Tracy Waters knew something was wrong when she woke up with tingles all over her face. “I looked in the mirror and everything was swollen. It was horrible. My eyelids had swollen like a goldfish. The only thing that had changed was her hormone replacement therapy (HRT), which she had started on a week earlier. In fact, Waters, like about three to five percent of people, has histamine intolerance (HIT). Not only can it get worse during perimenopause, HRT can make it worse And sadly, those who know about the condition are rare, especially in the UK, where it is a little-recognized but potentially very debilitating problem.
“Histamine is a very important chemical that is produced by the body,” says Dr. Tina Peers, who specializes in the disease. “It’s involved in the immune response, cognition, digestion and it’s a neurotransmitter. When histamine is working well, everything is fine, but when it builds up, it causes toxicity in the body and then symptoms.
There are two main reasons for this accumulation. “Two key enzymes called diamine oxidase (DAO) and HNMT are involved in the breakdown of histamine,” says Peers. It is believed that between three and five percent of the population do not produce sufficient amounts, which means that histamine levels can become high.
Second, our modern diet is the enemy of people with HIT. “We all eat histamine-rich foods,” says Peers. “In addition to highly processed foods, chocolate, tea, coffee, and alcohol, seemingly healthy choices like tomatoes, avocados, spinach, fermented foods, and aged cheese are all high in histamine.”
Symptoms manifest as forms of inflammation throughout the body. “Symptoms of elevated histamine often mimic allergic reactions,” says Emma Bardwell, nutritionist and women’s health expert. “In fact, we sometimes speak of a pseudo allergy. They include itchy skin and eyes, sneezing, runny nose, sensitivity to allergens such as pollen, sinusitis, facial flushing, eczema, psoriasis, rosacea, headache , low blood pressure, fatigue, insomnia, skin rashes, shortness of breath, palpitations, anxiety, IBS and fluid retention.”
Also, when you get to perimenopause — which itself has at least 34 symptoms — existing problems may get worse or new ones may appear. “Two years ago I started having what I thought were allergies,” says event manager Sarah Harry, 48. “I had constantly itchy and swollen eyes, a runny nose, I sneezed all the time and the itching around my skin and shoulders was so bad that I couldn’t sleep.” She took antihistamines every day and talked to her GP about them, but no solution was offered. It wasn’t until she went to see Bardwell that she discovered HIT. “I actually had a weight loss consultation, but once we discussed my general health and my symptoms, she suggested that I might have histamine intolerance. I was I had never heard of it.
His experience was by no means unique. “Many women find that the HIT becomes very pronounced when hormones fluctuate,” Bardwell explains. “There are a few mechanisms at play, the most important of which is that estrogen stimulates histamine production, so if estrogen increases – very possible if you’re in perimenopause – you may well be feeling the effects of histamine. Interestingly, histamine stimulates the ovaries to produce more estrogen, which creates a vicious circle effect.At the same time, estrogen limits the production of DAO.That’s why the addition of HRT – as in Waters’ case – may be unnecessary.You’re effectively pouring more histamine into an already overflowing bucket.
“I went to see a private doctor because my GP refused to prescribe me HRT and it was properly prescribed,” says Waters, 56, who works in child welfare. “I had never heard of histamine intolerance.”
Horrified by her swollen face, she ended up at an emergency GP appointment where she was prescribed antihistamines. When she later spoke to Peers, she was given a stronger prescription antihistamine, stopped her HRT and told to follow a low-histamine diet – a standard treatment that eliminates histamine-rich foods.
“It was heartbreaking having to get rid of all my lovely Surrey staples: avocado, kimchi, sourdough and kombucha,” Tracey says. “I also took supplements such as vitamin C and quercetin [which inhibits histamine production]. Even so, it took four months to feel better. She says it’s wonderful that there’s such movement around menopause. “But physicians also need to be aware of the intricacies of HIT, and particularly as they relate to perimenopause and HRT.”
Harry’s treatment with Bardwell was similar. She was asked to write down everything she ate and drank for a few weeks. “It showed that certain foods, like my breakfast smoothie, filled with avocados, spinach, bananas and berries, were hell in a histamine handcart.”
She now eats as much fresh food as possible. “I had to swap white wine for gin and tonic and I take supplements. If I feel my tolerance is dropping, I go back to basics and work on “emptying my histamine bucket.” I know most of my triggers now. She is very grateful that Bardwell recognized the condition. “I have a much better understanding of myself.”
“There is sometimes a ‘nocebo’ effect with the low histamine diet, which has a huge list of trigger foods,” Bardwell warns. “It can feel very limiting if done long term. When we get to the point where symptoms are managed, I focus on dietary inclusion rather than exclusion. Fear of food is no fun.
As we already know, the training of general practitioners on menopause is not enough. A study carried out last year by menopausesupport.co.uk found that a staggering 41% of the 32 medical schools that responded did not have a mandatory menopause education program for their students. It is not surprising to learn that knowledge of histamine intolerance is extremely limited.
It is, says Peers, something that needs to be much more widely recognized and addressed. “When I was doing menopause clinics in Chelsea and Westminster and seeing 14 patients a day, I’d say about three or four were histamine intolerant.” She reminds us that these are “delicate” cases that have been referred to her.
“Very often women who feel worse after taking HRT are told to take a higher dose,” says Peers. “But doctors need to take a thorough history, help patients control histamine intolerance, and then gradually add HRT back in at lower than normal doses.” Getting HIT under control is vital because, as she says, HRT is so important.
The UK is, suggest Peers and Bardwell, behind other countries in terms of research and diagnosis. “There are more clinicians in the United States who are aware of this,” says Peers. There are also articles written in Austria and Germany.
“I think it’s better understood in parts of Europe like Switzerland and Germany,” Bardwell says. “I think it’s under-diagnosed here because 80% of sufferers are women and women’s health is notoriously under-researched and undervalued in the UK. I see women who have struggled for many years.
However, there is hope. Interestingly, the long Covid, which is linked to inflammation, has put it on the map, says Peers. “I’ve been talking about it for two years, and now patients are suggesting they have it. More and more cardiologists and gastroenterologists are recognizing and diagnosing HIT. »
“As it gets talked about more and more, women are diagnosing it themselves and asking for help,” says Bardwell. “Alongside diet, stress is also a key factor.” Because she specializes in menopause, her clients naturally belong to the most affected demographic. If you think you have it, she recommends talking to a qualified practitioner who can guide you through the process.
But many women feel like the symptoms are in their head or that it’s “just an allergy.” “It’s something that needs to stop,” she said.