Hi, I’m Jen, a 32 year old foodie, who 3 1/2 years ago was struck down with an autoimmune disorder and a host of digestive woes. I wanted to put something out there for others that might be feeling as alone and confused by their medical problems as I was when I started seeking treatment. I’m still on my journey to health, but have had enough breakthroughs to start sharing.
So, what’s wrong with me? In short, gastritis, dysbiosis (SIBO and Candida), gut dysfunction (likely bile and acid production problems with malabsorption), Leaky Gut Syndrome, FODMAP and Histamine intolerance, severe nutritional deficiencies, cortisol dysregulation, nickel toxicity, and Chronic Fatigue Syndrome. I’ll give the brief overview and then detail the tests and treatments that I’ve been through. If any of this sounds familiar, get in touch! If we share our experiences we might be able to help each other find a route out of ill health.
So, I’ve suffered with digestive problems since I was a child. A dairy intolerance as a toddler, and a ‘nervous stomach’ through childhood culminated in severe bouts of diarrhea, a burning in my upper chest and throat, and food intolerance by the time I was in my late teens. Through University I saw numerous doctors who put it down to bad IBS and acid reflux, and I was prescribed Peppermint Oil and Lanzoprazole (a proton-pump inhibitor). The problems just kept getting worse through my 20s, with new symptoms arising like severe bloating, feeling of uncomfortable fullness after small meals, hungover feeling in the mornings even without alcohol consumption, headaches and an increasing number of throat and chest infections. By the time I was 30 I was bloated and ‘hungover’ on waking every day, getting a throat infection every 2-3 months, feeling unnaturally tired after exercise and experiencing crippling hunger every 3 hours – and if I didn’t eat every three hours then I would experience weakness, dizziness, bloating and nausea. This caused weight gain, even though I was exercising heavily.
Could it get much worse? Well apparently, yes. By this point I had had every test available on the NHS under consultants at the Heath Hospital in Cardiff. No major functional problem was identified, and I was discharged from their books. I was terribly upset by this, knowing that I was suffering symptoms that were really starting to affect my ability to work and enjoy life.
AND THEN, it happened. Rock bottom: I had a tooth extracted in June 2012, after which I developed Dry Socket and an infection in my jaw. The dentist put me on strong antibiotics, but the infection wouldn’t shift and ended up exhausting me so badly that I developed another throat infection. More antibiotics were prescribed by my GP, and after 3 weeks of antibiotics I finally finished the course and tried to get back to normal.
However, something had fundamentally changed and suddenly I was unable to eat without feeling violently sick, and the crippling hunger came every hour. Within a few days of finishing the antibiotics I was unable to move out of bed because the nausea was so severe, and I felt completely exhausted and unable to stay conscious for more than a couple of hours. A new symptom appeared at this time too – a severe stabbing pain in my bladder. I was tested for an infection, which came back negative. Again the GP just said ‘it’s one of those things’. Great. After two weeks of this I got signed off work by my GP and ended up at home for 5 months with severe nausea, bloating and fatigue.
As I had been ‘discharged’ by the Gastroenterology department at the hospital, and the GPs had no idea what was wrong with me, I quickly found a private nutritionist to help me out. I was instantly advised to get on an anti-inflammatory diet, and ordered a Comprehensive Stool Analysis Test with Genova Diagnostics to try to figure out what was going on. Three weeks later the results were in: dysbiosis – a bad bacteria (Klebsiella) overgrowth, inflammation of the gut, and acidic stool. My nutritionist suggested a low-starch, anti-inflammatory diet to starve out the bacteria and soothe my digestive tract, and ordered me a host of supplements including probiotics, immune system support, anti-bacterial supplements (Oregano Oil) and anti-inflammatory supplements. Thinking that dysbiosis was the cause of the bulk of my symptoms, we figured if we killed the bad bacteria, repopulated the gut with good bacteria, healed the Leaky Gut Syndrome (that is probably inevitable when suffering with dysbiosis), and reduced the inflammation, that things would right themselves.
I’d just like to note here that my ‘normal’ diet and lifestyle was pretty healthy in most ways – I never ever ate fast food or highly processed carbohydrates (we made our own wholemeal bread and cooked most meals from scratch); we have an allotment so I usually ate organic veg; I hardly ever ate chocolate, cake or refined sugar; I went to the gym every other day, and walked 3 miles to and from work almost daily. The bad things about my former lifestyle were that I drank a lot of beer – 3/4 times a week I’d have 2-3 pints of ale (often home brew though!); I smoked between the ages of 17 – 30; often took recreational drugs between the ages of 17 – 28, and had a lot of sources of stress. I think that the healthy elements of my former lifestyle were the only things that kept that massive ‘break’ in my symptoms from occurring earlier.
Summary of debilitating symptoms:
Nausea – so bad I couldn’t move or speak, occasionally progressing to dry retching
Bloating – so painful it felt like my skin would burst
‘Acid reflux’ – the feeling of burning in throat and chest (but lack of acid causes the same symptom, which is where the NHS treatment of my supposed acid reflux was incorrect and did me a lot of damage)
Food intolerance – certain foods would make me bloat and feel so sick that I couldn’t move for the pain and discomfort
Pain in upper left stomach – a stabbing pain, often after food
Frequent loose stools – especially first thing in the morning, when nervous or tired
Constant hunger – if I don’t eat every 2 hours then I experience dizziness, weakness, sore throat, headache, brain fog, bloating, stomach discomfort, and terrible nausea
Chronic Fatigue – no muscle or mental energy. Short bursts of activity result in aching body, headache, exhaustion and the need to sleep. Delayed fatigue means I wake up exhausted and feel fluey for the rest of the day.
Bladder pain – a stabbing and burning pain that just starts up randomly at anytime in the day and can last minutes or hours
Brain fog – confusion and fogginess
Irritability – sometimes I just feel like I am going to snap, for no reason whatsoever
Some things just can’t be found out for definite, but my suspicions are: weak digestive system on birth, either due to antibiotic use by my mother and/ or food allergy (dairy intolerance was evident as a baby); antibiotic use throughout childhood, mid teens (when I had a mystery illness that took months of antibiotic treatment) and overuse in late 20’s due to recurrent throat infections; frequent alcohol intake; and smoking.
So this is how treatment progressed:
July 2012: Stopped taking all medication prescribed by my GP, including Lanzoprazole, Gaviscon and Loperamide. Speculative Anti-Candida Diet whilst waiting for my test results. This got me from completely bed ridden to sofa surfing.
August – December 2012: Low starch (but not no-starch) diet with anti-inflammatories, immune boosters, probiotics and antibacterials. During this time I suffered almost constant nausea, bloating and bad fatigue. As time progressed I did see a reduction in the constancy of the nausea, but it’s violence did not subside when it did hit. No change in the constant hunger or pain in bladder.
January – March 2013: Continuation of the low-starch diet with probiotics, antibacterials, and amino acid complexes to heal the gut lining. I saw slight improvement when taking the amino acid complex, however the nausea, bloating and constant hunger remained, as did the bladder pain.
March 2013: I was not seeing any real progress. I had managed to go back to work part-time but the symptoms had only been relieved to a certain degree – enough to function for about 4 hours a day in work, but then when I got home the pain, bloating, nausea and fatigue kicked in again so it was still an unsustainable situation. I decided to see a private doctor, and chose one from Dr Sarah Myhill’s list of Ecological Medicine practitioners. He immediately diagnosed (though not through testing) Candida overgrowth (something I had suspected from the beginning, but the initial stool test had not shown this – but testing for candida is notoriously difficult) and Chronic Fatigue Syndrome. The same day I began a 3-month Anti-Candida diet, supplemented by Horopito and Aniseed as the anti-fungal, liver support tinctures to help with the die-off reaction, and probiotics. For three weeks I suffered with horrible die-off symptoms, but once they started to lift I felt a bit better, but nothing to write home about.
April 2013: Alongside the Anti-Candida regime I started on Dr Sarah Myhill’s suggested supplementation plan for Chronic Fatigue Syndrome. My doctor, as well as a lot of other private practitioners who treat Chronic Fatigue, swear by her supplementation and treatment regime.
June 2013: Nothing much had changed. Everyday I woke up expecting to feel a bit better, but nothing was happening. At the end of the three month Anti-Candida diet regime, I told the doctor that I didn’t feel much better, and he suggested that I might be suffering from SIBO – Small Intestine Bacterial Overgrowth. I’d never heard of it. I went home and researched it, and within 24 hrs I had ordered the SIBO test through Biolab. At the same time, whilst I waited for the test to arrive in the post, I started the Specific Carbohydrate Diet, as it’s this or the GAPS diet that are suggested for treating SIBO. This was one of the hardest decisions to make – having just finished the restrictions of the Anti-Candida Diet, going on an even stricter diet was a hard mental leap – especially as the doctor had got my hopes up during the Candida diet, promising that the diet restrictions could be lifted once the 3 months were over, and he would recommend good pubs on my journey home for me to sample the local ale delights – a favorite old pastime that I had given up when I got ill.
It was also in June that I made the huge step to have all of my mercury amalgams removed and replaced with non-metal based material. I had read so much about mercury poisoning and it’s concurrence with bacterial and fungal overgrowth, and as the diet and supplements did not seem to be having a major impact, I figured drastic measures were in order. It was expensive, and unpleasant, but it’s done now. One less thing to worry about.
July 2013: Within 4 days of starting the Specific Carbohydrate diet (SCD), my brain fog had cleared, the headaches subsided, and I felt completely mentally aware and alert. It had been years since I felt so clear headed. And my bladder pain immediately reduced, now just a sharp ache every few days rather than daily stabbing pain. Things were changing. I decided that the SCD diet was the one for me, so I delved into it wholeheartedly. The SIBO test was positive, and my doctor suggested antibiotic treatment to clear the bacteria. As overuse of antibiotics was a major cause in my illness, I proceeded with trepidation.
August 2013: The antibiotics made no difference in the first instance – 2 weeks of Amoxicillin. I then tried Metronidazole – within 2 days I was so sick (nausea, headache, stomach pain) that I swore off antibiotics again and decided to find a different doctor with a more natural treatment approach to SIBO. I also felt that my doctor had not taken into consideration all of my symptoms, I just didn’t trust that he was working hard on trying to help me.
September 2013: I decided more drastic measures were required. I started the Gut and Psychology Syndrome diet off my own bat, having researched methods for treating SIBO and severe digestive disorders, and two weeks in had my first appointment with my new doc, Dr Jens Rohrbeck in Bristol. Dr Rohrbeck is a GAPS practitioner, and from the outset seemed to understand the most part of my symptoms. He suggested some blood tests to figure out if I had nutritional deficiencies, a mitochondrial workup and testing for heavy metal toxicity. Less than a week later I had proof of severe nutritional deficiencies, especially in Zinc, Magnesium, Selenium, and Vitamin B3. My mitochondrial function showed up as impaired and needing magnesium to aid function – therefore ‘proving’ Chronic Fatigue. We had also identified a major sensitivity to nickel – a very toxic metal. So for the first time since the beginning of my major symptoms I had something tangible to treat – SIBO, nutritional deficiencies, Chronic Fatigue and nickel toxicity.
The GAPS diet also outlined a very important factor – I can not digest fat properly, confirming gut dysfunction (the focus on stock, animal fat and fatty meat made me sicker). I suspect that bile and acid production is impaired due to the nutritional deficiencies – things like Zinc and B vitamins are essential for normal gut function, and as I am majorly deficient, it’s no wonder my stomach isn’t working properly. SIBO can also cause bile problems and fat malabsorption, so I don’t have a chance really!
Early October 2013: I decided to start injecting Magnesium and Vitamin B12. Having taken supplements for months with no major upward trajectory in recovery I figured my digestive system was just not capable of absorbing the amounts of nutrients that I need, so Dr Rohrbeck taught me how to administer intramuscular injections and away I went. Within a few days I felt like my energy was much more stable (could perform tasks for longer without feeling major muscle weakness and dizziness; more energy first thing in the morning). Also, the bladder pain had almost completely gone, and I haven’t had a throat infection since I started the first diet in July 2013.
Late October 2013: I am treating SIBO (and possibly Candida – best to err on the side of caution!), Chronic Fatigue Syndrome, low acid and bile production i.e gut dysfunction, hypoglycemia, and nickel toxicity. My current treatment regime includes:
probiotics; digestive enzymes and ox bile; multivitamins; liquid minerals; Nicotinamide and Niacin (belts and braces!); Magnesium (daily) and B12 (bi-weekly) injections; CFS supplements (Dr Myhill’s recommended regime); a 2 month long nickel detox using L-methionine, L-glutathione and zinc; GAPS diet; detoxification using detox baths, dry skin brushing and juicing; and pacing to reduce the impact of fatigue (I am prone to delayed fatigue after overdoing it – which can be nothing more than standing at the cooker and making soup for 10 minutes longer than usual). Something in here (at last!) is working.
UPDATE: Late October – Mid November 2013: I tried to work my way through the early stages of the GAPS diet, but it just didn’t seem to be working for me. Bloating and nausea crept back in and my energy was really low from the restriction of nutrients. I started to eat small amounts of honey and almond butter to keep me going in work, which over a 2 week period turned into a honey and nut butter obsession – I was eating a jar of nut butter a day, and 1/4 jar of honey. This resulted in major bloating, but psychologically I could not stop – it was comforting and delicious and I was very depressed at the diet’s failure to reap progressive rewards.
Mid-November 2013: As nothing seemed to be working, and my doctor was perplexed at the lack of improvement on GAPS, he flippantly suggested that I go back to eating what I used to eat to see if it made a difference. I happily started eating oats, quinoa, brown rice, nuts, honey and small amounts of fruit again. The result? Within 2 weeks I was depressed, had what felt like flu and a throat infection, a constant crushing headache and lost all motivation and interest in life.
December 2014: Out of utter despair comes new motivation. I felt like I wanted it all to end, that no matter what I did the symptoms just got worse. But after a few days of complete depression and wallowing, I pulled it together enough to do some more research and found the SCD Lifestyle website, with their advanced techniques for using the SCD diet to heal SIBO, leaky gut and treat low acid/ enzyme/ bile production. GREAT! I immediately started their SCD Diet for ‘Tough Cases’. Back to an incredibly restricted diet, but I was motivated and convinced this was the answer. I also contacted the guys at SCD Lifestyle through their facebook site (a great resource and way to connect with people by the way), and they suggested I get my cortisol/ adrenal gland function tested. I immediately did so. And thank goodness – I found that I have constantly elevated cortisol, which needs to be addressed before anything else can change. So, another game changer!
January 2014: Having survived Christmas and New Year on the new regime (albeit a few blips that involved some dark chocolate, popcorn and cheese – oops), I discovered and completed the L-Glutamine Protocol and started to supplement with Betaine with Pepsin to aid my low stomach acid problems. These had a MASSIVE effect on everything! Energy, motivation, digestion, pain in my upper stomach. It all seemed to be going in the right direction. At last, I thought! I started to reintroduce foods back into my diet quite quickly, thinking the healing was well under way.
February 2014: Bad idea! The reintroduction of foods did not go well. I immediately experienced more bloating, wind, pain, fatigue and nausea. And nausea is the one thing I can barely cope with anymore. After 2 full years of it, when it creeps back in for longer than an hour at a time, I know things are going backwards and I need to reassess what I am doing. SO, it felt like back to the drawing board all over again. As I never found a true food-safe zone (see SCD Lifestyle website for more info on getting to a food-safe zone), I did more research. The quest continued.
Mid-February 2014: Things I learnt through my diet tribulations of late: likely FODMAP, fat, and possibly Histamine intolerance. I found Mickey Trescott’s website Autoimmune Paleo and Sarah Ballantyne’s The Paleo Mom, both of which have filled in so many gaps for me regarding how the different elements of my illness work and affect each other, and how to treat them. I started the Autoimmune Paleo Protocol on 7th Feb, combined with the Low FODMAP and Low Histamine diets. Yet again, I am hoping for a miracle!
Slowly slowly catchy monkey. My case is complicated, and I had gotten to rock bottom before I started treatment, so I have a long way to climb back from. I found it so so hard to find the right information for me, and to find the right practitioner to help me, but I feel like I am on the right track at last and am seeing improvements every few days, rather than every few months as was the case until August 2013. A whole year. Ah well, as my lovely partner Liz is always saying to me, “we only learn as fast as we learn”.
Hopefully this story will help someone out there find some answers. “The truth”, as my 14-year-old-X-File-obsessed-self promoted via an embossed set of dog tags, “is out there”. I’d love to hear your story too, please post to your heart’s content!