Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):
    GliadinX

    Celiac.com Sponsor (A1-M):
    GliadinX

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Parents Begging Not To Do Biopsy On Dd

LauraW

Recommended Posts

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! :):):):):):)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Holidaily Brewing Co.

Celiac.com Sponsor (A8-M):
Tierra Farm

  • Replies 57
  • Created
  • Last Reply
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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Daura Damm
GliadinX

Celiac.com Sponsor (A8-M):
Little Northern Bakehouse

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse


  • Member Statistics

    • Total Members
      130,016
    • Most Online (within 30 mins)
      7,748
    Oh My Paws
    Newest Member
    Oh My Paws
    Joined
  • Celiac.com Sponsor (A20):
    GliadinX

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):
    GliadinX


  • Celiac.com Sponsor (A21):
    Lakefront Brewery


  • Upcoming Events

  • Posts

    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      So eight days in a row of gluten on top of gluten on top of gluten, I just had to resort to the EpiPen. I wish I could post a picture because you wouldn’t believe how enormous my gut is! It makes my head look like a pinhead.Ahhhgggsahhhhh!!!! I have discovered that I have to read the ingredients when I use a product up that I’ve been able to use without getting a reaction, because they can change the ingredients and bam my toothpaste now has gluten!!! my doctor told me gluten free means it has 20 ppm which someone with a severe a celiac as I’ve got that thing there kills me. I try to find certified gluten-free in everything. I can’t eat any oats unless it’s Bob’s red mill certified gluten-free. Good luck everybody this autoimmune disease is wicked wicked
    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      I have been using a little bit of Lubriderm when I wash my hands because it’s the lotion offered at a place I frequent once a week. Assuming it was gluten-free I bought a bottle. I couldn’t figure out why I was getting gluten EVERY night. I use a little of the lotion in the morning on my neck, with no reaction, but at night, I use it on my arms and legs and face and get gluten gut pretty bad. After eight nights of having to have diphenhydramine injections for severe gluten, I googled “is Lubriderm gluten-free” and it led me to this forum. I am going to go back to olive oil as I have been gut sick sooooooo bad with a huge gut and pain eight days in a row now. Sick of feeling sick.
    • ShariW
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By ShariW · Posted

      These look great!  I follow several people who frequently post gluten-free recipes online (plus they sell their cookbooks). "Gluten Free on a Shoestring" and "Erin's Meaningful Eats>"
    • Scott Adams
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Scott Adams · Posted

      Sounds great, we also have lots of recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/
    • ShariW
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By ShariW · Posted

      When I had to go gluten-free, the rest of my family still ate gluten. They still eat regular bread products and crackers, but there are no other gluten-containing foods in the house. I bought a separate toaster that is only used for gluten-free products, and thoroughly cleaned all cookware, dishes and surfaces. We do have to be very careful with cross-contact, for instance when someone else is making a sandwich with wheat bread. Then I went through my cupboards and pantry, I set aside everything else with gluten and gave it away - flour and baking mixes, pasta, etc. So when I cook any recipe that calls for flour (perhaps for thickening) or bread crumbs like Panko, I only use gluten-free. My cupboard now holds gluten-free baking flour, tapioca flour, rice flour, almond flour, gluten-free oats, gluten-free grits, gluten-free cornmeal, and a few gluten-free baking mixes for occasional use. On the odd occasion when we have pasta, it is gluten-free - nobody notices the difference in the "new" lasagna. I have found several good recipes that are gluten-free and everyone loves them. A family favorite is the Tarta de Santiago, a naturally gluten-free treat made with almond flour.
×
×
  • Create New...