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Celiac Disease Pre-Diagnosis, Testing & Symptoms

If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.


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  • 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.)
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