Questioning Ceoliac

[SJL]

Thanks Bluesky.

I know we will need to use different cooking equipment to ensure no cross contamination (and since it is just the two of us then it wont be hard at home because I don't eat a lot of bread or pasta etc). But I have heard of people talking about gluten being 'sticky' so even if things have been washed they may have gluten. Does that mean if it is confirmed I would need to have all new/never touched gluten utensils etc?

[nickle730]

Hi SJL, I would only consider replacing porous items such as wooden spoons. Metal or plastic items which have been properly washed should be fine. You may find that it is easier for you to eat gluten free as well if your daughter is confirmed as coeliac - we eat a lot of gluten free at home simply because we have a lot of it in the cupboard to suit mum! Particularly sauces, stock, corn flour, gravy mix... all those things you keep in the cupboard and use regularly when cooking. My mum is an extremely sensitive coeliac and we have never had a problem with cross contamination at home, you will soon adjust and it will become second nature to keep 'gluten real' (as my kids call it!) separate from gluten free.

I think it would be a good idea to do get the blood test done as soon as you can... so that you can have an answer one way or another. You sound (understandably!) very stressed, I hope that you are taking care of yourself.

[SJL]

Thanks again Nickle.
Shouldn't have too much to worry about kitchen preperation wise.

I don't think I am too stressed about it although I do want answers. My daughter has CP, autistic tendencies and an intellectual disability so she is non verbal, it can be very distressing watching her cry for no apparent reason - usually ends in vomiting or dioarha.

Should be getting the blood test done next thursday when we are back in RCH for another appointment.

[nickle730]

I hope you get some answers soon, SJL! Hopefully an adjustment in your DD's diet will result in her being more comfortable and suffering less V & D.

[SJL]

So the blood test says no to ceoliacs, I guess we are back to square one???? what is casuing these symptoms? what is stopping her gaining weight?? she is still growing (5 cm in 12 months) but no weight gain???

I have been to the dietician this morning and we are going to make a few changes to her diet including adding a vitamin supplement, more protein and folate specific supplement (and more sunlight for Vit D). The plan is to follow that for 3-4 months and retest everything. Then remove the supplements but leave the foods and see how her body copes.

If she has surgery then they will do the biopsy to test for ceoliac (regardless of the blood results) With any luck her body will sort it self out.

Sjl