Help With Test Results!?

[Momto2girls]

Hi! My 4 year old daughter was recently tested for Celiac by her GI. The nurse called to say the test was negative, and so asked for a copy of the labs (they were also looking for markers for Crohn's, etc) and when it arrived it had no reference ranges! I know I should just call, but since they already said it was normal, I hate to be a pest -- and we go for a follow up in June. But, I was just wondering what you all might know?

Her Transglutaminase IgA was 3.72 unit. My concern here is that there is an astrisk next to the number. To me that seems like it might not be normal? Her IgA was 81.8. Those are the only tests we had. Does anyone know what the Transglutaminase normal range is for a 4 year 0 month old is?

Thanks sooo much!

[psawyer]

Welcome!

Because of variances, each lab has a unique "normal" range for each test. You really need the norms from the lab that did the testing. Only two tests were done--the standard celiac panel involves more. Testing in young children is known to be unreliable.

I know I haven't helped answer your question. There just isn't enough there to give a solid answer.

[mushroom]

Where was the testing done, i.e., what lab? You could always call the lab and ask for clarification. But if she were my daughter I would want more testing done than just the tTG and total IgA. The full celiac panel consists of:

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

Hope you get some more answers.

[Momto2girls]

Welcome!

Because of variances, each lab has a unique "normal" range for each test. You really need the norms from the lab that did the testing. Only two tests were done--the standard celiac panel involves more. Testing in young children is known to be unreliable.

I know I haven't helped answer your question. There just isn't enough there to give a solid answer.

I appreciate the info. I know you're right. I am just frustrated that the nurse must've printed a screen from the computer that isn't really the results b/c there are no reference ranges. I would be shocked that a ped GI at the leading children's hospital in the area would miss a number that's not normal -- so I think I trust them -- but part of me wants to know if the number is close? And if the astrisk means something? I know in Aug she was a .6 on this number -- so it seems to have gone up a noticeable amount?

I just cannot get her bowels normal! No matter what we try...she's got food allergies already so I hate to pull gluten if it isn't necessary. Plus, when we go back in June the GI was going to decide if we scope or not, and so I hate to eliminate before the scope. But, she's missed 3.5 weeks of school. I know she's only 4 and it is only preschool but still.

[Momto2girls]

The test was done at the children's hospital she was seen at. I've put a call into GI this morning to see if they can help me clarify. Hopefully I'll hear back today!

[Cara in Boston]

Even if the results are within range, she didn't have all the tests so celiac disease cannot be ruled out. Had we not had the entire blood panel, it would have been missed in my son (5 at the time). All his IgA tests were perfectly normal. It was his IgG tests that were elevated. First doctor (Pediatric GI at very respected Boston hospital) said he DID NOT have it based on his IgA tests and the fact that he seemed perfectly healthy (height, weight, very few physical symptoms, etc.). We couldn't ignore the strange IgG results so we took him to the celiac clinic at Children's Hospital. They did a scope and found extensive celiac damage.

If we had used only the IgA tests and then resumed a regular diet, he would still be sick today . . .

Get all the blood tests or just skip to the scope . . .

If you wait until June for your appointment, then decide to do the scope, you will have to wait even more to book that. I would call the doctor and ask to just schedule it now. What will change from now until June that will help with the decision?

Good luck - I know the waiting is hard.

Cara

[Momto2girls]

Thanks so much Cara -- this is very helpful. I guess they wanted to see if we could get her "straightened out" in the next couple of months, and we wouldn't have to scope? But we've had extensive GI issues...that started 18 months ago, with over active bladder and bladder spasms due to constipation and food dye intolerance. She's very food sensitive and has severe tree nut allergies, as well as more moderate egg, and possible lactose intolerant? Now she's had diarrea for 7 weeks straight and was severely impacted as of 3 weeks ago. She doesn't sleep at night, always has a tummy ache, etc.

But, like your son, she is not underweight, she doesn't look "sickly" (aside from the allergic ringers under her eyes). So, who knows? I of course missed the nurse's call today b/c she didn't call my cell phone number (even though I said to!) so I still don't have any more information.

Can I ask why you were testing for Celiac with very few symptoms? I am just curious since your case sounds a bit similar to ours?

Even if the results are within range, she didn't have all the tests so celiac disease cannot be ruled out. Had we not had the entire blood panel, it would have been missed in my son (5 at the time). All his IgA tests were perfectly normal. It was his IgG tests that were elevated. First doctor (Pediatric GI at very respected Boston hospital) said he DID NOT have it based on his IgA tests and the fact that he seemed perfectly healthy (height, weight, very few physical symptoms, etc.). We couldn't ignore the strange IgG results so we took him to the celiac clinic at Children's Hospital. They did a scope and found extensive celiac damage.

If we had used only the IgA tests and then resumed a regular diet, he would still be sick today . . .

Get all the blood tests or just skip to the scope . . .

If you wait until June for your appointment, then decide to do the scope, you will have to wait even more to book that. I would call the doctor and ask to just schedule it now. What will change from now until June that will help with the decision?

Good luck - I know the waiting is hard.

[Momto2girls]

So they still haven't called, but I did find the full lab results from Aug (done by her ped, not by the GI) and the ref range for Transglutiminase IgA seems to be <4. So would 3.72 be a red flag, even though it is still normal? Or is it one of those things that a positive number is usually way higher than 4? I just hate to scope unnecessarily. In 7 months (since Aug) she went from .6 to 3.72. Is that significant?

[Cara in Boston]

My son had an abrupt behavior change . . . he was no angel to begin with, but suddenly he was having huge tantrums over nothing (the lego piece won't fit!) and meltdowns over the tiniest frustration (putting on shoes). He suddenly hated homework (previously rushed home to do it) and things like that. He complained for about 3 days of a stomach ache - at home and at school so I took him to our pediatrician. She did the blood test and we went from there. With the switch in doctors, it took about 5 months to diagnose from start to finish. After his blood tests, I started reading about Celiac Disease and realized he had other symptoms - dark circles (always) under his eyes, poor sleep, eczema, leg pain - mostly at night, MD said it was "growing pains" but it would sometimes keep him awake. We didn't realize he had stopped growing because he was still tall for his age, but as soon as he went gluten-free, he shot up three inches and was back on his original growth curve - I didn't even notice he had fallen off.

Strangely, the horrible behavior was only at home . . . somehow he was able to keep it together at school and they never noticed a change.

When my blood came back positive (the whole family got tested after his blood test), we sort of knew for sure, but still kept him on gluten until after the biopsy. Knowing I tested positive made me more certain the first doctor was wrong - just too much of a coincidence.

Now that he has been gluten-free for a year he is doing great. His symptoms are WORSE now if he gets accidently glutened - even has some GI issues which he never had before. Usually lasts 2-3 days.

From reading your post, I think you have already done the "wait and see" . . . what more can you do? What would you do differently to try and help before you meet with the doctor again? The logical thing would be to eliminate gluten and see if she feels better, but then you wouldn't be able to do any further tests. I would just skip to the endoscopy (which could still be weeks away, depending on how appointments are booked) - you could always cancel if her symptoms disappear before the procedure.

I'm no doctor, but I would think the dramatic increase in the numbers means SOMETHING significant. Maybe you are catching it early and there are just not enough antibodies yet to put her over the maximum range? Why wait?

Also, lactose intolerance can be caused by celiac damage . . . could be a symptom, not an additional food sensitivity.

At the very least, the sooner you complete testing (endoscopy) the sooner you can try the gluten-free diet - regardless of the test results. Keep in mind that she could test negative on ALL the tests and still benefit greatly from being gluten free. How she feels gluten free is really the most obvious clue . . . the testing process is so unreliable.

[Cara in Boston]

Just wanted to add:

I was nervous about the endoscopy too. It seemed so extreme and invasive. Except for some stitches, my son had never been to the hospital since the day he was born. Turns out it was no big deal. He had a great time (his brother was jealous!) and was back to his usual self within hours. I had one too and again, no big deal. Worrying about it in advance was much more stressful then the actual procedure.

Older son finally had one too (he had some tooth enamel issues the MD thought could be related and despite his negative blood tests, she wanted to check him out too.) Once again, no big deal.

Really, you will feel so much better with more information.

Hang in there -

Cara