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CF and Celiac
- Thread starter beansmom
- Start date
My 4 year old has CF and was also recently diagnosed with Celiac, because she was requiring large amounts of enzymes and still not growing at all. I am feeling a bit overwhelmed by staying high fat, high protien and also gluten free.
<br />
<br />Anyone else dealing with this combo??
<br />
<br />
<br />
<br />Anyone else dealing with this combo??
<br />
<br />
ehtansky21
New member
check out my website...we are gluten free and mostly dairy free, along with the high fat...
<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/search/label/Gluten-Free%20Recipes
">http://chasing-truth.blogspot....Gluten-Free%20Recipes
</a>
ask away, if you have questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
blessings,
missa
<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/search/label/Gluten-Free%20Recipes
">http://chasing-truth.blogspot....Gluten-Free%20Recipes
</a>
ask away, if you have questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
blessings,
missa
ehtansky21
New member
check out my website...we are gluten free and mostly dairy free, along with the high fat...
<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/search/label/Gluten-Free%20Recipes
">http://chasing-truth.blogspot....Gluten-Free%20Recipes
</a>
ask away, if you have questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
blessings,
missa
<a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/search/label/Gluten-Free%20Recipes
">http://chasing-truth.blogspot....Gluten-Free%20Recipes
</a>
ask away, if you have questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
blessings,
missa
ehtansky21
New member
check out my website...we are gluten free and mostly dairy free, along with the high fat...
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/search/label/Gluten-Free%20Recipes
">http://chasing-truth.blogspot....Gluten-Free%20Recipes
</a><br />
<br />ask away, if you have questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />blessings,
<br />missa
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://chasing-truth.blogspot.com/search/label/Gluten-Free%20Recipes
">http://chasing-truth.blogspot....Gluten-Free%20Recipes
</a><br />
<br />ask away, if you have questions <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />blessings,
<br />missa
M
Mommafirst
Guest
I have no advice...but my daughter was also tested for celiacs and I was overwhelmed by the idea of dealing with both. It is always accutely in my mind that we could be dealing with both celiac's and CF, even though her celiac test came back as "not active celiacs".
I wish you luck as you maneuver yet another complex diagnosis.
I wish you luck as you maneuver yet another complex diagnosis.
M
Mommafirst
Guest
I have no advice...but my daughter was also tested for celiacs and I was overwhelmed by the idea of dealing with both. It is always accutely in my mind that we could be dealing with both celiac's and CF, even though her celiac test came back as "not active celiacs".
I wish you luck as you maneuver yet another complex diagnosis.
I wish you luck as you maneuver yet another complex diagnosis.
M
Mommafirst
Guest
I have no advice...but my daughter was also tested for celiacs and I was overwhelmed by the idea of dealing with both. It is always accutely in my mind that we could be dealing with both celiac's and CF, even though her celiac test came back as "not active celiacs".
<br />
<br />I wish you luck as you maneuver yet another complex diagnosis.
<br />
<br />I wish you luck as you maneuver yet another complex diagnosis.
Heather: re. the dx 'Not active celiac disease': did Alyssa come back as having the gene for celiac, but just not having the blood test results typical for a child with the disease? If so, while a *very* significant proportion of the population carries one of the gene mutations that causes celiac and only a small percentage actually have the disease, I'd recommend you periodically have her retested, since the test is not always accurate in young kids, due to their immature immune systems.
eta> I don't think genetic testing is routine, but her dr may have ordered it if he was really looking in that direction. Emily's been tested twice for celiac a couple yrs apart, but her results were pretty much as negative as they could possibly be so we never pursued genetic testing. It was on the table the first time, as it was prior to her CF dx and we were at our wits' end looking for answers!
eta> I don't think genetic testing is routine, but her dr may have ordered it if he was really looking in that direction. Emily's been tested twice for celiac a couple yrs apart, but her results were pretty much as negative as they could possibly be so we never pursued genetic testing. It was on the table the first time, as it was prior to her CF dx and we were at our wits' end looking for answers!
Heather: re. the dx 'Not active celiac disease': did Alyssa come back as having the gene for celiac, but just not having the blood test results typical for a child with the disease? If so, while a *very* significant proportion of the population carries one of the gene mutations that causes celiac and only a small percentage actually have the disease, I'd recommend you periodically have her retested, since the test is not always accurate in young kids, due to their immature immune systems.
eta> I don't think genetic testing is routine, but her dr may have ordered it if he was really looking in that direction. Emily's been tested twice for celiac a couple yrs apart, but her results were pretty much as negative as they could possibly be so we never pursued genetic testing. It was on the table the first time, as it was prior to her CF dx and we were at our wits' end looking for answers!
eta> I don't think genetic testing is routine, but her dr may have ordered it if he was really looking in that direction. Emily's been tested twice for celiac a couple yrs apart, but her results were pretty much as negative as they could possibly be so we never pursued genetic testing. It was on the table the first time, as it was prior to her CF dx and we were at our wits' end looking for answers!
Heather: re. the dx 'Not active celiac disease': did Alyssa come back as having the gene for celiac, but just not having the blood test results typical for a child with the disease? If so, while a *very* significant proportion of the population carries one of the gene mutations that causes celiac and only a small percentage actually have the disease, I'd recommend you periodically have her retested, since the test is not always accurate in young kids, due to their immature immune systems.
<br />
<br />eta> I don't think genetic testing is routine, but her dr may have ordered it if he was really looking in that direction. Emily's been tested twice for celiac a couple yrs apart, but her results were pretty much as negative as they could possibly be so we never pursued genetic testing. It was on the table the first time, as it was prior to her CF dx and we were at our wits' end looking for answers!
<br />
<br />eta> I don't think genetic testing is routine, but her dr may have ordered it if he was really looking in that direction. Emily's been tested twice for celiac a couple yrs apart, but her results were pretty much as negative as they could possibly be so we never pursued genetic testing. It was on the table the first time, as it was prior to her CF dx and we were at our wits' end looking for answers!
M
Mommafirst
Guest
Harriett,
This was a huge source of agravation for me. She was genetically tested first. GI never called me with the results. I spoke with three different nurses... first said she doesn't have the gene can't have celiacs, second said she does have the gene but doesn't have celiacs, third said she does have the gene and could have celiacs. It took months of calling daily, crying, freakng out, and causing all kinds of hell. GI never called me back. We had a biopsy done -- thus ruling out active celiacs. We were routinely checking her IGA (?), but when I finally got a good GI to see her (fired that other one promptly, but CF center wouldn't let me get a new GI right away) he pulled up her paperwork and assured me that she carried the gene that 60% of the population has and that based on her other testing we don't have to worry about celiacs. But I still have them check her IGA yearly with her regular labs.
This was a huge source of agravation for me. She was genetically tested first. GI never called me with the results. I spoke with three different nurses... first said she doesn't have the gene can't have celiacs, second said she does have the gene but doesn't have celiacs, third said she does have the gene and could have celiacs. It took months of calling daily, crying, freakng out, and causing all kinds of hell. GI never called me back. We had a biopsy done -- thus ruling out active celiacs. We were routinely checking her IGA (?), but when I finally got a good GI to see her (fired that other one promptly, but CF center wouldn't let me get a new GI right away) he pulled up her paperwork and assured me that she carried the gene that 60% of the population has and that based on her other testing we don't have to worry about celiacs. But I still have them check her IGA yearly with her regular labs.
M
Mommafirst
Guest
Harriett,
This was a huge source of agravation for me. She was genetically tested first. GI never called me with the results. I spoke with three different nurses... first said she doesn't have the gene can't have celiacs, second said she does have the gene but doesn't have celiacs, third said she does have the gene and could have celiacs. It took months of calling daily, crying, freakng out, and causing all kinds of hell. GI never called me back. We had a biopsy done -- thus ruling out active celiacs. We were routinely checking her IGA (?), but when I finally got a good GI to see her (fired that other one promptly, but CF center wouldn't let me get a new GI right away) he pulled up her paperwork and assured me that she carried the gene that 60% of the population has and that based on her other testing we don't have to worry about celiacs. But I still have them check her IGA yearly with her regular labs.
This was a huge source of agravation for me. She was genetically tested first. GI never called me with the results. I spoke with three different nurses... first said she doesn't have the gene can't have celiacs, second said she does have the gene but doesn't have celiacs, third said she does have the gene and could have celiacs. It took months of calling daily, crying, freakng out, and causing all kinds of hell. GI never called me back. We had a biopsy done -- thus ruling out active celiacs. We were routinely checking her IGA (?), but when I finally got a good GI to see her (fired that other one promptly, but CF center wouldn't let me get a new GI right away) he pulled up her paperwork and assured me that she carried the gene that 60% of the population has and that based on her other testing we don't have to worry about celiacs. But I still have them check her IGA yearly with her regular labs.
M
Mommafirst
Guest
Harriett,
<br />
<br />This was a huge source of agravation for me. She was genetically tested first. GI never called me with the results. I spoke with three different nurses... first said she doesn't have the gene can't have celiacs, second said she does have the gene but doesn't have celiacs, third said she does have the gene and could have celiacs. It took months of calling daily, crying, freakng out, and causing all kinds of hell. GI never called me back. We had a biopsy done -- thus ruling out active celiacs. We were routinely checking her IGA (?), but when I finally got a good GI to see her (fired that other one promptly, but CF center wouldn't let me get a new GI right away) he pulled up her paperwork and assured me that she carried the gene that 60% of the population has and that based on her other testing we don't have to worry about celiacs. But I still have them check her IGA yearly with her regular labs.
<br />
<br />This was a huge source of agravation for me. She was genetically tested first. GI never called me with the results. I spoke with three different nurses... first said she doesn't have the gene can't have celiacs, second said she does have the gene but doesn't have celiacs, third said she does have the gene and could have celiacs. It took months of calling daily, crying, freakng out, and causing all kinds of hell. GI never called me back. We had a biopsy done -- thus ruling out active celiacs. We were routinely checking her IGA (?), but when I finally got a good GI to see her (fired that other one promptly, but CF center wouldn't let me get a new GI right away) he pulled up her paperwork and assured me that she carried the gene that 60% of the population has and that based on her other testing we don't have to worry about celiacs. But I still have them check her IGA yearly with her regular labs.
Oh WHAT a hassle. There is no reason for putting you through all that. I'd consider having the full elisa panel done every so often; the combination of various values can increase the accuracy of the results vs. just checking the one.
Drs. that put us through that kind of misery really make me angry. I have such a reduced tolerance for that kind of stuff these days. We have as much right as they do to be treated with respect, and we are the ones paying them for a service- the least they could do is communicate effectively.
Drs. that put us through that kind of misery really make me angry. I have such a reduced tolerance for that kind of stuff these days. We have as much right as they do to be treated with respect, and we are the ones paying them for a service- the least they could do is communicate effectively.
Oh WHAT a hassle. There is no reason for putting you through all that. I'd consider having the full elisa panel done every so often; the combination of various values can increase the accuracy of the results vs. just checking the one.
Drs. that put us through that kind of misery really make me angry. I have such a reduced tolerance for that kind of stuff these days. We have as much right as they do to be treated with respect, and we are the ones paying them for a service- the least they could do is communicate effectively.
Drs. that put us through that kind of misery really make me angry. I have such a reduced tolerance for that kind of stuff these days. We have as much right as they do to be treated with respect, and we are the ones paying them for a service- the least they could do is communicate effectively.