Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac?


JASON

Recommended Posts

JASON Rookie

I have one sister who has celiac and I do. My other sister has been tested through lab work and came back normal. She has bloating, rash once in a while, constipation, headache, muscle ache, pains under the rib cage on right side, itchy shins, lumps on her head(like cysts); she also gets hot hands and feet sometimes. She has had her gall bladder removed. She has done the gluten challenge and felt a lot better. If the Drs. said she is fine; is she really fine even with our family history? Does anybody know what else this could be? How much could stress be involved in this?


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

There was an article in USA Today that even mentioned the false negative rate of the blood test. She could still have it. If she feels better off gluten and has a family history of it, I'd just call myself a celiac and go gluten-free. It's actually better than being diagnosed and having trouble with insurance down the line.

Nantzie Collaborator

I agree. She should go gluten-free. I had negative blood and biopsy and my GI symptoms and neuro issues (I had a hard time walking), and other various symptoms went away after going gluten-free. If celiac runs in the family, she should give the diet a real try because sometimes odd things are related to gluten, and everyone has different symptoms. I had IBS and body pain symptoms which went away after being strictly gluten-free (including avoiding cross contamination), also headaches, insomnia, anxiety/depression/irritability and fatigue. I'm also very sensitive to cross contamination.

My feeling is that anyone who thinks they may have a gluten-related issue, celiac or not, should just try being gluten-free for a while. You never know how it effects you until you try.

Nancy

tarnalberry Community Regular

she has one negative, and one positive - the diet test IS A VALID TEST! she could ignore what her body is telling her and feel crappy, or she could avoid gluten and feel better. :P but yes, false negatives do happen, particularly 'false inconclusives' or tests that are read far too conservatively and don't actually say negative, but the doctors read them that way. has she gotten the actual results, or just the interpretation that was 'negative'?

Guest nini

I agree she needs to be gluten-free. She's had a positive test, positive dietary response. That is THE most valid diagnostic test in my humble opinion. There is too high a rate of false negative test results and with genetic predisposition (you and other sister) and positive dietary response, that is more than enough to call it celiac and go gluten-free and start getting better. The tests are not perfect. Despite what the Medical profession continues to claim.

KaitiUSA Enthusiast

Yea, she should be gluten free. The body is the best test for celiac and she sounds like a celiac.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,739
    • Most Online (within 30 mins)
      7,748

    Chef7269
    Newest Member
    Chef7269
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      You are most welcome, Marie.  Thank you for getting in touch, because this sort of post will be seen by other parents who find themselves in this position, I am sure there are many.   And as I say, in the long run, I am sure your daughter will be sorry for what she said.  I remember having a go at my dear Mum when I was in my twenties about something and then apologising, saying, "I don't know how you put up with me."  I can't remember her exact words but it was something along the lines of, "I used to say things like to my Mum.  Now it's my turn [to be on the receiving end]!"    😂  Although it isn't very nice to be on the receiving end, it is good your daughter feels safe to say these things to you. We look forward to hearing from you again in due course.  
    • Wheatwacked
      Are You Confused About Your Celiac Disease Lab Results? Some people test negative but have a positive biopsy, others test positive but negative biopsy.  This is why it can take years and misdiagnosis of other diseases that Celiac Disease can mimic. The above link is a good read with real life examples. Something I find interesting is that in 1980 or so a new diagnosis was created, Non Celiac Gluten Sensitivity, only 10 years after Norman Borlaug won the Nobel Peace Prize for creating our modern wheat and the Green Revolution.    
    • trents
      @Steve-n-Portland, there is a difference in the requirements to use the label "Gluten Free" and the label "Certified Gluten Free". "Gluten Free" is governed by FDA regulations and has a ceiling of 20 ppm. "Certified Gluten Free" is a labeling convention used by the GFCO, an independent international third party certifying group that uses 10 ppm as its standard.
    • trents
      We have had numerous reports from forum participants experiencing gluten reactions from Trader Joe "gluten-free" products. It seems it's not a good place for the celiac/gluten sensitive community to shop.
    • Steve-n-Portland
      Also, a class action lawsuit was launched in 2024 against Trader Joe's re: their " gluten free" everything bagels. They tested at 269ppm. (Personally, I am not sure they will win. The FDA says that the *ingredients* have to be less than 20ppm for a company to label something "gluten-free."  In order to be certified as gluten-free by the GFCO, the *final product* needs to be less than 20ppm. That said, the lawsuit is arguing that most people read that label and assume the final product is safe for people with celiac. Thus, many people were made sick. And being sick can have costly consequences in regard to work or school, depending when one becomes ill.)
×
×
  • Create New...