Jump to content
  • 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):



    Celiac.com Sponsor (A1-M):


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

8 Y/o Daughter Positive Blood Test


BleuPhire

Recommended Posts

BleuPhire Newbie

Since Dahlia was 2 she has had constipation and bad gas. My husband says that both of us are always complaining of belly aches but I guess it's just normal to me. She was put on Mirilax at 2 and whenever I call the dr. about blood in her stool the nurse tells me to give her popcorn and apple juice.

Her belly was hurting every night for a while so I took her to another dr. in the same practice who seems to be into promoting a healthy diet. She gave Dahlia Mirilax (at an adult dose) again and said to take her off dairy and if she kept hurting we would do an xray. The Mirilax cramped her up and gave her D which the nurse said could be from it passing around a blockage.

I don't know how we came to this decision but we took her off dairy and gluten. I have attempted elimination in the past but never stuck with it. Her belly aches went away even though she still had C. Her demeanor and attitude improved and we noticed a "change" in her. We challenged it 1 week later and her belly aches came back but thought maybe it was behavioral. Took her off again, 1 week later we challenged it without telling her and her pain came back.

I brought her back to the dr. and asked for the blood test. The dr. said she didn't know what test to write up but she would look it up. The nurse gave us the papers and said she didn't know if she had to fast before and to call the lab. We glutened her up for 1 week. Tested Thurs morning, Monday the nurse called and said she is "highly gluten sensitive".

They referred us to a dietitian but won't to a GI specialist. I asked to test my 2y/o but we keep playing phone tag and I don't think they want to. Her stools are usually pretty loose but she eats a lot of beans.

My chiro said I probably am too so for the past few weeks I have been gluten-free. I don't have insurance but could get the blood work done through LabCorp or my chiro. I havne't decided yet.

When I told my mom, she said "Oh that must have been what was wrong with you at that age. I took you to the top specialists and all they could tell me was that I was a bad mom!"

I feel like I need a new pedi dr. Or need to be a little more stern with mine. Also, the cafeteria manager at Dahlia's elementary school didn't even know what gluten was. Then she said the gravy was okay because it comes from a packet, they don't make it! I set her straight.

Thanks for listening to my story. It feels good to share it with people who understand!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shacon-bacon Apprentice

Wow, so very happy that you have found out for sure!! She will start to feel so much better once the gluten is cut from her life :) I also have an 8 y/o daughter, we are in the midst of trying to figure out of she has it to.

Thank you for pressuring the doctors to do more and find whats wrong with your daughter! You should definately get the blood test too if you can!

celiac-mommy Collaborator

I have a 9y/o girl. She was diagnosed at age 4. We pack lunches every day and keep a snack box at school. If there's anything I can do to help on the day to day stuff, let me know, I'm a pro! :P

It's made a HUGE difference with both of my kids. Both are so healthy it's crazy--especially from where we came from...

BleuPhire Newbie

So, I took Dahlia to the dr. today and long story short: HER TEST RESULTS WERE NORMAL!!! The nurse thought they were high (9 and dr. said 11 is high). Total miscommunication!

Overall good visit though and now I know why I was having the problems of going to a GI and getting Mila tested.

Dr. said not to go by the results though if we are having a good outcome being off gluten. I feel better. Dahlia doesn't have belly aches. Am I just searching for a cure for all my problems?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.