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

How Long For Elevated Blood Levels Again?


PaigesMom

Recommended Posts

PaigesMom Newbie

Does anyone know how long it would take for positive bloodwork to appear again AFTER going OFF OF a gluten-free diet? My daughter had + bloodwork, a questionable biopsy, and went gluten-free for 5 months - went off of the diet in November and had more bloodwork done in the beginning of February - TOTALLY NORMAL results, well within the normal range. The dr.s are saying she might not have been off of the diet long enough? I thought that bloodwork would come back positive fairly quickly, am I wrong on that? Thank you.


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Rule of thumb is that three months would be long enough, but everybody reacts differently. Nobody can say how long it takes any given person to be positive again.

Why is she doing this. Did some sort of symptoms improvew while she was gluten-free? If so and if she had positive blood tests before and if the biopsy was even borderline (many celiac disease experts now consider the "questionable" biopsy a positive when combined with positive bloodwork), you're talking pretty much 100 percent she has celiac disease.

richard

PaigesMom Newbie

My daughter is only 4, and she has Down syndrome. It is extremely difficult to explain to her why she has to eat certain types of food, and it came down to the point where she was not eating at all and she was losing weight. We stumbled upon this in the Down syndrome heath protocols - they recommended a screening at age 4 and that's what came back positive. She had no other 'symptoms' - the pediatrician did bloodwork and her IGg/Ttg came back at a 98, they did the biopsy and the biopsy was negative. They told me to keep her on the diet but again, she was becoming sick, so they told me to take her off of it, considering the negative biopsy and they would do more bloodwork. They did the Celiac Genetic Test which showed the genetic marker (however 30% of the general population also has it - it's just a marker) and this time her Ttg/IGg came back as a 10!! They were going to rebiopsy her IF the bloodwork came back positive, but with a negative first biopsy and negative second bloodwork, no symptoms, picked up by chance on a regular health screening, they are now saying that the first set of bloodwork was wrong. I have read over and over again here how bloodwork is not reliable.

I'm not sure what to believe, if she has it or not.

whimsygirl Newbie

You know, I was coming into the message board just to ask this question. I have put the gluten back into my diet for 18 days and I'm feeling SOOOO sick from it. My Dr. admits to not knowing much about this and is learning as we go. She doesn't think the blood test should be done till maybe 4-6 weeks after adding the gluten back in, but don't you think that if it's making me feel so sick that it would show up in the blood tests. I'm getting discouraged and about ready to give up and skip the tests altogether and go gluten-free without the diagnosis!! :blink:

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,206
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.