Biopsy negetaive, going for sweat test, poop question

J

jmom

New member
Hi there! Sounds like we are in the same boat as you. Stools float every single time my daughter goes. They always float, but they don't always look so ugly...sometimes the look healthy (but floating) and then two hours later she'll have a horrible, huge, foamy one, and then several hours later back to normal again...go figure! One fecal fat test came out positive for fat malabsorption, one came out negative. She had 3 colonoscopies (three significant bleeding episodes several years ago)and during the endoscopy part the doctor said the biopsy ruled out celiac's, as well as a blood test ruling it out. (Although, I still wonder, because relatives claim they are sensitive to wheat.)
<br /> Her sweat tests came out just under borderline (in the 30's). Just today I picked up paperwork for the Ambry amplified genetic test.
<br /> You'll have to let us know how the sweat test and genetic test come out. You have found a wonderful group of moms in this forum. I have been extremely thankful for their advice.
 
E

Eden

New member
Jmom, sorry you are going through all of this, it is so difficult when we can't obtain a diagnosis for our child. If we could just get a diagnosis, whether it is Celiac, IBS, CF or something else, at least we would know what the best treatments are. I'm worried about the sweat test coming in high negative or borderline, because then it feels like there is still a question. I guess the Ambry amplified is the best way to go. I'm obsessed with reading everything I can to try and figure out what could be wrong with DS. I think, maybe its IBS or some allergy, although the IGA blood test came back negative for any allergic reaction going on his body. But he's always coughing, maybe it is just that his asthma isn't under control. But than what about the FTT, the pale skin and other symptoms that don't seem related to anything like night sweats. My DD is 16 and I've never gone through anything like this with her. My mind just won't stop. I start thinking about myself and start wondering if maybe some carriers really could have symptoms. I have chronic sinus infections, asthma (on Advair and Albuterol) and nasal polyps. I don't cough from my asthma, just hard to breath. All the thoughts swimming around my head and I've only been going through this for a few months. I feel so terrible for everyone who went years and years. I took the dr. at their word when they said DS had bad asthma, that his coughs were viral, then turned into a bacterial infection and prescribed antibiotics, then it would start all over again. I should have caught on earlier. DS's diapers were terrible. They would clear a room. It ran up his back, down his legs and many, many times a day. I never changed a diaper with a formed stool. I thought it was weird, but thought maybe he just had a sensitive stomach! I wish I had looked into this years ago.

Please let me know the results from the Ambry when you get them back. And good for you not letting it go, we should trust our motherly instincts. Maybe it will turn out that I'm just getting more neurotic as I grow older, but I just feel like something is not right.

Best of luck, I'll be looking out for your results. I hope no matter what the results are your DD is able to get the proper treatment.
 
E

Eden

New member
Jmom, sorry you are going through all of this, it is so difficult when we can't obtain a diagnosis for our child. If we could just get a diagnosis, whether it is Celiac, IBS, CF or something else, at least we would know what the best treatments are. I'm worried about the sweat test coming in high negative or borderline, because then it feels like there is still a question. I guess the Ambry amplified is the best way to go. I'm obsessed with reading everything I can to try and figure out what could be wrong with DS. I think, maybe its IBS or some allergy, although the IGA blood test came back negative for any allergic reaction going on his body. But he's always coughing, maybe it is just that his asthma isn't under control. But than what about the FTT, the pale skin and other symptoms that don't seem related to anything like night sweats. My DD is 16 and I've never gone through anything like this with her. My mind just won't stop. I start thinking about myself and start wondering if maybe some carriers really could have symptoms. I have chronic sinus infections, asthma (on Advair and Albuterol) and nasal polyps. I don't cough from my asthma, just hard to breath. All the thoughts swimming around my head and I've only been going through this for a few months. I feel so terrible for everyone who went years and years. I took the dr. at their word when they said DS had bad asthma, that his coughs were viral, then turned into a bacterial infection and prescribed antibiotics, then it would start all over again. I should have caught on earlier. DS's diapers were terrible. They would clear a room. It ran up his back, down his legs and many, many times a day. I never changed a diaper with a formed stool. I thought it was weird, but thought maybe he just had a sensitive stomach! I wish I had looked into this years ago.

Please let me know the results from the Ambry when you get them back. And good for you not letting it go, we should trust our motherly instincts. Maybe it will turn out that I'm just getting more neurotic as I grow older, but I just feel like something is not right.

Best of luck, I'll be looking out for your results. I hope no matter what the results are your DD is able to get the proper treatment.
 
E

Eden

New member
Jmom, sorry you are going through all of this, it is so difficult when we can't obtain a diagnosis for our child. If we could just get a diagnosis, whether it is Celiac, IBS, CF or something else, at least we would know what the best treatments are. I'm worried about the sweat test coming in high negative or borderline, because then it feels like there is still a question. I guess the Ambry amplified is the best way to go. I'm obsessed with reading everything I can to try and figure out what could be wrong with DS. I think, maybe its IBS or some allergy, although the IGA blood test came back negative for any allergic reaction going on his body. But he's always coughing, maybe it is just that his asthma isn't under control. But than what about the FTT, the pale skin and other symptoms that don't seem related to anything like night sweats. My DD is 16 and I've never gone through anything like this with her. My mind just won't stop. I start thinking about myself and start wondering if maybe some carriers really could have symptoms. I have chronic sinus infections, asthma (on Advair and Albuterol) and nasal polyps. I don't cough from my asthma, just hard to breath. All the thoughts swimming around my head and I've only been going through this for a few months. I feel so terrible for everyone who went years and years. I took the dr. at their word when they said DS had bad asthma, that his coughs were viral, then turned into a bacterial infection and prescribed antibiotics, then it would start all over again. I should have caught on earlier. DS's diapers were terrible. They would clear a room. It ran up his back, down his legs and many, many times a day. I never changed a diaper with a formed stool. I thought it was weird, but thought maybe he just had a sensitive stomach! I wish I had looked into this years ago.
<br />
<br />Please let me know the results from the Ambry when you get them back. And good for you not letting it go, we should trust our motherly instincts. Maybe it will turn out that I'm just getting more neurotic as I grow older, but I just feel like something is not right.
<br />
<br />Best of luck, I'll be looking out for your results. I hope no matter what the results are your DD is able to get the proper treatment.
 
J

jmom

New member
Eden, it sounds like you have a healthy older child? You made a cute comment about us getting more neurotic the older we get, but I'm like you...I have two older healthy boys who NEVER go to the doctor. My 7 year old (the undiagnosed one) is ALWAYS at the doctor.) We should not feel like hypochondriac moms; lilke you said, our instinct kicks in, especially when we know we don't overreact with the older children. I stopped caring what the doctors think about me, because ultimately I told myself it's not about me anyway, it's about what's best for my child. Anyway, my daughter has been lucky with patient, listening doctors.
 
J

jmom

New member
Eden, it sounds like you have a healthy older child? You made a cute comment about us getting more neurotic the older we get, but I'm like you...I have two older healthy boys who NEVER go to the doctor. My 7 year old (the undiagnosed one) is ALWAYS at the doctor.) We should not feel like hypochondriac moms; lilke you said, our instinct kicks in, especially when we know we don't overreact with the older children. I stopped caring what the doctors think about me, because ultimately I told myself it's not about me anyway, it's about what's best for my child. Anyway, my daughter has been lucky with patient, listening doctors.
 
J

jmom

New member
Eden, it sounds like you have a healthy older child? You made a cute comment about us getting more neurotic the older we get, but I'm like you...I have two older healthy boys who NEVER go to the doctor. My 7 year old (the undiagnosed one) is ALWAYS at the doctor.) We should not feel like hypochondriac moms; lilke you said, our instinct kicks in, especially when we know we don't overreact with the older children. I stopped caring what the doctors think about me, because ultimately I told myself it's not about me anyway, it's about what's best for my child. Anyway, my daughter has been lucky with patient, listening doctors.
 
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