I humbly come to you for advice...

[ehtansky21]

I have been doing some research on gluten intolerance lately, as I will be writing a post on it in my blog....
<br />Just because your daughter is not testing positive for Crohns or Celiacs does not mean she can handle gluten....
<br />The blood tests are not very indicative of how they are tolerating gluten.....a saliva or stool test, testing for AGA (antigliadin IgA antibodies)is much more accurate and recommended.
<br />
<br />I would suggest looking into those tests....once you go off gluten, you will not be able to get an accurate reading, so if you want definites, get the test first.
<br />
<br />blessings,
<br />missa

 

[jmom]

Thanks Missa, worth looking into!

 

[jmom]

Thanks Missa, worth looking into!

 

[jmom]

Thanks Missa, worth looking into!

 

[edan]

Missa is right. Enterolab (sp?) can do this test through the mail for you. For whatever reason, some doctors don't even coonsider the stool test, but it is supposed to be more accurate.

 

[edan]

Missa is right. Enterolab (sp?) can do this test through the mail for you. For whatever reason, some doctors don't even coonsider the stool test, but it is supposed to be more accurate.

 

[edan]

Missa is right. Enterolab (sp?) can do this test through the mail for you. For whatever reason, some doctors don't even coonsider the stool test, but it is supposed to be more accurate.

 

[jmom]

You guys have convinced me...I will look into getting this test ordered. By the way, she was biopsied for celiac's and it was negative. In your opinion, do you think this is still the gold standard? And again, has ANYONE seen what literally looks like "bubble bath" coming out of their dear kid's digestive system??? Thanks again!

 

[jmom]

You guys have convinced me...I will look into getting this test ordered. By the way, she was biopsied for celiac's and it was negative. In your opinion, do you think this is still the gold standard? And again, has ANYONE seen what literally looks like "bubble bath" coming out of their dear kid's digestive system??? Thanks again!

 

[jmom]

You guys have convinced me...I will look into getting this test ordered. By the way, she was biopsied for celiac's and it was negative. In your opinion, do you think this is still the gold standard? And again, has ANYONE seen what literally looks like "bubble bath" coming out of their dear kid's digestive system??? Thanks again!

 

[hsnth2008]

you may want to think about going to a mayo clinic where teams of doctors work together to figure out explanations for strange things. they run every test possible and have extensive experience with many patients. it may be worth a trip- is it worth waiting and seeing when scar tissue is being formed? In CF scar tissue in the intestines can cause blockages later on.

 

[hsnth2008]

you may want to think about going to a mayo clinic where teams of doctors work together to figure out explanations for strange things. they run every test possible and have extensive experience with many patients. it may be worth a trip- is it worth waiting and seeing when scar tissue is being formed? In CF scar tissue in the intestines can cause blockages later on.

 

[hsnth2008]

you may want to think about going to a mayo clinic where teams of doctors work together to figure out explanations for strange things. they run every test possible and have extensive experience with many patients. it may be worth a trip- is it worth waiting and seeing when scar tissue is being formed? In CF scar tissue in the intestines can cause blockages later on.

 

[jmom]

Thanks for the suggestion. You prompted me to not quite let it go...you're right about scar tissue. I agree with you that sometimes it is worth going a distance to get second opinions. We took my daughter to Stanford for a team of doctors to look at her case last year. They were intrigued by the purple lesion-turned-into-scar issue in her colon. We had colonscopy photos and everything. None of the doctors had ever seen anything like it. It was not a polyp or any other common intestinal growth. To this day they still do not know what it is. Yet I don't think it has anything to do with her fat malabsorption, because it was in her large intestine. And I know GI bleeding is not a common symptom of CF.
Thanks again, Cheryl and Harriet, for mentioning that you recognize the floating orange blobs as fat malabsorption. Any info or experience helps.
Sorry to be redundant, but has ANYONE seen the "BUBBLE BATH" looking stuff that I described in my original message????? (...PLEASE don't laugh...okay, I ADMIT I SOUND RIDICULOUS...!) Any info or experience helps. LOL

 

[jmom]

Thanks for the suggestion. You prompted me to not quite let it go...you're right about scar tissue. I agree with you that sometimes it is worth going a distance to get second opinions. We took my daughter to Stanford for a team of doctors to look at her case last year. They were intrigued by the purple lesion-turned-into-scar issue in her colon. We had colonscopy photos and everything. None of the doctors had ever seen anything like it. It was not a polyp or any other common intestinal growth. To this day they still do not know what it is. Yet I don't think it has anything to do with her fat malabsorption, because it was in her large intestine. And I know GI bleeding is not a common symptom of CF.
Thanks again, Cheryl and Harriet, for mentioning that you recognize the floating orange blobs as fat malabsorption. Any info or experience helps.
Sorry to be redundant, but has ANYONE seen the "BUBBLE BATH" looking stuff that I described in my original message????? (...PLEASE don't laugh...okay, I ADMIT I SOUND RIDICULOUS...!) Any info or experience helps. LOL

 

[jmom]

Thanks for the suggestion. You prompted me to not quite let it go...you're right about scar tissue. I agree with you that sometimes it is worth going a distance to get second opinions. We took my daughter to Stanford for a team of doctors to look at her case last year. They were intrigued by the purple lesion-turned-into-scar issue in her colon. We had colonscopy photos and everything. None of the doctors had ever seen anything like it. It was not a polyp or any other common intestinal growth. To this day they still do not know what it is. Yet I don't think it has anything to do with her fat malabsorption, because it was in her large intestine. And I know GI bleeding is not a common symptom of CF.
<br />Thanks again, Cheryl and Harriet, for mentioning that you recognize the floating orange blobs as fat malabsorption. Any info or experience helps.
<br />Sorry to be redundant, but has ANYONE seen the "BUBBLE BATH" looking stuff that I described in my original message????? (...PLEASE don't laugh...okay, I ADMIT I SOUND RIDICULOUS...!) Any info or experience helps. LOL

 

[ehtansky21]

no bubble bath looking stuff here....

could it be like gas bubbles??? is she on any antacids????

no laughing here!!! you are frustrated and you are being an awesome momma by trying to solve what seems right now like an unsolvable mystery...

blessings,
missa

 

[ehtansky21]

no bubble bath looking stuff here....

could it be like gas bubbles??? is she on any antacids????

no laughing here!!! you are frustrated and you are being an awesome momma by trying to solve what seems right now like an unsolvable mystery...

blessings,
missa

 

[ehtansky21]

no bubble bath looking stuff here....
<br />
<br />could it be like gas bubbles??? is she on any antacids????
<br />
<br />no laughing here!!! you are frustrated and you are being an awesome momma by trying to solve what seems right now like an unsolvable mystery...
<br />
<br />blessings,
<br />missa

 

[Ratatosk]

While waiting for DS diagnosis, my MIL mentioned when her nephew was a baby he had copious, foul smelling, yellow foamy stools and that her SIL didn't know what the heck was going on. The doctor told her to give him banana flakes -- sorta like rice cereal. And apparently that did the trick. He apparently still has some gi issues which they never really figured out. Figure it's probably an allergy.

DS DID for the first time ever have some yellow foam in the toilet a couple weeks ago. My MIL didn't realize pumpkin seeds have fat in them and let DS graze on them all afternoon. Ugh!