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Blood Test Results Show No Celiac In Delayed-Growth Child


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#1 nicolebeth

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Posted 18 September 2012 - 05:35 PM

I've written in before (I don't know how to link to prior posts). In brief, my son was tested at age five--bloodwork and endoscopy were normal, except for a low total IgA.

My son stopped growing sufficiently again. He's crossing percentiles, and hasn't gained weight between June and now, hasn't grown a shoe size in a year, and is in the 3rd percentile for height. His doctor just ordered a ton of blood tests. He has an aunt and uncle with celiac.

The celiac bloodwork was normal. The total IgA was again, low:

Total IgA 46.6 (79-169)
EMA IgA negative
tTG IgA 2.1 (<4)
tTG IgG 3.6 (<6)
DGP IgA <10 (<20)
DGP IgG <10 (<20)

(Two years ago, his Total IgG was also on the lower side. But, I didn't think those were related in the same way? Are they? We did see an immunologist two years ago, and nothing was found.)

What we don't think was checked before were the ESR or liver enzymes. His ped's message said all the tests were "unremarkable", but she did want to speak with us (perhaps about these?).
The Alkaline Phosphatase Serum is: 283 (59-194)
The Sedimentation Rate is: 25 (0-10)

Iron is normal, but at the low end of the range. His is 67 (65-175). Vitamin D was normal (41).

I'm starting to think we're reading into what's not there. Though, he shouldn't still be "finding his curve" at age 7. My husband will be tested soon since his sibs are the ones who've been diagnosed (though he's the one debating his doctor over the number of tests he should have).

We were expecting celiac to show up this time. Now, we're concerned that something else could be going on that we wouldn't be able to resolve with a gluten-free diet.

Any test that we missed? Or, can we figure this is off the table for the time being? We hesitate to go through an endoscopy again as it doesn't seem worth it to put him through that (plus, Children's was a bit nasty about it last time, despite telling us that celiac was "very likely" and he must have the endoscopy, another GI at our follow-up said "I would NEVER have thought this was celiac").
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#2 pricklypear1971

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Posted 18 September 2012 - 06:55 PM

Okay, well...

Since he's iga deficient you are limited on the blood work. I really don't know if more are available igg. The fact that he's iga deficient is interesting.

The low/ish iron and d are consistent with celiac.

The high sed rate and phosphates are consistent with autoimmune/Celiac.

Id ask for another biopsy and ENSURE they take apx 6 biopsies from the duodenal bulb. There's an article/research piece in here about the importance of taking the biopsies from that area. Search on celiac.com for it.

What else do they think is going on?

Have you tried a gluten-free diet trial?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 beachbirdie

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Posted 18 September 2012 - 09:21 PM

I've written in before (I don't know how to link to prior posts). In brief, my son was tested at age five--bloodwork and endoscopy were normal, except for a low total IgA.

My son stopped growing sufficiently again. He's crossing percentiles, and hasn't gained weight between June and now, hasn't grown a shoe size in a year, and is in the 3rd percentile for height. His doctor just ordered a ton of blood tests. He has an aunt and uncle with celiac.

The celiac bloodwork was normal. The total IgA was again, low:

Total IgA 46.6 (79-169)
EMA IgA negative
tTG IgA 2.1 (<4)
tTG IgG 3.6 (<6)
DGP IgA <10 (<20)
DGP IgG <10 (<20)

(Two years ago, his Total IgG was also on the lower side. But, I didn't think those were related in the same way? Are they? We did see an immunologist two years ago, and nothing was found.)

What we don't think was checked before were the ESR or liver enzymes. His ped's message said all the tests were "unremarkable", but she did want to speak with us (perhaps about these?).
The Alkaline Phosphatase Serum is: 283 (59-194)
The Sedimentation Rate is: 25 (0-10)


There are some signs of celiac in your child, and your husband's siblings have celiac. The potential is there.

It is common for kids to test negative even if they have celiac.

Your child is IgA deficient, which really skews the testing; his elevated liver enzymes are consistent with celiac, if they haven't found any other problems with your son, and the elevated SED rate shows there is inflammation, also a side effect of autoimmune condition.

I'm not a professional, but I am a mom, and if it were my child I would go gluten-free and not waste time or health on testing.
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1999 - Hypothyroid
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2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#4 mushroom

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Posted 18 September 2012 - 09:54 PM

You say that both his IgA and IgG have tested low (the IgG in the past), so how can you believe tests that are based on your son being a normal producer of these antibodies. Normally if the IgA is low they rely on the IgG, but if that is low too I would suspect that another endoscopy would be the only way of of diagnosing because the blood tests won't work.

If celiac runs in the family,and he continues to fall off the growth chart, and the doctors will not do an endoscopy (which admittedly is less reliable in children) then I would think your only option is to try the diet. (Your husband's results will be interesting - I believe he should have as many of the tests as he can get the doctor to order because usually not all tests are positive)

As a mom, I don't believe you should continue to watch him fall off the growth charts and believe in tests that are often falsely negative. This is a very important growth time. While the nutrient levels tested are in the normal range he is at the low end and may well drop off there as well. His sed rate is positive for the presence of inflammation. I cannot tell you what to do and I am not a medical professional, but if he were my child I would take him gluten free if you have exhausted all your testing options for celiac. The best test result is a positive response to a gluten free diet.
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#5 nicolebeth

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Posted 19 September 2012 - 02:53 AM

Thank you all very much. We are inclined towards putting him on the gluten-free diet. (I'm eating that way anyway, as paleo/primal seems to help me.) Today, I'm going to ask his pediatrician what else she needs to rule out--given the liver function tests and the ESR. But, regardless, I also will ask her to diagnosis him with presumed celiac so we have something to give to his school. We make his lunches and snack, and they handle all sorts of allergies there, but I want things to be clear. Also, this would help our son.

By the way, that's very interesting that the low IgG also could cancel the IgG testing; they never mentioned that two years ago.

If we're trying the diet out for him, how long is a good trial? Six months? A year? I know that he will be on board most of the time, especially with support from the doctor. But, he's always been the kid who takes food without asking (before I know it, at a party, he's the one who's had tons of cookies and no main course).

My husband is either getting all of the testing, or getting a new doctor. He was gluten-lite until about four weeks ago (sort of happened because of me not buying it or making it), so is just gluten-loading before having the blood draws. He's having the equivalent of at least two slices of bread/day. I hope that's enough! Our son was eating bread every day for the past four weeks as well, but also tended towards having more prior to that due to friends' houses, day camp, etc.--his foods of choice at restaurants have always been pasta, pizza, pancakes. So, in this case, I don't think the results were skewed by lack of gluten consumption. It sounds like his IgA and IgG did that to him enough alone.

Well, he gets a sandwich in his lunch today, in case the doctor would really like us to see a GI again. I'm sure we could get him another endoscopy, it's just a question whether we really want to do that. (They didn't do the sampling in the duodenal region last time--or, if they did, they took only one. I think they took about three total--and thought everything "looked great".)

Again, thank you all! I had thought I read that elevated liver tests and the ESR could point to celiac, along with low iron. We don't want to wait until he's showing even more signs.
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#6 nora_n

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Posted 19 September 2012 - 05:50 AM

the total IgA is about half or a quarter of normal, so you can double or quadruple the ttg number I think, and then he falls into the positive range.

Yes, the low total IgG means the IgG type tests are not valid either. Same issue.

Yes, low antibodies is actually a sign that the child has celiac and cannot make enough antibodies.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
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Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#7 pricklypear1971

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Posted 19 September 2012 - 06:00 AM

Thank you all very much. We are inclined towards putting him on the gluten-free diet. (I'm eating that way anyway, as paleo/primal seems to help me.) Today, I'm going to ask his pediatrician what else she needs to rule out--given the liver function tests and the ESR. But, regardless, I also will ask her to diagnosis him with presumed celiac so we have something to give to his school. We make his lunches and snack, and they handle all sorts of allergies there, but I want things to be clear. Also, this would help our son.

By the way, that's very interesting that the low IgG also could cancel the IgG testing; they never mentioned that two years ago.

If we're trying the diet out for him, how long is a good trial? Six months? A year? I know that he will be on board most of the time, especially with support from the doctor. But, he's always been the kid who takes food without asking (before I know it, at a party, he's the one who's had tons of cookies and no main course).

My husband is either getting all of the testing, or getting a new doctor. He was gluten-lite until about four weeks ago (sort of happened because of me not buying it or making it), so is just gluten-loading before having the blood draws. He's having the equivalent of at least two slices of bread/day. I hope that's enough! Our son was eating bread every day for the past four weeks as well, but also tended towards having more prior to that due to friends' houses, day camp, etc.--his foods of choice at restaurants have always been pasta, pizza, pancakes. So, in this case, I don't think the results were skewed by lack of gluten consumption. It sounds like his IgA and IgG did that to him enough alone.

Well, he gets a sandwich in his lunch today, in case the doctor would really like us to see a GI again. I'm sure we could get him another endoscopy, it's just a question whether we really want to do that. (They didn't do the sampling in the duodenal region last time--or, if they did, they took only one. I think they took about three total--and thought everything "looked great".)

Again, thank you all! I had thought I read that elevated liver tests and the ESR could point to celiac, along with low iron. We don't want to wait until he's showing even more signs.


Of they took 3 - one from the esophagus, one from stomach, one from intestines that's the kiss of death.

If that facility is determined to do THAT again, find another facility. Seriously. Or don't bother with the endoscopy.

Here's a link, though it isn't the best study. There is another one that compares more types of biopsies... http://www.ncbi.nlm....ubmed/18979585/
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 MitziG

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Posted 19 September 2012 - 06:08 AM

I would personally just consider him celiac and start him on the diet. Perhaps the doc will agree to dx him based on resolution of the growth issue on a gluten free diet.

The bloodwork isn't going to show it as long as he is deficient in iga and igg.

It sounds like they didn't even biopsy the duodenal bulb so of course they missed it.

I would say enough is enough.
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#9 nicolebeth

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Posted 19 September 2012 - 12:32 PM

I'm just sorry we didn't take him gluten-free two years ago. It was hard when Children's categorically denied he could have it as the endoscopy was normal. They said if he continues not to grow, go see endocrinology. (He grew just enough from age 5-6, so we thought ok, we're seeing things that aren't there.) We also had tons of follow-up immunology bloodwork in fall 2010. None of it showed anything interesting to anyone.

I don't remember with 100% certainty how many biopsies they took two years ago (but do feel like it was fewer than recommended here, but definitely was from more than one location). What I do remember was that they were completely confident it wasn't celiac--it was the Celiac Center!--so, again, it felt like we were just being concerned because our kid is "short" (at least, that's the reaction we'd get from everyone).

I am hopeful the doctor will write a note for us, and support us--we do plan to consider him celiac, but would like to speak to the doctor first before we start telling the school, etc. Family is supportive. It's been on our minds for about three years now, maybe longer, and it doesn't seem like we are going to get that "definitive" proof. I think my son, himself, is the proof.

Thanks again for all the information and support!
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#10 nicolebeth

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Posted 19 September 2012 - 01:52 PM

Update: doctor also ordered an IgG and an IgM. She noted that his IgA normalized in 2010 with a second blood test (it was 52, with a range of 50-150--that was done in a different lab from the recent test and the first test). His IgG in September 2010 was 566 (600-1500).

The ped also thinks that the liver enzyme function doesn't have the correct reference range--she thinks the lab used the adult range, rather than the child range.

Finally, she'd like him to be tested for giardia (again, as in 2010--he didn't have it then either). This is because his growth normalized from 2010 to 2011 (well, held steady at the 5th percentile), and it would be another reason for an infection (high sed rate), and that he'd be prone to them with a low IgA. So, I think she thinks we're doing something unnecessary, taking him gluten free, but she doesn't see anything wrong with it. If he still has low total IgG, perhaps she'll be more convinced of the necessity.

Anyway, with the uncertainty as to the liver enzyme function range, does that change anything? I guess, to us, no one is giving us a good reason why he's not growing.

I did also find his biopsy report from two years ago. There were six biopsies: (1) middle third of the esophagus, (2) lower third of the esophagus, (3) lower third of the esophagus, (4) gastric body, (5) gastric antrum, and (6) third portion of the duodenum. I asked them before the endoscopy: "could he have celiac without damage?" (I was trying to figure out whether the test would be worth it.) They said: "no; his growth and digestive issues mean that if he has it, there would be damage" (again, they were quite sure he would have it until they saw his endoscopy report). I remember the endoscopy doc talking about how beautiful and perfect everything looked in there.

He also had a normal sigmoidoscopy on the same day.

Back to feeling like a crazy person who is trying to see illness in her child!
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#11 pricklypear1971

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Posted 19 September 2012 - 02:12 PM

Well, none of those locations were the duodenal bulb and only one was in the intestines.

That was not a good (or even marginal) biopsy to dx Celiac.

http://radiographics...ppl_1/S147.full - location of duodenal bulb (first portion of duodenum, not third).
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#12 nicolebeth

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Posted 19 September 2012 - 02:28 PM

Well, none of those locations were the duodenal bulb and only one was in the intestines.

That was not a good (or even marginal) biopsy to dx Celiac.

http://radiographics...ppl_1/S147.full - location of duodenal bulb (first portion of duodenum, not third).


Wow, I had no idea. I barely passed Anatomy & Physiology back in H.S. I also wouldn't have thought to question this particular facility; amazing that they had him under all that time and didn't even take the right samples! So frustrating. Thank you for the information.

I suppose it's possible these are just the images they provided us and not the places from which they took samples? This is all I have, now. I'd have to go back there and order the report.
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#13 pricklypear1971

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Posted 19 September 2012 - 02:37 PM

Wow, I had no idea. I barely passed Anatomy & Physiology back in H.S. I also wouldn't have thought to question this particular facility; amazing that they had him under all that time and didn't even take the right samples! So frustrating. Thank you for the information.

I suppose it's possible these are just the images they provided us and not the places from which they took samples? This is all I have, now. I'd have to go back there and order the report.


I also find it shocking that if they were so certain of finding Celiac (therefore wanting to find it) that they only took one intestinal biopsy.

Did the dx physician do the biopsy or did another doctor do it?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#14 nicolebeth

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Posted 19 September 2012 - 02:45 PM

I also find it shocking that if they were so certain of finding Celiac (therefore wanting to find it) that they only took one intestinal biopsy.

Did the dx physician do the biopsy or did another doctor do it?


There was an endoscopy doctor (I believe an attending), separate from the GI docs (we had an attending an a resident). And, as I said, I may just have photos that aren't representative of the actual biopsy. There was someone above the attending when we went to our follow-up; he was the one who said he'd "never" have thought it was celiac.
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#15 pricklypear1971

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Posted 19 September 2012 - 03:20 PM

There was an endoscopy doctor (I believe an attending), separate from the GI docs (we had an attending an a resident). And, as I said, I may just have photos that aren't representative of the actual biopsy. There was someone above the attending when we went to our follow-up; he was the one who said he'd "never" have thought it was celiac.


Well, did that genius offer up ideas???

The one who "never have thought it was Celiac", I mean.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!


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