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
      104,654
    • Total Posts
      921,619
  • Topics

  • Posts

    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
    • Thanks cyclinglady! I will!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,654
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined