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Help With Interpretting Results

Mom2-2girls

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Mom2-2girls Rookie
Mom2-2girls
Posted

Hello. My daughter who is 5 has been tested for celiac. This whole process started in early May it is now mid august and we still don't even have an endoscopy booked. Her symptoms are getting worse each week it seems. It is breaking my heart to see her in so much pain.

"On 2012-08-13, at 8:41 AM

Good morning Ms. Nedza

" TTG result is back and it is positive. Her antiendomysial antibody is positive at 1/160. Her TTG anti IgA is >100 and her anti TTG IgG is 9.8.

PLease let me know if you have any further questions."

I had requested the reference numbers but this is all I got. Does this look weak or strong? Any thoughts? They said the endoscopy would be 4-8 weeks to schedule. It has already been 3 weeks since our appointment and no word. :(

FYI - We live in Canada and this is at the Hospital for Sick Kids.

Thank you!

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Lisa Mentor
Lisa
Posted

Start her on the gluten free diet and relieve her of her pain. If she is uncomfortable, there is no need to continue on a full gluten diet just to be tests by an endoscopy. She's five :( And testing is not as reliable with children under the age of five.

A positive result on the diet is an additional confirmation of Celiac Disease or a gluten intolerance.

Either way, please ease her distress. And, I wish you great success. :)

beachbirdie Contributor
beachbirdie
Posted

Hello. My daughter who is 5 has been tested for celiac. This whole process started in early May it is now mid august and we still don't even have an endoscopy booked. Her symptoms are getting worse each week it seems. It is breaking my heart to see her in so much pain.

" TTG result is back and it is positive. Her antiendomysial antibody is positive at 1/160. Her TTG anti IgA is >100 and her anti TTG IgG is 9.8.

PLease let me know if you have any further questions."

I had requested the reference numbers but this is all I got. Does this look weak or strong? Any thoughts?

Thank you!

First, I second the suggestion to edit the post to remove any personal information. Anyone can see it, it can also be picked up by robo-harvesters. Better to be safe!

Edited to add: Ahhh, good, I see you cleaned it out! :)

Now on to the tests. The anti-EMA is quite high. Endomysial antibodies are a strong sign of tissue damage, and are pretty specific to celiac. You could save your daughter a lot of pain by taking her gluten free. The 1:160 number means it took a large number of dilutions to get to a point where no antibodies were seen. Meaning there were a LOT of them to start with.

Even without a reference range, that is very high. As is the TtG IgA. I don't know whether you can tell on the TtG IgG, your daughter's number is very close to some of the reference ranges so it's hard to know where the result fits in.

With those other two tests, I think there is very little doubt of celiac. If she were my daughter, I'd get her off the gluten now, without waiting for them to get around to scoping her. It could be months.

Mom2-2girls Rookie
Mom2-2girls
Posted
  • Author

Yes it sounds like it could be a couple months. I going to call and bring up her worsening symptoms. It took 2 months just for a consult. :(. They don't diagnose without the scope at Sick Kids. Maybe our ped would?! I doubt it though as he barely wanted to talk to us about it and just wanted us to see the specialist.

Thanks so much for the analysis!!!

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    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
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      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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