Lisa O’Brien’s Struggle with Food Intolerance: A Journey to Understanding Histamine Intolerance

For decades, Lisa O’Brien ate whatever she pleased without a second thought. However, in her mid-40s, certain foods began to trigger uncomfortable and sometimes violent reactions. The journey to diagnosis was long and fraught with missteps, ultimately leading her to a surprising and rarely recognized condition: histamine intolerance.

The Onset of Unexplained Symptoms

The first signs appeared as a red, rosacea-like rash on her face shortly after meals. Diarrhea then became an occasional yet troubling issue. As time passed, more foods triggered Lisa’s discomfort. She found herself reduced to eating only boiled rice and root vegetables to avoid adverse reactions.

A Misleading Diagnosis and Continued Symptoms

Seeking help, Lisa consulted her GP, who referred her to a gastroenterologist. Initially, she was diagnosed with irritable bowel syndrome (IBS). By avoiding grains, dairy, and wine, her symptoms did ease. However, in 2019, three years after her initial symptoms, they worsened dramatically.

Lisa experienced hives, intense itching, burning mouth pain, headaches, heart palpitations, and vomiting after eating. Antihistamines prescribed by her GP offered minimal relief. Her condition progressively worsened, affecting her daily life.

Lisa’s condition led her to see various specialists, including an allergist and maxillofacial consultant, but no clear diagnosis was forthcoming. Her mouth pain became chronic, and her skin remained irritated.

The Search for a Diagnosis

Desperate for answers, Lisa sought the advice of a nutritionist. After thorough evaluation, the nutritionist provided a diagnosis: histamine intolerance, a condition often confused with an allergy.

Histamine is a natural compound produced by the body and found in many foods. In people with histamine intolerance, the body doesn’t break down histamine efficiently. This leads to an accumulation of histamine, causing symptoms like hives, vomiting, irritable bowel, and more. Dr. Jose Costa, a consultant allergy specialist at The Children’s Allergy Clinic, explains, “Histamine intolerance is where levels of histamine are simply too high for an individual’s body to handle normally.”

Dr Jose Costa is a consultant specialist at The Children’s Allergy Clinic in the West Midlands

Factors such as medication and gut damage can exacerbate histamine intolerance. Medications like antidepressants and antibiotics can reduce the production of diamine oxidase, the enzyme responsible for breaking down histamine.

The Increasing Prevalence of Histamine Intolerance

Recent studies suggest a significant rise in histamine intolerance cases, partly attributed to lifestyle changes and increased consumption of ultra-processed foods, which often contain histamine or histamine-releasing preservatives.

Dr. Costa points out, “Tinned fish, for example, has histamine levels 20 times higher than fresh fish due to processing and added preservatives.” This is particularly challenging due to the lack of standardized testing for histamine intolerance, as the NHS access to such tests varies depending on location.

The Vagaries of Diagnosis

Diagnosis can be confusing as histamine intolerance symptoms often mimic those of other conditions. Diagnostic tools include blood tests for diamine oxidase deficiency or urine tests for methylhistamine levels, which provide insights into histamine processing in the body.

However, some experts like Dr. Helen Evans-Howells maintain skepticism about histamine intolerance. They argue that symptoms may be attributed to other conditions, such as mast cell activation syndrome, which can produce allergy-like symptoms without a clear cause.

The Impact of a Low-Histamine Diet

For those diagnosed with histamine intolerance, a low-histamine diet is the primary treatment. According to a 2021 study published in the journal Nutrients, a low-histamine diet improved symptoms in 70% of participants in 11 studies.

Foods high in histamine include aged beef, smoked or processed foods, and tomatoes. Dr. Costa lists the top ten foods and beverages to avoid on a low-histamine diet: dry fermented sausages like salami, cured cheese such as gouda, beer, wine, fish, tomatoes, spinach, sauerkraut, citrus fruits, and strawberries.

Lisa cut out grains, dairy and wine which helped reduce the severity of her reactions. But in 2019, three years after her first rash appeared, her symptoms got much worse.

Lisa’s Recovery

Following her diagnosis, Lisa adopted a low-histamine diet. Within two weeks, she noticed a profound improvement. Her skin cleared, and her digestive issues, fatigue, and brain fog disappeared.

Lisa reflects on her journey, stating, “I could only eat protein, veg, and fruit.” Her experiences have led her to join an online community of others with histamine intolerance. She advocates for increased recognition and acceptance of this condition in medical communities.

The Future of Histamine Intolerance Recognition

While more research is needed, the impact of histamine intolerance on quality of life is undeniable. Lisa’s story highlights the importance of persistence in seeking proper medical attention and the role of specialized consultations in obtaining an accurate diagnosis.

Dr. Patrick Yong, a consultant allergy specialist, emphasizes the need for further studies to establish the validity and prevalence of histamine intolerance. “The symptoms may be real, but other conditions could be the underlying cause,” he says.

Conclusion: Understanding and Managing Histamine Intolerance

Histamine intolerance is a lesser-known condition that can significantly affect daily life. By recognizing the symptoms, understanding the triggers, and seeking accurate diagnosis, individuals like Lisa can find relief and improve their quality of life.

If you suspect you may have histamine intolerance, consulting a specialist can provide the guidance needed to develop a suitable diet and treatment plan. Join the conversation and share your experiences by commenting below.

Additional reporting: JULIE COOK

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