01 Nov Diane Everett, mother of Matthew age 5 yrs
I put Matthew on the full protocol you recommended in August, as well as L-glutamine. We have seen a remarkable difference in terms of his mood, which is now completely stable – even after a whole day at school without eating. We are rarely having meltdowns anymore and he is so much more emotionally resilient than he was. His appetite has been slightly less straight forward. Despite my best efforts to remove gluten from his diet, it crept in without me realizing on a number of occasions, and we are still struggling with his eating and weight gain. That said, he is no longer holding food in his mouth, no longer gagging, vomiting has become infrequent, and when we are at home he will eat without resistance, Those are big steps given where we were a few months ago. We are still struggling with him eating at school, and all of his lunch comes back on most days. He tends to lose weight during the week, and then puts it back on again over weekends and holidays. Given that he will eat at home, however, I suspect it is more of a problem of the school context, rather than a physiological issue as before.
In terms of the gluten – he was off for a good amount of time, and then I reintroduced to see how he would respond. The first time he had it, he seemed fine, but 2 days later lost his appetite again. The second time I introduced it, he vomited 3 hours later. The third time he had it, he also vomited a few hours later, so I think it is safe to conclude that gluten doesn’t agree with him?
I have spoken to his GP about the elevated levels of Calprotectin in his stool, and he has kindly run another stool test for calprotectin through the NHS. We are awaiting the result and I will let you know what we find.
I would like to apply to the school to get him gluten-free school lunches, but they require a formal application signed by a doctor or dietician for this. I have attached the form – would you mind filling out page 2 for us? This would mean the school would be able to monitor his intake slightly better, and he might at least get a little bit of food in during the day.
Many thanks for your help – I feel like we have a completely different child and the stress on our family has significantly reduced.