Hello I have just joined this site today not sure why really, Ithink just looking for someone who may be feeling a bit like me . I have 3 Children 6,5and 1 all who have celiac and two who have been diganosed with refactory sprue. My 5 year old has been nil by mouth for a whole year now and been tube fed and on several medicines, and my six year old was diganosed on Thursday , so at the moment feeling realy fed up and not sure how to cope with it all !!!!!!!!

Hello mum,

Welcome to the site. We have some really good people here who kindly share their experiences to help others. Glad to have you join us.

I noticed you posts on other threads regarding refractory sprue. I really don't know too much about that. You children seen very young to receive such a diagnosis like that.

I am sure that you are going through a difficult time. I hope you find some comfort here.

Thank you for that hopefully someone out there might now something about refactory sprue, because your not given to much information about it even when diganosed. Its tough on the children but whats strange me and my husband test for celiac was negative, not quite sure thats right somehow

Oh my goodness--you need someone to help you! Do you have support groups nearby--especially respite care? Would be terrific if you could find time to go out with friends and have a trustworthy, knowledgeable sitter stay with the children for a while.

How is your five-year old doing? Are you able to just create menus of meat, vegetables and fruit for them?

My heart goes out to you.


C.T. in Chapel Hill, North Carolina

Celiac Mum,


Have you seen this book: Eat Right 4 Your Blood Type? (D'Adamo). The author is a naturopathic physician. I found his website and bought the book as I searched for more info on celiac disease when a gluten test came back positive. The book is controversial, but I find his dietary recommendations have been of great benefit to me. He has lists of foods he says he has tested against blood antibodies in the four blood groups. One list is a "to avoid" list for your blood type; another is a "highly beneficial list"; and another is a "neutral" list. Foods on the neutral list are neither beneficial nor toxic, according to D'Adamo, but act simply as food.

This is a simplified synopsis, but as the field of genetics finds us more different than alike, I'm seeing more of D'Adamo's research being borne out by other scientists. I am O positive, and this author says my blood type should avoid wheat altogether. But wheat is not the only food or substance he says to avoid. I have paid close attention to his recommendations for about four years, and have enjoyed better than average health.

Perhaps this book would help you feed your youngsters?

Good luck to you.

C.T.

Thanks everyone , Well its a it more tricky than that . The doctors in England are not sure what to do next . The truth is my 5 year little girl has been nil by mouth for 13 months now she feeds via a gastrostomy tube and has a specail milk that requires little work to digest . She is also on immunsuppresion and lots of other medication i think the last count it was a further eight , they have tried to reintroduce food many times but she vomits and becames tried and in a lot of pain . so we are running out of options. I go back to my doctor in two weeks with my 6 yr old to find out if she requries the same feeding treatment although i have been told it looks likely .

Welcome. My heart goes out to you and your family.

My heart goes out to you and your family, I hope the children are all doing alright. I know it is hard, I dont know how hard, I know nothing about refractory sprue, but googled it and learned a little bit. I hope this site helps you out, even if it is just so you can talk with other parents of celiac kids. I know it has helped me out!

Bless you and your family,
Jodi

Good Day Mum. Welcome to the site. Your children are young so there is the possiblity they could outgrow this or find some kind of cure that will heal their immune systems. I was in my late 40s when I was diagnosed, but I am not a fullblown celiac. I believe my allergies or intolerances came about because of multiple shocks to my immune system over time, and the failures of my doctors to realize what was happening. Which is why I am also allergic to yeast, molds, mites, broccoli, olives, orange pulp and so on. I was active as a child, teen and served 3 years in the Army without any symptoms. It is easy to get fed up and lose hope for coping with this disease, but you don't want to fall into trying to rationalize why this happened to you and your kids. Why, because there is no rationale, logical or simple answer. You can get some good answers at this site and communicate with others going through the same stuff as you. Hang in there.