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thought he had celiacs, found out he had CF
- Thread starter brematt
- Start date
Might be a good idea to have your son test. And the pot belly is pretty much normal.
I'm sure you're overwhelmed right now. I know I was, but pretty soon you'll get everything down to a routine. At the beginning I wrote everything down -- how much DS ate, every time I gave him meds -- some were twice a day, three times and 4 times a day. Now I just keep a white board in the kitchen cabinet and mark off when I give him his meds.
I'm sure you're overwhelmed right now. I know I was, but pretty soon you'll get everything down to a routine. At the beginning I wrote everything down -- how much DS ate, every time I gave him meds -- some were twice a day, three times and 4 times a day. Now I just keep a white board in the kitchen cabinet and mark off when I give him his meds.
Might be a good idea to have your son test. And the pot belly is pretty much normal.
I'm sure you're overwhelmed right now. I know I was, but pretty soon you'll get everything down to a routine. At the beginning I wrote everything down -- how much DS ate, every time I gave him meds -- some were twice a day, three times and 4 times a day. Now I just keep a white board in the kitchen cabinet and mark off when I give him his meds.
I'm sure you're overwhelmed right now. I know I was, but pretty soon you'll get everything down to a routine. At the beginning I wrote everything down -- how much DS ate, every time I gave him meds -- some were twice a day, three times and 4 times a day. Now I just keep a white board in the kitchen cabinet and mark off when I give him his meds.
Might be a good idea to have your son test. And the pot belly is pretty much normal.
I'm sure you're overwhelmed right now. I know I was, but pretty soon you'll get everything down to a routine. At the beginning I wrote everything down -- how much DS ate, every time I gave him meds -- some were twice a day, three times and 4 times a day. Now I just keep a white board in the kitchen cabinet and mark off when I give him his meds.
I'm sure you're overwhelmed right now. I know I was, but pretty soon you'll get everything down to a routine. At the beginning I wrote everything down -- how much DS ate, every time I gave him meds -- some were twice a day, three times and 4 times a day. Now I just keep a white board in the kitchen cabinet and mark off when I give him his meds.
Cheerful,
I just want to second getting your son tested for CF. My daughter was also diagnosed with CF when I was pregnant, through genetic testing, so we know her Cf mutations. My son was 4 at the time. He displayed no symptoms of CF but the CF center we went to recommended sweat testing(they recommend it for all siblings) my son to rule out CF. His sweat test was normal. I still worried and worried that he could have CF, so i had my son have the genetic blood test to look for our Cf mutations. He does not carry either mutation, meaning that he does not have CF or even carry the gene to pass on the Cf mutation when he has children. it was good to have the blood work for piece of mind.
I just want to second getting your son tested for CF. My daughter was also diagnosed with CF when I was pregnant, through genetic testing, so we know her Cf mutations. My son was 4 at the time. He displayed no symptoms of CF but the CF center we went to recommended sweat testing(they recommend it for all siblings) my son to rule out CF. His sweat test was normal. I still worried and worried that he could have CF, so i had my son have the genetic blood test to look for our Cf mutations. He does not carry either mutation, meaning that he does not have CF or even carry the gene to pass on the Cf mutation when he has children. it was good to have the blood work for piece of mind.
Cheerful,
I just want to second getting your son tested for CF. My daughter was also diagnosed with CF when I was pregnant, through genetic testing, so we know her Cf mutations. My son was 4 at the time. He displayed no symptoms of CF but the CF center we went to recommended sweat testing(they recommend it for all siblings) my son to rule out CF. His sweat test was normal. I still worried and worried that he could have CF, so i had my son have the genetic blood test to look for our Cf mutations. He does not carry either mutation, meaning that he does not have CF or even carry the gene to pass on the Cf mutation when he has children. it was good to have the blood work for piece of mind.
I just want to second getting your son tested for CF. My daughter was also diagnosed with CF when I was pregnant, through genetic testing, so we know her Cf mutations. My son was 4 at the time. He displayed no symptoms of CF but the CF center we went to recommended sweat testing(they recommend it for all siblings) my son to rule out CF. His sweat test was normal. I still worried and worried that he could have CF, so i had my son have the genetic blood test to look for our Cf mutations. He does not carry either mutation, meaning that he does not have CF or even carry the gene to pass on the Cf mutation when he has children. it was good to have the blood work for piece of mind.
Cheerful,
I just want to second getting your son tested for CF. My daughter was also diagnosed with CF when I was pregnant, through genetic testing, so we know her Cf mutations. My son was 4 at the time. He displayed no symptoms of CF but the CF center we went to recommended sweat testing(they recommend it for all siblings) my son to rule out CF. His sweat test was normal. I still worried and worried that he could have CF, so i had my son have the genetic blood test to look for our Cf mutations. He does not carry either mutation, meaning that he does not have CF or even carry the gene to pass on the Cf mutation when he has children. it was good to have the blood work for piece of mind.
I just want to second getting your son tested for CF. My daughter was also diagnosed with CF when I was pregnant, through genetic testing, so we know her Cf mutations. My son was 4 at the time. He displayed no symptoms of CF but the CF center we went to recommended sweat testing(they recommend it for all siblings) my son to rule out CF. His sweat test was normal. I still worried and worried that he could have CF, so i had my son have the genetic blood test to look for our Cf mutations. He does not carry either mutation, meaning that he does not have CF or even carry the gene to pass on the Cf mutation when he has children. it was good to have the blood work for piece of mind.
Cheerfull,
The test that you had when you were pregnant may have just been a screening to check for markers, not the genes themselves. So yes it is possible that your son has CF -- with your daughter's diagnosis he should be checked again with full genetic testing. It may be cheaper if you already know your daughters genes so they know which two to look for -- you can email the ambry guy on this site and ask him for sure, I could be mistaken about that part.
How was your son tested for celiac? I know there is a blood test that is 85% accurate, but I was told to be sure the best test is the colonoscopy to get the biopsy done, which is very accurate. My daughter was tested (with both blood test and biopsy) for celiac. She does not have it but she does still follow the celiac diet because she feels better without eating wheat.
Also, assuming your doctor is correct, and your son does for sure have celiac, it is not out of the realm of possibility to have BOTH CF and celiac. Both diseases are genetic from the same region (European) I don't have the statistics at my fingertips but I know I have read that those with CF are at a greater risk for having celiac (statistically speaking)
The test that you had when you were pregnant may have just been a screening to check for markers, not the genes themselves. So yes it is possible that your son has CF -- with your daughter's diagnosis he should be checked again with full genetic testing. It may be cheaper if you already know your daughters genes so they know which two to look for -- you can email the ambry guy on this site and ask him for sure, I could be mistaken about that part.
How was your son tested for celiac? I know there is a blood test that is 85% accurate, but I was told to be sure the best test is the colonoscopy to get the biopsy done, which is very accurate. My daughter was tested (with both blood test and biopsy) for celiac. She does not have it but she does still follow the celiac diet because she feels better without eating wheat.
Also, assuming your doctor is correct, and your son does for sure have celiac, it is not out of the realm of possibility to have BOTH CF and celiac. Both diseases are genetic from the same region (European) I don't have the statistics at my fingertips but I know I have read that those with CF are at a greater risk for having celiac (statistically speaking)
Cheerfull,
The test that you had when you were pregnant may have just been a screening to check for markers, not the genes themselves. So yes it is possible that your son has CF -- with your daughter's diagnosis he should be checked again with full genetic testing. It may be cheaper if you already know your daughters genes so they know which two to look for -- you can email the ambry guy on this site and ask him for sure, I could be mistaken about that part.
How was your son tested for celiac? I know there is a blood test that is 85% accurate, but I was told to be sure the best test is the colonoscopy to get the biopsy done, which is very accurate. My daughter was tested (with both blood test and biopsy) for celiac. She does not have it but she does still follow the celiac diet because she feels better without eating wheat.
Also, assuming your doctor is correct, and your son does for sure have celiac, it is not out of the realm of possibility to have BOTH CF and celiac. Both diseases are genetic from the same region (European) I don't have the statistics at my fingertips but I know I have read that those with CF are at a greater risk for having celiac (statistically speaking)
The test that you had when you were pregnant may have just been a screening to check for markers, not the genes themselves. So yes it is possible that your son has CF -- with your daughter's diagnosis he should be checked again with full genetic testing. It may be cheaper if you already know your daughters genes so they know which two to look for -- you can email the ambry guy on this site and ask him for sure, I could be mistaken about that part.
How was your son tested for celiac? I know there is a blood test that is 85% accurate, but I was told to be sure the best test is the colonoscopy to get the biopsy done, which is very accurate. My daughter was tested (with both blood test and biopsy) for celiac. She does not have it but she does still follow the celiac diet because she feels better without eating wheat.
Also, assuming your doctor is correct, and your son does for sure have celiac, it is not out of the realm of possibility to have BOTH CF and celiac. Both diseases are genetic from the same region (European) I don't have the statistics at my fingertips but I know I have read that those with CF are at a greater risk for having celiac (statistically speaking)
Cheerfull,
The test that you had when you were pregnant may have just been a screening to check for markers, not the genes themselves. So yes it is possible that your son has CF -- with your daughter's diagnosis he should be checked again with full genetic testing. It may be cheaper if you already know your daughters genes so they know which two to look for -- you can email the ambry guy on this site and ask him for sure, I could be mistaken about that part.
How was your son tested for celiac? I know there is a blood test that is 85% accurate, but I was told to be sure the best test is the colonoscopy to get the biopsy done, which is very accurate. My daughter was tested (with both blood test and biopsy) for celiac. She does not have it but she does still follow the celiac diet because she feels better without eating wheat.
Also, assuming your doctor is correct, and your son does for sure have celiac, it is not out of the realm of possibility to have BOTH CF and celiac. Both diseases are genetic from the same region (European) I don't have the statistics at my fingertips but I know I have read that those with CF are at a greater risk for having celiac (statistically speaking)
The test that you had when you were pregnant may have just been a screening to check for markers, not the genes themselves. So yes it is possible that your son has CF -- with your daughter's diagnosis he should be checked again with full genetic testing. It may be cheaper if you already know your daughters genes so they know which two to look for -- you can email the ambry guy on this site and ask him for sure, I could be mistaken about that part.
How was your son tested for celiac? I know there is a blood test that is 85% accurate, but I was told to be sure the best test is the colonoscopy to get the biopsy done, which is very accurate. My daughter was tested (with both blood test and biopsy) for celiac. She does not have it but she does still follow the celiac diet because she feels better without eating wheat.
Also, assuming your doctor is correct, and your son does for sure have celiac, it is not out of the realm of possibility to have BOTH CF and celiac. Both diseases are genetic from the same region (European) I don't have the statistics at my fingertips but I know I have read that those with CF are at a greater risk for having celiac (statistically speaking)
Yes they checked him by doing a stomach scope and a biopsy of the small intestne! He had the blood work done 1st that showed the markers for celic but the biopsy showed he didn't have it. Just a wheet algery. He has been throwing up almost every day for a year! So now he is on previced and calfate(can't spell it right) to coat his Ep. SoI asked my hubby if we should get him tested even tho the test they did when I was preg. was neg and he said no, I think he is scared of the outcome! I cant had anymore bad news!
Yes they checked him by doing a stomach scope and a biopsy of the small intestne! He had the blood work done 1st that showed the markers for celic but the biopsy showed he didn't have it. Just a wheet algery. He has been throwing up almost every day for a year! So now he is on previced and calfate(can't spell it right) to coat his Ep. SoI asked my hubby if we should get him tested even tho the test they did when I was preg. was neg and he said no, I think he is scared of the outcome! I cant had anymore bad news!
Yes they checked him by doing a stomach scope and a biopsy of the small intestne! He had the blood work done 1st that showed the markers for celic but the biopsy showed he didn't have it. Just a wheet algery. He has been throwing up almost every day for a year! So now he is on previced and calfate(can't spell it right) to coat his Ep. SoI asked my hubby if we should get him tested even tho the test they did when I was preg. was neg and he said no, I think he is scared of the outcome! I cant had anymore bad news!
Keep working on your husband, but I think your son should be tested for CF. Most all doctors who work with CF will automatically test the siblings. With your son having digestive issues I think that any doctor who is experienced in treating CF would be out of line to not consider testing your son. I'd be willing to bet if you mentioned his condition to your daughters CF doc, he would be tested again.
Keep working on your husband, but I think your son should be tested for CF. Most all doctors who work with CF will automatically test the siblings. With your son having digestive issues I think that any doctor who is experienced in treating CF would be out of line to not consider testing your son. I'd be willing to bet if you mentioned his condition to your daughters CF doc, he would be tested again.
Keep working on your husband, but I think your son should be tested for CF. Most all doctors who work with CF will automatically test the siblings. With your son having digestive issues I think that any doctor who is experienced in treating CF would be out of line to not consider testing your son. I'd be willing to bet if you mentioned his condition to your daughters CF doc, he would be tested again.
Wow! Thanks for the advice about having my daughter tested. I've been sucked into the trap of assuming she doesn't have cf because she's barely ever been sick. Ironic that I'd fall into that trap when my son went undx for 11 years! I'll talk to the CF dr. next visit.
As far as dealing with peds, we've decided to leave the one we've had for 1 month. He questioned my son's diagnois b/c he had more GI symptoms than lung ones. I actually had to explain to him that there is variation of lung function among CF patients. I'm currently looking for someone who will trust my judgement and include me in decision making re: illness. I know when my son is sick! Luckily the CF clinic in Spokane (3 hrs away) told me if I had any problems I could call them.
As far as dealing with peds, we've decided to leave the one we've had for 1 month. He questioned my son's diagnois b/c he had more GI symptoms than lung ones. I actually had to explain to him that there is variation of lung function among CF patients. I'm currently looking for someone who will trust my judgement and include me in decision making re: illness. I know when my son is sick! Luckily the CF clinic in Spokane (3 hrs away) told me if I had any problems I could call them.