Is there any possibility that it's not celiac's?

[Jkta]

Hi!  I just got my 9 yr old daughter's results for her TTG levels.  It is >250 (normal is <12). She also has hasi's hypothyroid (since age 5) and vitiligo since 7.

She's complained of stomach pain on and off for at least 2 years now, usually in the mornings before breakfast and before going to school. It started at the beginning of the school year so I thought it was nerves with school and such.  Then she had a close friend that also kept saying she had stomach aches so was wondering if she was just copying?! But it persisted so I took her to see her family doctor.   She thought it could be due to constipation, which she's had since infancy.  

Then my husband read something on the internet about celiac's, so at our recent appointment with her endocrinologist we brought this up and said we  should check it out.  But other than the bouts of stomach pains she's a thriving young girl.  She's not short or under weight. And once she starts moving, the stomach pains usually go away.  I also haven't noticed any pattern of diet that causes the pains.

Do I have any hope that it's not celiac's. I've read that people with hasi's also have elevated TTG levels, but this high?  We will be seeing a GI specialist on sept 9th.  

Thanks for your insight. 

[kareng]

People with Hashi's might have a slightly elevated level.  This is off the charts elevated.  

 

Looks like about 4-6 % of people with Hashi's have Celiac

 

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[cyclinglady]

I am sorry about your daughter!  

I have Hashi's and I never (even in follow-up testing) get a positive TGG.    Funny, huh?  My GI is perplexed too, but it reinforces that fact that celiac disease presents differently and symptoms can wax and wane making a diagnosis more difficult.  That is why researchers have been considering screenings for everyone, but it does not makes economic sense.  ?.   Not everyone is wasting away either. 

I was was shocked that I had celiac disease.  I presented with anemia at a time when I was going through Perimenopause and already had a genetic anemia.  How my GI caught it, I do not know (he must have just attended a conference) as I was in for a routine colonoscopy (am over 50)!  But when you have one AI disorders others can crop up.  

Keep her on gluten as all tests require it.  If diagnosed, all first-degree relatives should be tested even if symtom free!  

Keep us posted and I wish her well!  

 

[Gemini]

I have both Hashi's and Celiac and it is about 98% certain your daughter has Celiac. My tTg was as high as your daughter's at diagnosis for Celiac.......Kareng is correct in that it is only mildly elevated with thyroid disease, not off the charts elevated.  The doctors should have done a complete Celiac panel, for future reference when checking antibody levels. Just be aware that in kids, they sometimes do not find enough damage to make a diagnosis off of the biopsy. It can take years for damage to accrue to the point where they find it. However, with a tTg that high, it is almost certain they SHOULD find it.

Good luck!

[Jkta]

Thank you all for posting.  I've been trying to find what kind of elevated levels someone with Hashi's should have but wasn't able to find anything. I think I'm just going through the denial stage...but I almost have my head wrapped around it. 

I've also read some medical journals that suggested values >100 may not necessitate a biopsy.   From their findings, TTG >100 had at least a marsh II or more 100% of the time.  Sorry, I don't have the link in hand. 

If the GI specialist says it's not necessary to do a biopsy, should I insist for my daughter? Or is it not worth the risk of sedation and be happy with the diagnosis? Hmm, I'm not sure which way I'm leaning towards yet.  

Also, I've spoke to my family physician for testing me, hubby and son, but because this test is not covered (I live in Ontario Canada), she recommends that we just wait for my daughters diagnosis, then we all try the gluten-free diet for 2-3 weeks and then eat gluten again and see if we have symptoms.  Any thoughts?  I actually don't mind getting tested because we do have private coverage...but was debating on whether or not to subject my younger son to needles.

Thanks again for all your insight.  This place is a great wealth of knowledge.  I know I've been staying up late and reading as much as I can about celiac's disease. 

Jams

[squirmingitch]

This is the full celiac serum panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

You will want the GI to do the full panel on her ESPECIALLY if you're not going to do an endoscopy. I understand in Canada it can be months, like 6 months or more to get an endoscopy. That may be different in different provinces, I'm not sure, but have had Canadians on here who had LONG waits. You have to keep her on gluten until ALL testing is done. It's not a good idea to go off gluten & then go back on it because the vast majority of celiacs have far stronger reactions when they resume eating gluten after having been off it. This is also why I would not recommend you, hubby & son trying the gluten-free diet & then going back on it as a test. Best to get the full panel done on everyone. You will need to do that periodically (every 2 yrs.) because celiac can present at any age.

While you're waiting for the GI appt., you can read our Newbie 101 located in the coping section to acquaint yourself with "the new rules" your daughter will have to live by and how to keep her safe from cross contamination. The gluten free diet carries a steep learning curve so you might as well start learning what to do and begin preparing your kitchen so you will be ready to go when the time comes instead of scrambling to replace kitchen items as well as learn the diet rules.