Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

What Tests Should Be Done?
0

4 posts in this topic

I've had all my children tested for Celiac, after I was officially diagnosed in December. They all came back negative, but my ped only did one test (and I cannot remember which one it was). I thought I read somewhere that there are several blood tests to confirm Celiac because you can possibly test negative, but still have it. I'm having 7 year old's thyroid checked next week and wanted to make sure I asked for additional celiac tests (if there are more than one). He still exhibits the signs and did much better on a gluten-free diet (that we started 2 months ago).

0

Share this post


Link to post
Share on other sites


Ads by Google:

If only one test is done it is usually the tTG IgA.  However, this test should be run in conjunction with a Total Serum IgA to ensure that the person being tested produces normal quantities of IgA antibodies.  If their IgA quantity is insufficient the test is invalid and IgG testing should be done.  If you are looking for the most sensitive celiac test, and the most specific for celiac, that would be the DGP, IgA and IgG.  It will pick up problems with gluten earlier than the tTG (which requires damage to have already occurred in the small intestine and which, though strongly indicative of celiac, can be caused by other problems).  The older AGA IgA and IgG are two other celiac tests, and the EMA (Endomysial Antibodies) is normally run if the tTG is positive (and is also very celiac specific).  None of these test results should be trusted as negative without testing the Total Serum IgA, an insufficiency of which is most often seen in celiacs.

0

Share this post


Link to post
Share on other sites

My kids tested negative too but two of them have problems with gluten so I removed it from their diet. My thinking is that it might be early in the disese for them so that they don't have intestinal damage that is causing a measureable autoimmune response, or they have non-celiac gluten intolerance - either way eating gluten-free works for them.

 

If the gluten-free diet is working for your kids, you might want to continue it for them. NCGI can cause real health problems (just no intestinal damage) if not treated so I thought it's probably better safe than sorry.

 

I've had thyroid problems in the past so my advice would be that when you see the doctor to have his thyroid checked, make sure you get copies of all blood tests. Doctors have a tendency to call thyroid labs normal if within range in spite of any symptoms the patient has... they did that to me and are doing it to my son. 

 

Anyway, don't let the doctors just request a TSH (which is a pituitary test really) but request a full thyroid work-up:

  • TSH (should be near a 1)
  • free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range)
  • TPO Ab (should be very low, near a zero)

Sometimes doctors will simply request T4 or T3 which often results in a Total T4 or Total T3 test being done, these tests are not as helpful or give a really good idea of what is going on in the blood. The FT3 and FT4 show what is in the blood and are more accurate.

 

Sorry about the aside, I just get frustrated with doctors when it comes to the thyroid.  Best wishes.

0

Share this post


Link to post
Share on other sites

My kids tested negative too but two of them have problems with gluten so I removed it from their diet. My thinking is that it might be early in the disese for them so that they don't have intestinal damage that is causing a measureable autoimmune response, or they have non-celiac gluten intolerance - either way eating gluten-free works for them.

 

If the gluten-free diet is working for your kids, you might want to continue it for them. NCGI can cause real health problems (just no intestinal damage) if not treated so I thought it's probably better safe than sorry.

 

I've had thyroid problems in the past so my advice would be that when you see the doctor to have his thyroid checked, make sure you get copies of all blood tests. Doctors have a tendency to call thyroid labs normal if within range in spite of any symptoms the patient has... they did that to me and are doing it to my son. 

 

Anyway, don't let the doctors just request a TSH (which is a pituitary test really) but request a full thyroid work-up:

  • TSH (should be near a 1)
  • free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range)
  • TPO Ab (should be very low, near a zero)

Sometimes doctors will simply request T4 or T3 which often results in a Total T4 or Total T3 test being done, these tests are not as helpful or give a really good idea of what is going on in the blood. The FT3 and FT4 show what is in the blood and are more accurate.

 

Sorry about the aside, I just get frustrated with doctors when it comes to the thyroid.  Best wishes.

I'm actually planning on getting his thyroid checked also. His TSH was checked recently because he was diagnosed with ADHD. It was 0.851 with the range being 0.3-6.0 as normal. I have Hashimoto's so I plan to get his antibodies checked. I'm wondering if he might be hyperthyroid since he is very underweight, cannot sleep, and very emotional (I read on that theses are common symptoms, as well as ADHD-type symptoms). I'm just trying to rule everything out before we give him meds for ADHD.

 

Thanks for the responses. I need to make a list to give his ped of the labs I want done. (Good thing I used to work there, so I can pretty much tell them what I want lol ).

0

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
0

  • Forum Statistics

    • Total Topics
      103,895
    • Total Posts
      919,535
  • Topics

  • Posts

    • Test Results
      Update: I am about at my wit's end. I won't be able to see my new doctor until July 17 to get a referral to a GI doctor, so I continue to eat gluten and the effects continue to worsen. Today my boss, whom I have been working with for 12 years, and I had a meeting where he said he's noticed a change in many things, such as speech, not articulating well, forgetfulness, and other things that are affecting my work product. I finally told him I know there is something wrong with me medically and I've been trying to get to the doctor to no avail. I recall those four weeks early in the year when I tried out gluten free and was beginning to feel much better- more present, more sharp, and then went back on gluten in preparation for the blood test.  I just don't think I can do this gluten thing any longer and am thinking of going cold-turkey gluten free.  I'm 54 years old, am beginning not to care about a diagnosis because I just want to feel better and be able to do what I need to do. Because of how I felt going off of gluten earlier in the year, and eating gluten free when I was on the McDougall plan years ago, and how I feel while doing this gluten challenge, I am pretty convinced that my issue is gluten.  Any words of encouragement would be welcome.  If you've done gluten free and never looked back, tell me about it. 
    • Gardasil
      "I got this vaccination in 2009 when I was 20 and it completely altered my life. Made my celiac disease so much worse, sleep 15-18 hours a day, SIBO, it has completely altered my life since getting this vaccination. My doctor has two twin girls about my age and they both have digestion problems after receiving gardasil Thank you I have a young daughter and have wondered this exact question posed by the poster and your response has given me great pause about this issue which may come up in years to come. I am sorry to hear this wreak havoc on your life, but simultaneously thank you for sharing this detail to help those of us that have likely been decades misdiagnosed celiacs now raising children. Thank you.
    • Gluten does WHAT to the brain?
      "Wondering what kind of life my brother could have had - if  he had celiac - constantly haunts me" My sympathies that is just tragic, as this story is.  I hope you are at peace knowing you are aware of your celiac and help so many lost, scared, and confused celiacs here. It can never bring back your brother but I hope it can give soften some of what you feel that was/is beyond your control. His suffering and your loss has made you a better advocate to yourself and in your work helping us. I don't like my body or my  brain on gluten either. I do fear that people overlook the toll inflammation takes on the brain. It likely may explain decades of mental illness that was brain based inflammation unknown until changes in technology advancement catch up. However consuming gluten to study how one enters psychosis may not be the best method. Do no harm.  
    • Gardasil
      I got this vaccination in 2009 when I was 20 and it completely altered my life. Made my celiac disease so much worse, sleep 15-18 hours a day, SIBO, it has completely altered my life since getting this vaccination. My doctor has two twin girls about my age and they both have digestion problems after receiving gardasil
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,941
    • Most Online
      1,763

    Newest Member
    dl2z12
    Joined