Just called the doctors surgery to get ds's latest letter from his consultant and the nice receptionist read it to me.
It clearly states that DS has issues with wheat and gluten and now lactose for which he needs to be on a wheat, gluten and lactose free diet. Now I have known this for the best part of 2 years but to hear it from his consultant means a lot and I am actually still in shock that someone agrees with me, I have spent a long time trying to get this and it means so much.
Ds had massive joint pain, large bloating stomach, constant hunger would eat for hours and never be happy.
Horrific smelling nappies, had to delay potty training as he would soil himself.
If he drinks a large amount of normal milk he has bad smelling breath, large tummy which is rock solid.
At the height of the problem, Ds went from this lovely baby to a toddler who could hardly sit, stop talking, didn't want to interact, would scream for hours, if you put him on his feet he would scream in pain. He would curl up in his bed in a tight ball and now relax even in his sleep.
Its not just the consultant that disagrees but also Ds's dad he still feeds him this stuff and it makes him really ill. So for me to finally have someone tell me that I haven't invented this or imagined it means a lot and means I can start to move on.
Finding out about either allergies or intolerances can be a bit of a shock at first, but on the bright side though now it is confirmed you will hopefully be able to get the support to deal with it in terms of access to a dietician etc etc. Also at least you have a reason for all these changes you have seen in your ds and that's great (even though the restricted diet may be frustrating at times!).
Oh bless him. Do they think it's coeliac(sp?)? My niece is almost 4 and they are running tests to find out. DD2 has mainly skin reactions rather than the sort you're describing. DH knows she's allergic to many things (and has tested positive to be) and still rings me if I'm not in to ask if he can give her creme fraiche or something equally dairytastic. The other day he gave her a yoghurt which had DAIRY DESSERT typed on it. His defence was because the packet had a baby on it. (They were for dd1 who is 22mo) Just think men don't seem to get it as much. Probably different with anaphylaxis though. Yes it's a relief when someone finally believes you. I had funny symptoms for years and got prescribed anti depressants after bursting into tears in gp surgery because no one would listen. I never took them. A year later got diagnosed with MS. It sucks but good to know you're not going mad.
They tested for coeliac but it came back negative however, I am not sure that the diet was done correctly to get a positive result.
At the moment Ds displays more serious symptoms after he is given food he is intolerant to, which includes very low blood sugar incidents which are scary to watch and his shakiness can last for a couple of days.
But this is the first step in the right direction and it is definitely nice to know I am not going mad.
There are days when you look at ds and think oh there isn't anything wrong with you, and that is right as long as he eats his special food and I do think that part is hard for other people to understand.