Celiac testing for daughter with Type 1 Diabetes and Hashimoto's

[andreanoel]

My 9 year old daughter has had type 1 diabetes(t1d) for about two years, and was dx with Hashimoto's(hypothyroidism)earlier this year. She had an appointment with her endocrinologist last week, and had blood work done to check her thyroid levels and screen for celiac. She has no obvious symptoms, it's just done as a routine screening, since celiac is dx more often with people with t1d.  Last year her ttg was 3, this year it's 154! She's having a biopsy in a week or so, and I know you can have false positives (I've heard that's more likely if you have t1d), but does anyone know how likely a false positive is? Does it matter how high her ttg is? Thanks!

[cyclinglady]

Welcome!  

 

My TTG tests were negative.  I tested positive on another celiac test -- the DGP yet I had moderate to severe intestinal damage.  I also was only anemic at the time of my DX.  No tummy issues.  Your daughter has a positive on the TTG and that catches about 95% of all celiacs.  She probably has it.  ?. Make sure they take 4 to six biopsy samples at the recommended locations.  You can check the American GI Association for those locations.  You could also request the full celiac panel.  Talk to your doctor about that.  Here is the list:

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

get first-degree relatives tested if you are diagnosed.  

 

VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  

 

(Source: NVSMOM -- ?)

 

 

My daughter tested negative so far.  She will be tested every two years even  if she is symptom free.  .While I would not want her to have celiac disease, like me and her Dad, at least she might avoid the long term damage  we have sustained from being undiagnosed for so long.  It is great that your doctor has been running the celiac test on your daughter!  

I hope this helps.  

 

[kareng]

  Open Original Shared Link

 

 

[nvsmom]

Wow.  She's lucky that you are so well educated when it comes to autoimmune diseases.  You're saving her a life lived without treatment, and the possible complications that would come with that.

A positive of 154 is almost certainly celiac disease.  False positive in the tTG IgA only occur about 5% of the time; that test is quite specific for celiac disease.  You are correct that false positives can be caused by T1D and hashimoto's (also crohn's. colitis, NAFLDm and a serious infection like lyme), but those false negatives are always pretty weak positives.  What was her normal range?  0-20?  If she was having a false positive, her tTG IgA would have been something like a 21 or 22, and not almost 8X the upper normal limit.  Her result is quite high.

Look at the diagnosis guidelines the World Gastroenterology Organisation Celiac Guidelines: Open Original Shared Link You can see the tTG IgA is a good test.

I too have hashi's, and my tTG IgA was very high at first too.  It came closer to normal within 6 months (a 34 or so) and was down to 21 or 22 by 9 months gluten-free.  At 2 years gluten-free it was down to a 4.  I'm not sure if the hashi's helped keep my tTG IgA elevated a bit longer than average or not, but my guess is that it contributed a bit.  The main thing to note (for me) is that even with hashi's, my tTG IgA was back to normal within 2 years.

As an aside, some people with celiac disease and hashi's find that going gluten-free could reduce their need for thyroid replacement meds.  That will be something to watch out for when she does go gluten-free.

You should request the other tests that cycling lady mentioned be done when she has the biopsy.  Chances are she'll end up with another positive.  If all future tests are negative though, she probably still has celiac disease; it's just newly developed though so it may not show up yet.  The same goes for the biopsy; it can have up to a 20% false negative rate.  Future negative tests do not mean she does not have celiac disease, just that the results do not support the diagnosis. A negative does not cancel out a positive.

Do not have her go gluten-free before all testing is done because it can cause false negative results.

Her siblings and parents should also be tested for celiac disease.  Immediate family members have somewhere between 1 in 10 and 1 in 22 chance of developing celiac disease.  Family members should be retested every 2 years for life, or as soon as symptoms develop.

Best wishes. Let us know what happens.

[GF-Cheetah Cub]

My 12 year-old has T1D and hashimoto's.  When our endo informed us that her ttg was over 100 (under 20 being normal), she was willing to diagnosed her with celiac without the endoscopy.   Our doctor said she has never seen anyone with TTG that high and not have celiac.

We did not want to believe that our daughter has celiac, because she did not (still doesn't) have any symptoms normally associated with gluten.   We met with a GI doctor and scheduled the endoscopy.  We were hoping to prove the ttg wrong!

Well, the biopsy confirmed it, and now all our family meals at home are gluten-free.   

If your child does have celiac, the good thing is that there are lots of delicious gluten free food available now, and many restaurants will accommodate this dietary restriction.   We did have to give up many old favorite restaurants, but we found new favorites too.   My daughter is eating well, and is happy eating gluten free.

Best wishes to you guys.

[andreanoel]

Thank you all for your advice and help, with her results being that high, it seems very likely to me too. We're just waiting on a call back from the hospital to schedule the biopsy, so we should know more in a week or two. I know you can have no symptoms, and also that there are lots of symptoms not stomach related, but I was reading alot about symptoms online this weekend and the one thing that stood out to me was ' brain fog '. Before we even got this call from her doctor, my husband and I have noticed for the last month or so how spacey and distracted she is, and how she can't focus on anything. She's always saying ' sorry, I'm just spaced out again and I forgot what to do '! Maybe it's not related, I just found it interesting that there could be a connection.