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Parents Begging Not To Do Biopsy On Dd

LauraW

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wonkabar Contributor
wonkabar
Posted
Oh, dear--here you are asking for help, and we are all giving you stressful answers! :blink:

YIKES!! :o I think you're right! I apologize, Laura, if I caused you any additional stress. I don't think it was anyone's intentions. Controlling and meddling "parental units" on both sides can certainly bring out the best of us. Good luck today! :):):):):):)

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eKatherine Apprentice
eKatherine
Posted

If I was your mom, I'd be begging you not to put the kid through a biopsy and just go gluten-free. Of course, I'm opposed to unnecessary medical intervention - the least invasive is the best, in my opinion.

chrissy Collaborator
chrissy
Posted

laura---this is totally opposite from what i posted to you before----but i found something on the internet yesterday that agreed with what your doctor said about your daughter possibly being celiac even though she was only basing it on the antigliadin test. i tried to find it again so i could post it for you-----but i couldn't!! i'm sorry. it mentioned that antigliadin could suggest celiac in a child under 2 because they may not produce TTg or EMA antibodies yet. i'l try again later to see if i can find it-----it might help for your mother to read it.

shai76 Explorer
shai76
Posted
I need help desperately!!! To give you a brief description of what's going on in our life. My 2 year old DD had positive bloodwork done for Celiac. She is constipated 24/7 (just started her on Miralax), only weighs 21 lbs and goes through not eating spurts. I assumed she had my stomach since I battle constiptation and have for years, however, I have had bloodwork done, and mine came back positive for Celiac. Iga 5 and IGG 17 were my results. Her ped GI has scheduled a biopsy for this Thursday and I am quite scared about this. Obviously, the risks are low, however, there are always risks under anesthesia. The dr believes she does have celiac but obviously won't know unless biopsy is done. She screams bloody murder at her drs appts and this will definitely throw her over the edge. (and me too) I hear the IV is the worst part. My parents are pleading with me to not go through with this and to get more opinions. They think I should give it 6 months or so (keep in mind I am 8 months pregnant and I am weeks away from having my second child) since she is not "techinically" sick. Why should you change her diet if she is not having diarrhea or vomiting and she is too young to be put under (keep in mind she has ear tubes...)...Oh, I have a friend that works as a NP at an adult gastro office and she ran into my mom today at the mall with my daughter and told my mom she doesn't look frail and something about her skin not looking like a celiac. She also said my results couldn't be that accurate b/c they only tested IGG and IGa, not ttg... Plus my mothers friends say I am "NUTS" for doing this to my daughter. WHAT TO DO?????????????????? :(

DD results Iga antigliagin 4

IGg 33

immunoglobin Iga 49

I was worried about having the scope done on my son too because he freaks out during even simle medical exams, but it wasn't bad at all. He went in and played with the toys and other kids. Then the doctor came out and let him ride in a little car back to the operation room where they gave him a sedative before putting in the iv. He was done in ten minutes and awake within 15. He was a little grumpy, but they kept him distracted with tv, books and toys. He got to drink stuff and then they took out the iv, and after a little while we went home. It was very fast, and so much easier than I thought it would be. Seriously, it would be better to know for sure. Not just for the doctors, but for her future as well so that she doesn't have to go through the gluten challenge again, and to be sure that this is what is wrong. Good luck!

TCA Contributor
TCA
Posted
laura---this is totally opposite from what i posted to you before----but i found something on the internet yesterday that agreed with what your doctor said about your daughter possibly being celiac even though she was only basing it on the antigliadin test. i tried to find it again so i could post it for you-----but i couldn't!! i'm sorry. it mentioned that antigliadin could suggest celiac in a child under 2 because they may not produce TTg or EMA antibodies yet. i'l try again later to see if i can find it-----it might help for your mother to read it.

Chrissy,

I would be very interested in that article too since my son's IgA was elevated, but the TtG wasn't. Thanks!

LauraW Rookie
LauraW
Posted
  • Author
I was worried about having the scope done on my son too because he freaks out during even simle medical exams, but it wasn't bad at all. He went in and played with the toys and other kids. Then the doctor came out and let him ride in a little car back to the operation room where they gave him a sedative before putting in the iv. He was done in ten minutes and awake within 15. He was a little grumpy, but they kept him distracted with tv, books and toys. He got to drink stuff and then they took out the iv, and after a little while we went home. It was very fast, and so much easier than I thought it would be. Seriously, it would be better to know for sure. Not just for the doctors, but for her future as well so that she doesn't have to go through the gluten challenge again, and to be sure that this is what is wrong. Good luck!

Well, we did the biopsy yesterday and well... it sucked big time, but I will put a new post out there to update everyone on what happened. They were not equipped to mask her first, so they put the I.V. in her awake (not pleasant). Check out the new post for the latest. THanks!!!!

Laura

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

As long as she's okay now, that's the important part.

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GraceA Newbie
GraceA
Posted
I agree with Nini, especially since you are expecting. I would go gluten-free immediately to make sure the baby is getting the nutrients it needs. I went gluten-free thinking I didn't have a problem with gluten, but knowing my daughter did and since I was nursing her I was 100% gluten-free. I had so many improvements in my health that I"m not going back on gluten to get tested. It's just not worth it to have a diagnosis that might prohibit me from getting insurance. Just my opinion, but you will have to decide for yourself. I hope you all feel better soon!

I've been there, TCA! I love this board!

My 7 yo son is gluten intolerant. He was so ill that he nursed until he was nearly 3. I went on the diet as soon as a doctor told me I had to--two doctors told me not to at first, but he wasn't getting well!

My daughter just turned 1, and I have been gluten free this past year, just in case she has celiac as well. Now I'm eating wheat and letting her eat it to see what happens. But I feel like crap, so I'm going back off it. Gas, diarrhea...and the gluten intolerance was from my DH's side of the family!

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