New beginnings after autoimmune disease

My journey with autoimmune disease started when I was just seven years old when my parents discovered a patch of hair loss at the back of my head. My dermatologist confirmed that it was alopecia areata and explained that no one knew what caused it, but the likelihood was that my hair would grow back, and not to worry.

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At seven years old, you don’t know what stress means. I thought I was doing pretty well, but I was driven at school and put pressure on myself to be top of the class, and my home was unsettled. This underlying stress, paired with my picky eating and the effects of a dairy allergy, may have been the perfect storm for my autoimmune disease.

You see, autoimmune disease usually runs in families, which is true for mine. My brother has multiple sclerosis, and I had other family members with other conditions, including sarcoidosis and Hashimoto's thyroiditis. 

However, in addition to genetic susceptibility, the development of autoimmune disease usually arises due to an environmental trigger such as a virus or toxin, and a way for this trigger to access your bloodstream and brain, which can be through increased intestinal permeability, also known as leaky gut syndrome

An autoimmune disease is a name for over 80 conditions where your immune system generates an immune response against self-tissue. This inflammatory response causes damage to the targeted tissues and can lead to autoimmune disease. For example, in multiple sclerosis, the immune system is fired up against the myelin sheath on a nerve which means the nerve is not able to signal correctly and can lead to scars on the brain and spinal cord, leading to mobility issues, pain and many other symptoms related to the central nervous system. 

After my alopecia diagnosis, my parents did their best to improve my diet. Even then, they knew protein was vital for immune and hair health, so I recall my breakfast changed from cereal to boiled eggs and toast. 

And my hair did grow back, but when I went to secondary school, I reintroduced dairy into my diet and developed itchy, painful skin on my elbows, later diagnosed as psoriasis

I lived with psoriasis for many years on and off and noticed a correlation between drinking milk and my psoriasis flares. However, as a teenager, I felt milk consumption was worth the pain, but eventually, when my psoriasis got worse, I became dairy-free, and my symptoms improved hugely.

Food sensitivities are common in autoimmune diseases, as they can cause inflammation which is at the heart of many autoimmune disorders. Whether you are sensitive to food will depend on your genetics, the health of your digestive system and the state of your immune system, so not everyone will be the same. 

Following this, I started suffering from debilitating fatigue while studying for my A levels. At the time, there wasn’t as much awareness of chronic fatigue syndrome, so I thought it was normal to need afternoon naps and to feel exhausted in the morning. 

And even though I liked to keep fit, I struggled with regular exercise, as I would feel so tired and achy afterwards that it would take days to recover. 

I missed a lot of school due to my fatigue, but I was still conscientious with studying and would make up for it on an evening at home. Pushing through became the norm, and I just lived in a constant fog of fatigue.

After living with autoimmune diseases for over 10 years, I decided to study biochemistry and immunology at university and focus my dissertation on the autoimmune disease vasculitis so that I could understand the science behind these conditions. 

At university, my health issues continued as I was plagued with throat infections. I was tested multiple times for glandular fever, but each time I visited the doctors, I was told they couldn't find anything. Finally, they decided that I had a sister virus to glandular fever, which I later discovered was cytomegalovirus. 

Cytomegalovirus and other herpes viruses, such as Epstein-Barr virus, may trigger chronic fatigue syndrome as they lay dormant in your body. Yet your immune system continues to be fired up against them. I assume I had this virus at school, which continued to chip away at my health during university. 

During university, I became a vegetarian. Unfortunately, at the time, even though I understood the science of autoimmune disease, I hadn’t yet studied nutrition, and the vegetarian diet I adopted was mainly high in sugar and starches, such as pasta and pizza.

A high-sugar diet and unbalanced blood sugar can contribute to autoimmune disease and fatigue. Looking back, I expect this was a key driver in my autoimmune symptoms, but it took many years for me to realise this. 

Once I graduated, I travelled to Australia and fell in love with scuba diving and the sea, so I trained to become a professional scuba diver. During this time, I ended up with adult acne - whether it was a poor diet, coming off the contraceptive pill, a reaction to seawater, or bacteria on one of the pillows I used at a hostel, I will never know. 

However, I did start taking antibiotics which helped the acne. Still, I stayed on these for years, which I am sure will have disrupted the balance of my gut microbiome and may have been a factor in my ongoing autoimmune symptoms. 

Following my travels, I decided I wanted to work in large corporates, so I started working for a large accountancy firm and became a Chartered Accountant. At this point, my fatigue symptoms worsened: brain fog, anxiety, light-headedness and exhaustion. And as a Chartered Accountant working long hours, I had little energy for much else. 

And then, in the first year of my training contract, I found out some heartbreaking news. My brother woke up over the Christmas holidays with a dead arm and could not move it. Initially, we didn’t realise that it could be something serious, and then after several tests and an MRI scan, the doctors explained to my brother that at 31 years old, he had multiple sclerosis. On the night we found out, my sister-in-law went into labour with their second child.

My brother's diagnosis affected me more than anything I was going through. At this point, I thought about putting my science knowledge into clinical application and becoming a nutritionist. It would be another 12 years until I finally realised that dream. However, I did keep up to date with the latest development in science and nutritional medicine research into multiple sclerosis and autoimmune disease.

And then, in my own health, following a work social at bowling, another inflammatory symptom popped up, tendonitis. For years after this, I experienced many issues with my joints, including swelling, ganglions and decreased movement, but I was never officially diagnosed with arthritis. 

After moving to London in my early thirties, I wasn’t looking after myself and burning the candle at both ends. I worked long hours at my new job and socialised with new friends and colleagues I had met. And then, one day, when my ankle swelled up to the point where I couldn’t get my shoe on, I decided to work with a nutritionist to see what I could do. 

After the first session, the student nutritionist that I had my appointment with advised that I should give up all wheat products. It wasn’t something I had tried before, and at this time, gluten-free wasn’t a ‘thing’ yet, but I followed her recommendations, and within a week, my swelling had reduced, and I could walk properly again. It was one of the first clear signs that diet could significantly affect my health. 

For a couple of years after this, I reduced the amount of wheat and dairy in my diet, but I still ate them moderately. I was also still eating a lot of sugar, and my social life was at its fullest. I was still experiencing autoimmune symptoms, but I had begun to accept that this was how my life would be, and I would need to manage it as best as I could. 

After many trips back and forth to see an endocrinologist, I was finally diagnosed with post-viral chronic fatigue syndrome, but there weren't many options in terms of medical treatments. 

Other strange symptoms had started to appear, such as skin rashes with no known cause, an internal tremor which felt like heart palpitations, a small skin lesion, and streaming watery eyes.

However, during a romantic weekend away in Rome, my husband proposed to me, and I decided I wanted to make some meaningful changes to my health before I married. It was during this time I started working on my health in earnest. 

I had already started studying for a nutritional therapy qualification, so I started working with a nutritionist who was linked to the college. We ran several functional tests and started working on the imbalances that were detected in my results. 

It was here I understood that dealing with the root of your condition rather than the symptoms alone was vital for long-term health. I switched my diet to a more fat-based one, which helped stabilise my blood sugar in the short term. I started eating a more nutrient-dense diet and ate meat again. I removed gluten and dairy from my diet completely. And I took a range of supplements to get the different systems in my body back to functioning optimally.

By the time I got married a year later, I was in much better health, but changes still needed to be made. I was still living my life at 100 miles per hour, and the only rest I had was when I crashed out. I found it difficult to say no to social events and requests, but gradually over time, I realised that I needed to put my health first. 

After going to some Pilates reformer classes in the lead-up to my wedding, I fell in love with the practice, so I decided to train as a Pilates teacher. It was intense training, but as well as learning about the body and Pilates, we also got taught a lot about self-awareness and connection with others. 

After six months of the course, I felt like there had been a significant mental shift in my thinking, and from there, I started to live a less chaotic life and make time for rest and relaxation. I started to enjoy walks in nature again, as I had done when I was younger and began to write again, which I had always loved to do. 

I explored alternative therapies such as craniosacral therapy, tuina, acupuncture, and reflexology and worked with a life coach. I still use many of these therapies today.

From here, my health went from strength to strength. I felt ready to nurture and finally fulfilled an ambition I had set for myself years before and got two dogs. My dogs gave me a reason to live a quieter life, and I always put their needs first. 

I qualified as a nutritionist and set up my own practice, finally feeling ready to move from corporate life and to share what I had learned throughout my journey with others. I moved house to live in a more suburban location. And I started to spend more time with friends and family. 

It has been eight years since I was ready for change. Over that time, there have been some key milestones, and even though it took time to live completely symptom-free, I celebrated every small win that I noticed. 

Having my energy back makes doing anything in life so much easier. I used to worry when a crash would hit, so I could never properly enjoy being away or going to events, but I now have every faith that my body works for me, so I feel at ease.

Autoimmune disease is not curable, but I believe that through diet and lifestyle, you can feel better, and for some, you can live symptom-free. Even though my journey has been long, when I look back I see that each step was a learning experience for me, and it has ultimately got me to where I need to be. I wouldn’t be here if I hadn’t been through these life events, so for that, I am grateful.

And that is why I have created a program that encompasses all the areas I focused on to recover from my autoimmune disease in my Complete Autoimmune RESET, which launched in October 2022. I have brought together everything that you need to uplevel your diet and lifestyle so that you have all the tools you need to feel better and live symptom-free. And I have some incredible guests and therapists who have helped in my recovery or have an inspirational story to share themselves. 

If you fancy finding out more about the Complete Autoimmune RESET, please feel free to email me. The Complete Autoimmune RESET will run again in March 2023.

And if you would prefer to work together 1-2-1, then please book a free consultation using the link in my profile. 

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The views expressed in this article are those of the author. All articles published on Nutritionist Resource are reviewed by our editorial team.

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London W1G & Harrogate HG1
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Written by V. J. Hamilton
Autoimmune Disease Expert | BSc (Immunology), DipION, mBANT
location_on London W1G & Harrogate HG1
After 25 years of suffering from multiple autoimmune conditions including alopecia, psoriasis and CFS, VJ discovered she could uncover the root cause of her issues to transform her health & live without symptoms. VJ now uses these same principles...
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