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Kaiser Patients - Help With See Note

aimless75

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aimless75 Rookie
aimless75
Posted

Hi,

I have been having my kids tested for a bunch of things including celiac and I just got back my 7 year old's son's tests and it says SEE NOTE for both tTG IgG and tTg IgA.  When my daughter and I had ours done the numbers were shown, but they were both negative.  My daughter was close (.87) when Kaiser reference range is >.90.  So, of course now it's 9pm and I can't called and I'm a little bit freaking out because I'm assuming it's only bad results that they won't show on the automatic lab emails (now I have to wait to talk to the doctor to get the results).  Did this happen to anyone else with kaiser or did your positive results also come up on your lab email???

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GottaSki Mentor
GottaSki
Posted

Hang in there Mom.

 

Forgive me...but if you are all being tested for Celiac Antibodies...do you suspect a gluten issue?

 

Again...sorry if I miss understood.

 

Welcome to the Forum...feel free to read as much as you like, hang out a bit and ask questions..always someone hanging out here :)

aimless75 Rookie
aimless75
Posted
  • Author

Hang in there Mom.

 

Forgive me...but if you are all being tested for Celiac Antibodies...do you suspect a gluten issue?

 

Again...sorry if I miss understood.

 

Welcome to the Forum...feel free to read as much as you like, hang out a bit and ask questions..always someone hanging out here :)

Yes, I have been undergoing tests for a few months and am in the middle of a gluten challenge and am scheduled for a endoscopy/colonoscopy on Wednesday to rule out Celiac, Chrohn's and eosinophilic gastritis.  I had my daughter tested because she is so small and fell off her curves but she was negative, but borderline.  My son has a lot of stomachaches, foul and yucky BM, joint pain (told growing pains), and a lot of allergy issues that he ended up being on prednisone last year and now is on Singulair daily.  I finally asked to have him checked for a bunch of stuff because I planned on taking them both off gluten and dairy for a month to see if things got better, but I wanted a baseline before.  I'm still waiting til they open so I can call but our pediatrician of course is out of office all week so hopefully someone else will tell me.

GottaSki Mentor
GottaSki
Posted

Yes, I have been undergoing tests for a few months and am in the middle of a gluten challenge and am scheduled for a endoscopy/colonoscopy on Wednesday to rule out Celiac, Chrohn's and eosinophilic gastritis.  I had my daughter tested because she is so small and fell off her curves but she was negative, but borderline.  My son has a lot of stomachaches, foul and yucky BM, joint pain (told growing pains), and a lot of allergy issues that he ended up being on prednisone last year and now is on Singulair daily.  I finally asked to have him checked for a bunch of stuff because I planned on taking them both off gluten and dairy for a month to see if things got better, but I wanted a baseline before.  I'm still waiting til they open so I can call but our pediatrician of course is out of office all week so hopefully someone else will tell me.

 

Sounds like a great plan to remove all gluten to monitor symptom changes/improvement.  Kids often improve more quickly than adults, but it still can take some time to reverse the autoimmune type symptoms...I strongly suggest removing gluten for a minimum of three months - six is better.

 

I can tell you my teens tested negative but have both improved gluten-free.  One of which had "growing pains" consistently for years -- when gluten had been removed for some time -- no more joint/muscle pain and he grew about a foot that first year gluten-free with no "growing pains".

  • 3 years later...
Bina Newbie
Bina
Posted

@aimless75 so I was wondering what did "see note" mean. I'm in the situation you were in and am curious of what that result means. 

cyclinglady Grand Master
cyclinglady
Posted
9 hours ago, Bina said:

@aimless75 so I was wondering what did "see note" mean. I'm in the situation you were in and am curious of what that result means. 

This is an older posting, so I am not sure the original OP will respond.   Kaiser is great, but they are all about keeping the costs down.  So, they do not allow their first-line doctors to order anything but the TTG tests for celiac screening.   Only a GI (or perhaps a higher up specialist) can order an entire panel.  If you tested negative on the TTG, and are still struggling with celiac-like symptoms, I recommend asking for a GI referral.  Ask for the complete panel and document in writing (be nice).  

Why do I know this?  I test negative always to the TTG.  When family members went to Kaiser to get celiac testing, their PCP doctor could only order the TTG.  

So, do not give up on a celiac disease diagnosis without getting the complete panel.  

  • 1 month later...
confused23 Newbie
confused23
Posted
On 10/20/2016 at 1:05 AM, Bina said:

@aimless75 so I was wondering what did "see note" mean. I'm in the situation you were in and am curious of what that result means. 

I have a result with see note by it as well. Was your outcome good or bad :( I'm anxiously awaiting a call from my doctor now

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    • Trish G
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      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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      ttg iga high (646 mg/dl) other results are normal

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      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
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