*** Please note that although we have carried out thorough, in-depth, evidence-based research and have lived with SIBO for years, we are not medical professionals. Please seek medical advice before trying anything new to ensure that its suitable for you.
We both had chronic anxiety for years and multiple courses of antibiotics which we believed to be the cause of all our issues. It wasn't until we turned to private health care for help, that we discovered we have T-cell dysfunction and Hashimoto Thyroiditis as well as SIBO and SIFO. It is likely our T-cell dysfunction is genetic and the root cause of our autoimmune and gut disorder. We are now undergoing immunotherapy at The Burghwood Clinic and finally (after about 7 years of intense ordeal) our health is returning!
Our symptoms are almost identical but our journeys and experiences have been very different...
Childhood - I was never energetic and felt sad, lonely & isolated a lot. Reacting to dairy (at least) but not aware of it. Unexplained rashes every year.
Adolescence - Started getting anxiety and stress at college at 16. Had a never-ending series of infections for a year, all treated with antibiotics. After these I noticed: the tiredness dull aches in one of my knees, pain and tightness in my hips and reacting to gluten and dairy.
Mid twenties - Following a healthy vegan diet, new and very stressful job in sales & intense nutrition studies in college lead to my condition deteriorating rapidly. Within months, entire food groups were off limits to me and I continued to develop intolerances to other seemingly random foods. My symptoms (listed elsewhere in the site) worsened. I had a constant bubble of gas in my throat and was belching throughout the day, even more bloated, had diarrhea some days and constipation on others. For 3 months that same year I developed chronic fatigue and brain fog and could barely function. My whole body ached and I was so exhausted that even moving an arm an inch took the most enormous amount of willpower. Doing my job, any housework, cooking and shopping all felt like impossible tasks and I would tear up at the thought of moving my body I was so whacked out even being completely still. I had really bad depression and couldn't imagine ever getting better.
I found a job where I was almost always alone so no matter what I was going through I didn’t need to worry about anyone else or their reactions. This allowed me to carry on and although I knew I was ill, I don’t think it dawned on me just how ill I was, I was very much in survival mode just trying to get through each day and kept thinking I could heal myself. I had to stop my studies as I became too ill.
We attempted to rid ourselves of the SIBO by taking the antimicrobial herbs which only worsened our food intolerances till we ended up eating only cucumber, herbs and olives for several months.
After this, we had wasted away so much - we were just skin and bone which concerned us - we realised we had to reluctantly re-introduce some meat into our diets. We started with chicken liver as it is very nutritionally dense and a gentler form of meat.
It was suggested to us that we try the carnivore diet, which we followed religiously for a year and we really did expect that diet to heal us. We tried many times to reintroduce plant foods but reacted so violently to even miniscule amounts that it was just not possible. We were still reacting to and feeling terrible on the meat only diet and would need to do regular short fasts to manage symptoms.
At various points II also suffered from: Hy.pylori infection in my stomach, stomach ulcers (2 popped on different occasions- very painful), constant cystitis, interstitial cystitis for several months, shingles twice in 2 years and BV.
Just turned thirty: This year we made a monumental and radical decision: to stop trying to heal ourselves and get professional help. I cannot stress how important this was for us - for anyone - to realise when there is nothing you can do to improve your health but to turn to professionals.
We were then finally diagnosed with hashimoto’s thyroiditis which allowed us to get the dose of hormones our bodies required for everyday functions including metabolism regulation, control of body temperature, heart function, etc - our first BIG step forwards.
The doctor (endocrinologist) who diagnosed us referred us to an immunologist as she could see that our issues stemmed from our immune system. I spent thousands of pounds to get a round of antibiotics for the BV which didn’t work, have numerous tests done which all came back negative and be told that my immune system ‘was fully functional’. I thought this was odd as having an autoimmune disease means that it isn’t working as it should and I was reacting to everything I ate...
We then sought help for our SIBO but the private gastroenterologist only gave me 1 dose of 1 antibiotic after a positive test result. I was still very ill. He made me take a second test which came back negative and then basically said he couldn’t help anymore because the test result was negative which meant I was SIBO free. I then found an amazing private gastroenterologist (which proved difficult) after this who is still treating me. He gave me 2 more courses of dual antibiotics which got rid of the SIBO. The second HUGE step forwards.
Getting rid of the SIBO allowed me to start eating some plants: lettuce, cucumber, olives, some herbs. We re-introduced the plant foods which we had cut out last. Still feeling rough, unwell and reacting to everything even the ‘safe’ diet. Our doctor suggested we start low dose immunotherapy LDI. This involves injecting yourself daily with very very diluted amounts of the foods you wish to make safe plus various cytokines and other signalling agents which desensitise the immune system to those foods. It re-trains the immune system to stop reacting to food. This therapy normally lasts 2-3 years minimum and can last much longer depending on the individual and the severity / duration of their symptoms. In the UK it is only available in 2 clinics and although it has been around for years - mostly for hayfever & allergy sufferers - not many doctors are aware of it.
As soon as I started the LDI my depression went. When I looked at my face in the morning I looked like me - the puffiness which changed my face had gone. Other symptoms were less constant or more bearable than before. I think we can finally say that we are finally getting better :)
My main 3 symptoms that I've suffered with for the first 2-3 years aged 26-29 were nausea, fatigue and eczema. For the first year the nausea was intense, lasting from the moment I woke up until early afternoon, every single day. Luckily this symptom disappeared after a 7 day water fast I did in April 2019.
For 3 years I had repeated eczema flare-ups which rapidly turned into acute bacterial skin infections which spread all over my body. I had never experienced skin issues before the age of 26 when the eczema suddenly appeared one day on the backs of my hands. The doctors wrongly diagnosed me at first, and then a Dermatologist diagnosed me with "good old fashioned incurable eczema" which was far from helpful - I still had no idea how to prevent the flare-ups and how to stop them from becoming infected, or even how to help the open eczema heal and close without steroids.
I saw a Nutritionist in February 2017 who deduced from tests that I might have SIBO. She made the link between my poor gut health and skin condition and gave me some great dietary advice. Even on the SCD diet however, I still experienced flare-ups. I was trapped in a cycle, dependent on steroids, antihistamines and antibiotics. I was given course after course of antibiotics (sometimes as many as two courses per month!) and lost count of how many I took. They created many more problems which I had to deal with on top of the chronic symptoms I experienced, including my hair thinning and becoming brittle each time I took them. They left me severely immunocompromised - I suffered multiple bouts of UTIs, conjunctivitis and had chronic tonsillitis and candida. Short 3 day water fasts helped rejuvenate me a bit after each course, but it wasn't enough and my health still gradually declined during this time.
Breaking the Eczema - Skin infection - Antibiotic Cycle
Desperate to find a way to prevent the eczema infections and avoid antibiotics - hopefully for the rest of my life, I did tonnes of research into how to heal infections naturally, trying things like essential oil mixes, honey, anything I could think of until I finally stumbled across MooGoo Irritable Skin Balm. This finally stopped my eczema bouts from turning into full body strep infections. I finally managed to break the antibiotic dependence once and for all!! I owe these guys a lot.
However by this point I was in a really bad state. The antibiotics and stress from all the trauma, A+E visits, sleepless nights, the depression from the hopelessness of not knowing how to escape the nightmarish cycle, had all taken it's toll - I had chronic tonsillitis that never went away and my whole body felt broken. My gut was so severely damaged I could barely digest anything and my food intolerances and reactions were worse than ever.
I only began to find real answers after turning to private health care. The first thing I did was see an ENT doc to get my tonsils removed asap. By this point I had had chronic tonsillitis for well over a year and the NHS had put me on a 6 month waiting list to get a tonsillectomy. I couldn't wait that long, every day was a living nightmare. But within 2 weeks of seeing the private ENT doc I had them removed and it was one of the best decisions I've ever made.
I saw a private Endocrinologist next who confirm my suspected Hypothyroidism (the NHS assured me my levels were "normal") and confirmed a diagnosis of Hashimoto's Thyroiditis. I was put on Levothyroxine (daily) and within weeks my cycle returned (after disappearing for a year!) and my hair stopped falling out. Many other symptoms improved also - the difference this made was huge but it didn't solve everything.
Even after going private, it wasn't all roses - one Gastro doc insisted I take the SIBO Breath Test before receiving the treatment. I do not exaggerate when I say that it almost killed me. I was in a critical condition for around 3 months, barely able to leave my bed or eat anything without extreme nausea, dizziness and fatigue. He refused to give me the antibiotic treatment because my results were "inconclusive" (a false-negative).
After a lot of research Gina found Dr Econs and The Burghwood Clinic. After an initial consultation he prescribed me the SIBO antibiotics and my life has improved drastically ever since. I am now undertaking Low Dose Immunotherapy (LDI), EPD immunotherapy and chelation therapy at his clinic, turning back the clock. With every EPD and chelation, I get stronger. Slowly but surely, my health is returning. It's been a long, tiring journey but I've learnt so much and I hope to help others going through this confusing and exasperating journey.
My spoonie symptoms included -
Chronic interstitial cystitis (CIC)
Hair thinning + damaged, dry, brittle hair - it felt more like very thin straw!
Eczema, rashes (urticaria), dermatitis
Severe gut cramps + pains (disappeared on carni diet)
Chronic indigestion and bloating
Chronic fatigue, heavy body - specially legs! It was hard to move some days
Asthenia / Adynamia / physical weakness
Frequent general lethargy + drowsiness
Brain fog + poor memory (when the fatigue was at it's worst)
Irregular moon cycle (it stopped for 9 months!)