My Story

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Table of Contents
Where it all began
Approach
Tests
Results
Treatments
The Problem With This Approach
Dietitian / Nutritionist / Nutritional Therapist
Further Reading And References

Every person with gut health problems will undergo a journey that is unique to them. As far as IBS is concerned, since it is a diagnosis based on other gut issues being ruled out, there could be a range of reasons why a particular person develops IBS and how that person can manage their symptoms. However, current research is showing that there are some common threads. I discuss my own journey below, including highlighting the many pit falls during my attempt to tackle this life limiting syndrome, in the hope that some of the issues might resonate with others and allow others to avoid some of the mistakes that I made.

Where it all began

I was diagnosed with IBS via a colonoscopy after food poisoning from a trip to Mexico and antibiotics for an unrelated issue in my early 30s. I had IBS a couple of weeks at a time and managed intermittent diarrhoea and cramping symptoms successfully with antispasmodics (Mebeverine/Colofac).
In my 40s I experienced digestive problems and then two long bouts of IBS-D (diarrhoea dominant IBS) due to work stress each lasting 6 months. I managed this with a very low fibre diet and peppermint to control gas.
In 2011 I was diagnosed with GERD (gastroesophageal reflux disease) and had to be on PPIs (proton pump inhibitors) for several months and on and off from thereon. I also slept on a 20cm incline, to keep stomach contents in place overnight as per guidance. I had consistent bloating after meals.
Suspecting candida, I took caprylic acid and followed an anti-candida diet. I was unsure whether this helped symptoms.
In 2013 I experienced severe mid to lower back pain whilst lying in bed from 4am which resolved on rising. This symptom severely interrupted sleep. I had to get out of bed and walk around for the pain to settle, for it only to come back again on lying down when trying to get back to sleep. At that point I wished I could sleep standing up like some animals do, which might have solved my problem. A gastroenterologist said this was GERD and I was prescribed PPIs again.
In 2014 after the second long bout of IBS-D, I’d read about the FODMAP elimination and reintroduction diet and discussed this with my GP, who referred me to a FODMAP trained NHS dietitian to take me through this. Through the reintroduction phase of the diet, I found that I tolerated very few FODMAPs with the prevailing symptom of foods triggering the early morning mid to lower back pain. I controlled both back pain and IBS by avoiding trigger foods but my diet became extremely limited.
In 2018 the early morning back pain returned nightly, any time from 2am-5am despite not consuming trigger foods. I controlled this to a degree by sleeping bolt upright but since I was accustomed to side sleeping, this not only impacted my ability to sleep, but also my hips and torso which affected being able to exercise. I became very sleep deprived.
Since my back would go into spasm overnight whilst lying down, I saw a chiropractor, but after several weeks of chiropractic treatment I was no further forward. I’d started to notice that the severity of the pain seemed to be related to foods that I was eating.
Every NHS medical professional said that the morning back pain was GERD; however the pain occurred across the middle of the back, the lower back and down the sides of the back which is the location of the large intestine. It would also occur around the time that the large intestine ‘wakes up’ or is at its most active. If it were GERD the pain would be felt between the shoulder blades. After being offered PPIs (yet again) for my symptoms, I decided to employ the services of a nutritional therapist. Unfortunately, in my case, this turned out to be a big mistake. The following describes the approach that they took, how my health became comprised even further as a result (so I would not recommend this) and how I managed to get my own specific diagnosis from the NHS, which guided me towards the management required for my particular symptoms.

Approach

Nutritional therapists are not recognised by the NHS in the UK. Many nutritional therapists who take the ‘Functional Medicine‘ approach work on the principle of the ‘5 R Programme’ which includes:

Remove all food intolerances from the diet and parasites or other bad bugs such as bacteria or yeast. This might involve using an “elimination diet” to find out what foods are causing gastrointestinal symptoms and/or it may involve taking drugs or herbs to eradicate a particular bug
Replace e.g. enzymes, hydrochloric acid assuming that food reactions are due to a deficiency of these [much research does not solely relate food intolerances to such deficiencies]
Re-inoculate to rebuild gut flora. Help beneficial bacteria to flourish by ingesting probiotic foods or supplements that contain the “good” bacteria such as bifidobacteria and lactobacillus species, and by consuming the high soluble fibre foods that good bugs like to eat, called “prebiotics.” Probiotics are beneficial microorganisms found in the gut that are also called “friendly bacteria.” Use of antibiotics kills both good and bad bacteria. Probiotics in the form of supplements or food are needed to re-inoculate the gut. Fermented foods, such as yogurt, miso, and tempeh are food sources of probiotics. Prebiotics are nondigestible food ingredients that selectively stimulate the growth of beneficial microorganisms already in the colon. In other words, prebiotics feed probiotics. Prebiotics are available in many foods that contain a fibre called inulin, including artichokes, garlic, leeks, onion, chicory, tofu, and other soy products. Grains such as barley, flax, oats, and wheat are also good sources of prebiotics. Another good prebiotic source is a supplement called “fructo-oligosaccharide” or FOS.
Repair the gut lining by using for example, bone broth, collagen powder, L-glutamine
Rebalance lifestyle by reducing stress, taking up meditation and having work/life balance

(1)

Tests

The first nutritional therapist I employed, asked me to complete a questionnaire about my general health. Based on the questionnaire, I was recommended the following expensive tests:

Comprehensive Stool Analysis/Partasitology (bacteria/yeasts/parasites) with H Pylori test – Doctor’s Data. [Note that I wasn’t aware that the test for H Pylori was available for free on the NHS]

Microbial Organic Acids (metabolites produced from yeasts and bacteria) – Great Plains

Dutch complete (hormone test)– Precision Analytical. [This was a highly complex test which took up the vast majority of the test result consultation time when my main issue was digestion related. This meant the meeting lost focus and I didn’t get many of my queries about the gut tests answered. I should have been advised to do this test later to address secondary health concerns. Many of the tests had prerequisites regarding allowable foods/supplements/position within menstrual cycle up to weeks in advance of test. By having so many tests I had to put a plan together so that tests could be carried out at the right time and I knew when to stop consuming certain foods/supplements; this meant the whole testing phase took more than 1.5 months]

SIBO Breath Test using Lactulose (Small Intestine Bacterial Overgrowth), BreathTracker. [This is a controversial test, which can give inaccurate results. You have a special diet for 2 days to not feed bacteria and then drink a lactulose solution which feeds bacteria and capture your breath at specific intervals to measure the amount of hydrogen and methane (suspected to be produced by gut bacteria) in your breath. If excess hydrogen and methane is produced too early it is suspected that this is produced by too much bacteria in your small intestine. Food is processed by the small intestine prior to residue reaching the large intestine where a far greater amount of bacteria would be expected. It is thought that an excess of bacteria in the small intestine causes gastrointestinal symptoms (diarrhoea if hydrogen dominant or constipation if methane dominant) and food sensitivities. However, this all depends on individual gut transit time, which means that false positive results are possible. There also isn’t consensus as to what the cut off amounts for the gases are that relate to a positive test. (2)]

SIBO urine test for Hydrogen Sulfide, Protea Biopharma. [This test was recommended by the nutritional therapist after she said I tested positive for SIBO. This arrived as a test kit for Urine Th1/Th2 Balance (UBT) which is an immune system test. When I told the therapist I had received the wrong test she was insistent it was the right one and it was a test currently under research for testing whether any hydrogen sulfide producing bacteria is present. My test showed in the normal range for Th1/Th2 but the therapist said from the colour of my sample I tested positive for hydrogen sulfide. This means that all patients who were in the same normal range as me have hydrogen sulfide producing bacteria, which sounds ludicrous. There is no approved test available for the testing hydrogen sulfide producing bacteria]

Results

The nutritional therapist interpreted the results of the tests as follows:

Positive for SIBO (hydrogen & methane – one therapist said I was positive for methane another said I was negative – this highlights the controversial nature of these tests)
Slightly low morning cortisol levels
Citrobacter freundii and yeast gut infections

Treatments

The treatments listed in the following table are in chronological order. They include supplements, complementary therapies and interactions with the NHS. I have also indicated where I tried to re-introduce some foods into my diet. Note that where I mention ‘recommended’ or ‘not recommended’, this was in regards to my own treatment, since I was being treated for something that I didn’t have in reality (SIBO). Whether some products would help others is unclear. Many that concentrate on destroying the microbiome would not necessarily be advisable, particularly when used over a long period of time:

Treatment	Rationale / Outcome
Elemental diet (Absorb Plus) 4 scoops per meal (10 servings per container) For Remove phase for SIBO As advised by Nutritional Therapist 1 Research: (3) NOT RECOMMENDED	The purpose of this is to feed me but starve my gut bacteria to reduce the excess of bacteria in the small intestine to treat small intestine bacterial overgrowth (SIBO). I initially had 3 servings a day, but increased to 4 servings due to weight loss. The total cost and amount of formula required to replace meals was extortionate. However, from the studies on it, you are tricked into believing that you could be cured at the end of the treatment. This diet left me tied to the house for 2 weeks. As it’s a liquid diet, it is liquid in and liquid out from your bowels. At times I felt my heart racing which can be a side effect and I didn’t feel well at all on it. Although my symptoms were reduced, they had not completely gone and when I re-took the SIBO breath test, although my methane gases had reduced to zero, my hydrogen had gone up. This can be attributed to the fact that methane producing bacteria feed off hydrogen, so if these disappear there will be more hydrogen in your system. I wished I had never been advised to take this. Due to the poor result and the performance of the therapist in general I decided to find a different therapist.
SIBO Bi-Phasic diet For Remove phase for SIBO As advised by Nutritional Therapist 1 & 2 NOT RECOMMENDED	This is a variation of the SCD (specific carbohydrate diet) which is highly restrictive diet designed not to feed your microbiome in order to reduce bacterial numbers in the small intestine. I lost over 1 stone in weight which I could not afford to lose on this diet, lost all confidence and became a shadow of myself alongside the other treatments. It may have reduced my symptoms slightly, but this was not a fix (since I didn’t have SIBO). Not feeding your microbiome for any extended periods of time is dangerous for your health, since you are starving bacteria in your colon too. These bacteria have many essential functions in your body including reducing inflammation, aiding the digestion of food, making up a large part of your immune system and helping to keep diseases at bay. The reason why it may have helped slightly is due to the fact that colon bacteria is not fed and I had a dominant bad bug, which was also not being fed, but the good bacteria that help to control the bad bug are unfed too making the process futile. There are better ways to deal with bad bugs including taking a good probiotic.
GI Revive (210 capsules) Work up to 7 capsules per day over 1-2 weeks For Repair phase As advised by Nutritional Therapist 2 Research: here Reviews: here NOT RECOMMENDED	I took this for 17 days working up to 7 capsules in 8 days. Over the 17 days my early morning IBS referred intestinal back pain symptoms became gradually worse, so I had to discontinue it wasting about 1/3 of the bottle. This product is not for sensitive individuals. I was told by the therapist to be on a SCD (Specific Carbohydrate Diet) diet to not feed bacteria and this product contains the following SCD illegal ingredients: DGL, Slippery Elm, Marshmallow, Chamomile, Okra, Cat’s Claw, Citrus Pectin, Aloe Vera & MSM (Methylsulfonylmethane) The therapist seemed to be completely unaware of the ingredients and the potential to upset some individuals. I started doing my own research on supplements she recommended from this point, when I was supposed to be relying on and paying for her services as an ‘expert’.
Perm a vite 1/2 teaspoon initially at bedtime working up to 1 tablespoon over 1-2 weeks For Repair phase As advised by Nutritional Therapist 2 NOT RECOMMENDED	I worked up to 1.5 teaspoon over 5 days. This caused me significant referred intestinal morning back pain so I discontinued it. This product is not for sensitive individuals. It contains almost exactly the same ingredients as GI Revive apart from Prostrate (Bovine) so will have the same issues (see above). I am not sure why I was recommended 2 products that were almost exactly the same. I am not sure the therapist was aware that these had almost the same ingredients.
Magnesium (Lipd-X – 60 tablets providing 200mg magnesium as oxide & citrate) Start slow & work up to as many tablets at bedtime as needed to get a response (up to 6) For constipation due to low fibre diet recommended for SIBO and to increase motility As advised by Nutritional Therapist 2 Research: (4) RECOMMEND myvitamins 100mg Magnesium as oxide for temporary constipation relief	This was to assist with bowel movements to draw water into the bowels to soften stools whilst on a low fibre diet. I used this fairly reliably but had to keep adjusting the dose both up and down during different phases of the treatment and sometimes broke the tablet into 2 or 4 to get part doses. It is possible to build up a tolerance to it meaning that you have to keep increasing the dose to have an effect. Too much can cause diarrhoea, so starting slow is important. I started with 1 tablet and increased the dose by 1 tablet every couple of days. Note that this method is not recommended for long term use (4). However, I wouldn’t have been able to do without this in the absence of being able to consume more fibre. I took up to 6 of these at a time which meant that some times the bottle only lasted me 10 days. I asked the therapist if there were less expensive versions and she said she hadn’t seen any at the lower doses that allow you to work up the dose. However I found myvitamins 100mg Magnesium as oxide which was far more economical and more flexible for the dosage. Note that magnesium must be discontinued whilst on antibiotics since it can interfere with antibiotic absorption. Additionally, magnesium oxide may interact with certain medicines.
Vitamin C (2000mg Ascorbic acid) 1-10 capsules at bedtime For constipation due to low fibre diet recommended for SIBO and to increase motility As advised by Nutritional Therapist 2 Research: (5) NOT RECOMMENDED	This was to assist with bowel movements whilst on a low fibre diet. I worked up to 3 capsules in 6 days. This made my intestinal back pain symptoms worse and badly irritated my gut, so I had to discontinue it, leaving 1/2 bottle. This is not for sensitive individuals. There are also studies that high doses of vitamin C may be harmful to health due to it interfering with natural processes that allow cells in the body to die off, which is necessary to maintain health (6) (7) (8) (9). The therapist was recommending I take up to 20,000mg. When I mentioned the studies to the therapist she became quite irate and said that monkeys manufacture large quantities of their own Vitamin C and are no worse off for it. A more appropriate response might have been that she hadn’t seen that study and for me to send it across for her to investigate.
Ground Linseed (flaxseed) 1-6 teaspoons per day For constipation due to low fibre diet recommended for SIBO, to bulk out stools and increase motility As advised by Nutritional Therapist 2 DEPENDS on individual tolerance	I took up to 1 teaspoon in 4 days. This gave me a very bloated distended stomach so I discontinued it. This is not for sensitive individuals. I checked the Bi-Phasic diet and it said that flaxseed is not recommended due to it feeding bacteria. The therapist was totally unaware of this. Note that after taking a different approach with my gut issues, I now have no problems tolerating ground flaxseed. I currently grind 1 tablespoon of whole seeds in a coffee grinder which works out cheaper and add this to my breakfast.
Hydrozyme 1 tablet after few mouthfuls of food with breakfast, lunch & dinner For Replace phase As advised by Nutritional Therapist 2 NOT RECOMMENDED	To replace stomach acid & digestive enzymes. The therapist thought I had low stomach acid. The theory is if you don’t get heartburn after taking it, you have low stomach acid. I just had 1 pill with lunch, didn’t get heartburn, but had significant intestinal back pain the next morning, so I had to discontinue it. This is not for sensitive individuals. This supplement also contains digestive enzymes which I have had previous problems with. This wouldn’t have been a pure acid test due to the enzymes being present too, so it is unclear whether I reacted to the the enzymes, the acid or both. A NHS gastroenterologist advised me that true enzyme insufficiency is rare.
Sesame seeds (freshly ground) Up to 1 tablespoon allowed on SIBO Bi-Phasic diet For diet expansion Advised by self from SIBO Bi-Phasic diet sheet guidance DEPENDS on individual tolerance	1 desert spoon caused me significant intestinal back pain so I had to discontinue it. This is not for sensitive individuals. SCD (specific carbohydrate diet) community say to not have these initially: Sesame seeds: SCD Legal; May be tried after 3 months with no symptoms.
Psyllium seed 1/2 to 2 teaspoon daily For constipation due to low fibre diet recommended for SIBO, to bulk out stools and increase motility As advised by Nutritional Therapist 2 DEPENDS on individual tolerance	1/2 teaspoon 2 days in a row in small glass of water followed by large glass water before breakfast was great for bulking out stools but increased my intestinal morning back pain so I had to discontinue them. I tried this again much later when my gut was in a better state, but I got significant gradual bloating from it – in the end my belly was the size of a football and went down again when I stopped, so not for me. This is not for sensitive individuals. SCD (specific carbohydrate diet) community say to not have these: Psyllium husks: SCD Illegal – They are loaded with cellulose and lignin which some bacteria thrive on. Cellulose in vegetables and fruit can be handled, but a concentrated form such as husks can cause problems.
Rifaximin & Neomycin antibiotics – Rifaximin 550mg 3 times a day for 14 days (42 tablets) and Neomycin 500mg 2 times a day for 14 days (28 tablets) For Remove phase for hydrogen (with Rifaximin) and methane (with Neomycin) SIBO Rifaximin as advised by Nutritional Therapist 2 Research: (10) ONLY under guidance of gastroenterologist and SIBO is highly suspected	For the treatment of hydrogen and methane based SIBO. Rifaximin was not available on the NHS, so I had to obtain a prescription from a private gastroenterology appointment. The gastroenterologist wrote the prescription making it clear that he did not advocate its use, since he stated that true SIBO cases are rare (which tied in with the fact that none of the SIBO treatments worked for me so it was unlikely that I had it in the first place). He said that he would only allow it since it shouldn’t do me harm. Rifaximin itself is limited to action in the small intestine. Note that the private pharmacy I obtained these from no longer seem to supply these antibiotics. At the time Rifaximin was £332 and Neomycin £17. During the appointment I was referred for MRI of the small bowel since if I did have SIBO there can be physical elements that can cause it, some of which would be visible from the MRI. I had diarrhoea after the third day of this and had to stop taking magnesium which brought it under control (there were no instructions not to take magnesium which can impact antibiotic absorption). I became very bloated and had very bad nausea at times, particularly at night. This may have reduced my early morning back pain but had not eliminated it. It was difficult to tell since the therapist started me on some other supplements that disagreed with me following this treatment. However, surely if I really did have SIBO and the Rifaximin and Neomycin had done their job, I shouldn’t have continued to be so reactive to new substances. In hindsight I would not have gone ahead with this treatment, due to the cost, not being 100% sure I actually had SIBO, the side effects of the treatment and the fact that I took further antibiotics later on to treat the Citrobacter freundii which became antibiotic overload. There were some studies that the antibiotic used to treat Citrobacter freundii might also treat SIBO, so I could have had the other antibiotic on its own for a £8 NHS prescription charge. It is a shame that wherever you look on the internet about SIBO everyone says that you need Rifaximin including both therapists I dealt with. I didn’t find the other study regarding the cheaper antibiotic until much later on. That would have only involved 1 antibiotic for a limited period – although since I didn’t have SIBO, none of this was at all necessary.
Saccromyces Bouladrii (alongside antibiotics) 2 capsules after a couple of mouthfuls of food at breakfast and at dinner For Replace phase As advised by Nutritional Therapist 2 Research: here RECOMMENDED whilst on antibiotics	For the prevention of antibiotic associated diarrhoea. Once I had stopped the magnesium with the antibiotics, the Saccromyces Bouladrii prevented any further diarrhoea and eventually made me constipated so I was able to stop taking it. There are a large number of studies around Saccromyces Bouladrii’s ability to prevent antibiotic associated diarrhoea whilst taking antibiotics. It is a beneficial yeast which means that antibiotics won’t interfere with its action. If probiotics were taken at the same time as antibiotics, the antibiotic would kill the probiotics. If you do take probiotics it is recommended to take these 2 hours either way from antibiotics.
Ginger extract 1000mg (28 drops) in small amount of water before bedtime To aid motility for constipation As advised by Nutritional Therapist 2 and self Research: (11) (12) (13) RECOMMENDED for constipation	I used this alongside magnesium oxide reliably to help drive bowel movements. Latterly since I am now able to consume far more fibre, I have used this alone without the magnesium oxide. The therapist recommended Bitters & Ginger, which contains some SCD illegal ingredients (Astragalus root & Fennel seed), so I had to find ginger on its own myself (the product listed opposite). The instructions on the ginger bottle say to take 14 drops prior to meals. I did this and found that I was getting some stomach pain and loose’ish stools. My heart rate also dropped to around 50 BPM when it is normally 60-64 BPM and I was getting dizzy on standing. Ginger can lower heart rate and blood pressure so needs to be used cautiously (14) (15) (16) (17). I found a different recommendation of 1000mg or 28 drops before bedtime (18) and had no problems.
Kale < 1 cup about 45grams For diet expansion As advised by self DEPENDS on individual tolerance	4 mornings of severe intestinal back pain and gas throughout so discontinued it. This was potentially due to undigested raffinose from kale which feeds gut bacteria and produces gas. This occurs with cruciferous vegetables such as kale.
Garlic Plus Day 1 – 1 capsule Day 2 – 2 capsules From day 3 – 3 capsules with food For Remove phase for methane SIBO As advised by Nutritional Therapist 2 NOT RECOMMENDED	This gave me severe intestinal morning back pain after the third day (3 capsules), so I had to discontinue it. This is a natural antimicrobial to kill methane producing bacteria in the small intestine. The nutritional therapist wanted me to take natural antimicrobials for 1 month after the Rifaximin and Neomycin to ensure that the SIBO doesn’t come back. However, since I didn’t have a huge amount of success with the Rifaximin and Neomycin, the therapist should have surmised that I didn’t have SIBO and stopped there. In hindsight, it was negligent to continue pursuing destruction of the microbiome from this point onwards.
ADP Oregano 1 tablet with breakfast & 1 tablet with dinner For Remove phase for hydrogen SIBO As advised by Nutritional Therapist 2 NOT RECOMMENDED	This gave me bad intestinal back pain after 2 days, so I had to discontinue. This is a natural antimicrobial to kill hydrogen producing bacteria in the small intestine. The nutritional therapist wanted me to take natural antimicrobials for 1 month after the Rifaximin and Neomycin to ensure that the SIBO doesn’t come back. However, since I didn’t have a huge amount of success with the Rifaximin and Neomycin, the therapist should have surmised that I didn’t have SIBO and stopped there. In hindsight, it was negligent to continue pursuing destruction of the microbiome from this point onwards.
Arthred (pre-digested hydrolysed collagen for increased absorption) Mix 2 level scoops of powder into 250 ml of water once per day. Take away from other food for best effect so that it doesn’t compete for other proteins in a meal for absorption. Took 1 hour before breakfast. For Repair phase As advised by Nutritional Therapist 2 Research: (19) (20) UNSURE	I was OK taking this. The only side effect was initially being more prone to spots on my face (which other people have complained about in regard to collagen supplementation). It was hard to say whether it helped, although I certainly wasn’t worse off for taking it and may have been slightly better. This product is extremely expensive. However other hydrolysed collagen supplements aren’t pre-digested and may be less easily absorbed.
Allimed 1 hour before meals. Start slowly: 1 before lunch day 1 1 before breakfast & dinner day 2 1 before breakfast, lunch & dinner day 3. Worked up to 2 before breakfast lunch and dinner. For Remove phase for methane SIBO As advised by self Research: (21) (22) (23) (24) Reviews: here NOT RECOMMENDED	I was able to tolerate this for the month long (at full dose) natural antimicrobial treatment. At the end of the treatment my symptoms had not disappeared (probably because I didn’t have SIBO). I found this product (for methane producing bacteria in the small intestine) myself after I couldn’t tolerate the Garlic Plus. This product has the FODMAP component removed so from Garlic that it can be more easily tolerated. It is one of the products widely recommended by SIBO specialists in the US.
Berberine Complex With food. 1 cap 1x daily for 3-4 days, if tolerated 2 caps 1x daily for 3-4 days if tolerated 1 caps 3x daily for 1 week, if tolerated 2 caps 2 x daily for 1week, if tolerated Then: 2 caps 3 x daily (6 caps per day) THERAPEUTIC DOSE being 6/day Remove phase for hydrogen SIBO As advised by self Research: (21) (25) (26) (27) (28) Reviews: here NOT RECOMMENDED	I found this product (for hydrogen producing bacteria in the small intestine) myself after I couldn’t tolerate the ADP Oregano. I was able to tolerate this for the month long (at full dose) natural antimicrobial treatment. At the end of the treatment my symptoms had not disappeared.
Liqua-D (Vitamin D3) 1 drop (2000IU) per day For motility As advised by Nutritional Therapist 2 Research: (29) UNSURE	I had no problem with taking this though I’m not sure if it helped at all. Note that you can also get Vitamin D from mackerel, salmon and sunlight (30) (31). When I have supplemented with Vitamin D latterly both in tablet and liquid form, I have found it highly constipating. This seems to corroborate with research since excess vitamin D can can cause constipation, having the opposite intended effect (32).
Small Bowel MRI scan (NHS) For SIBO investigation As advised by Gastroenterologist RECOMMENDED	This test was suggested by the Gastroenterologist when I had my private appointment to investigate root causes for SIBO. To get this test done privately the test would have cost £1000, so fortunately I was able to transfer to the NHS for the scan at this point. A hand out regarding SIBO was provided to me by the nutritional therapist. The ‘Aetiology’ box on the right shows potential root causes of SIBO. I worked through this list with the gastroenterologist with comments noted against each from our discussion below: Viewable from small bowel MRI scan: • Stasis: dysmotility – not apparent • Surgery (loops, vagotomy, bariatric) – not apparent • Short Bowel Syndrome – not apparent • I also added ileocecal valve (which sits between the small and large intestine) to this list, which my therapist said was stuck open allowing bacteria from my large intestine to wash back into my small bowel and I’d need to visit an osteopath who practices visceral (organ) manipulation to get them to close it for me (or you can do it yourself via a YouTube video). I had to go to another city 1.5 hours away to visit such an osteopath who eventually said he didn’t manipulate the ileocecal valve (although a phone call indicated he might), but I had a couple of sessions of him manipulating my intestines because they were stiff. My small bowel MRI showed there was nothing at all wrong with my ileocecal valve – it was closed and showed no inflammation or any abnormality that would cause SIBO. Others: • Achlorhydria – no stomach acid – he said this was highly unlikely and also considering I can experience acid reflux. I also would have thought a faecal elastase test would show if you aren’t breaking down proteins correctly (which require stomach acid for digestion) and mine came back OK. • Hypochlorhydria – low stomach acid – same answer as above – the only real test is a PH test directly into your stomach, but he said they didn’t do this anymore and home testing is inaccurate • PPIs – my therapist said that I hadn’t been on PPIs long enough to make a difference • Malnutrition – no • Collagen vascular disease – immune system inflammation e.g. arthritis – not in my case • Immune deficiency – unlikely • Advancing Age – no • Chronic Pancreatitis – this causes constant abdominal pain/fatty stools – no. It is interesting that someone had mentioned on a forum that they responded to Rifaximin but was also diagnosed with a compromised pancreas. • Chronic ABX use – no • IgA Deficiency – my tests show this is normal range • Coeliac Disease – I had blood tests with the GP and these came back fine • Crohn’s Disease – I had blood tests with the GP and these came back fine and colonoscopy was OK • NASH – non alcoholic fatty liver disease –looked at my records for this and this is normal • Cirrhosis – no • Fibromyalgia – widespread pain – no • Rosacea – no The results stated that the MRI scan showed a normal small bowel with no evidence of any small bowel inflammation, no stagnent loops, no strictures and no diverticula or fistula. Nothing was seen that would predispose to small intestine bacterial overgrowth. In my follow up appointment, the registrar suggested that I have some stool tests conducted to double check for issues with the large intestine such as inflammation. Even though I had had these tests conducted in the past, he suggested that it was prudent to take them again. I now thought that it was unlikely that I’d ever had SIBO, even though the (inaccurate) SIBO breath test stated that I was positive. I realised that I’d wasted a great deal of money and potentially impacted my health in trying to treat it. Note that there was a gap between the test and the results and reaching the conclusion that I didn’t have SIBO.
Beetroot (packaged – cooked) 2 slices – 3 days in a row For SIBO Bi-Phasic diet expansion As advised by self DEPENDS on individual tolerance	Gas, bloating and severe morning back pain after the 3rd day, so discontinued.
Cherry tomatoes (roasted) For SIBO Bi-Phasic diet expansion As advised by self DEPENDS on individual tolerance	Experienced heartburn, gas & morning back pain for up to 6 days after initially consuming these so discontinued.
Vitamin A drops 1 drop 5000IU For Remove phase As advised by Nutritional Therapist 2 Research: (33) NOT RECOMMENDED	I was concerned about taking this since Vitamin A is stored in the body and over-supplementation can cause harm. I was already taking a multi-vitamin and mineral supplement which had this at no more than RDA levels and I was eating lots of carrots. The therapist said carrots contain betacarotene, not vitamin A. This needs to be converted in the body. She stated that the point of taking an oral (preferably liquid) supplement of Vitamin A is for it to work in the gut to support the production of SigIgA which helps the immune system fight pathogens. My report showed a figure of 162 for SigIga with a reference range of 51 to 204, so I was within range. She said she would have expected the SigA to be higher in response to the dysbiosis, particularly the citrobacter freundii infection, so it may be appropriate to supplement for a short period of time. After 11 days of taking this I had a vomiting episode. I had been concerned about taking such high doses of Vitamin A anyway so I discontinued it.
Cirpofloxacin 500mg x 2 a day for 10 days Schedule: 6.45am: 1 x Cirpofloxacin Few bites breakfast then: 2 x Saccharomyces boulardii* Few bites lunch then: 1 x Probiotic* 6.45pm: 1 x Cirpofloxacin Few bites dinner then: 2 x Saccharomyces boulardii* Beneficial yeast unaffected by antibiotics to protect against antibiotic associated diarrhea – to be taken up to 2 weeks after antibiotics. Probiotic to be taken 2 hours away from antibiotics and for 1 month after. For Remove phase As advised by Comprehensive Digestion Stool Analysis & Parasitology (CDSA/P) report to work on Citrobacter freundii infection NOT RECOMMENDED*	My CDSA/P report showed I had a Citrobacter freundii infection. The testing lab tests various natural anti-microbials and antibiotics against the stool sample to find out which has the best chance of fighting the infection. In terms of natural anti-microbials my report showed my infection had a high sensitivity to: – Uva Ursi – this has safety concerns (34). – Grapefruit seed extract – it’s antimicrobial activity is due to chemicals used in extraction process and not the extract itself; advice is not to use. (35) – Silver – has safety concerns. My nutritional therapist said during an early consultation that she never uses Silver, but since she was running out of natural antimicrobial options, she inconsistently and suddenly started advocating it and provided a paper to back up its safety (36) and recommended Silvercillin™ which, at the time, was more than £70 in the UK. Due to the conflicting advice and cost I decided to go with Cirprofloxacin antibiotic since at least it is prescribed within the NHS. A GP reluctantly prescribed it to me since he was worried it would adversely impact my microbiome. I said I would protect myself by taking Saccharomyces Boulardii & probiotics at the same time. Ciprofloxacin was also mentioned on the report as an antibiotic that Citrobacter freundii would be susceptible to and also been used to treat SIBO (37). I had to stop whey protein and magnesium supplementation whilst on these antibiotics since they can decrease absorption.
ProBiota Sensitive SCD + GAPS Compliant – 60 vCapsules 1 capsule a day (Probiotic Blend (25+ billion CFUs) whilst on antibiotics and planned for 1 month after. For Reinoculate phase As advised by self NOT RECOMMENDED	My therapist recommended other probiotics which were either expensive, had histamine forming strains or ingredients that were not SCD compliant, so I found this probiotic myself. All recommended probiotics had > 20 billion CFUs. Note that this product does not seem to be available anymore. I took these probiotics without problem whilst I was on antibiotics. However, 2 days after stopping the Ciprofloxacin I became very dizzy and was violently sick for about 1 hour. I had reintroduced whey protein (which I had been taking without problem before the antibiotics) at this point, so I stopped taking the whey and the probiotic and then re-tried the probiotic on its own later. This gave me severe palpitations and nausea in the middle of the night 18 hours after consuming it. I was very gassy for a while afterwards too. I think I had no problem whilst on the antibiotics since they would have killed some of the probiotic off. I did try a small amount of whey protein and that made me feel nauseous. Something about my microbiome had changed so that I could no longer tolerate whey. I had to discontinue the whey and the probiotic. It is also possible that the CFUs was too high for me or I reacted to one or more of its components. I also wondered if taking the Saccharomyces Boulardii at the same time had increased my SigA immune response resulting in the palpitations. There is evidence that IBS sufferers fare less well on high CFU (>10 billion) probiotics (42).
Zinc Carnosine 1 capsule on empty stomach before breakfast For Repair phase As advised by self Research: (24) (38) (39) Reviews: here NOT RECOMMENDED	I decided to take this since it was one of the components of GI Revive which I couldn’t tolerate and I’d assumed it was because that product contained SCD illegal ingredients. I found some good studies on Zinc Carnosine in regard to gut health and repair so wanted to give it a try. I’d mentioned it to the nutritional therapist who said she never recommends it. However, I had to point out to her that it was one of the components of a product she did recommend. I took 1 capsule Drs Best Pepzin GI Zinc Carnosine on an empty stomach and immediately started breakfast. I had trapped gas, belching and slightly elevated heart rate all day (76-80 bpm), which was not normal for me. On a blog (40) someone mentioned they had: ” … gas almost immediately, then queasiness” from this product. The answer on the blog was: “people with histamine intolerance issues may react negatively to the carnosine component in zinc carnosine being L-histidine.” On this basis I did not take any more.
Lifeplan acidophilus & rhamnosus probiotic (4 billion CFUs) 1/4 capsule for 2 days then 1/2 capsule for 3 days then 1 capsule for 3 days before breakfast. 1 capsule before breakfast and 0.5 capsule before dinner for 2 days. Then 1 capsule before breakfast and 1 capsule before dinner – this was too much so dropped back to 1.5 capsules for a maintenance dose. For Reinoculate phase As advised by self Research: Acidophilus inhibits Citrobacter freundii infection (41) Lower probiotic dose better results for IBS (42) Lactobacillus rhamnosus benefits (43) Reviews: here NOT RECOMMENDED	After the severe reaction I had to the high level of CFU probiotic that I had previously taken I decided to play it safe and purchase a lower dose probiotic with fewer, but well studied strains. I had also previously taken acidophilus & rhamnosus without ill effects, although the previous product also contained casei which is histamine forming and I wanted to avoid this. I had upper gastrointestinal gas when I started on these probiotics, which became severe when I moved to 2 capsules. At this point I felt extremely nauseous as though I was about to be sick and had hot flushes. This was due to a high level of trapped gas. When I reduced the dose back down to 1.5 capsules per day I was absolutely fine and I used this dose successfully on a long term basis whilst I have been unable to feed my own microbiome with fibre and FODMAPS. A study suggests that IBS sufferers do better on lower doses of probiotics (42) which might explain the reaction I had to the 25+ billion CFUs product. Interestingly I used to take 6 billion of the old probiotic I used to take, which was within the range of dosage I settled on with the new one.
Stool & blood tests (NHS) As advised by NHS Gastroenterologist registrar RECOMMENDED	During my gastroenterology follow up appointment with the NHS registrar after my small bowel MRI scan, since I was no further forward with my symptoms, the registrar suggested that I have some tests re-run to find out the current position of my health. These were: Stool: Test Item: CALP – Calprotectin which tests for inflammation Test Item: FE1 – Faecal elastase – Elastase is an enzyme produced by special (exocrine) tissue in the pancreas. This test measures the amount of elastase in stool (faeces) to help evaluate whether a person’s pancreas is functioning properly. Blood: Test Item: SFOL (Folate / B12?), FER (Iron) Test Item: MAG (Magnesium), CO, CRP (C-reactive protein inflammation test), FBC2 (full blood count), ESR (Erythrocyte sedimentation rate for inflammation), LFT (liver function test), B, GGT (gamma-glutamyl transpeptidase enzyme), UEs (urea and electrolytes and is a measure of kidney function) (=N), (=) The results of these NHS tests indicated a significant amount of inflammation so a colonoscopy of my large intestine was requested, as the registrar was concerned that I had developed inflammatory bowel disease. Note that prior to my nutritional therapy treatment my inflammation markers were normal. Latterly I found out that a healthy microbiome helps to reduce inflammation in the body. The nutritional therapy treatment had involved attacking my microbiome. Additionally, high protein, low fibre diets (effectively the diet I was put on to treat SIBO, which I didn’t have) can cause inflammation in the body. Both led to a compromised microbiome, which in the end, I feel was the culprit for these poor results. It also highlighted the damage I was doing to my body from the nutritional therapy tests and treatments.
Hazelnuts 10 ground with 10 ground almonds that I was already consuming every breakfast time For SIBO Bi-Phasic diet expansion As advised by self DEPENDS on individual tolerance	Morning back pain started to gradually increase over 1 week of consuming these in addition to the almonds so I discontinued them.
Digest Basic Enzymes 1/4 capsule with breakfast for 3 days For Reinoculate phase As advised by self NOT RECOMMENDED	The nutritional therapist had suggested taking enzymes. I’d previously had problems taking enzymes so I decided to try these ones which are low dose rather than ones she recommended which were much higher dose. I also decided to take part of a dose to be even safer. I had significant morning intestinal back pain after the 3rd 1/4 capsule, so I had to discontinue it. My adverse symptoms continued a few days after discontinuing them. There is controversy as to whether enzymes need to be supplemented. It is suggested that a person’s own enzyme production is unlikely to be impaired (44) and that showing signs of some undigested fibrous foods in stools can be completely normal (45).
Colonoscopy (NHS) As advised by Gastroenterology registrar RECOMMENDED if inflammation markers elevated and/or advised by medical professional	Despite being sedated, having a morphine shot and being on gas and air I found the colonoscopy extremely painful. My discharge sheet said that I had visceral hypersensitivity and a long loopy colon typical of IBS-C sufferers. The hospital gastroenterologist chose to abandon the procedure as there was excessive looping in the transverse and right colon causing pain to me during the procedure and preventing him from advancing. Although I was willing to carry on, he did not want to due to the risks from his perspective. He booked a CT scan (virtual colonoscopy) for completeness. The colon tissue that he could see appeared healthy.
CT Virtual Colonoscopy As advised by Gastroenterology registrar RECOMMENDED if inflammation markers elevated and/or advised by medical professional	This involved my large intestine being inflated with gas whilst a CT scan was taken whilst lying on my back and my front. I had to attract the attention of those carrying out the scan for them to stop whilst I was lying on my back due to being in extreme pain from the gas. I was unable to take Buscopan which is used as a colon relaxant due to previous reactions (heart palpitations) to it. They stopped the gas and I was able to continue with the scan whilst lying on my front. I was still in a lot of pain whilst rising from the bed. The exceptional pain from the Colonoscopy and CT Virtual Colonoscopy was a blessing in disguise. It led to a definitive diagnosis for my symptoms. My pain and bowel symptoms were not related to SIBO at all, but connected to IBS with visceral hypersensitivity from over sensitisation of nerve endings in the gut. The mention of ‘visceral hypersensitivity’ by the gastroenterologist during my colonoscopy and ‘IBS-C due to a long loopy colon’, made everything fall into place. I had read many scientific papers regarding methods of measuring IBS symptoms. One of those methods is pumping gas into intestines of patients to see how they react to distension of the bowel from the gas. This method can be used as a measure of how well new pain treatments are working during clinical trials. Healthy patients do not experience pain from the excess gas – intestines expand to accommodate the gas without sending pain signals to the brain. In IBS patients, more signals are sent to the brain from intestinal nerves in response to the distension and/or the brain picks up the signals indicating the distension as pain signals rather than just the normal activity of the bowel related to the extra gas.
Nerve pain medication on prescription (10mg amitriptyline 1 tablet at 10pm) As advised by gastroenterologist DEPENDS on individual tolerance	I was prescribed 10mg amitriptyline as a nerve pain agent for my visceral hypersensitivity. This is part of the family of tricyclic antidepressants that are used as analgesics (nerve related pain medication) at low doses. I had read lots of studies around the fact that if taken for 6 to 12 months they not only act on the pain that is being experienced but may also help to replace neurons in pain control centres of the brain that have been lost thus providing a long term cure for the condition. I had been offered these in the past with the explanation that people with IBS feel pain more than other people. However, this explanation made me feel that I was being offered anti-depressants since I lacked the ability to cope and I was being weak for not putting up with pain that other people would be able to deal with. I am sure most IBS sufferers have to deal with so much and carry on with their life despite their condition, so this explanation can be seen as a bit on an insult, as if they are being assessed as being weak. A better explanation might have been that people who suffer from such pain have a loss of neurons in pain control centres of the brain which means that the brain picks up the normal activity of the gut as pain and that these medications are used for nerve pain relief and not anti-depressants at these doses. I was unable to tolerate 10mg amitriptyline since it gave me heart palpitations just from one pill. This meant I couldn’t trial any further types of tricyclic medication. After a discussion with my GP, I trialled gabapentin for nerve pain which has a different mode of action. I titrated the dose as follows: 1 x 100mg Gabapentin initially at 6pm then moved to bedtime ~11pm (5 days) 2 x 100mg Gabapentin at 11pm (5 days) 3 x 100mg Gabapentin at 11pm (4 days) 3 x 100mg Gabapentin at 11pm + 1 at 3pm (4 days) This did not really help me with the pain and during the final amount of dosing I started to experience severe stabbing left hand side (stomach) abdominal pain that came on at lunch-time and then occurred on and off throughout day. I had to apply heat to try to alleviate it. After discussion with my GP, I spaced out the doses going back to 3 x 100mg, but at 1 at 7am, 1 at 3pm & 1 at 11pm. The side effects continued, so I stopped taking it. This daily stabbing pain went on for 3 months after I stopped the medication. My GP said that such a low dose shouldn’t have such bad side effects. However, I have found anecdotal evidence that there can be bad side effects even at low doses. It is obviously something that I am intolerant to.
Linaclotide (Constella) on prescription. 1 x 290mcg Linaclotide before bed-time. Normally advised to take a little while before food. I took it at night time due to pain being at night and it not impacting my motility by taking it ‘early’. Timing needs to be personalised. As advised by gastroenterologist RECOMMENDED for IBS-C	Since I was unable to take magnesium oxide for motility at the same time as gabapentin, I trialled Linaclotide for motility for IBS-C sufferers. This was recommended by my gastroenterologist at the beginning as an alternative to the amitriptyline since it is meant to help with intestinal pain in addition to motility. I was wary at the time due to the reviews on it, so I went for the amitriptyline instead. I decided to go for it since I wasn’t able to tolerate any of the centrally acting nerve pain agents such as amitriptyline plus Linaclotide only works locally in the gut and does not impact the rest of the nervous system. After giving Linaclotide some time to settle, I found that for me, it didn’t help with motility, but it did help with the pain. Full pain effects are felt at 10 weeks with Linaclotide. After 10 weeks, my intestinal morning back pain reduced by 50%-60%.
Ginger extract 30 drops in a little water before bedtime As recommended by self RECOMMENDED for IBS-C	I used ginger extract to aid motility since Linaclotide wasn’t helping me with this (although it seems to for others).
Optifibre Work up dose according to instructions As advised by self RECOMMENDED for IBS-C	Although ginger extract helped to a degree with motility and Linaclotide with the pain, I was taking time to introduce more fibrous foods into my diet and I had weaned myself off of magnesium oxide to help with bowel movements since the results of it were unpredictable depending on what I was eating (either working too well or not well enough). It is also not recommended to use magnesium oxide long term. I needed something else to help me with the transition towards a more fibrous diet. This is where Optifibre came in. It contains PHGG (Partially Hydrolyzed Guar Gum), which is a bulking agent with prebiotic (feeding gut bacteria) properties. I initially got gas with this and it is worth working up to a level where you are getting the results that you want without too much gas. I was able to discontinue this when I was eating much more fibre.
Alflorex probiotic 1 capsule daily As advised by self RECOMMENDED	Although my symptoms were becoming better managed and the pain had reduced, it wasn’t completely resolved. Whilst researching probiotics, I came across Alflorex alongside some clinical studies showing that it helped IBS. Within a week of being on Alflorex my morning intestinal back pain had resolved completely! I was over the moon! This indicated that much of my pain issues were caused by the dominant bad bug (Citrobacter Freundii) in my gut over-sensitising intestinal nerves. From then on, I found it much easier to reintroduce foods one by one into my diet. This may have been in part to do with Alflorex bringing the dominant bad bug under control due to the Bifdobacterium in Alflorex being a particularly strong strain which fights infections. Also the Bifdobacterium in Alflorex helps to digest complex carbohydrates and produces acetate which feeds good bacteria in the gut. Gradually I was able to introduce enough fibre in my diet to have regular bowel movements, so that I no longer needed the Optifibre. I continued with the ginger extract and the Linaclotide since these helped in tandem. Reintroducing foods was a long process. Although some foods continued to cause me intestinal pain, I was able to eat a much wider diet including many whole grains, nuts, seeds, pulses, fruits and vegetables. I occasionally continue to try to introduce new foods into my diet to this day with varying success. More latterly I found that certain meals (for example with boiled potatoes), didn’t provide enough fibre to help my IBS-C sufficiently. I tried taking a teaspoon of Optifibre alongside these meals, but found I had excess gas, due to the amount of fibre that I was already consuming and Optifibre being a prebiotic. Instead, I use a heaped teaspoon of dietary cellulose powder in water prior to these meals which is an insoluble fibre and is not prebiotic, so it is less likely to produce gas.

The Problem With This Approach

Lack of regulation
- Nutritional Therapy is unregulated with each practitioner using their own approach which hasn’t been formally tested from an end to end treatment perspective. One therapist put me on an elemental liquid diet to treat SIBO, a different therapist said she would never have done that; one recommended a large amount of tests; another said she would have carried out far fewer tests.
Lack of clinical evidence and assumptions based practices
- There is lack of clinical evidence to support the practice of Functional Medicine by Nutritional Therapists and it has been suggested that it includes harmful and potentially dangerous treatments (46).
- There seems to be assumption amongst the Functional Medicine / Nutritional Therapy community that IBS symptoms are due to SIBO. Nearly every nutritional therapist I spoke to said that it was likely that I had SIBO just from my symptoms.
- Once this assumption is made, breath tests are employed to prove the point. However, these breath tests are inaccurate and produce many false positives.
- Gut tests are also run to prove that there is a gut bacterial imbalance. However, all people have a mixture of good and bad bugs in their guts and it is a matter of whether the good bugs are keeping the bad bugs under control. You are led to believe that you need to get rid of these bad bugs (during the ‘Remove’ phase), when in fact they just need bringing under control and for gut microbes to become more balanced and in favour of the good bugs. This belief can lead to taking antibiotics or antimicrobials which can undermine good bugs too and compromise the microbiome overall, which can lead to ill health and further IBS symptoms.
- It is only possible to have SIBO if you have one of its causes. However, there was no emphasis on reviewing the entire cause list. In fact, nutritional therapists do not have the diagnostic tools to prove whether you have one of the causes of SIBO. SIBO should not be treated without tackling the cause first, otherwise it will keep coming back, but only if you have one of the causes in the first place. There was a assumption that my ileocecal valve between my small and large intestine was stuck open and this needed to be manipulated. However, such treatments are experimental at best, there are few practitioners who would do this and you are treating something based on a rare possibility.
- The remove phase of the protocol, relentlessly pursues destroying the microbiome, by utilising highly restrictive diets and both pharmaceutical and natural antimicrobials. This is to remove extra bacteria in the small intestine and to kill any bad bugs in the colon. However, if you have IBS rather than SIBO (which is more likely) undermining the microbiome can only make things worse, since IBS is often down to a compromised microbiome in the first place. Many people with IBS can struggle with their weight due to food intolerances. The protocol is likely to result in further weight loss that could be done without. Additionally, any bad bugs in the colon are likely to grow back rendering the process futile.
- Many of the tests are extremely expensive and require nutritional therapists to interpret them. In fact, many of the suppliers of the recommended extortionately priced products require you to have a nutritional therapist assigned to you to enable you to login to their systems to purchase them. In many cases the supplement recommendations are down to one or a few scientific papers, but not proper clinical trials. For example:
  - activated charcoal for liver detoxification was recommended but has no scientific basis (47) (48) (49)
  - one of the therapists I made an enquiry to was carrying out other practices alongside nutritional therapy that have no scientific basis. She said that we need to work on my ‘past life karma’ as part of my treatment
  - I was recommended a test that is in the research phase – a test for hydrogen sulphide SIBO which had not yet been approved. Only after receiving it I identified it was actually a test for something else (TH1/TH2 test). My test result came back in normal range for TH1/TH2. The therapist said she’d interpreted it as being positive for hydrogen sulphide SIBO – this means that every person who was in the same normal range for TH1/TH2 would have hydrogen sulphide SIBO
High Fees
- Fees are in the range of £85 to £449 for an initial 1.5 hours consultation with £60 to £299 for follow up 1 hour consultations (2019). Prescribed supplements can be very expensive (e.g. GI Revive at £75 in 2019) and can contain ingredients that upset the patient so have to be discontinued with the product wasted
- At best an attempt to assist individuals who cannot be helped by the NHS. At worst a means of making money from vulnerable individuals who have reached the end of the road with the NHS due to the limitations of current IBS research, but still want to become well
Provide false hope
- Desperate clients are lulled into a false sense of security that there will be a positive outcome. “This may not have worked, but just try this, then this” to keep the spiral of hope alive, until you feel that you have been duped
Safety concerns
- One of the supplements recommended to me was new to the market and there is some controversy over its safety – MegaSporeBiotic contains probiotic spores Bacillus lndicus which are indestructible. These families of spores could become opportunistic in the gut. If a person is immune compromised they could cause an infection which may not be eradicated by antibiotics and may even lead to death. (50)When I mentioned my concerns, the therapist stated that she was convinced by the MegaSporeBiotic salesperson and sent me their sales literature which had no references to scientific studies that backed up their statements
- Both therapists were adamant that I had SIBO and concentrated on decreasing my microbiome with antibiotic agents. However my small bowel MRI scan did not indicate SIBO. The microbiome has a enormous role to play in overall health and I felt that my health was compromised as a result. The large increase in my inflammation markers from normal to sky high was highly correlated with the time I went through nutritional therapy treatments and may be evidence of this, in addition to feeling extremely unwell and much worse than when I started
Variable standards
- The nutritional therapy role involves thought processes that are not much different from a doctor – symptom diagnosis, recommendation of tests, interpretation of test results and recommending complex treatment programs. Nutritional therapy courses are run by private bodies and not officially recognised medical institutions. One of the courses for Nutritional Therapy requires no higher education with only a 7-9 month science course prior to entry
- During my research into nutritional therapists available in the UK, I found that many practitioners started another career e.g. nursing, social work, chef, corporate profession prior to becoming a nutritional therapist. One had been a struck off GP and another was a plastic surgeon
- After scanning the whole of the available nutritional therapists in the UK from a variety of sources, carefully looking at their credentials, reviews and so on, I thought I was working with two of the ‘best’, but I was not happy with either of them and they both made my condition worse
- There may be an element of lifestyle choice in selecting a nutritional therapy career e.g. dissolution with their current career or employer, ability to work for themselves, work part-time, from home, charge high hourly fees, spend more time with the family etc. potentially reducing dedicated time for their clients
- One therapist kept getting confused when trying to answer my questions in consultations. She had knowledge of the subject, but when it came to bringing that knowledge together at a specific point in the treatment to make the right recommendations at the right time the information provided was inconsistent. For example, it is thought probiotics can exacerbate SIBO symptoms and shouldn’t be taken until it has been treated. She told me in an email to start probiotic supplements in the middle of SIBO treatment, when previously she had told me I shouldn’t do this
- Not being aware of the ingredients in some supplements. Many people with SIBO and gut dysbiosis or gut bacterial imbalance are very sensitive and intolerant to a number of food groups and are recommended to follow a specific carbohydrate diet (SCD) with the intention of not feeding bacteria. One therapist prescribed me a very expensive gut healing supplement that contained a number of non-SCD compliant ingredients. I only found out by my symptoms getting gradually worse over time, which is when I researched the ingredients on the product label. I then had to research all subsequent recommended supplements to ensure this didn’t happen again and sometimes had to come up with my own alternatives, which goes against the principle of paying someone else for advice. The gut healing product contained L-Glutamine. When I asked about taking L-Glutamine in isolation the same therapist said her patients haven’t done very well on it when it was one of the components of the product she recommended
- All this means the abilities of therapists is going to vary considerably potentially putting patient health at risk
Lack of pragmatism
- The first nutritional therapist recommended 18 supplements with an initial cost of nearly £600. I spent most of the consultation in shock whilst the therapist reeled them off without batting an eyelid
Hard sell
- One of the therapists went for the hard sell on initial contact, pressing me in multiple emails to immediately order very expensive tests when I’d only just made an enquiry about her services
Lack of flexibility
- When I asked for alternative supplements when I was concerned about safety, a therapist said that was what she recommends, she had no interest in offering anything else leaving me on my own in some aspects of the treatment
Inconsistent advice
- I was given inconsistent advice about supplement recommendations; e.g. one therapist saying that she’d never recommend taking Silver, then the same therapist later prescribing it. This made me feel that I couldn’t trust what they were telling me
Lack of planning
- I was recommended a very complex hormonal test along with a suite of gut tests, when the main issue was digestion related. The hormonal test was very expensive, complex and took up the vast majority of the test results consultation time, so the meeting lost focus and I didn’t get many of my queries regarding the gut tests answered. I should have been advised to do this test later to address secondary health concerns
- One therapist provided no indication of in which treatment phase I should be using each supplement e.g. probiotics after SIBO treatment
- With one therapist, there was a lack of forward plan regarding what I should be doing/eating from one week to the next and no information regarding the overall path of my treatment. I felt beholden to her, waiting for her advice, which left me feeling powerless and anxious, particularly when food is such a basic human need and I was unable to plan my week and what I should purchasing at that point
- In the consultation I was given a number of dietary options in the form of handouts each of which conflicted with one another; far more time was spent discussing supplements rather than diet. It took some email exchanges for the therapist to commit to one diet and also to the follow on approach. Initially the therapist said she’d prefer if I took Rifaximin; when I asked my GP about this she told me off and said that she wanted me to go on the elemental liquid diet
- One therapist was frequently unprepared for our consultations, hadn’t caught up with my emails and I had to ensure that I provided an agenda for each meeting to ensure that I obtained value from the consultation
Evangelical approach
- Being almost evangelical about their approaches to treatment and sometimes discounting latest research as a result. One practitioner said that it was OK for me to take large amounts of vitamin C (up to 6 x 2000mg ascorbic acid per day) to assist my bowels whilst on a low fibre diet. When I mentioned about the latest research concerning high doses of vitamin C being bad for your health (interfering with the process which allows cells to die off), she got quite irate and said that monkeys manufacture large quantities of their own vitamin C and are no worse off for it. A more appropriate response might have been that she hadn’t seen that study and for me to send it across for her to investigate
Lack of professionalism
- In the initial consultation, the therapist spent an unnecessary proportion of the consultation time that I was paying for boasting about the fantastic holidays she had recently been on
- One therapist replied to my email queries about the diet and supplements with paragraphs of information about her personal life, the fact she worked part-time to look after her grandson, the number of clients she had recently taken on and why she didn’t have time to answer my questions to gain clarity. In all the time it took to write that email, she could have filled the space with the important information that I needed
- When I asked another therapist questions that it seemed she couldn’t answer she would ignore my emails rather than replying that she didn’t know
- One of my last emails to my last therapist indicated that I was extremely unwell. By this time I had lost a great deal of weight and I had lost all confidence in myself, when I am normally a fairly confident person. This was all caused by their treatments. I had decided at this point to no longer continue with her, but she made no attempt to contact me again to find out how I was, which I thought was very unprofessional considering I was under her care

Considering all of the above, I decided to take matters into my own hands and do my own research into IBS, to improve my health that had been undermined and to work towards managing my overall symptoms. The remaining pages on this website are an accumulation of this research in the hope that this might assist other IBS sufferers whilst helping them to avoid making some of the mistakes that I had made.

Dietitian / Nutritionist / Nutritional Therapist

It is important to understand the differences between these professions, as described by the The Association of UK Dietitians:

Dietitian

Dietitians are the only nutrition professionals to be regulated by law, and are governed by an ethical code to ensure that they always work to the highest standard
Registered Dietitians (RDs) are the only qualified health professionals that assess, diagnose and treat dietary and nutritional problems at an individual and wider public health level
The title of dietitian is legally protected – only those registered with the statutory regulator, the Health & Care Professions Council (HCPC) can use the title of Dietitian/Registered Dietitian (RD). You can check whether a dietitian is registered via the HCPC online register
Their minimum level of qualification is a BSc Hons in Dietetics, or a related science degree with a postgraduate diploma or higher degree in Dietetics

Nutritionist

The title of Nutritionist is not protected by law. Anyone can call themselves a Nutritionist
Some nutrition courses are accredited by the Association for Nutrition (AfN) and graduates from these courses have direct entry onto the voluntary register. It is not a legal requirement for a nutritionist to be registered with the UKVRN. You can find out who is registered by searching the AfN website
Nutritionists are qualified to provide information about food and healthy eating, but not about special diets for medical conditions

Nutritional Therapist

Anyone can call themselves a Nutritional Therapist
Nutritional Therapists may attend courses for instance with Institute of Optimum Nutrition. Some of these courses have very little in the way of prerequisites, are not regarded to be of degree level and do not constitute medical training
Some Nutritional Therapists are registered with the Complementary and Natural Healthcare Council (CNHC). This is self-regulated rather than independently regulated
In practice, they may offer treatments such as high dose vitamins and minerals, detox, and food avoidance, as well as commercial testing for allergies, all for which there is little robust scientific evidence
They work on the belief that the body has underlying nutritional and biochemical imbalances that lead to poor health including mental health problems
They do not use the evidence in a robust fashion and advice is most often based on personal opinion or belief

(51)