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

Getting Tested Again?


WinterSong

Recommended Posts

WinterSong Community Regular

Hi, 

 

I was diagnosed with Celiac in March 2011. By November of 2012 I finally had gotten my tTg level back down to normal. I've been doing really well since and haven't gotten sick at all. Feeling great.

 

I'm going to lose my current health insurance at the end of September and need to decide if I want to go in for a check up blood test to make sure that gluten isn't sneaking in without me knowing.

 

How often do you get your levels checked if at all? My doctor didn't say anything other than congratulations during our last conversation. 

 

Thanks!

 

Jessica


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

My GP won't do any sort of blood check test. Period. I have started seeing another ( nutrition based) doctor and he seems to want to test every two months. I would say that the ideal is every year until you are sure you are healed (negative tests and no symptoms) and then only when you suspect a problem after that.

Congrats inherently negative levels! :D

Lisa Mentor

Jessica, I would go for the follow up while you have insurance. ;)

psawyer Proficient

Jessica, I would go for the follow up while you have insurance. ;)

Good advice.

love2travel Mentor

I get mine done every six months. Probably will cut back to annual now that I was diagnosed over two years ago. I agree - definitely go while you still have insurance.

GottaSki Mentor

I was every six months for the first two years until both my celiac panel and nutrients were all good.  Now I get them all annually.

 

I agree with Lisa and Peter -- get them done while you have insurance -- along with any other tests you can think of. 

 

We remain insured but this past few years our coverage has increased at a ridiculous rate which has required our family to change to a catastrophic policy until I am back to work full time.

WinterSong Community Regular

Thanks for the advice! Even though my last test was negative, I'm going to schedule another appointment while I can to make sure that I'm still on track even though I haven't gotten sick :)


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

Good luck.  :)

Mom-of-Two Contributor

First check 6 months after, since those were normal, both myself and my 8 year old only have to go yearly. Forever, according to my GI!

She also checks my iron still, as I'm having trouble getting that up. My 8 year old had normal vitamin levels after diet change, so her pediatrician doesn't need to monitor her nutrients regularly.

  • 4 weeks later...
WinterSong Community Regular

Thanks to everyone who replied. Just got my test results back and my ttg is still normal. Whoop!

Archived

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

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

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
×
×
  • 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.