Hi So my one year old had a pos blood test (16 anything over 6 is pos) Her dr said its actually unusual for a baby to get a pos..im curious if anyone knows why..I should have asked but was in a state of shock so questions weren't coming to mind at the time. They are strongly recommending doing a biopsy...we have another apt before then so I will ask more questions but just curious as to what they look for and why do the biopsy if her blood work is pos? Also how is the biopsy done on such a small baby?
Baby Has To Have A Biospy?! Nervous!
Posted 14 June 2013 - 11:21 AM
It is hard to get a positive blood test from a small child because they have not been eating gluten for very long and they don't always make the antibodies in large enough quantities to get a positive test. I'm looking for a link to that info and will attach it here:
Posted 14 June 2013 - 04:44 PM
We got a second opinion and still waited to do the biopsy when we were going through it. I was so scared and uneasy about it.
Looking back, it was WAY harder on me and Dad than it was on kiddo It is hard and scary and that won't change if she's 1 or 21 I don't think.
Posted 14 June 2013 - 04:51 PM
Was just going to post about what Stephanie said.
This will be harder on you then her. Try to calm yourself and bring things she loves to be distracted. It will be over quickly and the information obtained is worth it -- IMHO
Hang in there Mom and Dad -- oh and get yourselves or any siblings a full celiac panel once things calm a bit -- Celiac Disease is genetic.
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/25/13 - MCAD
Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile
My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free
Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS
Get PROPERLY tested BEFORE REMOVING GLUTEN.
ALWAYS independently research health related information found on internet forums/blogs.
"LTES" a Gem
Posted 14 June 2013 - 04:57 PM
Schedule the procedure for the first one in the morning. She will be hungry when she wakes up and you don't want to have to wait until noon with a hungry baby.
P.S. she is sooooo adorable!
Posted 14 June 2013 - 06:01 PM
My personal opinion and nit a medical one, but just as a.mom with a newly diagnosed baby too is that it is good to get it done and not need to do a gluten challenge down the road if there is any confusion and questions later... We had negative blood work but a positive biopsy and I must admit even 3 months later my mind still makes me think "what if it was wrong" so I am glad to have the biopsy results personally to be sure and keep us all committed to the gluten free life! But man have we seen good improvement in her! Wouldn't change back for anything now... Still struggling with her but she is so much happier and healthier already! I hope your daughter soon will be too!
And I agree that the earlier in the day the better so they don't keep her hungry for long!
Posted 15 June 2013 - 04:09 AM
Thank you so much everyone Im gathering a list of questions to bring with me to the appt...Im happy this is being caught so early in her life so it wont be so hard on :/ Im breastfeeding still so I also have to go gluten free (after the test) so im hoping its not going to be too hard either...thank you all so much
Posted 15 June 2013 - 06:21 AM
It has been standard procedure to do the patients by age. The youngest ones first.
Remember the biopsy can rule out other issues too. It will give a baseline of any damage to be healed.
Like most have said, it seems harder on the parents. Keeping your little one "resting" after the procedure may be a challenge.
Posted 16 June 2013 - 10:35 AM
I'm glad they did the endoscopy, even though her tTG-IgA was over 16x the positive value, and her DGP tests were very solidly positive too. I think it's best to get all the testing done now so that we never have to go back and do a gluten challenge later.
If you can get the endoscopy done at a children's hospital, that's the best! Their extensive experience with little kids was a huge benefit. I wish all nurses had that kind of training!
Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.
Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.
Posted 17 June 2013 - 03:33 AM
Thank you everyone!! She goes for her weight check today..nervous I hope she has gained some weight! If not her pedi will try and push up her GI apt which isn't until July 3rd its refreshing to read your stories and know we aren't alone in all of this! Im also going to push the pedi orders tests for us all today because we will all be going gluten free after her biopsy!
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