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What Now? Results Of Endoscopy For Dd

gfgtj

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gfgtj Newbie
gfgtj
Posted

Looking for some insight and opinions. 10 yr old daughter has been having stomach problems since Jan of 2013 on almost a daily basis. I have biopsy confirmed celiac.Her celiac panel included EMA- negative, Total Iga- adequate and TTG IGa and TTG IGg. Only her TTG IGG came back positive.

We deceided to biopsy to try and get more information. Unfortunately the chief pediatric gastro only took two biopsies from the duodenum. Pathologist report says "no significant histopathology". They did find her to be low in lactase(lactose intolerance) and glucoamylase(enzyme that breaks down starches). My understanding is that these enzymes are produced from the villi in the small intestine. Daughter is still in pain despite a month on amitriptyline and and anti spasmadic. Now we are starting Ultram which is just a pain pill. My preference is not to drug her into oblivion. Follow up appointment is next week with GI. Should I request more testing? Push for a Dr sanctioned gluten free trail? Dr. 's recommendation may be the only thing that gets her Dad to comply. Thanks in advance for any suggestions.

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nvsmom Community Regular
nvsmom
Posted

You might want to push for deaminated gliadin peptide testing - the DGP IgA and DGP IgG are better at picking up cases of celiac in very young children and are often the first tests to become positive. It might show positive... You could also try the older AGA IgA and AGA IgG (anti-gliadin antibodies) which are less specific and sensitive but could help you with a diagnosis.

 

She might have to be classified as Non-celiac Gluten Intolerance (NCGI). If all tests are negative, and you need a diagnosis for her other caregivers, that would certainly be your best bet.  Open Original Shared Link

 

It's a shame her father won't comply when it's his own child's health on the line.  :( Does he live with her or is it just visits? If it is visits, you might be able to send a cooler of food with her when she goes over there, and maybe gluten-free labelled jams and butters.  It's not ideal but it could make it easier for her.

 

If you are all in one home, I would suggest making the house gluten-free regardless of him. He can have gluten-free when he is out of the house if he can't responsibly comply with his daghter's health needs. If he is not there, make your home gluten-free so it is easier for her when at home.

 

I hope going gluten-free (after testing is complete) helps her out. It's not right for young kids to be given bandaid pain relief and not have the root problem addressed... why do doctors think that is okay? :unsure:

 

Best wishes to you and your daughter.

gfgtj Newbie
gfgtj
Posted
  • Author

Thanks for the advice and the sympathy ( I guess it was a little bit of a rant):)

Forgot to mention that I have two copies of HLA-DQ8, so she has a least one of the celiac genes.

She goes to her Dad's some weekends and longer periods over the summer. The cooler might help on the weekends and she is old enough to read label at least. She seems willing to try anything including going gluten free to get some relief so that's where I'm leaning. Just hope I can get the doctor to agree or reccomend at least a trial to help to get her Dad on board.

nvsmom Community Regular
nvsmom
Posted

Rant away. :D. We've all done it a few times. Lol. Good luck!

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