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What Now? Results Of Endoscopy For Dd
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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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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.  http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

 

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.

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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.

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

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    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
    • I am so sorry for your suffering.  Your story drives home the point that having Celiac Disease drives us all to do our own research and try to find a doc to help--if we are lucky. I wish you a speedy recovery and my most earnest wish that you are NEVER cross-contaminated again! You are a real trooper (little comfort, I know).  Wish I could do more.
    • Tell us how it acts please. Just looking at pictures doesn't give much info. It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be done and it's NOT ON a lesion so make sure they don't pull that little number on you. They work for YOU, not the other way around. Make them prove it isn't dh by doing a biopsy the correct way. Do NOT take any oral steroids or get steroid shots within 2 months prior. You're going to have to be extremely firm with them but don't let them deter you from the course. Challenge them to prove what it isn't because they can't prove it's contact dermatitis.
    • Karen is right.  Do the research.  Have you been tested for celiac disease? Here is more info..... http://www.cureceliacdisease.org/screening/
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