Blood Test Results Show No Celiac In Delayed-Growth Child

[nicolebeth]

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").

[pricklypear1971]

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?

[beachbirdie]

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.

[mushroom]

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.

[nicolebeth]

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.

[nora-n]

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.

[pricklypear1971]

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... Open Original Shared Link

[MitziG]

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.

[nicolebeth]

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!

[nicolebeth]

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!

[pricklypear1971]

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.

Open Original Shared Link - location of duodenal bulb (first portion of duodenum, not third).

[nicolebeth]

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.

Open Original Shared Link - 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.

[pricklypear1971]

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?

[nicolebeth]

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.

[pricklypear1971]

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.

[nicolebeth]

Well, did that genius offer up ideas???

The one who "never have thought it was Celiac", I mean.

His response was to make us feel stupid for insisting upon unnecessary tests. "He's not that small. His GI problems aren't that bad. He's just finding his curve, and if he doesn't find his curve, go to endocrinology."

[nicolebeth]

Is there someone else who could look at our kid and find out whether it's something else besides celiac? With celiac in the family, that's always been what we've thought. But, is there a doctor out there who would know what to do with the information besides just want us to wait and see? Which we're not doing anymore. Btw, the kid is on board with gluten-free.

[pricklypear1971]

Is there someone else who could look at our kid and find out whether it's something else besides celiac? With celiac in the family, that's always been what we've thought. But, is there a doctor out there who would know what to do with the information besides just want us to wait and see? Which we're not doing anymore. Btw, the kid is on board with gluten-free.

Contact your local Celiac support group and ask for a doctor referral. They generally know "friendly" docs in the area.

If you don't trust your current doctors then you need to find someone you can trust.

I would think of an endocrinologist next, like the Genius Doc suggested, if you have successfully ruled out Celiac. The biggest problem I see is that Celiac can have so many effects, and you may really have your answer...and need to know the ROOT of the problem. Celiac can play havoc with hormones, etc. which may be affecting his growth. An endocrinologist may treat him differently, knowing that??

[nicolebeth]

Contact your local Celiac support group and ask for a doctor referral. They generally know "friendly" docs in the area.

If you don't trust your current doctors then you need to find someone you can trust.

I would think of an endocrinologist next, like the Genius Doc suggested, if you have successfully ruled out Celiac. The biggest problem I see is that Celiac can have so many effects, and you may really have your answer...and need to know the ROOT of the problem. Celiac can play havoc with hormones, etc. which may be affecting his growth. An endocrinologist may treat him differently, knowing that??

The question is, how do we successfully rule out celiac? It seems like doing a gluten-free trial is going to be necessary to figure this out more-or-less conclusively. Or, do we wait for an endoscopy? Our son would rather go gluten-free than have the test again, but I suppose we really shouldn't rely solely on the preferences of a 7yo.

The pediatricians seem all right. I'm sure the Celiac Center at Children's that we went to will be recommended; it is "the" place to go in the area. I'm sure that they'd want him to have another endoscopy (they pushed it last time), unless they really feel he's an endocrinology patient. Interesting point about celiac being potentially related to any endocrine or hormonal issues.

[pricklypear1971]

With a positive response to a gluten-free diet you can rule IN a gluten intolerance but you can't call it Celiac. The difference right now, in the medical community is huge. In short, Celiac=damage (and things like delayed growth in kids) and NCGS isn't thought to cause damage on the Celiac scale unless you read about neurological symptoms ( I'm painting with a broad brush here. I am not saying NCGS patients don't have severe symptoms or damage, the medical community is - instead of saying "we haven't figured out what damage it causes".).

Or, you could (or a doctor could) declare him "Celiac" but since antibody testing doesn't seem to be conclusive for him, and his first endoscopy was a joke... it's hard to say "Celiac" without another endoscopy finding damage.

If he does has a positive response to gluten-free, he may not be able to go back on gluten for a challenge and further testing (a lot of people can't suffer through it). This could be important if you or a medical team wants to know if it's behind his growth. It could be helpful or necessary for school - special accommodations for elementary, high school, college, military.

You at LEAST need to find a doctor who is knowledgeable about gluten intolerance and/or Celiac. You can't rule it out yet, and if you go gluten-free without going through the endoscopy (done properly) you may not get another chance. It may be very important for your doctors to know if this is the root of problem.

Ultimately, it's your decision. You have to make the call. He has a familial history of Celiac. He's iga/igg deficient. His iron and d is low. He SHOULD have a convincing case for a GOOD biopsy. Find a GOOD doctor to do it. I don't care if the GI's at Children's sprout Fairy Wings and spew gold out of their buttocks, one biopsy sample of his intestines (not from the optimal area) is NOT an acceptable number of samples to rule out Celiac.

[GottaSki]

The biggest obstacles to removing gluten with a 7 year old is either the child or the parent. I'd suggest it is time to remove all gluten even if your son wasn't onboard - that you both are ready will make a difficult process much easier.

I understand the desire for a diagnosis, but another endoscopy may yield more negative biopsies. With deficiencies in both IgA and IgG he will likely never have a positive blood test. You have tried to get the appropriate testing - now it's time to remove gluten. Perhaps your pediatrician will diagnose based on family history and resolution of delayed growth once gluten is removed.

Best wishes for a year with a speedy rise up the growth chart

[nvsmom]

I had all my kids tested for celiac, and they all came back negative, including my 9 year old who I am almost certain has it. He too has growth that is slowing down. He used to be 75% for height and now he's in the 25-50% range; he's not that small so the doctors dismiss it but his 7 year old brother is now taller than him, and my year old will catch him in a few more years if this keeps up!

We are in the process ofconverting our entire family to a gluten-free diet. There are Cheerios left in the house, and that's it. I've switched him gradually over because he tends to balk at change (mild Aspergers) but I'm forcing the issue. I figure if he wants to eat gluten once he is grown, he can do it then, but we can't wait around for him to get growing... I stopped when I was in grade 6 (luckily I was fairly tall then though).

Anyway, I wanted you to know that I empathize with your confusion and frustration. It's hard to deprive our kids of foods they love but if we think it could be hurting them, we don't have any other choice but to do it, even if it is without a diagnosis.

I also wanted to mention that an underactive thyroid gland can affect growth by causing too much stress on the adrenal (As I understood it). Are his TSH levels normal? Was his ANA levels tested too? Other AI's and the inflammation they cause could be causing some of your sons issues too.

[nicolebeth]

I had all my kids tested for celiac, and they all came back negative, including my 9 year old who I am almost certain has it. He too has growth that is slowing down. He used to be 75% for height and now he's in the 25-50% range; he's not that small so the doctors dismiss it but his 7 year old brother is now taller than him, and my year old will catch him in a few more years if this keeps up!

We are in the process ofconverting our entire family to a gluten-free diet. There are Cheerios left in the house, and that's it. I've switched him gradually over because he tends to balk at change (mild Aspergers) but I'm forcing the issue. I figure if he wants to eat gluten once he is grown, he can do it then, but we can't wait around for him to get growing... I stopped when I was in grade 6 (luckily I was fairly tall then though).

Anyway, I wanted you to know that I empathize with your confusion and frustration. It's hard to deprive our kids of foods they love but if we think it could be hurting them, we don't have any other choice but to do it, even if it is without a diagnosis.

I also wanted to mention that an underactive thyroid gland can affect growth by causing too much stress on the adrenal (As I understood it). Are his TSH levels normal? Was his ANA levels tested too? Other AI's and the inflammation they cause could be causing some of your sons issues too.

I meant to mention that his TSH was normal. I know if it's an autoimmune thyroid condition there are different tests, but at least that one was normal.

Good luck to all of you, and thank you!

[nicolebeth]

The biggest obstacles to removing gluten with a 7 year old is either the child or the parent. I'd suggest it is time to remove all gluten even if your son wasn't onboard - that you both are ready will make a difficult process much easier.

I understand the desire for a diagnosis, but another endoscopy may yield more negative biopsies. With deficiencies in both IgA and IgG he will likely never have a positive blood test. You have tried to get the appropriate testing - now it's time to remove gluten. Perhaps your pediatrician will diagnose based on family history and resolution of delayed growth once gluten is removed.

Best wishes for a year with a speedy rise up the growth chart

Yes, we're also concerned that another endoscopy wouldn't show anything definitive either. And, then, we'd be left wondering: is it celiac? or is there something else causing his growth delay?

Thank you for the good wishes!

[nicolebeth]

With a positive response to a gluten-free diet you can rule IN a gluten intolerance but you can't call it Celiac. The difference right now, in the medical community is huge. In short, Celiac=damage (and things like delayed growth in kids) and NCGS isn't thought to cause damage on the Celiac scale unless you read about neurological symptoms ( I'm painting with a broad brush here. I am not saying NCGS patients don't have severe symptoms or damage, the medical community is - instead of saying "we haven't figured out what damage it causes".).

Or, you could (or a doctor could) declare him "Celiac" but since antibody testing doesn't seem to be conclusive for him, and his first endoscopy was a joke... it's hard to say "Celiac" without another endoscopy finding damage.

If he does has a positive response to gluten-free, he may not be able to go back on gluten for a challenge and further testing (a lot of people can't suffer through it). This could be important if you or a medical team wants to know if it's behind his growth. It could be helpful or necessary for school - special accommodations for elementary, high school, college, military.

You at LEAST need to find a doctor who is knowledgeable about gluten intolerance and/or Celiac. You can't rule it out yet, and if you go gluten-free without going through the endoscopy (done properly) you may not get another chance. It may be very important for your doctors to know if this is the root of problem.

Ultimately, it's your decision. You have to make the call. He has a familial history of Celiac. He's iga/igg deficient. His iron and d is low. He SHOULD have a convincing case for a GOOD biopsy. Find a GOOD doctor to do it. I don't care if the GI's at Children's sprout Fairy Wings and spew gold out of their buttocks, one biopsy sample of his intestines (not from the optimal area) is NOT an acceptable number of samples to rule out Celiac.

Would delayed growth occur from gluten intolerance? I'm asking because if he starts to grow on a gluten-free diet, would that mean celiac?

We are investigating the doctor options today, but are having him go to school gluten-free today. If we find somebody (good!!), we'll give him gluten for dinner and start the process again. While we're inclined to go gluten-free, my husband is concerned that we'll miss something else that could be going on or could be the cause of whatever is going on with our son. I like the idea of a diagnosis, but I'm also getting to the point where I just want to do the right thing for his health, diagnosis or no. (I'm gluten-free "for no reason" (another story) but there's a difference doing so by choice, obviously, and it would be good to know whether some ingestion would harm him).

Thank you!