Following the results from the Sunderland test, we have decided to go cold turkey with B’s dairy intake. I wouldn’t say a huge amount of thought has gone into this; we’re just leaping in. God knows what he will eat or where his calcium intake will come from. I thought I would keep a diary of how we get on.
Day One- breakfast. B was upset, as predicted, at having no morning milk. He rejected the strawberry soya milk and the toast with Vitalite. Not sure what he drank, but we eventually settled on a bowl full of Pringles for breakfast. Great start. Lunch- McDonalds. Sigh. Evening meal- hungry, ate well. Bedtime- no milk asked for. A dairy free day!
Day Two- breakfast. Asked for milk the moment he woke up. Wouldn’t drink soya milk. Stole, and managed one small bite of, his brother’s toast with butter. Need to step up the segregation. Ate his own toast with Vitalite. Lunch- sandwiches with Vitalite eaten. Lots of dairy free snacks throughout the day. Went shopping for dairy free at Sainsburys. Hurrah for dairy free cake mix and many, many other ideal foods. Boo to an extra £80 on our shopping bill! Evening meal- made dairy free pancakes from scratch, which he loved. Bedtime- tried, and liked, ‘Rice Dream’ milk. Feeling positive.
Days three and four- dairy free! Managed to get some food in him but not as much as we’d like. ‘Rice Dream’ still working well. Nursery have been primed and provided with Vitalite and ‘Rice Dream’. Poo is different but, if anything, more horrible than before.
Days five to seven- a dairy free week! Good to know we (and nursery) can manage it. Shame it has made no difference (yet- be optimistic). Thank you to the lovely person who fould dairy free cheese for us. A home made dairy free pizza went down a treat.
Day…lost count already- solid poo! Solid poo! Solid poo!
Day nine (remembered now)- another solid poo! What’s more, he has only gone once in the last two days, rather than four times. Too good to be true..?
Day Ten- too good to be true. A runny poo this morning. But… back to solid this evening. And not nearly as smelly as they used to be. How long before he gets bored of fake-cheese pizza?
Day eleven- runny poo is back with a vengance! This morning’s code brown was as bad as it gets. Complete change of clothes and a rug to be put in the washing machine! Not sure what this means, but we were told to give it four to five weeks. I have become a stool obsessive.
Day twelve- ‘loose’ is the word they use at nursery. Today B had two loose BMs (bowel movements- I’m getting good at the jargon!). Is this all a waste of time? Does he have a secret stash of cheese triangles tucked down the side of his bed?
Week three- the past week has seen all loose movements, with one notable exception. He did one reasonably solid poo. We knew it was solid because he did it in the bath, picked it up, reached over and dropped it in the toilet. Our revulsion was cancelled out by our joy at seeing a solid poo. His brother, also in the bath at the time, didn’t seem to mind.
Week four- I think it is time to admit that a dairy free diet has not worked. We still have one week to go before the five week trial is up, but short of a miracle, I don’t see things changing. There are other alternatives to try (thanks to everyone who has offered advice) but I think we will wait until next month’s meeting with the paediatrician before doing anything else.
Week five- we are no longer dairy free. We have a meeting with the paediatrician next month- until then we will go back to a normal diet. We are going to keep a food diary from now on. All in all it has been a disappointing experiment, but it demonstrated to us that implementing an adapted diet is quite possible. Also, if we hadn’t tried, we would not have been able to rule it out.
Life with an Autistic Son 
Please please read the GAPs diet book I have recommended -. Our son has had very similar symptoms (nappy wise) but now I can happily say that his poos are regular (daily) and solid! no longer does he suffer 3 or 4 days of constipation followed by irregular bouts of diarrhea ( with the exception of 2 occasions when he ate citrus fruit ). I was intimidated by the GAPs list of foods to avoid but almost 6 months in, it really isn’t impossible as it would appear.
I urge you to read the book (not just once, you’ll need to spend some time – it isn’t an easy read!). Dont be put off by the ‘cure for autism’ debate – simply consider it as a potential remedy for horrible poo. Believe me, I’ve had to change an exploding nappy on the top of a playground slide, with a little boy wriggling and squirming & refusing to climb down, poo squirting in all directions and me, with only one clean nappy and one clean tissue. not nice.
I made the decision to try out the GAPS diet after an incident with my son to (yet another) playground. He usually loves visiting playgrounds but on this particular day behaved very oddly, refusing to walk, throwing himself on the ground & once we were in the playground, continued to act oddly, not playing on the equipment. Friends decided to walk on to the next playground, I attempted to follow with him. To cut a long story short he suddenly filled his nappy (hugely) and within minutes (and nappy change) he turned into a different child – he scampered off to the playground where to the casual observer he would appear ‘normal’ – whereas just moments before, his behaviour could only be described as weird.
I made me realise that he must have been in great discomfort and that since he can’t converse, he couldn’t let me know. I determined to try to do something for him from that day.
In the last 2 months he has made very interesting progress in terms of development. I am not putting this down to the GAPS diet but I do most certainly attribute the change in his poos to GAPS.
I would second the recommendation to read the GAPS diet book.
There are many foods hard to digest that will actively damage the gut if the gut flora is not health and being protective of the gut lining. It doesn’t surprise me that cutting just dairy out did not make a difference. Unless all foods difficult to digest are cut out or at least reduced improvements are unlikely to be seen.
There is also the fact that as the bad gut flora die off they release toxins and so the person symptoms often worsen before they improve. It takes time. I am 5 months in on the GAPS diet for IBS and only now starting to feel symptoms reduce. The science in the book is very comprehensive, no fudging and yet easy to understand. She’s very clear about what goes on in the gut and digestion.
I would be happy to lend my copy if you’d like.
Just found a recent radio interview with Dr Natasha Campbell-McBride on YouTube. She talks fully about her nutritional protocol and about treating her own son. There’s 5 parts, this is the link to Part 1.