Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

15 Months gluten-free Ttg Still Slightly Elevated

2 posts in this topic

My 9 year old was diagnosed with celiac in March of 2012 by blood tests and a positive biopsy.  We put him on a gluten-free diet the day he had his biopsy done.  His original ttg was 168.  After 6 months gluten-free it went down to 31.  We got his blood results back today (15 months after original diagnosis, 8 months after the last blood test) and his ttg was 23. (0-19 is considered normal)


The dr. was pleased with this and said we can basically consider him to be in the normal range since he is so close and is pretty much symptom free at this point.  He is growing great - is in the 75% for height for his age and I'm pretty pleased with his overall health but I thought his numbers would be better by this point.  I've read through the forums a little and I'm seeing posts that ttg isn't the right test for dietary compliance?  That is the only follow up the dr. ordered this time - he did not order the full panel.  Should he have done something different?  Should I be satisfied with the 23 since that is only slightly over normal?  Can I ever expect him to be in the normal range?  The dr. said he doesn't need to be retested for a year.


Thanks for reading and for any insight you can give.  His numbers went down so dramatically in the first 6 months that I guess I was just expecting another 8 months to give him a normal reading.




Share this post

Link to post
Share on other sites

Ads by Google:

They should also have done the DGP as that is the one that tests for dietary compliance....I'm the one that is such a pain in the butt about that!  If you couple that with the tTg, then you can see if his slightly elevated tTg is from gluten ingestion or it's just taking a little time to get into the normal range.  My tTg was around 200 when diagnosed but was slightly elevated for awhile, like your son's, because I had other autoimmune issues going on.  These can keep it elevated also. I am not saying that's the case with your son but it was with me.


I would think if he is growing, happy, and asymptomatic, you must be doing something right.  However, I would want that number (tTg) to be in the lower normal range myself.  If it were me, I would ask for the DGP to see where that is as most Celiac experts say that number should be as close to zero as possible.  It is not meant to be at zero but the lower you go, the better the compliance to the diet is.  Then I would ask for a re-test on the tTg in 6 months because it really can take awhile to normalize, especially when it's that high to begin with.  tTg wants to be in the lower end of normal but again, it is not meant to be zero...doesn't have to be. I would also keep track of how he is feeling with things like fatigue. If he were to develop another AI issue, the fatigue usually is a bigger symptom that will show first.  But don't worry about that now....he needs more time to heal.  It's only been a little over a year.


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member