Celiac vs poor response to enzymes?

K

kitomd21

New member
My daughter's weight to length % went up from 11% to 22% over the last three months. We've adjusted her enzymes from four Pancrease MT4s to 6 Pancrease MT4's per feeding. We've had greater success with Pancrease than Creon. She was stooling 6-7x daily while taking Creon. Now she has 2-4 decent-sized BMs/day but often with visible oil separation. Her dietician mentioned Celiac dz as a possibility. Nobody in our family has Celiac dz (echos "nobody in our family has CF"!!).

Questions -

1.) Does your child still show signs of malabsorption (i.e., oil separation) in their stool despite accurate enzyme dosing?
2.) How often does your child have a BM while receiving accurate enzyme dosing?
3.) Have you observed improved absorption with different enzyme brands? Which brand? Our CF doctor has had the greatest success with Creon, but again, our daughter didn't do well with this form.

Ellie never seems uncomfortable nor exhibits any of the other symptoms as they relate to Celiac other than malabsorption.

Any other input/suggestions would be appreciated!
 
K

kitomd21

New member
My daughter's weight to length % went up from 11% to 22% over the last three months. We've adjusted her enzymes from four Pancrease MT4s to 6 Pancrease MT4's per feeding. We've had greater success with Pancrease than Creon. She was stooling 6-7x daily while taking Creon. Now she has 2-4 decent-sized BMs/day but often with visible oil separation. Her dietician mentioned Celiac dz as a possibility. Nobody in our family has Celiac dz (echos "nobody in our family has CF"!!).

Questions -

1.) Does your child still show signs of malabsorption (i.e., oil separation) in their stool despite accurate enzyme dosing?
2.) How often does your child have a BM while receiving accurate enzyme dosing?
3.) Have you observed improved absorption with different enzyme brands? Which brand? Our CF doctor has had the greatest success with Creon, but again, our daughter didn't do well with this form.

Ellie never seems uncomfortable nor exhibits any of the other symptoms as they relate to Celiac other than malabsorption.

Any other input/suggestions would be appreciated!
 
K

kitomd21

New member
My daughter's weight to length % went up from 11% to 22% over the last three months. We've adjusted her enzymes from four Pancrease MT4s to 6 Pancrease MT4's per feeding. We've had greater success with Pancrease than Creon. She was stooling 6-7x daily while taking Creon. Now she has 2-4 decent-sized BMs/day but often with visible oil separation. Her dietician mentioned Celiac dz as a possibility. Nobody in our family has Celiac dz (echos "nobody in our family has CF"!!).

Questions -

1.) Does your child still show signs of malabsorption (i.e., oil separation) in their stool despite accurate enzyme dosing?
2.) How often does your child have a BM while receiving accurate enzyme dosing?
3.) Have you observed improved absorption with different enzyme brands? Which brand? Our CF doctor has had the greatest success with Creon, but again, our daughter didn't do well with this form.

Ellie never seems uncomfortable nor exhibits any of the other symptoms as they relate to Celiac other than malabsorption.

Any other input/suggestions would be appreciated!
 
K

kitomd21

New member
My daughter's weight to length % went up from 11% to 22% over the last three months. We've adjusted her enzymes from four Pancrease MT4s to 6 Pancrease MT4's per feeding. We've had greater success with Pancrease than Creon. She was stooling 6-7x daily while taking Creon. Now she has 2-4 decent-sized BMs/day but often with visible oil separation. Her dietician mentioned Celiac dz as a possibility. Nobody in our family has Celiac dz (echos "nobody in our family has CF"!!).

Questions -

1.) Does your child still show signs of malabsorption (i.e., oil separation) in their stool despite accurate enzyme dosing?
2.) How often does your child have a BM while receiving accurate enzyme dosing?
3.) Have you observed improved absorption with different enzyme brands? Which brand? Our CF doctor has had the greatest success with Creon, but again, our daughter didn't do well with this form.

Ellie never seems uncomfortable nor exhibits any of the other symptoms as they relate to Celiac other than malabsorption.

Any other input/suggestions would be appreciated!
 
K

kitomd21

New member
My daughter's weight to length % went up from 11% to 22% over the last three months. We've adjusted her enzymes from four Pancrease MT4s to 6 Pancrease MT4's per feeding. We've had greater success with Pancrease than Creon. She was stooling 6-7x daily while taking Creon. Now she has 2-4 decent-sized BMs/day but often with visible oil separation. Her dietician mentioned Celiac dz as a possibility. Nobody in our family has Celiac dz (echos "nobody in our family has CF"!!).
<br />
<br />Questions -
<br />
<br />1.) Does your child still show signs of malabsorption (i.e., oil separation) in their stool despite accurate enzyme dosing?
<br />2.) How often does your child have a BM while receiving accurate enzyme dosing?
<br />3.) Have you observed improved absorption with different enzyme brands? Which brand? Our CF doctor has had the greatest success with Creon, but again, our daughter didn't do well with this form.
<br />
<br />Ellie never seems uncomfortable nor exhibits any of the other symptoms as they relate to Celiac other than malabsorption.
<br />
<br />Any other input/suggestions would be appreciated!
 
C

chrissyd

New member
I take enzymes with my meals, and am still dx'd with malabsorbtion. It is so bad that my docs have said they feel it is too severe for it to be just related to my CF. I get IV vitamins, minerals and lipids 3x a week to keep my levels good, and I am currently undergoing testing to figure out what exactly is causing my problems. My one doc says celiac's, another says it is a combination of my genetic diseases (CF and a mitochondrial disease).

I'm assuming they have tested her vitamin and mineral levels and the must be low for them to think celiac's. My doc said that if I was taking ensymes and supplements and still not getting what I need something other than just CF was going on.

Is she taking supplements? If so are they making a defference at all? I actually am getting my small intestin biopsied this week to try to solve the mystery for me. We tried upping enzymes, changing them and even adding more fiber to my diet. Nothing helped...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I take enzymes with my meals, and am still dx'd with malabsorbtion. It is so bad that my docs have said they feel it is too severe for it to be just related to my CF. I get IV vitamins, minerals and lipids 3x a week to keep my levels good, and I am currently undergoing testing to figure out what exactly is causing my problems. My one doc says celiac's, another says it is a combination of my genetic diseases (CF and a mitochondrial disease).

I'm assuming they have tested her vitamin and mineral levels and the must be low for them to think celiac's. My doc said that if I was taking ensymes and supplements and still not getting what I need something other than just CF was going on.

Is she taking supplements? If so are they making a defference at all? I actually am getting my small intestin biopsied this week to try to solve the mystery for me. We tried upping enzymes, changing them and even adding more fiber to my diet. Nothing helped...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I take enzymes with my meals, and am still dx'd with malabsorbtion. It is so bad that my docs have said they feel it is too severe for it to be just related to my CF. I get IV vitamins, minerals and lipids 3x a week to keep my levels good, and I am currently undergoing testing to figure out what exactly is causing my problems. My one doc says celiac's, another says it is a combination of my genetic diseases (CF and a mitochondrial disease).

I'm assuming they have tested her vitamin and mineral levels and the must be low for them to think celiac's. My doc said that if I was taking ensymes and supplements and still not getting what I need something other than just CF was going on.

Is she taking supplements? If so are they making a defference at all? I actually am getting my small intestin biopsied this week to try to solve the mystery for me. We tried upping enzymes, changing them and even adding more fiber to my diet. Nothing helped...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I take enzymes with my meals, and am still dx'd with malabsorbtion. It is so bad that my docs have said they feel it is too severe for it to be just related to my CF. I get IV vitamins, minerals and lipids 3x a week to keep my levels good, and I am currently undergoing testing to figure out what exactly is causing my problems. My one doc says celiac's, another says it is a combination of my genetic diseases (CF and a mitochondrial disease).

I'm assuming they have tested her vitamin and mineral levels and the must be low for them to think celiac's. My doc said that if I was taking ensymes and supplements and still not getting what I need something other than just CF was going on.

Is she taking supplements? If so are they making a defference at all? I actually am getting my small intestin biopsied this week to try to solve the mystery for me. We tried upping enzymes, changing them and even adding more fiber to my diet. Nothing helped...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I take enzymes with my meals, and am still dx'd with malabsorbtion. It is so bad that my docs have said they feel it is too severe for it to be just related to my CF. I get IV vitamins, minerals and lipids 3x a week to keep my levels good, and I am currently undergoing testing to figure out what exactly is causing my problems. My one doc says celiac's, another says it is a combination of my genetic diseases (CF and a mitochondrial disease).
<br />
<br />I'm assuming they have tested her vitamin and mineral levels and the must be low for them to think celiac's. My doc said that if I was taking ensymes and supplements and still not getting what I need something other than just CF was going on.
<br />
<br />Is she taking supplements? If so are they making a defference at all? I actually am getting my small intestin biopsied this week to try to solve the mystery for me. We tried upping enzymes, changing them and even adding more fiber to my diet. Nothing helped...
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
K

kitomd21

New member
We're supposed to update the dietician this week since upping her enzyme dose. If she's still showing signs of malabsorption, she wants us to see an GI doc. A blood panel will be performed...if those results suggest Celiac, they may suggest an intestinal biopsy. Frustrating!

We add Duocal to her food and olive oil...along with lots of whipping cream! We're successful at achieving 1500 calories/day...
 
K

kitomd21

New member
We're supposed to update the dietician this week since upping her enzyme dose. If she's still showing signs of malabsorption, she wants us to see an GI doc. A blood panel will be performed...if those results suggest Celiac, they may suggest an intestinal biopsy. Frustrating!

We add Duocal to her food and olive oil...along with lots of whipping cream! We're successful at achieving 1500 calories/day...
 
K

kitomd21

New member
We're supposed to update the dietician this week since upping her enzyme dose. If she's still showing signs of malabsorption, she wants us to see an GI doc. A blood panel will be performed...if those results suggest Celiac, they may suggest an intestinal biopsy. Frustrating!

We add Duocal to her food and olive oil...along with lots of whipping cream! We're successful at achieving 1500 calories/day...
 
K

kitomd21

New member
We're supposed to update the dietician this week since upping her enzyme dose. If she's still showing signs of malabsorption, she wants us to see an GI doc. A blood panel will be performed...if those results suggest Celiac, they may suggest an intestinal biopsy. Frustrating!

We add Duocal to her food and olive oil...along with lots of whipping cream! We're successful at achieving 1500 calories/day...
 
K

kitomd21

New member
We're supposed to update the dietician this week since upping her enzyme dose. If she's still showing signs of malabsorption, she wants us to see an GI doc. A blood panel will be performed...if those results suggest Celiac, they may suggest an intestinal biopsy. Frustrating!
<br />
<br />We add Duocal to her food and olive oil...along with lots of whipping cream! We're successful at achieving 1500 calories/day...
 
C

chrissyd

New member
It's very frustraiting for me; so I know it has to be for you! It seems like no metter what I do my numbers always come back deficient in something.

It seems like for the past few months (since Feb.) I have been constipated and then I have diarrea and then it's back to constipation. I'm sorry that Ellie is having a tough time and I hope you guys can get it resolved for her soon. Update me on it once you guys have an answer I'm curious to know as well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
It's very frustraiting for me; so I know it has to be for you! It seems like no metter what I do my numbers always come back deficient in something.

It seems like for the past few months (since Feb.) I have been constipated and then I have diarrea and then it's back to constipation. I'm sorry that Ellie is having a tough time and I hope you guys can get it resolved for her soon. Update me on it once you guys have an answer I'm curious to know as well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
It's very frustraiting for me; so I know it has to be for you! It seems like no metter what I do my numbers always come back deficient in something.

It seems like for the past few months (since Feb.) I have been constipated and then I have diarrea and then it's back to constipation. I'm sorry that Ellie is having a tough time and I hope you guys can get it resolved for her soon. Update me on it once you guys have an answer I'm curious to know as well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
It's very frustraiting for me; so I know it has to be for you! It seems like no metter what I do my numbers always come back deficient in something.

It seems like for the past few months (since Feb.) I have been constipated and then I have diarrea and then it's back to constipation. I'm sorry that Ellie is having a tough time and I hope you guys can get it resolved for her soon. Update me on it once you guys have an answer I'm curious to know as well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
It's very frustraiting for me; so I know it has to be for you! It seems like no metter what I do my numbers always come back deficient in something.
<br />
<br />It seems like for the past few months (since Feb.) I have been constipated and then I have diarrea and then it's back to constipation. I'm sorry that Ellie is having a tough time and I hope you guys can get it resolved for her soon. Update me on it once you guys have an answer I'm curious to know as well...
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
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