, listing which foods I could eat.
There were very few foods on both lists.
The reality is that I was having daily histamine reactions, my upper stomach was painfully swollen and I just wanted to get better – fast.
Which is why I chose to start with a very strict and limited diet of both low fodmap (sibo) and low histamine diet.
When it came to my SIBO remedies my practitioner was careful to highlight that when you have Histamine Overload or MCAS you have to go carefully and see what your body will react to.
This I have found is a repeating theme.
While both Histamine (MCAS) and SIBO (small intestine bacterial overgrowth) are commonly found together to fix one often causes issues with the other.
I was already taking DAO (Diamine oxidase) an enzyme that breaks histamine down – something that really helps me although if I take more than one capsule my stomach feels weird. It is also expensive. If I know I might be going to eat something that might release histamine I take an extra DAO.
I also take the probiotic Saccharomyces-Boulardii every evening as this helps with Histamine, inflammation and digestive issues as well.
Along with Vitamin C, D and B complex supplements.
Why I take so many Supplements
Yea I spend a fortune on supplements but have taken breaks and researched and tested and these all seem to help my body. In fact I went a couple of months without supplements in case they were causing histamine reactions (common) but actually slowly started to feel worse without them.
The bacteria that shouldn’t be in my small intestine (SIBO) can stop nutrients from being absorbed by the small intestine so you quickly become malnourished.
And being low in vitamins and minerals make it harder for the body to deal with inflammation and histamine or killing off bacteria.
This makes you feel exhausted.
Are Oregano Capsules as good as Antibiotics?
The general opinion (from various research trials) found that essential oil of Oregano kills off ‘bad’ bacteria as well, if not better, than antibiotics when it comes to SIBO.
So this is what my practitioner suggested for me. Along with a prebiotic that encouraged good bacteria.
I was told to start slowly and build up and see how my body reacted.
Massive Reaction to Oregano?
I did start slow with 1 capsule.
All fine.
So the next day I added an evening capsule.
And then I had a massive histamine reaction that lasted days.
Not only did I have swelling around my eye, but I had dizziness and felt faint every time I stood up, my whole body ached from head to toe, my eczema went crazy, my skin erupted on my face, my stomach hurt and my bowel stopped.
In fact the constipation (a new symptom for me) was distressing.
I could not function for 2-3 days.
Being honest, I probably went too fast with the capsules. Maybe one a day for a week or more or even start on alternative days.
Lesson learned.
If you read this and have allergy-type Histamine issues as well as SIBO you might be fine with Oregano Capsules just learn from my experiences and go very s-l-o-w.
Die-off or Reaction? Is the Big Question
Friends asked if it was just Die-off symptoms – a common reaction when you start to kill bacteria, who release chemicals as protection which can give you unpleasant symptoms.
Maybe it was.
But I feel it was a reaction as I am not sure how many bacteria would be killed off with just 3 capsules over 48 hours.
Also essential oils are something I personally often react to – so putting them inside my body was probably not such a good idea?
I was gutted.
But every instinct told me not to take them again.
So back to the drawing board for week 3.
Final thoughts on week 2
I do think that Oregano capsules can be very effective for killing off bacteria in the small intestine (SIBO)
I definitely got impatient and went too quickly – big lesson for the future.
I think that as I seem to have reactions to anything that contains essential oils it makes sense that I would not tolerate ingesting essential oils – even with highly tested capsules.
This is my personal journey to heal myself from both SIBO and Histamine Intolerance that were part of my Long Covid diagnosis. In this blog post I share what I did next after recieiving a positive test for SIBO. Including what I could eat on a low fodmap histamine diet.
I was so relieved to finally have a concrete diagnosis after taking the SIBO test. After years of being told my results were ‘fine’ and ‘normal’, even though I didn’t feel fine or normal a positive results for Hydrogen SIBO felt like progress.
Of course I couldn’t know what was ahead of me – but I remember feeling positive and hopeful.
Histamine intolerance – really overload – (reactions) causes me various unpleasant and unexpected symptoms and SIBO explained a new uncomfortable swelling in my upper stomach – both conditions are linked to each other and Long Covid – you can read more HERE
The private test I paid for included not only the test results, but a 7-minute personal video and healing plan.
My results took about 2 weeks to come back and I made the most of this time.
I spent a lot of this time researching and making lists of foods that are low in both histamine and fodmaps (SIBO)
There is a LOT of information about foods, diet and recipes for low Histamine OR FODMAP but very little about what to eat when you need foods that are low in both!
My low fodmap histamine foodlist list was not very long.
Blueberries are about the only fruit. The only sweetener I could find was pure stevia drops (which I reacted to) or tiny amounts of Maple Syrup.
Nutbutter is essential for many of my recipes and the allowed list includes Pecan (quite bitter) Macadamia nuts (lovely!) and Hemp and Pumpkin seeds.** Check amounts and individual sensitivity. This is enough to enjoy milks, dressings, smoothies and treats!
Potatoes, parsnips, swedes, courgettes, broccoli, carrots, lettuce, kale and cucumber are the main vegetables. Onions are problematic, you can test just the green part of spring onions and leeks, and garlic olive oil.
Rice, oats and quinoa make up the grains. I struggle with rice.
Plaincook from scratch meat, fish and maybe eggs are OK – but if they have anything added they are not allowed. Also you have to freeze and defrost just before you cook. No left-overs hanging around. I had to avoid eggs and my weekly shop included (plain) roast turkey, chicken and salmon. With occassional red meat.
Olive oil and Ghee are both acceptable to cook with. I did get myself some garlic olive oil but had to only add drops to avoid any reaction. I read that full fat Mayonnaise is OK in small amounts ? – I found a brand that I tolerated (thank goodness) watered down to start with.
Vinegar and lemon juice are high in histamine and fodmap and after a lot of research I got myself Verjus** – sour unripe grape juice which in small amounts might be tolerated and tastes like a mellow vinegar.** Update I started to react
Many spices are high histamine and some herbs are high fodmaps so you have to proceed with caution.
Ginger is your best friend for flavour and to soothe your symptoms, to this you can add Turmeric, Cardamom and Lemon Grass.
Chamomile and Hibsicus and many other herbal teas are not allowed. But a pinch of dried herbs as seasoning I think is ok.
Is low histamine and fodmap Foodie Hell?
When I was researching how limited my food choices were – it did feel like foodie hell.
But I decided to focus on what I could eat and how I could adapt traditional recipes.
This was definitely a time to work on my mind-set because any hope of healing was on the other side of weeks/months of this diet.
They call it delayed gratification, go without now so you can enjoy later on.
This was not my forever food plan.
Aim for 90% CleanEating
I aimed for 90% Clean. I included 2 weak cups of green tea, also a dash of almond milk twice a day in my rooibos tea. Once a week I had a Thai green curry and took an extra DAO capsule as I had already found that my body did not react to this. To start with I had watered down full-fat mayonnaise.
The problem is that I was reacting a LOT to things like body products, scents, chemicals, pollen and supplements.
Which wiped me out and while the diet is hugely beneficial it does take effort which you might not have in the beginning
Which is why, despite not being a good cook at all, with questionable taste buds, I have decided to share my recipes.
My Low Histamine/Fodmap Weekly Meal Plan
So here is my simple weekly food plan that is BOTH low histamine and fodmap – suitable for those suffering Histamine overload allergies and intolerances, MCAS, SIBO, Bacterial overgrowth, Gut Issues, with Fatigue
**I’m not a cook – so no measurements or detailed instructions!!!
Oats with Blueberries
I make an overnight oats version that only soaks for a couple of hours or heat gently and serve
I soak the oats and blueberries in ginger tea
I add macadamia or Pecan nut butter
Swap oats for rice flakes or quinoa
Add Stevia or maple syrup to taste
**I can’t tolerate stevia, and find macadamia nut butter sweet enough – but will add a tiny drop of maple syrup with Pecans which I find bitter
Blueberry Smoothie
More or less the same as oat recipe but I replace the oats with allowed greens such as lettuce, cucumber, kale.
Simply blend with cold ginger or mint tea.
This is very useful if the bowel slows down.
Salad, Protein and Potato
This is low fodmap histamine Spanish frittata – eggs and potato with lots of herbs **If you can tolerate eggs
I have potato/protein most days with a large salad!
Potato can be oven chips, jacket spud, new potatoes
Protein can be allowed plain poultry, meat or fish, frozen then defrosted in portion sizes.
Eggs – if tolerated
Salad is lettuce, shredded cabbage, cucumber, grated carrot
Finding a low histamine/fodmap salad dressing is almost impossible! I found that I can tolerate watered down shop-bought mayonnaise. You can use extra virgin olive oil with salt and pepper (helps with constipation). All vinegars and citrus are high histamine – some people can tolerate apple cider vinegar or distilled white vinegar. And most fruits are high fodmaps.
** Fresh lemon juice will be one of the first foods I ‘test’ back into my diet
Vegetable & Protein
So the goal here is to eventually find a gravy or sauce that you can tolerate.
Protein is again from the allowed plain poultry meat or fish list – frozen and defrosted in portion sizes. Eggs if tolerated. My choices include chicken, salmon, turkey with occassional lamb or beef.
My vegetable choices, which I mix and match include:
Broccoli and Carrots
Parsnip mash
Swede and Carrot mash
Sauted Cabbage
*Kale – to be included
*Roasted Radishes – to try!
If tolerated you can add ghee or drizzle olive oil. I season the vegetable water and add herbs and then save some when I drain the veg to make the mash or as a ‘jus’. Or you can save your protein juices as a ‘gravy’. I have found that I can tolerate shop-bought stock and gravy – after first taking a break and then ‘testing’.
Low fodmap/histamine Pesto/dressing
I didn’t want to leave you without sharing this idea! Parmesan and lemon juice are not low histamine or fodmap, nor is yeast flakes.
A low fodmap/histamine Pesto made with:
Fresh Basil, Mint, Parsley or Coriander (Cilantro) leaves
Macadamia or Pecan nut(butter), or Hemp seed or Pumpkin Seed
Extra Virgin Olive Oil or garlic infused oil
Seasoning (Opt chopped green onion leaves or chives)
Blend everything except the oil, which you add slowly. This can be adjusted to use over salad or meat and veg. When I’ve experimented a bit more I will share better details!
Simple Selfcare Tip!
Cook in bulk and freeze in portion size. There will be days when you feel too poorly to cook. Or days that go wrong when you have no time. Trust me it’s worth bulk cooking on ‘good’ days.
I plan to add more recipes but hope this provides ideas to get you started.
Next find out what my first steps were after testing positive for SIBO in week 2 HERE
If nothing else I hope this gives you an idea of what to expect if you suspect Histamine SIBO is the cause of any of your symptoms. Check the start of my journey here.
Developing a self-care practice around my personal healing journey was not only a powerful tool but incredibly empowering. Why not let me help you create your own menu of self-care practices?
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.
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