Caeliacs?

[Saacsmum]

Just had yet another paed appointment. Paed thinks ds maybe reacting to gluten through my breastmilk. Have others had this? We have had tests previously but paed says that they are unreliable in very young children and that his symptoms fit the scenario. All advice and input welcome!

How is his growth? Is this Rodney? He does have a tendency to just keep thinking of more and more scenarios to get people onto Neocate and off breastmilk. Unless he can prove it I would tell him to shove off - you eat practically nothing as it is. (This is if he is growing)

saacsmum in your position I would exclude gluten for a week and see if I noticed any improvement or - if he's now taking neocate - express for a few days while feeding him neocate to see if it helped and if not go back to breast feeding. Should really be two weeks but with your other problems one is probably enough of a difficulty. Given your weight problem I feel angry that they've put you in this position without properly testing your son'

I would also be demanding - urgently - RAST tests and there's some sort of blood test for coeliacs too. It tests for 'anti-endomysial' antibody which is common in coeliacs. They usually confirm the diagnosis with endoscopy.

Don't know about reacting to traces in breast milk but there's a phone number on this webpage (site under development) to ask for advice
www.coeliac.co.nz/ As I used to know a coeliac I know it isn't usually picked up until the baby starts on solids. There is also often a family history as there is a genetic component.

If your child is a coeliac then they may not have the other allergies you've been told about and you might have to go gluten free but be able to reintroduce other foods to your diet. Really don't think its good enough to just be doing skin prick tests and telling you to exclude major food groups when your weight is dropping.

Don't know if your son can tolerate dried apricot or figs but they can help with constipation if the problem isn't coeliac disease, you go gluten free or do neocate and it doesn't help. I know you've tried prune juice.

We have already had bloods done for gluten which came back negative but (and yes it is Rodney) paed says that it is unreliable in a baby under one. We got neg results on skin pricks so we are doing the dairy challenge and hoping that it will be alright as then I can remove gluten without too much drama from my diet. I personally think that maybe he has a combination of discomfort from his bowel getting backed up and the ongoing discomfort of teething and that food is just not his thing at the moment. I think if he needed it he would eat it and I will just continue to offer him food and keep bfeeding, no way have I come this far to give up now. He has grown well until about 7mths when he started tailing off and has crossed a couple of the percentiles now but he still looks healthy and has fat rolls so I am mostly feeling ok about this.

with a negative test don't think I'd dash into doing anything. Good to hear about the dairy skin prick - are you doing goats or sheep milk or cheese first?

Started with cheese today. It was very scary! His first feed afterwards I watched him like a hawk and now keep checking him to make sure he hasnt vomitted in his bed like the good old days.

keeping fingers crossed. Presumably you're taking the opportunity to have a cream cake or a pizza

So do you think I should refuse to feed him at nite as paed suggested to encourage him to eat solids. It feels like the wrong thing to do but paed believes that he prefers breastmilk to real food and that he is filling up on it and refusing to eat solids until he has breastmilk. I think that he is not interested for a reason like his bowel or allergies or whatever and that he will gain interest in solid foods when he is ready????

don't know what I'd do saacsmum. Might think about restricting milk at mealtimes in the day but don't think I'd do it at night because I wouldn't feel like offering anything else then. Maybe ask on the feeding board, if you haven't already done so.

OOps sorry, I actually posted this on the wrong thread in my sleep deprived haze, thanks for answerign though.

I wouldn't trust a single thing that Rodney says about breastfeeding - he is a doctor not a breastfeeding expert. He is also a doctor who has very slight understanding of breastfeeding and usually persuades mothers to give up as soon as possible. Those that ignore him, just don't mention they still feed (because it wastes valuable appointment time arguing with him) so his knowledge is never likely to improve.

Whilst your ds is under 1 breastmilk is his most important food (and it is food).

My daughter has coeliac disease but wasn't diagnosed until she was eight. With hindsight I think she had it from the beginning as she didn't gain weight or grow much for 18 months from the age of 1 but dietitian put it down to my husband and I being short. We now have a 5mo and consultant has said to wean normally as test will only show up if they are eating gluten and can only be definitive with biopsy. I haven't heard of any cases where it goes through breastmilk.

I'm not familiar with your situation, but I'm fairly certain that gluten isn't supposed to go through breastmilk. Of course that doesn't mean it is impossible.

I have a coeliac 3yr old, and she was very anti-food from 6 months on (when she had her first try of gluten). Personally I think there is a very strong link there, but have seen the milk-preference thing with other babies. My daughter was bottle-fed with only tiny nibbles of food right up to about 14 months, I have seen this with other 'healthy' babies too, and don't think it is as much a reason to panic as health professionals make out, unless his growth is seriously suffering. IMO just thoughtfully offering solids as you suggest might be the best thing for a while.

I don't think I would pin my hopes on a coeliac diagnosis at this age as tests are too likely to give you a false negative IMO.

I think you really need to listen to your own 'gut feeling' and follow this, sometimes it is the best 'advice' you will get, even if it means throwing the rule books out of the window.