Gluten sensitivity or sero-negative coeliac disease?
Author: Marianne Williams, BSc Hons, RD, MSc Allergy. NHS & Private Specialist Allergy & IBS Dietitian
Mrs X, aged 42, was referred in October 2014 to the general dietetic community clinic in Somerset for dietetic intervention for her symptoms of IBS.
She had suffered with diarrhoea dominant IBS since her teens. However, it is vital to look back to infancy/childhood to get a full case history and hints on what might be the most effective dietary treatment.
Mrs X, aged 42, was referred in October 2014 to the general dietetic community clinic in Somerset for dietetic intervention for her symptoms of IBS.
She had suffered with diarrhoea dominant IBS since her teens. However, it is vital to look back to infancy/childhood to get a full case history and hints on what might be the most effective dietary treatment.
Mrs X reported a history of eczema on her hands since infancy which presented as intensely itchy pustular spots which would appear 2 to 3 times per year. Her brother had the same type of eczema from childhood although his body was covered extensively with the pustular spots on a more regular basis. When she was in her 20’s she started work in a chip shop and was making batter daily and her rash became severe on her hands and constant and spread to her face. When she finally gave up work at the chip shop the rash returned to twice yearly on her hands only.
She also reported a history of severe and extensive joint pain and when she was 8 years old she saw specialists for pains in hips, knees, ankles, hands and wrists. These pains have continued to be severe all her life and in 2013 she had an MRI and was tested for MS. All tests came back clear. She reported that her joint pain and weakness meant that she was often unable to open a plastic milk bottle for breakfast.
She would suffer crippling migraines from childhood which would last for 5 days every 2 weeks. These were put down to eye strain despite having prescription glasses.
She had colonoscopies and gastroscopies in her 20’s due to her abdominal pain and diarrhoea with nothing abnormal detected although it was unclear if a coeliac biopsy was done.
In 2012 she started to suffer each morning with a sore mouth with peeling skin on her lower gum/inside lip.
In 2013 Mrs X had a minor car crash and shortly afterwards she was diagnosed with benign postural vertigo caused by whiplash. At least 4 consecutive days per month she would feel motion sickness 24 hours per day and have “almost double vision” with a feeling of spinning around and loss of balance. She became progressively exhausted and would have to spend days in bed. She was signed off work for 1 year and diagnosed with stress. She would set an alarm to wake herself up so that she could collect the children from school.
Due to her unresolved exhaustion she was diagnosed with chronic fatigue and she had a coeliac blood test in 2013 which was negative. The test was redone 6 months later in early 2014 and remained negative. She reported that she was so exhausted that she had no energy to cook for her family and, “and I would reach for easy foods such as biscuits, cakes and toast”.
Despite her negative coeliac tests, I felt that with her history it would be sensible to trial a strict gluten free diet. The next available review was in 12 weeks.
At review 3 months later in December 2014, Mrs X reported, “within one week I felt like a new person and within 1 month I was mowing the lawn!”. She reported that she was no longer having to set an alarm to get out of bed to do the afternoon school run and had gone back to work 3 days per week. She still became tired easily, but her dizziness had resolved completely and she no longer had a sore mouth. Her stools had altered from Bristol Stool Scale 6-7 with 3-4 urgent stools per day to Bristol Stool Scale 4-5 with 1 controllable stool per day. To her relief and surprise all her joint pains had also resolved and she no longer needed the shoe inserts she has recently been given to help her hip and foot pain. She was no longer suffering with migraines.
She deliberately ate a doughnut after 2 months and she had severe bloating and nausea within 20 minutes, diarrhoea within 30 minutes, a sore mouth the next day and she felt exhausted, “as if I had a hangover” and, “I felt cold to the core”. She reported that several weeks later she ate dinner at a local pub and despite ordering suitable foods, she spent most of the evening in the pub loo with diarrhoea and extreme nausea.
She decided to remain very strictly gluten free permanently and join Coeliac UK. I reviewed her progress 1 year later in December 2015 where she reported that she no longer had abnormal tiredness and that, “my life is so different”. She was back to work full time and was able to get up at 6am to look after her horses before work including ‘mucking out’, and was able to walk the school run with her kids and do all the necessary house work. Her pustular rash had not reappeared in the last 12 months.
Gluten sensitivity or sero-negative coeliac disease?
Symptom scores: (1=mild, 10=severe)
She also reported a history of severe and extensive joint pain and when she was 8 years old she saw specialists for pains in hips, knees, ankles, hands and wrists. These pains have continued to be severe all her life and in 2013 she had an MRI and was tested for MS. All tests came back clear. She reported that her joint pain and weakness meant that she was often unable to open a plastic milk bottle for breakfast.
She would suffer crippling migraines from childhood which would last for 5 days every 2 weeks. These were put down to eye strain despite having prescription glasses.
She had colonoscopies and gastroscopies in her 20’s due to her abdominal pain and diarrhoea with nothing abnormal detected although it was unclear if a coeliac biopsy was done.
In 2012 she started to suffer each morning with a sore mouth with peeling skin on her lower gum/inside lip.
In 2013 Mrs X had a minor car crash and shortly afterwards she was diagnosed with benign postural vertigo caused by whiplash. At least 4 consecutive days per month she would feel motion sickness 24 hours per day and have “almost double vision” with a feeling of spinning around and loss of balance. She became progressively exhausted and would have to spend days in bed. She was signed off work for 1 year and diagnosed with stress. She would set an alarm to wake herself up so that she could collect the children from school.
Due to her unresolved exhaustion she was diagnosed with chronic fatigue and she had a coeliac blood test in 2013 which was negative. The test was redone 6 months later in early 2014 and remained negative. She reported that she was so exhausted that she had no energy to cook for her family and, “and I would reach for easy foods such as biscuits, cakes and toast”.
Despite her negative coeliac tests, I felt that with her history it would be sensible to trial a strict gluten free diet. The next available review was in 12 weeks.
At review 3 months later in December 2014, Mrs X reported, “within one week I felt like a new person and within 1 month I was mowing the lawn!”. She reported that she was no longer having to set an alarm to get out of bed to do the afternoon school run and had gone back to work 3 days per week. She still became tired easily, but her dizziness had resolved completely and she no longer had a sore mouth. Her stools had altered from Bristol Stool Scale 6-7 with 3-4 urgent stools per day to Bristol Stool Scale 4-5 with 1 controllable stool per day. To her relief and surprise all her joint pains had also resolved and she no longer needed the shoe inserts she has recently been given to help her hip and foot pain. She was no longer suffering with migraines.
She deliberately ate a doughnut after 2 months and she had severe bloating and nausea within 20 minutes, diarrhoea within 30 minutes, a sore mouth the next day and she felt exhausted, “as if I had a hangover” and, “I felt cold to the core”. She reported that several weeks later she ate dinner at a local pub and despite ordering suitable foods, she spent most of the evening in the pub loo with diarrhoea and extreme nausea.
She decided to remain very strictly gluten free permanently and join Coeliac UK. I reviewed her progress 1 year later in December 2015 where she reported that she no longer had abnormal tiredness and that, “my life is so different”. She was back to work full time and was able to get up at 6am to look after her horses before work including ‘mucking out’, and was able to walk the school run with her kids and do all the necessary house work. Her pustular rash had not reappeared in the last 12 months.
Gluten sensitivity or sero-negative coeliac disease?
Symptom scores: (1=mild, 10=severe)
| Symptoms | Before gluten free diet | After 1 year on gluten free diet |
| Bloating | 9 | 2 |
| Abdominal pain | 10 | 2 |
| Wind | 10 | 1 |
| Energy | 10 | 5 |
| Urgency | 10 | 0 |
| Diarrhoea | 10 | 0 |
| Nausea | 5 | 0 |
| Reflux | 2 | 0 |
| Headaches | 10 | 0 |
| Joint pains | 10 | 0 |
| Sore mouth | 7 | 0 |
| Dizziness | 9 | 0 |
| Skin pustules | 7 | 0 |
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