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

Blood Test Still + After 10 Months Gf?!?!

jen-schall

Recommended Posts

jen-schall Rookie
jen-schall
Posted

:( hi, I was diagnosed in December after being gluten-free one month. I continued to be gluten-free and had antibody blood tests re-done in the spring which showed, reportedly, that I was still getting "significant" gluten. I did find out there was barley and oats in a nutrition bar that I had thought was okay previously (because I looked at it so early on in the diagnosis and didn't recheck!)

since that major bummer, I have been SO vigilant. now it is 10 months that I have been gluten-free and my antibody tests still show up as positive! ! !

has this happened to anyone else?

what do I do? I am not eating any gluten- and I know ALL about the hidden places, and I am not taking any risks, and even my make-up is gluten-free, and I don't know what more I can do.

someone please help if you can! I can handle being celiac and going gluten-free but if it never actually gets *better* (although I haven't felt sick at all!!) then what do I do???

:angry: Jen

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

Celiac.com Sponsor (A8-M):


FreyaUSA Contributor
FreyaUSA
Posted

I don't know if your doctor has suggested this (are you seeing a nutritionist who is aware of celiac disease?), try documenting every single thing you put in your mouth (including brand names.) From toothpaste to water. Then, have either your nutritionist look at it or post it somewhere so that others who are aware (here on the board? I'm new here so I don't know the procedures yet, but it might help. :) ) Or maybe do both things. Also, where do you work? This may sound silly, but if you work in or near a bakery, you could be inhaling your gluten. Imo, you are getting into it somehow, it just might take some time to figure out exactly how. (And, if you're getting into it unknowingly, chances are others are or will to. Maybe some company isn't documenting their ingredients like they should be. :o )

tarnalberry Community Regular
tarnalberry
Posted

Well... _how_ high? I mean, if they've gone down 50%, maybe you're body is just slow at healing on this one. If they've gone down 10%, maybe it's time to have the GI dig really deep into those "other reasons" to have a higher IgG that I keep hearing about but have never heard anything _specific_ about...

lovegrov Collaborator
lovegrov
Posted

What's still high? One of the tests is very slow to fall. After 14 months of being extremely careful one of mine, I think the Iga, was still one point above the line. My doctor said to continue being careful but that I was doing a good job.

richard

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    2. Ginger38
      - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry. But Developing s...
    3. Russ H
      - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      This is the test KelleyJo is referring to: Blood-Based T-Cell Diagnosis of Celiac Disease
    4. Russ H
      - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease. https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    5. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags

      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources. I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,375
    • Most Online (within 30 mins)
      7,748
    Sher Lee
    Newest Member
    Sher Lee
    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)

  • Upcoming Events

  • Posts

    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      Coeliac UK Research Conference 2025

      By Russ H · Posted

      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Basic metabolic panel results - more flags

      By Rejoicephd · Posted

      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.