Help Interpreting Labs

[snowmom]

My 3 year old daughter was diagnosed with celiac earlier this month, following both blood tests and biopsy. My mother was diagnosed several years ago. 

 

I also have a 20-month-old son, who has frequent but mostly mild GI problems. Other than that, he is growing well and seems healthy. After my daughter's diagnosis, I requested that his pediatrician test him for celiac just to be certain, and she ran the IgA TTG test. This weekend, we received a mailed lab report giving an IgA TTG index value of 3.4. At the bottom is a handwritten note saying "negative/normal."

 

I understand that this IgA TTG value indicates no celiac, which is a relief.

 

However, the lab report also includes a typed paragraph which says: "Result indicates levels of antibody are below the cut-off value of the assay. In presence of very low IgA levels, the IgA-based tissue transglutaminase may not be interpretable. Consider IgG-based tissue transglutaminase assay and/or consult pediatric gastroenterology at [phone number.]"

 

Can anyone shine some light on what this means? Is that paragraph suggesting that he's low on IgA (no value is provided for that)? I really want to believe that he's definitely negative, but that paragraph seems like a caveat to the "negative" report?

 

I do have a call into the pediatrician, but I'm curious if anyone else has seen something like this on a lab report. I know a lot of corporate chain labs use the same boilerplate language -- is it possible that it's just cut and pasted on to all IgA TTG lab results?

[Mayasmum]

Two of mine have low IgA also - basically our doctor has said that this means any Celiac test may give false results.

As their sister has confirmed celiacs, we have been advised to keep them gluten-free. A stool test showed the youngest has a problem, and she may have celiacs - they all have at least one celiac gene as well.

[Mayasmum]

Open Original Shared Link

Basically - if you have low IgA - your body will not mount a defense to the gluten, so the antibodies will not be there to test for - kwim?

Hope I explained that right lol, super tired right now.

There is a higher prevalence of IgA deficiency in those with celiac disease than in the general public, and there is a higher prevalence of celiac disease in those with IgA deficiency. So it could "poss" be a marker of celiacs.

[Mayasmum]

And this would not be a cut and paste scenerio, as not everyone has low IgA.

[snowmom]

And this would not be a cut and paste scenerio, as not everyone has low IgA.

Thank you, Mayasmum! Very helpful responses.

 

We did finally hear from the pediatrician this afternoon that she had in fact ordered a separate IgG test following that IgA TTG test that I quoted above. She said the results from the IgG screen are normal/no celiac, and that she's going to send me that paperwork also. I'm not sure why she didn't send everything in the first place.

 

So, now another question: assuming that he really is negative, we probably won't put him on a fully gluten-free diet (we will have a gluten-free kitchen at home, but his preschool is a separate matter, as we are already struggling to figure that out at our daughter's school). It seems like we will need to test little brother again at some point, with his sister having celiac and him having low IgA. Is there a standard for when to do a follow-up? The Google answers seem to be all over the place on when/if to re-test a sibling. Maybe I'm getting ahead of myself by already thinking about this!

[GretaJane]

Those at risk should be retested every 2-3 years, or if any symptoms or signs manifest.   The celiac gene(s) can turn at any time in life and they do not turn off.

 

You may want to have your son's DGP levels tested.  Open Original Shared Link

 

Get your daughter a 504 plan for school. Open Original Shared Link

 

 

[Mayasmum]

TBH, I decided that even though we had a negative response on the celiac test, we decided not to let the others have gluten at all, especially as a sibling has it. It may be worth looking at a comprehensive stool sample test as well - we did ours through Great Plains.

Our doctor also advised them going gluten-free as the low IgA means they could be celiac. Good luck with your choice mama.

I wish we lived in Italy - it's law there that gluten free food be available in schools, hospitals, etc.

[Mayasmum]

Quick question - how much gluten was your son ingesting before taking the test?

[nvsmom]

What was the normal range of the tTG IgA test? If it was 0-4, the 3.4 is a pretty high result if he is IgA deficient (1/20 celiacs is low in IgA which is higher than the regular population).

I agree that the DGP IgG would be a good test to request along with the tTG IgG. The DGP IgG is good at detecting early celiac, like in toddlers,compared to the tTG IgG. The endoscopy might be a good idea too - damage may be present even if antibody levels are not high enough to note in a blood test.

If he is having frequent but mild GI problems, I would strongly suggest trying the gluten-free diet regardless of the test results (once all testing is complete). My GI symptoms were frequent and mild at that age too, but my health declined as I aged. Going gluten-free won't hurt him but staying on gluten could. If you want to feed him wheat, give him a gluten-free trial of 6 months first. You already know he has problems on his current diet so trying the gluten-free diet could improve things... GI problems aren't normal, something is causing it.

Best wishes.

[snowmom]

Wow, thanks for this wealth of information, and for the follow-up questions.

 

Mayasmum, he was and is ingesting a pretty normal load of gluten. At the time of his blood anti-body test, we were sticking to our prior diet, because we were still waiting to do my daughter's biopsy and the GI told us not to alter our diet until formal diagnosis. My son still gets a fair amount of gluten as part of his preschool meal plan.

 

I think the missing piece of the puzzle here is what his IGA level is, as the lab report didn't provide it, and the doctor hasn't told me. I assume from that cryptic sentence that I quoted in my first post that he is low/deficient, but it would be really nice to know the number! We have an office visit on an unrelated issue soon, and I will ask then for the IGA number.

 

The TTG IgA range was given as anything under 20 being normal. I will explore some of the other tests mentioned here. Thanks to all of you for the wealth of information!

 

As for his GI issues: he has diarrhea far more often than his sister (now diagnosed celiac) did at the same age, 21 months -- at least a couple of times a week. Sometimes it lasts for days on end. On the other hand, he has always stayed around 90% on the growth chart, and has not shown any mood effects. The tummy issues seem not to bother him at all. But it seems like it's worth investigating more what's going on with that funny lab result.

[Mayasmum]

If his IgA came back as low/deficient, then the celiac test cannot be trusted. IMHO I would keep him gluten-free.  With the side effects - they can vary from person to person, and it can be very hard for a little person to tell us what is going on. If you can do the stool test, that will tell you a lot about his gut, and that will help with some of the puzzle.

Good luck! We take packed lunches in for my daughter - maybe the preschool will let you do that?

[nvsmom]

As for his GI issues: he has diarrhea far more often than his sister (now diagnosed celiac) did at the same age, 21 months -- at least a couple of times a week. Sometimes it lasts for days on end. On the other hand, he has always stayed around 90% on the growth chart, and has not shown any mood effects. The tummy issues seem not to bother him at all. But it seems like it's worth investigating more what's going on with that funny lab result.

 

Slow growth is one possible symptom, it is not found in all celiacs. I was a huge kid - well, tall anyway. I was 5'8" and 130lbs in grade six (I was 12). I have a picture of me standing next to my teacher and I was taller than him... I was the tallest in a school of over 700 kids but I am sure I had celiac disease from babyhood and I remember those early childhood stomach aches from before I learned to tough it out. I was also a very easy baby from all reports - hardly ever cried.

 

One symptom of good health doesn't cancel out other symptoms. Doctors seem to dismiss symptoms with that mindset... I'm glad that you are investigating it further on his behalf.    Best wishes.

[GottaSki]

Wow, thanks for this wealth of information, and for the follow-up questions.

 

Mayasmum, he was and is ingesting a pretty normal load of gluten. At the time of his blood anti-body test, we were sticking to our prior diet, because we were still waiting to do my daughter's biopsy and the GI told us not to alter our diet until formal diagnosis. My son still gets a fair amount of gluten as part of his preschool meal plan.

 

I think the missing piece of the puzzle here is what his IGA level is, as the lab report didn't provide it, and the doctor hasn't told me. I assume from that cryptic sentence that I quoted in my first post that he is low/deficient, but it would be really nice to know the number! We have an office visit on an unrelated issue soon, and I will ask then for the IGA number.

 

The TTG IgA range was given as anything under 20 being normal. I will explore some of the other tests mentioned here. Thanks to all of you for the wealth of information!

 

As for his GI issues: he has diarrhea far more often than his sister (now diagnosed celiac) did at the same age, 21 months -- at least a couple of times a week. Sometimes it lasts for days on end. On the other hand, he has always stayed around 90% on the growth chart, and has not shown any mood effects. The tummy issues seem not to bother him at all. But it seems like it's worth investigating more what's going on with that funny lab result.

 

Welcome!

 

Frequent diarrhea is not normal, I strongly agree with removing all gluten after testing is complete for at least 6 months.

 

Couple other things to keep in mind...not everyone with Celiac Disease is short and underweight...we and our children come in all sizes.  I was overweight rather than underweight and my children and grands were all in the high percentile for height as small children -- yet we all have Celiac Disease.  Additionally, young children don't always get irritable with digestive issues...especially if it is their "normal" -- again the diarrhea is a better indicator of what is going on.

 

You are on the right track...do make sure you get that Total Serum IgA value, but I would strongly recommend both a tTG-IgG and DGP-IgG regardless of the IgA results -- based on his symptoms and sibling's diagnosis.

 

Stick with it Mom