Feel Like There Is No Answer

[SMRI]

Did both labs have the same scale for testing?  It could be one lab has a lower control number so it looks like they doubled when they really did not.  Say one lab uses 1-10 and the other lab uses 1-20.  A 4 in the first lab and an 8 in the second would be the same result.

[Brit1612]

Did both labs have the same scale for testing?  It could be one lab has a lower control number so it looks like they doubled when they really did not.  Say one lab uses 1-10 and the other lab uses 1-20.  A 4 in the first lab and an 8 in the second would be the same result.

No, they were the same.  Different labs, but both had a reference range of <6 being negatice, 6 to 8 being "elevated" and >8 positive.  So the first time he fell in the "elevated" range so they seemed to blow it off a bit.  But this time it came back "positive" (after being gluten free for a couple months).

[GFinDC]

Hi Brit,

 

I had mucus sometimes before going gluten-free.  Alternating constipation and diahhrea is fairly common I think.  The effects of celiac disease damage can be spread throughout the body.  They aren't necessarily confined to the gut.  Some people develop a skin rash, some get joint pain, some get brain lesions.  There are other symptoms too (300 or so).  The skin rash associated with celiac disease is called dermatitis herpetiformis.  The brain lesions are associated with gluten ataxia.

[MitziG]

Have you found anything more out? I see your post is a couple months old. If not, was just going to ask if they did an EMA test at all? A positive EMA would definitely mean celiac. My only idea for the increase in ttg is that the disease is continuing to progress because he is getting cross contaminated by gluten. If you have gluten in the house, it is really easy to do. He could also be developing increased sensitivity- meaning his immune system is reacting to levels of gluten considered " safe" for most celiacs (most packaged gluten-free food falls into this category. Has to be 20 ppm or less to get a gluten-free label, but some celiacs cant handle 20ppm) Lastly...does he eat oats and dairy? Many celiacs will have an immune response to them due to the proteins being similar to gluten. If you have cut out gluten but he is loading up with the other two, that could be your problem. I hope you get some answers!

[brit16]

MitziG - thanks for the reply. The reason I haven't updated is because we are in the middle of our gluten challenge. We are having more blood test ran at te end of Jan, and feb 6 we have an endoscopy and colonoscopy scheduled.

Our first GI pretty much went straight to getting the biopsy, after the ttg igG was positive from our ped. He didn't even run any blood work. So we went to a new GI after months of gluten free without a real obvious improvement. The new dr is good. She is running quite a bit of blood work ttg igG, DGP igG, some more test, but I'm not sure if it includes EMA? Should I request this as well? He is also iga deficient so it is making things more difficult.

He was negative for the DGP test, when the ttg came back even more elevated, that is what seems confusing. Thanks for your help.

[nvsmom]

If you get the EMA test run you'll need to request the EMA IgG rather than the EMA IgA due to the IgA deficiency. It's not used as commonly as the IgA version so it may not be available.

 

The endomysial antibodies test (EMA) tends to become positive as the disease progresses; it indicates more advanced disease, as a general rule.

[1desperateladysaved]

Has the child been checked for parasites? 

[Brit1612]

Yes, he has been checked for parasites numerous times over the last year, always comes back negative.

 

 

As for the EMA, if it is for more advanced disease, it would seem unlikely that he would show positive considering he is only barely 2 years old.  Should I push this test or just stick to the others they are running?

 

I may take a picture of the blood order request and see if y'all have any suggestions on other test that they should be running.  I don't want anything left out this time! Thanks everyone....

[nvsmom]

As for the EMA, if it is for more advanced disease, it would seem unlikely that he would show positive considering he is only barely 2 years old.  Should I push this test or just stick to the others they are running?

 

I would ask for it (EMA IgG) anyways. There are some kids who are positive in it, and I've seen a couple of kids who had positive EMA IgA but a negative tTG IgA although it is unusual. It is probably best to cover all of your bases just in case.

 

The blood tests I was positive in were the tTG IgA and EMA IgA. After being gluten-free for about 8 months or so, my EMA IgA had fallen to normal but my tTG IgA was still above normal, although it had fallen. My tTG IgA may stay positive longer than most because I have thyroiditis; other causes of slightly elevated tTG IgA are diabetes, colitis, crohn's, liver disease and infection. 

 

There are no other causes of an elevated EMA that I know of.  The EMA tends to become positive in response to an attack on the intestines. It is like it tries to wipe out the upper layer of the intestines where some damage has been inflicted - the reaction is a bit of an overkill.

 

Good luck!

[Brit1612]

Ok, so I pulled out my blood orders (post-dated for the ended of the month), to see what exactly they had ordered.  

 

So here is the list:

 

IGA (he already had a low result once / so I know some of the other test I am about to mention will be unreliable)

IGG

IGM

 

ttg - iga 

EMA - Iga

DGP - iga

DGP - igg

 

 

I have a call in to the doctor now to ask about the results of his x-ray, and to bring up any other possible test I would want ran.  I was surprised to see that the ttg - igg was not being ran again.  Is this because he has already had a positive on this test? ( I would think we would want to see if it had changed, increased, etc???)

 

So when I look at this list, it seems as though there is really only one test that could possibly give us any info?!  This is so discouraging, I was thinking that there were going to be at least a couple new test ran (that weren't dependent on iga).

 

I plan on asking about EMA igg, should I also ask for a repeat of ttg igg?  Any others?

 

Thanks in advance!

[nvsmom]

That's about it.    The EMA igG is a good idea since he already has a positive tTG IgG. Retesting the tTG IGG is an idea, but he must trust the result was correct so he didn't bother reordering that one.

 

The only tests not run are the AGA IgA and AGA IgG but to be honest, I would skip those.  The DGP tests were created to replace the AGA tests because they were notoriously unreliable - they could miss more celiacs than they caught.  Since the DGP tests are being done, I wouldn't worry about the AGA tests.

 

Good luck!

[Brit1612]

Ok, thanks for the input....I am so anxious to get everything done, but the low IGA makes things so difficult!  He honestly seems "fine" during the gluten challenge, which makes me wonder.  He has had some changes in stool pattern, and some really bad moods that were uncharacteristic, but I really  expected to see more "if" he is celiac. (considering he had been gluten free for almost 5 months leading up to this challenge).

[Brit1612]

The GI had actually ordered the repeat ttg igg, and the ema igg, but that paper was missing out of the ones they printed out for me.  So hopefully we will get some meaningful results.

 

Also, the GI called back and said that she wants us to put him on a daily regiment of miralax.  This seems so odd for someone who has issues with loose stools much more often than constipation.  But she said that the x-ray results revealed a lot of poop and that should not be the case with someone that has diarrhea.  He has been having some bouts of constipation, but had pooped quite a bit that morning.  (fairly loose stool)  She said that the loose stools could just be leaking out around the hard backed up poop.

 

Is this something that could be a result of celiac, or is it an issue in itself?  Thanks!!!  Also, he never had constipation before we started the gluten challenge (not while being gluten free, and not even before being gluten free), not he occasionally goes a few days without pooping (since starting the gluten challenge). 

[cyclinglady]

Even though I just had anemia at the time of my diagnosis, I found that I had constipation. I had a BM everyday that I thought was normal. And if it was not normal it leaned more to being loose. But during my prep for my routine colonoscopy (they did the endoscopy at the same time), I still was not cleaned out with all the prep that I did. I discovered that my small intestine was so damaged that it was taking me three days or more to process food! There was no villi (or not enough) to push food through my small intestinal to my large. So, I was really constipated!

[Brit1612]

Ok, so I am STILL CONFUSED, like I knew I likely would be.....

 

Newest test results (after about 10 weeks of a gluten challenge):

 

• ttg igg went DOWN (it was a 15 after being gluten free, now it is <1 after 10 weeks of gluten!???)
• DGP igg - <1
• All iga based celiac test were also negative, but he is IGA deficient, so those were not too revealing).
• serum IGA was even lower than before..... now it is a 9.9 before it was a 19 (low both times)
• Serum IGM (never had this ran originally) was also low - 45 it didn't state what the reference range was, it just said "low"

Does anyone have any insight on what low IGA and IGM mean?  Are they related to anything in particular.  Everything I have read says they are related to "celiac or other autoimmune disorders". If so, why is the one positive celiac test he had going down(all the way down) after being challenged for over 2 months??!!