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
WinterSong
Posted

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
nvsmom
Posted

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
Lisa
Posted

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

psawyer Proficient
psawyer
Posted

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

Good advice.

love2travel Mentor
love2travel
Posted

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
GottaSki
Posted

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
WinterSong
Posted
  • Author

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
nvsmom
Posted

Good luck.  :)

Mom-of-Two Contributor
Mom-of-Two
Posted

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
WinterSong
Posted
  • Author

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,076
    • Most Online (within 30 mins)
      7,748
    Deb baker
    Newest Member
    Deb baker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.