Dr. Schär Institute

He had been suffering with these symptoms since childhood.  He reported that his parents had been negligent and had failed to seek help for his symptoms and that as a young boy he had ended up being put into care by social services. He went on to develop epilepsy in later childhood and was diagnosed with Asperger’s syndrome as an adult. He attended clinic with his very supportive wife.
 
Mr X would pass 2 urgent stools per day generally within 15 minutes of eating breakfast and his main meal.  The stools were Bristol Stool Scale 6-7 and were so explosive that he would often need to have a shower afterwards.  His rectal area had become very sore.  Faecal accidents associated with wind were a daily occurrence.
 
He would bloat rapidly and develop abdominal pain after eating almost any food and described himself as, “looking pregnant”. His history of reflux was so severe that he would try to avoid eating and he described waking at night, “choking on acid”.  Thankfully, recent medication had resolved the reflux although he continued to suffer with a tongue that felt “raw” and blood blisters on the roof of his mouth at least once per week. He had suffered joint pains in his knees, elbows, neck and back for many years with no diagnosis.  He found it difficult to get up in the mornings and suffered with extreme fatigue and reported that every day his eyes felt as if they were “burning with tiredness”.
 
Pasta, beer and bread were noted to aggravate his symptoms although he continued to eat all three regularly. He had recently had a negative coeliac blood test.  Indian and Chinese food would cause diarrhoea, wind and abdominal pain.  Many vegetables caused rapid and severe diarrhoea.  He had not noticed any issues with milk.
 
Despite his severe and chronic symptom history, Mr X had never been given any dietary advice and had never undergone diagnostic investigation.

 

Dietary intervention plan

With the history of gastrointestinal symptoms since childhood, joint pains, extreme lethargy and the reactions to gluten-containing foods, it was decided that he should trial a very strict gluten free diet for 8 weeks despite his recent negative coeliac test. With his reaction to vegetables and takeaway food it was also decided to use only the low FODMAP fruit and vegetables to try and minimise any possible gut fermentation. 

 

Review at 8 weeks

When Mr X returned 2 months later for review he reported that, “this is the first time I have felt well in 40 years”.  He was now having 1 controllable stool per day with Bristol Stool Scale 1-3. He had suffered no faecal accidents since staring the diet and his rectal area was no longer sore.  Interestingly his mouth was now only tender if he ate strong or hot flavours and he had suffered no occurrences of blood blisters on the roof of his mouth in the last 7 weeks.  His joint pains were still evident but substantially improved and he no longer had any burning sensation in his eyes.  He reported that he had, “vastly improved energy” and his wife reported that he was now able to get up in the morning with little effort.  He reported that he felt “90% improved”.
 
His symptom scores had altered as follows: (1=mild, 10=severe)
 

Symptom	Before dietary intervention	Post 8 weeks dietary intervention
Bloating	10	0
Urgency	10	0
Diarrhoea	10	2
Gurgling	7	2
Abdominal pain	6	0
Wind	10	5
Nausea	3	0
Joint pain	10	5
Sore mouth and tongue	10	2
Energy	10	5
Overall	10	2

 

Understandably Mr X did not want to reintroduce gluten for 6 weeks in order to undergo a coeliac biopsy.
 
Mr X was advised to continue using the strict gluten free diet, to join coeliac UK for support and to complete reintroduction of fermentable fruits and vegetables.  An annual review was scheduled.

 

Observations

It is rare in my clinical experience that the FODMAP diet alone would lead to such notable improvements in such a wide array of symptoms, particularly where severe symptoms started in childhood.  However, although wheat based foods or gluten may appear to be a likely candidate for his symptoms, a true diagnosis remains elusive at this stage.
 
His case highlights how those from socially deprived backgrounds can run the risk of falling through the healthcare net, particularly if they have other health conditions which may make communication challenging. Both time and listening skills were essential in this case.
 
Mr X is due for annual review in the next 2 months and it will be important to assess his use of the gluten free diet and whether he has continued to see such significant improvements in symptoms.  Assessing reactions to accidental exposure over the last 12 months will give vital clues as to the relevance of the gluten free diet in the long term.  And it will be equally important to check the overall quality of his diet including the reintroduction of fermentable fruits and vegetables. 
 
This case raises the question: is this gentleman a sero negative coeliac?  We may never know.