Infant With Pancreatic Enzyme Insufficiency ?

[beebs]

Hi there,

I have posted on this forum about my eldest son who is 4. We are coming up to a year or him having celiac like symptoms. Still no diagnosis - We have a history of celiac disease in the family.

Anyhow - one of my youngest sons (one of twins) has been having strange symptoms from birth. Diagnosed as reflux, colic, always crying, never had a solid poo, vommiting, sometimes projectile- after every feed etc etc. The Drs said no point in checking anything out until after 12 months. Because it may just be normal.

So after 12 months we started seeing a paed GI and the other day his blood tests showed low vit d and his stool samples came back showing pancreatic enzyme insufficiency - we had to go to childrens straight away for a sweat test to rule out Cystic Fybrosis - talk about scary. I was freaked- apparently 90% of kids with Pancreatic enzyme insufficiency have CF....Anyhow - just got word that its neg. Thank god. I read that celiac can cause it as well So I am every more sure its celiac now.

I was just wondering if there are any other parents out there whose kids had this weird thing with their pancreas - does it mean its damaged for good? Does it heal itself when the stop having whatever it is that causes it? How common is it in Celiac children?

I think next stop is an endo, I am scared about it cause he is only 16 months - but then again - if he gets a diag then it may mean that my other son will be taken more seriously as well.

[AnObstinateOne]

Golly, I could have written this about my family. I wish I had more info to give you, but here has been our experience. My younger with Pancreatic Insufficiency was diagnosed as an infant...and was never followed up. Not our fault, mind you, but the GI's was impossible to get ahold of, canceled appointments, etc. I gave up. The other ped GI we were seeing for our older child said that a TTG positive test and an elevated sed rate didn't mean celiac disease, since he's negative for the genes. I didn't feel as though he was the best to take the baby too.

She's been on a medication that replaces the enzyme, and helps with digestion. Our regular peds just renew her prescription when she runs low. No one has ever seemed interested in finding out WHY, except to rule out the cystic fibrosis. Shes doing just fine on the enzyme, btw, no other problems.

Still no diagnosis for the older kid with celiac type symptoms. Sorry I couldn't be any more help.

Hi there,

I have posted on this forum about my eldest son who is 4. We are coming up to a year or him having celiac like symptoms. Still no diagnosis - We have a history of celiac disease in the family.

Anyhow - one of my youngest sons (one of twins) has been having strange symptoms from birth. Diagnosed as reflux, colic, always crying, never had a solid poo, vommiting, sometimes projectile- after every feed etc etc. The Drs said no point in checking anything out until after 12 months. Because it may just be normal.

So after 12 months we started seeing a paed GI and the other day his blood tests showed low vit d and his stool samples came back showing pancreatic enzyme insufficiency - we had to go to childrens straight away for a sweat test to rule out Cystic Fybrosis - talk about scary. I was freaked- apparently 90% of kids with Pancreatic enzyme insufficiency have CF....Anyhow - just got word that its neg. Thank god. I read that celiac can cause it as well So I am every more sure its celiac now.

I was just wondering if there are any other parents out there whose kids had this weird thing with their pancreas - does it mean its damaged for good? Does it heal itself when the stop having whatever it is that causes it? How common is it in Celiac children?

I think next stop is an endo, I am scared about it cause he is only 16 months - but then again - if he gets a diag then it may mean that my other son will be taken more seriously as well.

[beebs]

Golly, I could have written this about my family. I wish I had more info to give you, but here has been our experience. My younger with Pancreatic Insufficiency was diagnosed as an infant...and was never followed up. Not our fault, mind you, but the GI's was impossible to get ahold of, canceled appointments, etc. I gave up. The other ped GI we were seeing for our older child said that a TTG positive test and an elevated sed rate didn't mean celiac disease, since he's negative for the genes. I didn't feel as though he was the best to take the baby too.

She's been on a medication that replaces the enzyme, and helps with digestion. Our regular peds just renew her prescription when she runs low. No one has ever seemed interested in finding out WHY, except to rule out the cystic fibrosis. Shes doing just fine on the enzyme, btw, no other problems.

Still no diagnosis for the older kid with celiac type symptoms. Sorry I couldn't be any more help.

Wow -that is interesting that they aren't looking into a cause for it. I have read about it and our Paed GI just said it was really really really uncommon in babies especially when not caused by CF. It can be linked to things like Celiac -some studies say as many as 30% of children with undiagnosed celiac suffer from it, also linked to Crohns, IBD, Lupus etc etc So its crazy that they don't seem concerned about the cause.

What a pain re no diagnosis. I hate it - always feeling like I am being overly anxious or whatever and the Drs just looking at me like I'm nuts. But my eldest became sooooo severely anemic that he developed a heart murmur. So I just keep pushing and pushing and hopefully one day we'll get there. His bloods are all neg - but he is always vitamin D deficient and Iron deficient and we have a first degree celiac relative and it all just seems a bit too convenient for me!

The youngest is neg on bloods as well but he has classic symptoms and is low in vit D and iron too and the Paed GI strongly suspects celiac - hopefully we'll get a diag soon. phew.

Good luck with your kids!

[Gutsy Girl]

I happened upon this thread while searching for "pancreatic insufficiency" and wondering about my symptoms and if they correlate. Anyways, just wanted to express that I wish you all the very best in finding competent and helpful doctors and getting some answers. I am not much help, but I'm happy to send well-wishes.

Sarah

[beebs]

I happened upon this thread while searching for "pancreatic insufficiency" and wondering about my symptoms and if they correlate. Anyways, just wanted to express that I wish you all the very best in finding competent and helpful doctors and getting some answers. I am not much help, but I'm happy to send well-wishes.

Sarah

One of my sons symptoms as well as steatorrhea is that what he eats comes out the same way - not all the time. But like the other day 15 hours after dinner the night before he had a stool and it was like the entire undigested dinner - sooooo gross. Poor little baby!

[Braunson's-mom]

Well Praise the Lord for this post. My son is 7 and when he was 3mo old he started in with the BIG D and vomitting and it was like everything came through whole. They would ask for a stool sample and I would bring in undigested food and they would say no I need stool and I would say this is all I can get off the diaper because the rest in all asorbed into the diaper. Well I will try to make this post short because I have a passion about gluten-free people and the way it changed my families life. He has always had bad sinus infections and upper respitory infections and it has been bad since he was a baby. He was in and out of the hospital. When he was 1 we put him on IVIG because he no longer had an imune system. When he was 20 months old we put him on a gluten-free diet (no confirmed testing)and he started doing so much better but he was still sick but no BIG D and vomitting. HUGE improvment.

So when he was 3 our Dr. from Kansas sent us to Atlanta Georgia to see a specialist and she told me that he needed to go back to GI specialest to see about the celiac because she thought his immune problems were GI related. He was having about 14-15 infections a year. So I went back to Kansas and he told me that he would do a bunch of test and see what he could find. Called back and said he carried the genes for celiac so that must be the problem and that immunolgy dr needed to decide what to do because he is just fine (GI wise).He was still growing very slowly about 1 lb a year and about 1 inch a year.

When he was 5 we were sent to a growth specialest and for 18mo we saw 3 different drs and on finally said you need to go back to a GI specialist because all his growth problems are related to his GI problems. I told them we have been there several times and there is nothing wrong other than celiac and all his labs are saying that we have all the gluten out.

So at 6.5 years we went back to the GI and the dr said I am going to prove these dr's that these problems are not GI related. So he took 7 tubes of blood and a stool sample..... 1 week latter I got a call and said everything came back normale except he has a Moderate Pancreatic ENzyme Definciency. So we started on Creon which is pancreatic enzyme. In one month of starting on the medicine he gained 5lbs and grew 2 inches. Within 4 months he had gained a total of 10lbs and 5 inches.

We also did the whole sweat test but we also did the genetic testing for CF because we were told that 99% of the kids with this desease have CF. But we are very thankful he doesnt have it. Good thing is that it is treatable bad thing is that it is a life long disease. He will never ever out grow it. They told me that because we had put Braunson on the gluten-free diet it had taken the stress off his system but that is why it took them so long to diagnoisis him. He does very well on the medicine we had to add another one to help with some of the side effects.

I wanted to write all this to let you know you arent alone. I feel alone at times and I am so happy to know that someone else understands this disease and process. I would love to visit with you about this if you want to.