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

Periodic Testing

redheadheather

Recommended Posts

redheadheather Explorer
redheadheather
Posted

I have a quick question regarding testing for DSs. DS#1 was tested for celiac (my grandmother and DH's grandmother both had it and my mother has it - my testing has come back negative two times) at age 7. I've been told that celiac can show up at any time and especially with the family history it might be a good idea to have DSs (now they are 7 and 9) tested every other year "in case". What are your thoughts?

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Well, it depends what kind of testing you are talking about. If you are talking about bloodwork, that's not so invasive, so you might learn something from it. But if you're talking endoscopy/biopsy, that IS invasive (therefore risky, no matter what they tell you--there IS a risk of reacting to the anesthesia an dying on the table, and the risk is higher for children), and it's kind of a crapshoot--villi damage is patchy, and often not easily visible.

Are your DSs showing any symptoms? Keep in mind, symptoms can be typical (intestinal issues) or less typical or at least, less often recognized. Asthma, eczema, learning issues, behavior issues, joint pain, "foggy brain," ADD, ADHD, diabetes 1 or 2, thyroid issues, and pretty much any autoimmune issue can be early warning signs. Villi damage might not occur until much, much later--if at all. (Some people with DH, which is an automatic diagnosis of celiac, DON'T have villi damage.)

If there are symptoms going on, I'd go for testing and then see if symptoms disappear on a gluten-free diet.

Of course, a gluten-free diet now wouldn't hurt them at all, even if they don't have any predisposition towards celiac.

Kibbie Contributor
Kibbie
Posted
I have a quick question regarding testing for DSs. DS#1 was tested for celiac (my grandmother and DH's grandmother both had it and my mother has it - my testing has come back negative two times) at age 7. I've been told that celiac can show up at any time and especially with the family history it might be a good idea to have DSs (now they are 7 and 9) tested every other year "in case". What are your thoughts?

Currently I'm 19 weeks pregnant and we have opted to have or next kid tested for the genes. This way we will know "if" periodic blood checks are needed or not. The Kimball genetics one is completely covered by our insurance you may want to check in to it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,328
    • Most Online (within 30 mins)
      7,748
    CGW
    Newest Member
    CGW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      Am I celiac or not?

      By trents · Posted

      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
    • trents
      Am I celiac or not?

      By trents · Posted

      Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.   
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help!
    • Scott Adams
      Am I celiac or not?

      By Scott Adams · Posted

      If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
×
×
  • Create New...