Does anyone have a baby/child who has coeliac disease?

Becky - posted on 08/04/2009

Hi Hayley,

We are all well Thanks, hope you and your family are well. I have just started weaning

my son, Phoenix and so far I've avoided any gluten. He was born 3 weeks early so even though I've been breast-feeding him, I still thought I'd give his stomach abit more time to mature before I try it. Really nice that you found a good recipe for a gluten free Birthday cake. Best wishes to you all, Becky. x

Hayley - posted on 08/03/2009

Thank you Becky. We've just had Grace's first birthday party over the weekend (her birthday was the 28th July) and I made her a small but very tasty cake that she could eat and enjoy, she loved it!

How are you and your family? x

Becky - posted on 08/01/2009

Hayley, there is a another community on circle of mums called 'Moms of coeliac kids', this might be of help to you.

Becky - posted on 07/20/2009

Hi again,

My husband has had problems with his test results. He has had cameras put down and up!, biopsies taken and other tests but they always come back border line or inconclusive. Because of this he can't get anything on prescription, unlike his 3 sisters who all get it. However he was so ill that he started following a gluten free diet of his own accord and all symptoms of the illness have now gone. He used to suffer with a bad stomach all the time and had to empty his bowels many times a day (at least 5 times in the morning before even leaving for work). Also when he needed to go it was urgent, which made it stressful going to new places where we didn't know where the toilets were. He also used to cough up blood! but like I said he now is completely fine. The Dr's said they could try a different test but he'd have to reintroduce gluten into his diet again for 6-8wks first and my husband has refused to do this now he is so well. Like you said, it makes such a difference once you know what you are actually dealing with. They have just sent some more genetical tests off for my son but they had to go to Italy and will take 3 months. He is doing all his milestones and thankfully is thriving so we are hoping if he has any sort of syndrome it will be very mild. Good Luck with getting your daughter tested, you sound like your'e coping really well.

Hayley - posted on 07/18/2009

Thank you both for your comments and suggestions. She's been on a gluten free diet now for about 2 months and we've only had 2 "accidents" with giving her food which we were led to believe was ok (they both made her poorly the following couple of days after eating them).

We're still waiting to hear from the hospital but our GP has advised us that her test results might be a false negative (when we finally get an appointment - we've been waiting since April/May time!!!), she also said that Grace might have to eat gluten in a meal once a day for 6 weeks in order to be tested and so Simon (my partner), myself and the GP said as she's so underweight and not very strong there's no point in making her poorly for that length of time just yet, I just couldn't do it to her so when we see the specialist and if the tests do come back as a false negative then we'll have to discuss things further then.



Thank you for the suggestions about getting a print out of gluten free foods though, that would be a big help. We've bought her some free from foods (some still have milk in so we've had to be careful) but we seem to be finding a way through it and trying different meals etc and she's starting to put a little weight on now.

I'm sorry to hear about your son Becky, its very difficult when your baby/child is poorly, we were so worried with Grace before we knew what was the matter, she'd been ill for 2 months, losing weight, vomitting, diarrhoea passing blood, lethargy etc, she wasn't the same happy baby she had been so we knew there was definately something wrong. But on a happier note, she's much better now and at least she can live with it like you said, there's a lot worse she could be suffering with, its just nice to hear about recommendations and suggestions.

Thanks

Becky - posted on 07/18/2009

My husband is coeliac as are 3 out of his 4 sisters. We are hoping our children aren't going to have it. Our daughter is 4yrs and our son is 6 months. My son has alot of other genetical problems so we're hoping he doesn't have this too. I don't mean to sound so negative, it certainly isn't the worst thing you can have. It is easy to control with diet and once you get into it it's not too hard to follow. My husband started a strict gluten free diet about a year ago and now has none of the symptoms he used to suffer from. You can buy gluten free flour for making bread, cakes and biscuits (and you can also buy these ready made), as well as things like cereal and even sausages. If you go to any of the larger supermarkets they will have a 'free from' range but you can ask at customer services for a print out of all their gluten free products as some of these will be in other areas like the fozen section. This is often an easier way than spending hours looking yourself, for example we found some bake bean brands, chocolate bars, crisps are alright whilst others aren't. If anything it encourages better healthier eating habits because they can't eat most of the rubbish! Hope this is of some help to you. Also if you get a proper medical diagnosis your daughter will be entitled to gluten free foods on prescription, this will comprise of bread, pasta and flour for cakes or bread. Your daughter is very lucky that you picked up on this so early. Wishing you all the best.

Tamara - posted on 07/18/2009

That is great that they are catching this now. I have a brother in law that has it. It is amazing how many things have wheat in them. The good thing is that your daughter is young enough where she won't know what she is missing. The doctor that is testing her should put you in touch with a nutritionist. There are also websites you can look at.