Drastically changing your child’s diet without the advice of a health professional isn’t really recommended, especially when you are excluding something major like wheat/Gluten. But more and more I am hearing of parents, like us, who are struggling with waiting lists to get seen by dieticians or paediatricians and are taking things into their own hands. Here is our story so far.
Last November I posted about hoping O had an infection in his tummy, because if he didn’t there was a possibility he could be suffering from Coeliac disease.
Eleven months down the line and we are still yet to get an actual diagnosis. It took over six months just for him to even get an appointment with the paediatrician! Six months of screaming, six months of sleep deprived nights. Six months of constant nappy and clothing changes, even through the night.
By the time the appointment came we had managed to figure out that Soya was affecting him too so he was totally dairy and soya free, yet was still not right. We were quite lucky to get the same paediatrician O was under as a baby when he had trouble with raised liver enzymes and reflux so she knew us and is a really lovely doctor, which is always a comfort!
The paediatrician agreed that he could be coeliac but said that there was also the possibility of him having an allergy/intolerance to wheat or gluten, or something else entirely. But to start with, she arranged for some blood tests. One to see if he had the coeliac antibodies in his blood, a genetic test to see if he is susceptible to coeliac (even if he doesn’t have it now) as well as some others including a full blood count and a check of his liver enzymes just as a follow up review.
This was in June.
In July I had a call to say that we needed to up his gluten intake and go back in a few weeks to repeat the antibody test. which we did and suffered even more because of it.
By this point I’d had enough, it broke my heart every time I gave him something to eat, knowing that I was probably causing him pain and discomfort. So, without the go ahead from the doctor we made the decision to switch him to gluten free. After all, if the antibodies were going to be in his blood at all, surely two tests should be enough and the best way to diagnose an allergy or intolerance is to exclude the problem foods from your diet.
Theswitch would have been much easier if it had just been the gluten that was an issue but you see, just to make life super difficult for me, the majority of dairy free products are made with soya milk and the majority of gluten free products are made with soya flour or contain soya lecithins. So obviously it is a right pain in the backside trying to find foods which contain none of these things! It took us a few weeks and a lot of hiccups, but by September he was totally gluten, dairy and soya free.
Last week I was thinking he wasn’t really improving that much and that we should just jack it in, when a family friend asked me whether he could have some biscuits. I said yes, just to see if maybe I was wrong and it wasn’t the wheat after all (this brand had no dairy etc in them). Lets just say that after some extremely stinky nappies a grouchy, lethargic toddler with a gurgly, swollen tummy and a sleepless night, my faith in my own intuition had been restored!
I guess it will just take time for the gluten to completely leave his system and for his tummy to recover. Either that or there is something else affecting him as well, which I would rather not contemplate right now!
Let’s hope that we get another appointment soon so we can get a real diagnosis. I’m sure the doctor will disapprove of the fact I have removed wheat and gluten from his diet without her say so, but at this moment in time I am sure going gluten free was the right choice we could make for our son and I would do it again in a heartbeat.
Have you excluded something from yours or your child’s diet?