A private GI finally pointed to delayed gastric emptying, but the £2k breath test is stuck in limbo

Was seen privately by Mr Shidrawi (leading upper GI and bariatric consultant, London) who clinically identified delayed gastric emptying linked to hypermobility as a likely primary driver. He recommended a C13 octanoic acid gastric emptying breath test to confirm gastroparesis. This test has not yet been completed due to cost (£2k private quote) — pursuing via NHS referral.

Also has hypermobile Ehlers-Danlos syndrome (hEDS) / hypermobility spectrum disorder — connective tissue abnormality that directly affects gut wall structure and motility, believed to be a pre-existing vulnerability that COVID tipped into full symptoms.

Diagnoses / suspected diagnoses:

• SIBO (Small Intestinal Bacterial Overgrowth) — confirmed, recurrent. Has completed antibiotic courses (rifaximin assumed) multiple times but SIBO always returns. Antibiotics treat the overgrowth but not the underlying motility dysfunction causing it. • Suspected gastroparesis — delayed gastric emptying identified clinically by Mr Shidrawi, linked to hypermobility and post-COVID autonomic dysfunction. Breath test pending. • Post-COVID disorders of gut-brain interaction (DGBI) — fits the framework described by Dr Imran Aziz (Sheffield Teaching Hospitals) in his research on post-COVID GI sequelae. • Hypermobile EDS / HSD — formally identified, contributing to gut dysmotility. • Possible histamine intolerance — suspected given SIBO and symptom pattern.

Current symptoms:

• Chronic constipation — primary and most debilitating symptom, though currently going to the toilet daily with magnesium citrate • Severe bloating and distension • Excessive gas — both upward (burping) and downward (flatulence), often foul-smelling suggesting putrefactive bacterial fermentation • Nausea — particularly when stomach is empty or during flares • Feeling of food fermenting and sitting in the stomach — food not moving, producing gas that goes both ways • Waking up still burping — food not clearing overnight, suggesting gastric emptying delay specifically • Severe brain fog — worse on empty stomach and during flares • Chronic fatigue and tiredness — disproportionate, directly tracks gut flare activity • Raw stomach feeling — particularly in the morning and on empty stomach • Aggressive stomach growling and pain when empty — likely dysregulated migrating motor complex (MMC) • Seborrhoeic dermatitis — severe scalp and eyebrow flaking that tracks gut flares directly, sometimes bleeding. Believed to be driven by gut-skin axis, histamine, and zinc malabsorption. • Headaches — track gut flares, likely driven by toxic reabsorption, blood sugar dysregulation and histamine • Symptoms significantly worsened by cigarettes (autonomic suppression) and by alcohol • Cannabis provides temporary pain relief but worsens constipation (CB1 receptor mechanism) • Symptoms worst on empty stomach — acid sitting on raw stomach lining, dysregulated MMC • Chinese herbal medicine (circulation-promoting) has provided approximately 50-60% improvement — suggesting prokinetic-type interventions are the right direction • Flares triggered by: alcohol, cigarettes, stress, large meals, high fat meals, eating late

Current medications and supplements:

• Finasteride 1mg daily — for male pattern hair loss, taken for 5 years. Unlikely to be contributing to gut issues given COVID pre-dates it by a year. • Minoxidil (topical or oral — specify) — for hair loss • Magnesium citrate — nightly, for constipation. Partially effective — going daily but still symptomatic. • Nizoral shampoo (ketoconazole 1%) — for seborrhoeic dermatitis on scalp and eyebrows • Chinese herbal medicine — circulation-promoting formula from Chinese doctor, responsible for 50-60% baseline improvement

What has been tried:

• Multiple courses of antibiotics for SIBO — always recurs, no post-antibiotic prokinetic maintenance protocol used • Private gastroenterology (Mr Shidrawi) — useful clinical intelligence but test not completed due to cost • Chinese herbal medicine — most effective intervention to date • Magnesium citrate — partially effective for constipation • Dietary modifications — ongoing

What has NOT yet been tried but is being pursued:

• C13 octanoic acid gastric emptying breath test — pursuing via NHS GP referral • Prucalopride — planning to request from GP as prokinetic for motility • Low dose amitriptyline — being considered for visceral hypersensitivity and pain • Low FODMAP diet — partially implementing • Nurosym vagus nerve stimulator — being considered • Formal NHS gastroenterology referral — in progress

Key clinical observations:

• Antibiotic SIBO treatment keeps failing because the underlying motility dysfunction (broken MMC from post-COVID vagal damage) is never addressed — bacteria re-accumulate as soon as antibiotics stop • Food fermenting in stomach and proximal small intestine (not just colon) — evidenced by burping and upper GI gas rather than purely downward • Chinese herbal medicine response suggests prokinetic mechanism is the right treatment direction • Cannabis pain relief suggests visceral hypersensitivity as primary pain mechanism (CB1 receptor) • Gut flares directly correlate with seborrhoeic dermatitis severity — gut-skin axis clearly active • Hair quality and thickness improve when gut is better — suggesting chronic nutrient malabsorption (particularly zinc, iron, B vitamins, protein) during symptomatic periods • Cigarettes significantly worsen everything — likely via sympathetic nervous system activation suppressing already-compromised vagal tone • Hypermobility as pre-existing structural vulnerability + COVID as acute trigger = current presentation

What you’re looking for:

Practical advice from others with similar post-COVID SIBO/gastroparesis presentations, particularly around: prokinetic options that have worked, dietary approaches beyond standard low FODMAP, whether prucalopride has helped, experience with vagus nerve stimulation devices, and how others have broken the antibiotic-recurrence cycle for good.