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In Need Of Advice.

Stephpecora

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Stephpecora Newbie
Stephpecora
Posted

almost 2 years ago we had our Daughter tested for Celiac. Not know a whole lot about it at the time, our Pediactric doctor did a blood test to confirm any suspicions. The test came back extremely positive. So we never doubted it and I still don't doubt it. My issue now is, due to the not so lovely insurances changes it also meant a change in her Pediatrition. So her new Pediactric doctor is saying we cannot claim she has celiac unless we submit her to a biopsy with a gastrointologist at a Pediactric hospital. I told the new doctor that our Daughters former doctor was confident enough in the blood test to diagnose her without having to put her through a biopsy. So now they want to do the biopsy and, after almost 2 years of not having any Gluten they now want her to eat it just so they can do this biopsy. I am stressing out and so is she. She vomits for 3 says when she eats gluten and that's on top of the stomach pain and the diarrhea. This new doctor is being overly persistent and very pushy. So can celiac be diagnosed just with the blood test and no biopsy? I really don't want to put her through it, if it's not necessary. With the blood test confirmation, and changing her diet she has grown and finally gained weight, we all eat healthy but this doctor is also trying to set up a meeting with a dietitian. Any advice on how to handle this? I cannot imaging purposely feeding her gluten and making her sick just to confirm what a blood test and change in diet has already proved. Thank you.

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kareng Grand Master
kareng
Posted

Maybe this would apply?

Open Original Shared Link

StephanieL Enthusiast
StephanieL
Posted

I would ask the new Dr. why they are qualified to deny Dr. #1's diagnosis.  Then I would go find a different Dr. 

 

Seriously, if that is what it does to your kid and your bloodwork was highly positive and she's done well after being taken off of gluten the only other thing I would think they may want is the genetic testing.  There is talk of the "4 of 5 rule" by Dr. Fassano, though his office doesn't feel that criteria is as good for kids it would give you more ammunition with the new Dr.  The 5 criteria are:   "be defined as the "4 out of 5" rule: the diagnosis of celiac disease is confirmed if at least 4 of the following 5 criteria are satisfied: typical symptoms of celiac disease; positivity of serum celiac disease immunoglobulin, A class autoantibodies at high titer; human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes; celiac enteropathy at the small bowel biopsy; and response to the gluten-free diet."

mamaw Community Regular
mamaw
Posted

I can't offer much help  but  would the  former  doctor  send a letter  to  the  new  doctor  to  state  why  he  knows  she  has celiac? And  honestly  I don't care  for  how  the second  doctor  is  handling  this...  &  I don't  think  he  is making you happy either... can you  look for another  doctor  who may  be  more informed  about  celiac? I also would  print out the  paper  of  what  Kareng  sent  you too...not  that  he  will care about  that either....

Stephpecora Newbie
Stephpecora
Posted
  • Author

Maybe this would apply?

Open Original Shared Link

Thank you!!!

beth01 Enthusiast
beth01
Posted

I'm with StephanieL, how can a doctor un-diagnose someone after two years?  Get a new doctor.  Why subject your daughter to all the misery when you already have a diagnosis?  I wouldn't do it to my kid and she hasn't had a biopsy and is seen by a Pediatric Celiac Specialist at Mayo clinic.  Just my input

mommida Enthusiast
mommida
Posted

We had the same issue, but it was the same ped. gastro. doing the undiagnosing.  (spell check says that isn't even a word~ because it is beyond stupid!)  My daughter was too ill for the endo with biopsy for the Celiac diagnoses.  During the gluten challenge for the blood testing she needed to be hospitalized for dehydration for 3 days on an IV.   She had more problems about 4 years on the gluten free diet.  She was scoped and diagnosed with Eosinophilic Esophagitis.  She was put on an elimination diet to see if there were "food triggers" involved.  She was then scoped and back extremely healthy.  So the elimination diet worked! ~that's when the ped gastro un diagnosed her from Celiac and EE.

 

If your child isn't eating gluten, the testing will be negative.  If she tries the gluten challenge, she could end up being hospitalized for dehydration.  (you did say she vomits for 3 days after an exposure)

 

My advice, find a new doctor that accepts the Celiac diagnoses.  (even if the so called doctor is supposed to be the "best" in the area)  If any other problems or issues arise then she should get a endoscopy with biopsy.

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Stephpecora Newbie
Stephpecora
Posted
  • Author

Thank you so much for all the advice thus far. We will no longer continue with the new pediatrician and Weill go back to her former pediatrician. Considering she had no underlying issues and been healthy since we feel there is no reason to go any further with the testing. I did not even consider dehydration mommida thank you for pointing that out. Yes, she vomits and has sever diarrhea for three days tops when she has gluten. Thank yo again!

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