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

When Did You Notice A Change


Minette

Recommended Posts

Minette Contributor

I know I'm probably being impatient, but I'm just curious. Sarah went gluten-free 10 days ago and I haven't noticed a single change in either her behavior or her health (from what we can see). I assume it's too soon for her to gain weight, but I was hoping she would at least have more energy, be a little less whiny, and have a better appetite.

I know some of it is personality and some may be due to external factors (i.e., not getting enough sleep) that have nothing to do with celiac. And she was never acutely miserable, so maybe the change will not be that dramatic anyway, if it ever comes. But I'm just wondering when it might be reasonable to hope to see some difference.


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



Celiac.com Sponsor (A8-M):



Mizzo Enthusiast

We saw reduced tummy pain in a few days but it took almost 2 months for all of her anxiety, mood swings , constipation etc.. to fully subside.

Every week my DD got a little better but really it took a few months for all of her daily problems to go away.

Mom2J112903 Newbie

We saw a gradual improvement over a YEAR. Now as soon as he injest gluten, it is within 12hrs we see the reaction starting.

MitziG Enthusiast

It was very, very gradual for my son. When he was dx with celiac, I thought going gluten-free would make an immediate difference, but it didn't. But, a year and a half later he is a different little boy. He is happier, better behaved and his sensory processing disorder is greatly improved. The tummy aches are few now, and no longer severe. About 7-8 months in before I could really see noticeable improvement. His antibodies took over a year to come down, and he had severe villi damage (Marsh 4) so I think healing was just a long road for him. He still has a few issues, but removing casein from his diet a few months ago seems to be the additional boost he needed to heal. Be patient. While some people see a night and day difference right away, I think for the majority it takes quite some time. I know for myself, I didn't feel noticeably better until around the 7 month mark either. Has Sarah been dx with celiac, or are you trying the diet to see if it helps her issues?

Minette Contributor

Has Sarah been dx with celiac, or are you trying the diet to see if it helps her issues?

She was officially diagnosed about two weeks ago after her scope. She had a "probable" celiac dx based on blood tests back in March, but it took us a while to get through the rest of the process.

Thanks for the replies!

MitziG Enthusiast

She apparently has significant damage then, and I would guess, like my son, you aren't going to see big results for awhile yet. The healing has to happen first! Don't be discouraged, it will happen!

Minette Contributor

Coincidentally, my husband just sent me her pathology report, which said "moderate to severe villus atrophy (modified Marsh type 3B)" in one spot and "severe to complete villus atrophy (modified Marsh type 3B-3C)" in another. So I guess it could be kind of a long road.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • 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.