Anyone know anything about celiac disease or hirshsprungs!!

[BITCAT]

Took my almost 9 yo ds to the docs today, explained that his dads cousin has celiac disease and that i believe he needs testing. Ive read up on the internet but not the same as someone that has first hand experience of it. He said he cant have it because it doesnt cause chronic constipation, from what i have read there are no set symptoms as everyone can be different. I have also brought up hirshsprungs as he has had this problem since birth and has been under consultant since he was 16mths old. Took a whole week for him to have his first poo..there own reading material they gave me contradicts what they say as it says there could be a secondary reason for the problems if a child fails to have a bowel movement in the first 48hrs after birth. They wont listen and keep going on about diet, how can it be to do with diet as he has suffered since birth and was breastfed for the first 3mths. Really am sick of being ignored by gps, consultants and alike.

Hi,

Didn't want to read and run. I have celiac disease and had NO tummy symptoms. I went to the doctors as was really, really tired all the time, I was given AD! Went back after a year of feeling no better and demanded a blood test for thyroid (under) which came back positive, because it is a auto immune disease they then sent bloods back and that confirmed celiac disease. Demand a blood test, go with your gut feeling. (pardon the pun) Good luck.

coeliac disease is significantly underdiagnosed (ie, Dr's miss a lot of cases because the didn't have 'classic' symptoms) You will get a definitive 'yes' or 'no' from a simple blood test (called a coeliac screen or ttg) and then know once and for all. hope that helps

The gp wont even refer for a test Timetosmile..they just dismissed it just like that..i think i may have to go chemist and get a home test. Are these the same tests docs would do!! So fed up with being palmed off and made to feel stupid!!

don't get a home test..they are not neccessarily accurate and don't need to be validated in the way an nhs lab would be. Surely there must be another GP in the practice which would be more sympathetic?
have you seem a community paediatrician? you mention a consultant?

Yep seen one of those..they not bothering either and he is suffering..so am i and the other kids. He has also been to a constipation clinic..who were good and we had it under control but i was told by consultant to ween him off it and now he been of it 2/3mths..he is all backed up again and im at square one again. Cant take the medication longterm so they need to do more than just throw meds at us that wrok then once stopped gets bad again. Ive been up and down seeing various docs, gps, nurses, u name it..the school nurse even tried to blame me for the problems. I have 3 other children..perfectly normal no problems. No one seems to have any idea what they are talking about as everything they tell me totally goes against everything i have read and believe me i have read a lot!!

www.coeliac.org.uk/healthcare-professionals/diagnosis-of-coeliac-disease/symptoms-of-coeliac-disease constipation can be a symptom of coeliac. Also it does run on families. 1 in 100 people have coeliac, but diagnosis is less than this. If a close member of the family has coeliac disease then the statistics increase to 1 in 10.
I struggled to get ds2 diagnosed when he was under 2 even though he had several symptoms and my Mum was also coeliac. It wasn't until he was admitted to hospital with bronchiolitus with his clothes off so his bloated malnutritioned stomach was clearly visible that I finally got him tested. Make sure that ds continues to eat gluten before any test, as going gluten free too soon can cause the test to be negative.

Bumply..why do the doctors not know this..they need to go retake there tests. I knew i had read it can cause constipation and can vary from person to person. They make me feel stupid and doubt myself. What can i do as i cant get anyone to listen to me, they are the doctors and they are failing my ds and clearly dont know there stuff.

Thank you Bumply..for showing me that i am not going mad