"weak positive" celiac test result

[ktgrok]

DS6 is slightly anemic, low D, and has a TGG IGA of 6, with normal <4, 4-10 being weak positive, and over 10 being positive. We will be seeing a gastroenterologist tomorrow morning, but figured I'd ask for Hive wisdom before I go so I know the right questions to ask. He is slightly anemic with low ferritin and low vitamin D,  has loose stool occasionally, ADHD type symptoms, and recently OCD and anxiety stuff, which is what started all this. Lots of meltdowns on bad days. He has not had any of the other antibody tests run, nor a total IGA. 

Anything I should be asking about? Is "weak positive" less likely to be true celiac, or is it like a pregnancy test - positive is positive?

[Acorn]

From my experience a decade ago, at that time we were told only true positive diagnosis would be from biopsy of the intestine. It wasn’t a true negative because perhaps the inflamed section wasn’t selected for biopsy. I’m not sure if the bloodwork tests have changed since then.

PS, also we were told to keep gluten in the diet until after the scope.

Edited December 18, 2018 by Acorn

[lmrich]

I am allergic to wheat - not celiac. Same symptoms. I had to have a blood serum test to check for that. 

(I think celiac testing only works if the person has consumed wheat lately - but I am not 100% on that)

Good luck. 

[ktgrok]

Yes, he has been eating wheat, so we are good there. I imagine the gastroenterologist is going to want to schedule a biopsy, which I am okay with I guess. Seems that some doctors no longer require a biopsy for diagnosis in kids if the bloodwork is definitive, but his is so low positive I doubt that will be the case with him. Or there is a different blood test, the EMA I think, that is even more accurate. 

There is also in the works a point of contact, in office test that companies are starting to make, which is awesome. Just a pinprick of blood! I'm going to ask about that for my other kids testing, if it is required, but I don't think it's widespread yet. 

[Classic Mom]

Keep him eating gluten until you have further testing done.

With his Ttg number, Gi will probably want to do an endoscopy with biopsy (it takes less than 10 minutes but requires sedation).  Currently, if the Ttg comes back high and there is a family history of celiac many GI docs are skipping the biopsy for diagnosis, but his Ttg is borderline. Another option may be to repeat the bloodwork at the next visit and see if it is more elevated.

In the olden days, everyone had a biopsy, so my DD with a Ttg of 200+ had a biopsy.  Last year, my niece was diagnosed without biopsy with Ttg in the 20's.

Based on the anemia, GI symptoms, and elevated Ttg, I would guess that he will end up with a celiac diagnosis. 

For your other kids, you may want to look into getting genetic testing (bloodwork) to see which ones carry the genes. That way you only have to do screening tests (Ttg) on family members with the genes.

Also, if he has celiac, please get him tested for thyroid disease annually (there is a very high correlation with celiac and thyroid disease).

Good luck with the appointment. 

[sassenach]

Good luck with the GI appointment today. Update us when you have the chance!

[ktgrok]

So, first, I LOVED the doctor. She was highly recommended by a friend whose son has IBD, and I see why. She was great. Wish she was my doctor! 

She said that basically, the only things that will cause elevated TTG IGA plus his anemia plus low D are Celiac (most likely with his symptoms), Crohn's Disease (less likely without abdominal pain or bloody stool but still possible) or an active infection (very unlikely but will check stool for parasites/infection to be sure). Pretty much she thinks 60-80 percent chance he had Celiac, otherwise Crohn's. So we are hoping for celiac. 

Have a kit to collect a stool sample, and an appointment for more lab work tomorrow morning. Depending on what those show we will either do just an upper endoscopy or that plus a colonoscopy. Any scope will be after the holidays, so he is to enjoy the heck out of any and all christmas treats and hopefully fatten up a bit. She'd like to see him gain back the pound that he's lost in the last month, or a bit more. And even though his lab work says he isn't super anemic she thinks he LOOKS anemic. She also thinks my DD8 looks more pale than she should, so if/when we check her for celiac we will check her iron levels too. 

My son was FREAKING OUT over the idea of the endoscopy but my good friend's son has had it done multiple times and has offered to talk to DS about it and give him a pep talk, which made DS happy. Hearing that it is very quick, and that I've had one, Grandma has had one, and his older brother has had one (sort of, he swallowed a coin at 18 months and they used a scope to grab it out of his esophagus where it got stuck), and that a kid his own age has had it made him feel much better. Now he's fine about the idea, thankfully. 

Oh, and she said she's not an expert, since she's in gastroenterology, but she does think he has PANDAS on top of the celiac, given his history/symptoms. 

[Pen]

Yay!!!  Sounds like a winner doctor and a workable approach!!!

I hope he gets onto a good road soon.  

[kbutton]

She sounds fantastic. 

I have a close relative with a TTG that was 30, all the other blood tests were normal. Doc said nothing to see here folks! Grr! There are some funky symptoms with this person too--allergies developed in their 60s, some skin issues, etc. Sigh.

[ktgrok]

2 minutes ago, kbutton said:

She sounds fantastic. 

I have a close relative with a TTG that was 30, all the other blood tests were normal. Doc said nothing to see here folks! Grr! There are some funky symptoms with this person too--allergies developed in their 60s, some skin issues, etc. Sigh.

Oh wow. She said that other than an active infection of some sort, which he doesn't seem to have, there is no reason for an elevated TTG other than celiac or crohn's. Period. 

[kbutton]

Just now, Ktgrok said:

Oh wow. She said that other than an active infection of some sort, which he doesn't seem to have, there is no reason for an elevated TTG other than celiac or crohn's. Period. 

I will try to work on my relative about this. I read at the time that it was very specific for celiac and the other blood tests were to help clarify if the TTG wasn't high, but if the doctor wasn't saying so, it was a no go. This person can't imagine being GF, but in the intervening time, the conception of doctors always being on top of things has been shaken numerous times, including when it was life-threatening. Maybe I'll get somewhere this time, lol! 

[ktgrok]

Yes, TTG is about 97% specific. Unless she has type 1 diabetes, or Crohn's, the chances of a false positive are incredibly low.