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Dr Appt Tomorrow Need Advise!

mmcc54

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mmcc54 Contributor
mmcc54
Posted

Our daughter was marked failure to thrive and her IGG blood test came back pos when she was 12m at 13m she went in for a biopsy that came back neg...her GI said to try a gluten-free diet we did..she slowly gained weight. we had an apt her with GI in Dec (she was 20 months) still slowly growing but small he said he didn't think it was celiacs at all, said her pos IGG which was 16 (anything over 4 pos) was most likely a lap error since her biopsy was neg and that most "true" celiacs have IGGs over 60 and well over 100. At her last apt he said he didn't want to see her anymore, of course I was shocked and freaking out a bit ahe said if "I felt I needed to push the issue" I could give her gluten and have pedi retest her blood but he didn't think it was worth it!!!! So Emma has been eating gluten from January 2 she has an apt her her pedi do I ask for a another blood panel????

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GottaSki Mentor
GottaSki
Posted

Absolutely, she should have a complete antibody panel.

 

For a GI to say antibodies need to be extremely high to consider Celiac makes me livid!  Not all biopsies are accurate...sometimes the damage is spotty and sometimes it is celiac in early stages.  

 

My antibodies were only mildly positive at 43 after suffering with undiagnosed, misdiagnosed or dismissed symptoms my entire life...endoscopy revealed complete villious atrophy.  Five years later and my intestines have yet to recover.

 

Has she had nutrients checked?

 

Does she have other symptoms other than slow growth?

 

Trust your gut Mom....test for celiac and ask the doctor what else should be tested for as it may not be celiac, but there is not enough evidence to rule it out...especially for such a young child.

nvsmom Community Regular
nvsmom
Posted

I agree. Retest for celiac disease and then gluten-free. You already know that she has a positive result (4 times normal is very positive) and does better gluten-free. Don't let her suffer due to some doctor's ignorance.  :(

  • 2 weeks later...
mmcc54 Contributor
mmcc54
Posted
  • Author

Test is waaayyy positive igg is greater then 100 iga 75

cyclinglady Grand Master
cyclinglady
Posted

How horrible for you having to deal with doctor who is….(well, you can fill in the blank!)  Good job, Mom, for fighting on behalf of your baby!  

GottaSki Mentor
GottaSki
Posted

While I am glad to hear she had results that confirm what you already know....it still makes me sad doctors continue to be obtuse and dismissive with regard to celiac.

 

Good job sticking with it Mom.  I hope your little one is feeling much better soon :)

mmcc54 Contributor
mmcc54
Posted
  • Author

Thank you everyone!!! At this point we think we will make the journey to boston which isn't too far away to see a specialist there and get a firm diagnose for her sadly I don't want to bring her back to this gi doctor. Im curious if they would do another biopsy to confirm?

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GottaSki Mentor
GottaSki
Posted

Thank you everyone!!! At this point we think we will make the journey to boston which isn't too far away to see a specialist there and get a firm diagnose for her sadly I don't want to bring her back to this gi doctor. Im curious if they would do another biopsy to confirm?

 

I would imagine they'll suggest biopsy.  I would think a discussion, review of her history and perhaps more blood tests (I'm not clear if she ever had complete antibody or nutrient testing) should be sufficient to diagnose.   Ultimately, it is your decision...after discussing with a doctor that has real celiac knowledge/training/experience whichever decision you make will be the right one for your child :)

 

Is she still eating gluten?

NoGlutenCooties Contributor
NoGlutenCooties
Posted

If it were me, I would send the results to the first clueless doctor and let him know what a boob he is and how he put the health of your child in danger.  Let him have it - both barrels - no holding back. 

And great job sticking up for what you knew to be right!  Go mom!

mmcc54 Contributor
mmcc54
Posted
  • Author

Thank you :) I did in fact call and raise hell this morning with them, the nurse who I spoke with was very sweet and im still waiting for the dr to call. But she said most likely a biopsy should be redone. Yes they said to still keep giving her alittle bit of gluten daily

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