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 Does Dd Need To Be Glutened Before Blood Test?


Hopefulmama

Recommended Posts

Hopefulmama Apprentice

DD who is 2.5 years old has been off of gluten for 1.5 months. She has shown signs of improvement on the diet. That is enough for me, but not for DH. So we decided to get the blood test done. I know that it is not always accurate. How long should she be back on gluten to get the most accurate results? I forgot to ask her ped. today. I will call her tomorrow, but thought I would ask here also. Her ped. said that there are many false positives to the test, but not many false negatives. Is that true? Thank you for any and all help and input.


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



Celiac.com Sponsor (A8-M):



HAK1031 Enthusiast

other way around...many false negatives (especially in kids) few false positives. Unfortunately pediatricians (and even gastroenterologists often don't know a whole lot about celiac). Please, PLEASE don't put her back on gluten. I speak from experience, it is absolutely miserable. Is it really that important to your DH that he must make your daughter so awfully sick? And it's a long time that you need to go back too, at least 6 weeks. While it is vital that your DH be on board with the diet, your daughter's welfare should come first.

lizard00 Enthusiast

I couldn't agree more with the previous post. To even hope for a valid blood test, you are looking, like HAK said, at LEAST 6 weeks, but in reality, closer to 2.5 to 3 months. And what would happen if her test came back neg? Would your husband throw away the dietary response and put her back on gluten? Do you think he would would go for something like Enterolab, which doesn't base their results on IgA? The problem with IgA based tests is that children are notorious for producing low amounts of IgA, which then skews every IgA based test. Enterolab does stool testing, and you do not have to be consuming gluten to get an answer. They also do genetic testing. I have never used them, but many on here have, and I'm sure could give you some advice. I hear some insurances even pay for it. Always a bonus :D

Ursa Major Collaborator

Those blood tests are notoriously unreliable in children under six at the best of times. But with your daughter having been on the gluten-free diet for that long, she has probably completely healed by now, since children heal very fast.

What a terrible idea to destroy her villi again and make her possibly deathly ill, just to confirm what you already know!

From what I hear she would have to be eating the equivalent of 4 slices of bread a day for at least three to six months to MAYBE get a positive test result. It might take up to a year to do enough damage to get a positive (and even then it may not happen, because she is so young).

I agree with trying the Enterolab testing instead. Their tests are accurate up to a year after starting the gluten-free diet and will give you the answers you need to convince your husband.

nikky Contributor

dont put her back on gluten just to prove what you know. A mothers instinct is rarely wrong. If your DH cant stand putting her on the diet without tests go with entrolab. She would need to be on gluten for about 6 months with the other tests .. way too long in my opinion.. and you still may not get a positive result. IMO dietry response should be enough in the under 6's when the tests are often false negative.. and theres no such thing as a false positive in celiac disease.

I would keep her gluten-free... if, when shes older she feels she wants an official diagnosis then she can get tests ... just make her aware of what gluten will do to her.

Owen'sMom Rookie

I agree with the other posters. I would not put her back on gluten. We just went through this last year with my son. He was on gluten for a good 7 months and yet we got all negative results, even though he had many symptoms return after he was gluten free before. I wouldn't put him through this again, we did Enterolab testing and it came back positive for gluten, soy and casein. We also did the genetic testing and he has both celiac genes.

He is now gluten free again for the past 4 months again and doing better then ever. He has gained a total of 2.5 lbs in that time and grew about 1.5 inches.

I also suggest to go with enterolab for testing as you don't have to put her back on gluten again.

Hopefulmama Apprentice

Thank you all for your help. We have decided not to have DD tested. I think her dr. while good intentioned is very poorly informed. DH and I initially agreed not to have her tested-just to do the diet. She seems to be breaking out in a lot of rashes, so we thought maybe she had additional allergies. That is why we took her to the ped. in the first place. I think the skin problems are gluten related. She doesn't think so and wanted to do the test first. So that is why DH thought we should get her tested. After reading your comments here and doing more research, I think we have made the right decision. It stinks how you have to be your own dr. You pay your dr. good money and they give you false info. Oh well. At least there are great resources like celiac.com! Thanks again everyone!


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
      133,202
    • Most Online (within 30 mins)
      7,748

    Nana Susie
    Newest Member
    Nana Susie
    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)

  • 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.