Testing for coeliacs disease

[Jchihuahua]

I was wondering if anyone has any experience of the testing process for toddlers/preschoolers. People who have known me on here for a while will probably remember the terrible time I had with Tommy as a baby, with tummy issue, constant inconsolable screaming etc. He was diagnosed with colic and silent reflux but he has never got better and he turned 3 in December. He is under a paediatric gastroenterologist and a dietician. He is dropping centiles (75th to 25th) and he doesn't seem to grow hardly at all. He is wearing the same clothes and shoe size as he was this time last year. The dietician says she thinks his body isn't absorbing the goodness from his food. Various things have been mentioned including chrons and coeliac disease and he has just (yesterday) had blood tests for coeliacs. We should get the result next week.

The doctor mentioned that a positive blood test is followed up by an intestinal biopsy and I was wondering if anyone has any experience of this and what it entails. Is is a simple thing where he would be in and out of hospital the same day or is it more complicated than that?

 

[Natsku]

Don't know for toddlers but had the test myself and it was a simple in and out job, less than an hour but I think with a toddler they'll need to use sedation so it'll take a bit longer.

 

[Jchihuahua]

Thanks. They said it would be a general anaesthetic for a child but good to know it is a simple procedure.

 

[Natsku]

Yeah it's really simple, just a tube down the throat with a camera and it cuts off little samples. He'll need to fast for at least 12 hours beforehand and a normal diet with gluten prior to that

 

[Jchihuahua]

Thanks. I had so many questions but came out without having asked most of them as the inital thing was getting the bloods done which he has had done now. I hope we get some answers soon. This has been going on 3 years now.

 

[Natsku]

I hope you get answers and if he does have coeliac disease it'll be much easier for him starting the diet young so he doesn't remember

 

[Jchihuahua]

He did a 6 week gluten elimination diet a few months back which had no impact whatsoever on his symptoms so not sure if it will turn out to be coeliacs. The doctor said it is possible to need longer than that for an elimination diet to start working though so we'll see.

 

[Mummy Bean]

My brother was tested at age 10, he had to fast before hand, and had choice of general or local. As he had a local so didnt have to stay in as long after. But was deff a one day, real simple procedure.

Following that and the bloods he then had 3 different allergy tests and had to do various elimination diets which were monitored by a dietitian.

Most ppl with it are also lactose as well as gluten intolerant. In my brothers case he can have diary/lactose but cannot have Gluten, Rye, Wheat, Barley and some other bits - still shocked at the amount of foods that contain the stuff!

But even 4 years on he still significantly under weight and has to have protein shakes to keep his weight up and needs vitamins and regular check ups.

But it deff more manageable and he no longer has the cramps ect.

 

[Natsku]

He did a 6 week gluten elimination diet a few months back which had no impact whatsoever on his symptoms so not sure if it will turn out to be coeliacs. The doctor said it is possible to need longer than that for an elimination diet to start working though so we'll see.

Yeah it might take longer than 6 weeks for an elimination diet to show improvement. It all depends on how much damage has been done to the intestine as severity of the disease varies from person to person.

 

[bananabump]

Following this as I think my 3 year old may also have Coeliacs x

 

[proudparent88]

I am having problems with my one son too and he is three and hardly growing and still in 18mo clothes. He constantly has the diarrhea and we took him to a gastrointestinal dr just the 31st. They took some of his stool tested it for blood and it was positive now hr has to be on a diet of no milk/soy for three weeks he has had a ton of blood work done I have to give four stool samples all to be tested for different things and if everything comes back normal then she wants to test for celiac disease and do an upper and lower endoscopy. So I am in the same boat as you pretty much and know nothing about this stuff.

 

[Jchihuahua]

Thanks for the advice ladies. I really appreciate it and it is very useful.

I'm sorry to hear others are dealing with this too. It has been so confusing and such a nightmare. It has been going on his whole life now. He screamed in agony 13 hours a day every day as a baby for 8 whole months. That eased at 8 months old but he has never had a solid poo and he has to wear pull ups as he doesn't know when he is going to go. His poor bum is so so sore all the time because of it. He doesn't grow as he should, he gets patches of dry skin all over him, he gets a bloated tummy. We don't know if he is in pain as this is all he has ever known so is normal to him. Months of different elimination diets that have all been fruitless. We are under the dietician and paediatric gastroenterologist and have been referred tpo the allergy clinic too so along with all the blood tests we should have some answers soon. So much has been mentioned though...allergies, intolerances, coeliacs, chron's, colitis. We just don't know. He is due to start pre-school in 2 weeks and I am really worried about how he'll cope with his poorly tummy.

 

[proudparent88]

Thanks for the advice ladies. I really appreciate it and it is very useful.

I'm sorry to hear others are dealing with this too. It has been so confusing and such a nightmare. It has been going on his whole life now. He screamed in agony 13 hours a day every day as a baby for 8 whole months. That eased at 8 months old but he has never had a solid poo and he has to wear pull ups as he doesn't know when he is going to go. His poor bum is so so sore all the time because of it. He doesn't grow as he should, he gets patches of dry skin all over him, he gets a bloated tummy. We don't know if he is in pain as this is all he has ever known so is normal to him. Months of different elimination diets that have all been fruitless. We are under the dietician and paediatric gastroenterologist and have been referred tpo the allergy clinic too so along with all the blood tests we should have some answers soon. So much has been mentioned though...allergies, intolerances, coeliacs, chron's, colitis. We just don't know. He is due to start pre-school in 2 weeks and I am really worried about how he'll cope with his poorly tummy.

I totally understand how frustrating everything is for you I go through it too. Tommy has never had solid bowel movements either and is still in a diaper because he doesn't know when he's going to go making it impossible to potty train him. And my mother nags me to get him broken and she just doesn't understand. I hope you soon get some answers and that you don't have a difficult time overcoming what you find out!

 

[Jchihuahua]

Thanks for the advice ladies. I really appreciate it and it is very useful.

I'm sorry to hear others are dealing with this too. It has been so confusing and such a nightmare. It has been going on his whole life now. He screamed in agony 13 hours a day every day as a baby for 8 whole months. That eased at 8 months old but he has never had a solid poo and he has to wear pull ups as he doesn't know when he is going to go. His poor bum is so so sore all the time because of it. He doesn't grow as he should, he gets patches of dry skin all over him, he gets a bloated tummy. We don't know if he is in pain as this is all he has ever known so is normal to him. Months of different elimination diets that have all been fruitless. We are under the dietician and paediatric gastroenterologist and have been referred tpo the allergy clinic too so along with all the blood tests we should have some answers soon. So much has been mentioned though...allergies, intolerances, coeliacs, chron's, colitis. We just don't know. He is due to start pre-school in 2 weeks and I am really worried about how he'll cope with his poorly tummy.

I totally understand how frustrating everything is for you I go through it too. Tommy has never had solid bowel movements either and is still in a diaper because he doesn't know when he's going to go making it impossible to potty train him. And my mother nags me to get him broken and she just doesn't understand. I hope you soon get some answers and that you don't have a difficult time overcoming what you find out!

My boy is also called Tommy! My Tommy wees happily on a potty and would love to wear underpants but there is no way at all that he can. The dietician agreed with me that he has to wear pull ups for the foreseeable future but I feel bad for him about it. I hope you also get answers soon x