Frustrated with Dr!

[Ashley17]

Hello all,

My son, age 4, has had a few symptoms of celiac along with his grandmother being diagnosed.

his lab results (of importance) were: 

wbc: 4.4 range 5.0-16.0

hemoglobin: 10.7 range 11.75-14.0

hematocrit: 32.6 range 34.0-42.0

tissue transglutam ab iga: 1 range <4

iga: 126 range 33-235

endomysial antibody titer: 1:20 range <1:10

 

His pediatrician said the endomysial was positive and he is anemic. We went to the GI today and he thinks the blood test was a fluke! He is re ordering blood work to be done in 2 weeks and thinks my son just had stomach pain that means nothing.

 

What are your thoughts??

[cyclinglady]

8 minutes ago, Ashley17 said:

Hello all,

My son, age 4, has had a few symptoms of celiac along with his grandmother being diagnosed.

his lab results (of importance) were: 

wbc: 4.4 range 5.0-16.0

hemoglobin: 10.7 range 11.75-14.0

hematocrit: 32.6 range 34.0-42.0

tissue transglutam ab iga: 1 range <4

iga: 126 range 33-235

endomysial antibody titer: 1:20 range <1:10

 

His pediatrician said the endomysial was positive and he is anemic. We went to the GI today and he thinks the blood test was a fluke! He is re ordering blood work to be done in 2 weeks and thinks my son just had stomach pain that means nothing.

 

What are your thoughts??

Ugh!  Get your GI to run a complete celiac panel which includes the DGP IgA.  It appears that he's not IgA deficient.  But what do your doctors say about his being anemic?  There's got to be a reason.  Anyway, one positive on the EMA is enough to continue exploring celiac disease.  It's pretty specific to celiac disease.  Plus, I can tell you that personally, I test (even in follow-up testing) negative to the TTG.  I only test positive to the DGP IgA and yet my biopsies revealed a Marsh Stage IIIB!  

While you are waiting for another blood draw, search for another GI.  Heck, why is your current GI  having you wait?  Did you put your son on a gluten free diet?  Maintaining a gluten-free diet is needed for ALL celiac testing!  

Get another GI!!!!!!  Find one that is celiac-savvy!  

Hang in there, mom and FIGHT for your son's health!  Keep on advocating.  Keep on researching and make sure your GI is following standard celiac diagnostic procedure as recommended by the American GI Association and/or celiac centers like the University of Chicago.  

 

 

[Ashley17]

52 minutes ago, cyclinglady said:

Ugh!  Get your GI to run a complete celiac panel which includes the DGP IgA.  It appears that he's not IgA deficient.  But what do your doctors say about his being anemic?  There's got to be a reason.  Anyway, one positive on the EMA is enough to continue exploring celiac disease.  It's pretty specific to celiac disease.  Plus, I can tell you that personally, I test (even in follow-up testing) negative to the TTG.  I only test positive to the DGP IgA and yet my biopsies revealed a Marsh Stage IIIB!  

While you are waiting for another blood draw, search for another GI.  Heck, why is your current GI  having you wait?  Did you put your son on a gluten free diet?  Maintaining a gluten-free diet is needed for ALL celiac testing!  

Get another GI!!!!!!  Find one that is celiac-savvy!  

Hang in there, mom and FIGHT for your son's health!  Keep on advocating.  Keep on researching and make sure your GI is following standard celiac diagnostic procedure as recommended by the American GI Association and/or celiac centers like the University of Chicago.  

 

 

This is all so frustrating! He said something about his anemia not being the same kind of anemia seen in celiac patients? 

He is running a re test including: ferritin, glad in antibodies, tissue transglutaminase, endomysial antibody, cbc, and reticulocytes.

he wants to wait two weeks so that it is 8 weeks after his first round of blood work. He said he it could be that he was just starting to show signs of celiacs or something else might have been going on when he got blood work.

upon arrival to his office he said : "he was positive to bloodwork I wouldn't even have done." That made me feel great! Not!!

My son is still eating gluten but this is taking forever!! I'll keep on looking, thank you!!!!