It seems to me that the emotional pain suffered by parents can be equally as traumatic as the pain suffered by their children who have digestive issues and abdominal pain. The parents of most children who I consult with for abdominal pain, constipation and sensory issues related to food have trialled dietary approaches such as the GAPS diet or a gluten-free, casein-free diet or a low chemical/additive diet. For those children with hypersensitive guts, avoiding wheat (to avoid gluten) and avoiding dairy (to avoid casein) might actually be helping to reduce gut sensitivity by lowering the child’s intake of fructans and lactose.
Over the past two years, I have started trialling a low FODMAP diet for 2-4 weeks for children who present with abdominal pain, constipation, bloating or diarrhoea, if thorough investigation of other gastrointestinal conditions has been completed and show no known cause of the symptoms.
One of the families who have been trialling the low FODMAP diet over the past 2 months have kindly offered to share their journey with us, and I thought that I would work backwards from the “happy ending” through their journey over the course of IBS Awareness Month.
Ellie (pseudonym) is a four year old girl, whose early life you will learn about over the coming weeks. Ellie has been diagnosed with Autism and she has had digestive and eating issues all throughout her young life. Ellie’s Mum Julie (pseudonym) explains it below in her own words …
“We see Ellie’s gut health as part of a triumvirate of interconnected issues, with sleep and anxiety being the other two points. If her tummy’s not happy, she doesn’t sleep well, and she’s more anxious the next day. Anxiety restricts her food preferences, and stops her sleeping well. If she doesn’t poo for several days, her stress levels are so high that meltdowns are always close to the surface. And her stress hormones must be elevated constantly – which surely affect her gut health. To some degree, this applies to anyone – but intensely so for Ellie.
So we felt that any interventions for anxiety and/or sleep really depend on getting her gut into a better state. Since the diagnosis we’ve worked with an Occupational Therapist, trying to understand and manage Ellie’s sensory issues. That has been useful, but we still felt there must be more specific help available for the eating and gut issues. I voiced my frustrations to the owner of Ellie’s daycare/preschool one morning. She tracked down Dr Kerith Duncanson, courtesy of a dietitian who is a professional contact.
After a lengthy discussion about Ellie’s history, Kerith explained that she would recommend a FODMAP approach first in this instance, based on the combination of sensory issues (which can mean the gut’s nervous system is hypersensitive) and the digestive issues of both variable bowel habits and an identified association with gut bacteria. Kerith explained that the low FODMAP trial would only last 2-4 weeks, and if it did not have any impact in that time then we would seek out other dietary approaches.
So we’ve started the low FODMAP journey and the changes in Ellie’s gut health have been clear and visible. Within days her poos normalised – in size, consistency, regularity and duration to pass. Her anxiety decreased correspondingly. Her preschool teachers, who have worked closely with her for the last two years, now also see a very clear predictable pattern: if she didn’t poo yesterday, she’s more ‘particular’ about everything today. It helps us all know when we can ‘push’ her out of her comfort zone to develop, or when to keep her stable and just give support. The white coating on Ellie’s tongue improves when she’s taking probiotics, and has almost completely cleared up on the low FODMAP diet. Ellie has, however, discovered a new interest in licking things. Maybe things taste or feel different. I’m hoping to channel this into tasting new food… we shall see.
We’re not expecting low FODMAPs to provide all the answers, but it’s the biggest step forward we’ve taken in four and a half years. The main lessons we’ve learned:
- Answers are not easily found, but it is definitely worth the heartache, time, energy, frustration and multiple dead ends to find them
- Tenacity is essential to the search, as we have been actively discouraged from seeking answers by various medical professionals, blamed by others, and mostly treated as overly concerned hypochondriac parents
- Low FODMAP testing isn’t easy – but living with the problem is far harder
- Psyllium is amazing stuff
- Somewhat ironically, to trust our gut instincts.”
Many thanks to Julie and Ellie for their willingness to share their story. We hope that other families will benefit, and have a smoother, faster journey on their way to recovery.
Next week we will go back to the beginning to hear more about Ellie’s early life journey and how Julie had navigated the world of child health and digestives issues.
Blogged by Kerith Duncanson – April 2016