Extended Breastfeeding & Celiac Diagnosis

[nicolebeth]

Hi--I have posted before about my son (in 2010), and the issues seem to be coming up again.

Does anyone know whether extended breastfeeding (and I mean until age 5) can actually cause endoscopies and blood work to appear normal?

My son nursed until he was a bit over 5. He had dropped off his growth curve slowly but surely from age 2.5 on. He had blood work a few months before his birthday (low total IgA, but the rest were normal). His endoscopy was normal, despite the doctors at Children's making us think it was "very' likely he'd have celiac. Upon giving us the results, a different doctor said he "never" would have thought it was celiac. (Thanks--because we really wanted him put under "for no reason"!)

He maintained his low curve from age 5 to age 6--so, we became less concerned, and though he was short and just finding his curve--no problem. Then, from 6 to 7, he dropped again. He is the size of a 5yo. Everyone in his class is bigger (except for the one kid who has smaller parents, and is also younger than him). The kids at his day camp are all much bigger as well.

Let me be clear (since IRL I take heat for even broaching that there could be something wrong with his height!)--if he has genetic short stature, that's fine. However, dropping off the curve is not fine. I am about 5'5" (average weight). Husband is 5'7" (and very skinny). According to the charts, he and I are average, not "tiny"--therefore, our kids should be average as well (or, if shorter, not dropping further). Our other two kids are average, and have maintained similar growth (though the youngest is only 2, so hard to tell for sure).

My son has diarrhea (not watery, but undigested food) EVERY day, for the most part. To him, that is normal. Everything is "clean" coming out; he's definitely not constipated. His stool tests from 2010 showed carbohydrate malabsorption. He was a bit low on total IgG as well, but everything else was normal. His feet have not grown in over a year. He's about a size 10.5-11. His clothes are size 5-6. Kids are starting to comment here and there. ("Who's baby flip-flops are these? They must be the toddler's!" "He wears size 4???!!!!")

I am reluctant to take him off gluten and see. He's a fauxgetarian (chicken wings and turkey dogs somehow aren't meat? whatever!), and unless I could tell him that he needed to eat meat (even grass-fed meat!) for medical reasons, he would not. He is the kid who will eat brownies, etc. without asking. So, again, I wouldn't be able to control him at every moment unless I had his buy-in due to his health. At day camp, for instance, he eats bread and pasta for lunch every day. At home, he eats fruits and vegetables as well. Control will be easier during the school year. But, even then, I'd rather know for sure then not know.

The way we left it at his 7yo appointment was a weight and height check two months later. We're supposed to feed him more--he eats what he wants as he's always done--sometimes more, sometimes less. Luckily, he's always loved avocado. Even if he grows, though, he still won't have grown enough in that particular year (he'd have to grow a lot to make up for it). He looks good (i.e., healthy) so no one thinks that it's a endocrine problem. I suppose it could be a constitutional growth delay, but (and I could be wrong), I thought that meant he would have just dropped to a much lower curve than he used to be on? Not that he would keep dropping.

Thank you!

[LilOneHasGI]

Has he been tested for fructose malabsorption and small intestine bacterial overgrowth by hydrogen breath test?

[nicolebeth]

No he wasn't tested. They made it sound like there was only a test for lactose intolerance. Would these other issues also contribute to delayed growth?

[Mom2J112903]

ANY malaborsoption (I know I most likely totally fudged that spelling, sorry!) problem can cause growth delays.

There are SO many different GI tests that could be done to see if there is something else going on.

Have they done a bone growth x-ray yet?

[1974girl]

My dd didnt grow her kindergarten year. I noticed the curve was down. She went from 50% to 21%. They found she was hypothyroid. (celiac diagnosis was negative at that time but positive 4 years later). So I'd have the thyroid panel done.

[nicolebeth]

ANY malaborsoption (I know I most likely totally fudged that spelling, sorry!) problem can cause growth delays.

There are SO many different GI tests that could be done to see if there is something else going on.

Have they done a bone growth x-ray yet?

They didn't do a bone growth x-ray. The hope was that he found his curve last year. But, this year, it's been pretty apparent he's just not growing a lot. (I think he grew only two inches?) I read about that--that's one way to determine if might just be a late bloomer? There is some evidence of that in the family (my dad was 6'1", but was shorter than his 5'4" or so older sister when he was 13). Our concern again has been that he keeps dropping off his own curve. There was mention that we should see endocrinology if that continued to happen. (Our pediatricians do not suspect anything serious; one of them was certain there would be no celiac back in 2010, and the other one seems to think there will be no endocrine issue. I hope not!)

I didn't realize that a carb malabsorption could contribution to growth delays as well. They seemed to minimize it--even at Children's. They unenthusiastically offered us a day-long lactose intolerance test, and that is still a food he's never complained about after eating.

[nicolebeth]

My dd didnt grow her kindergarten year. I noticed the curve was down. She went from 50% to 21%. They found she was hypothyroid. (celiac diagnosis was negative at that time but positive 4 years later). So I'd have the thyroid panel done.

That's interesting! (I'm hypothyroid, but under treated, I gain weight--I didn't realize it was different in kids.) They tested for many things back then, and I'll have to check on thyroid. When we go back for the weight check next month, we will ask for a complete thyroid panel along with everything else. Thank you!

My son is probably around the 10th in weight and the 3rd in height (he was in the 5th last year). He was never very tall, but his infant/toddler height and weight were in the 50th and 90th (or something like that).

[Mom2J112903]

2" of growth in a year is average. My son's bone growth x-ray was taken when he didn't grow *at all* in approx a 12 month time frame. He was found to have a 25 month bone growth delay but interestingly enough he had been fairly average in height until his GI system started to really show what it can not do. He is now 100% g-tube fed (his entire GI system is dysfunctional) and finally catching up to his peers. Still a tiny man but finally growing

The Pedi never thought anything of my son's growth OR GI issues but yeah, I just love the look on their face when they read the reports from the GI. We *adore* our GI and wouldn't know where we would be without him.

[nicolebeth]

2" of growth in a year is average. My son's bone growth x-ray was taken when he didn't grow *at all* in approx a 12 month time frame. He was found to have a 25 month bone growth delay but interestingly enough he had been fairly average in height until his GI system started to really show what it can not do. He is now 100% g-tube fed (his entire GI system is dysfunctional) and finally catching up to his peers. Still a tiny man but finally growing

The Pedi never thought anything of my son's growth OR GI issues but yeah, I just love the look on their face when they read the reports from the GI. We *adore* our GI and wouldn't know where we would be without him.

I'm glad you found your GI--he sounds wonderful! And it sounds like your son has improved a lot under his care, too! Sorry to hear that your pedi was so unhelpful.

I did read that 2 inches is normal, and appreciate that. (I guess the drop in both curves is the problem.)

[Roda]

Sounds a lot like my oldest boy. He has never had any bloodwork(multiple times over the last 4 years) show positive and is NOT IgA deficient. He had a negative scope/biopsy as well.

He was normal weight and height when born. By the time he was 12 months old he had dropped considerably on his growth and weight gain. Suffered constipation since the day he was born. Was put on miralax at 2 years old after many doctor visits and barium enema x-ray later. He was always small but stayed consistent on "his" growth pattern so we didn't worry. I started to get really concerned when he was in 4th grade when I started noticing he had started to fall on his chart for two years. It was around when his younger brother was diagnosed with celiac that I started to get concerned. His brother was always small also and within 3-4 months he had a growth explosion.(he grew 4" + the first year after going gluten free) He didn't grow any his 4th grade year and was almost the smallest kid in the entire grade of 60 students. His symptoms at the end of that school year were constipation, abdominal pain/bloating, gas pains, nausea and occasional reflux. That summer I decided to consult with a GI to see about getting him scoped.

He went gluten free after his scope for a trial of three months. All his symptoms went away, his color was better and he gained 6# in 1.5 months. He has started to grow also and has gained a few inches, but he still grows slow but I think that is just him. He decided after trying gluten again gluten after the three months to stay gluten free because of all the benefits he saw and that he felt better too. If he gets glutened he gets terrible stomach pain/bloating.

The bone age x-ray and a thyroid panel are good suggestions. My oldest son has had his thyroid checked but not a bone age study yet. I want to see how much he has grown first since his last physical and go from there. He is 11.5 now and going into 6th grade. As far as clothing goes, on average he wears a 10 slim in pants and a 10-12 in shirt.

[October3]

Re: your initial question about extended BF - I have nothing scientific to give you, but I will say that I also extended BF my DS to age 5 (he is also 7 now). Although he clearly had food intolerance issues from very early on (about 3 weeks) and malabsorption also from infancy his scope in Jan of 2011 was considered normal. I would have thought that being symptomatic that long would surely mean a positive scope if celiac disease was actually the issue and so after the negative scope I spent a long time thinking it had to be something else. When I couldn't find any other explanation (and in his case we did have a positive tTG) I took him to a celiac clinic out of town and after they thoroughly reviewed his case they thought it was suspicious enough to eliminate gluten. And it now appears he is getting better. So it seems that most likely he does have celiac disease after all. In my mind I am convinced that the extended BF'ing probably did provide some protection against damage in his GI system and maybe was the reason his scope was negative all those years after he seems to have developed clear symptoms. Who knows. But I think it probably made harder to diagnose.

[StephanieL]

Does anyone know whether extended breastfeeding (and I mean until age 5) can actually cause endoscopies and blood work to appear normal?

As to this question, I don't think anything can cause normal blood work except a lack of a problem. As for everything else, is your child following his curve? Cause that is more important than any chart. The growth charts they use are old, outdate and based on formula fed kids. Maybe get a hole of the WHO growth charts and see where your child falls on it?

[Sesara]

I would just like to add that I think the protective effects of breastmilk are probably capable of supressing some of the symptoms. My DS was virtually exclusively breastfed until his molars finally came in around 15 months, though he probably had wheat introduced close to 9 months in the form of a cracker or cheerio here or there. Gluten products in small amounts were some of the only foods I could get him to eat early on. Once his molars came in, he started eating a lot more food, and at the same time, I started producing a lot less milk as I had become pregnant, so he was eating a diet containing plenty of wheat foods and other food from 16-18 months. By 18 months, I had very little milk left and that is when his chronic diarrhea first appeared.

His sibling will be born in the next few weeks and as he has never weaned, we'll go back to tandem nursing. I'm hoping that we'll see a renewal in digestive benefits as he starts getting decent amounts of breastmilk, and that this will outweigh the secondary lactose intolerance that he's developed.

[nicolebeth]

As to this question, I don't think anything can cause normal blood work except a lack of a problem. As for everything else, is your child following his curve? Cause that is more important than any chart. The growth charts they use are old, outdate and based on formula fed kids. Maybe get a hole of the WHO growth charts and see where your child falls on it?

Oh, I'm concerned only with the curve. I know on normal charts he was considered obese as a one-year-old. On the breastfed chart, he was in average range (if at the upper end). Again, it's definitely all about the curve here--whichever one we use, he's dropped.

[nicolebeth]

Sounds a lot like my oldest boy. He has never had any bloodwork(multiple times over the last 4 years) show positive and is NOT IgA deficient. He had a negative scope/biopsy as well.

He was normal weight and height when born. By the time he was 12 months old he had dropped considerably on his growth and weight gain. Suffered constipation since the day he was born. Was put on miralax at 2 years old after many doctor visits and barium enema x-ray later. He was always small but stayed consistent on "his" growth pattern so we didn't worry. I started to get really concerned when he was in 4th grade when I started noticing he had started to fall on his chart for two years. It was around when his younger brother was diagnosed with celiac that I started to get concerned. His brother was always small also and within 3-4 months he had a growth explosion.(he grew 4" + the first year after going gluten free) He didn't grow any his 4th grade year and was almost the smallest kid in the entire grade of 60 students. His symptoms at the end of that school year were constipation, abdominal pain/bloating, gas pains, nausea and occasional reflux. That summer I decided to consult with a GI to see about getting him scoped.

He went gluten free after his scope for a trial of three months. All his symptoms went away, his color was better and he gained 6# in 1.5 months. He has started to grow also and has gained a few inches, but he still grows slow but I think that is just him. He decided after trying gluten again gluten after the three months to stay gluten free because of all the benefits he saw and that he felt better too. If he gets glutened he gets terrible stomach pain/bloating.

The bone age x-ray and a thyroid panel are good suggestions. My oldest son has had his thyroid checked but not a bone age study yet. I want to see how much he has grown first since his last physical and go from there. He is 11.5 now and going into 6th grade. As far as clothing goes, on average he wears a 10 slim in pants and a 10-12 in shirt.

Thanks for the story about your sons. I thought my son would be unwilling to be gluten-free, but he actually is willing. If blood work is again normal, we will try it. (My 10yo is constipated, too; we've avoided miralax, barely. All her tests were normal as well. It's good to be normal! But, we just don't know what causes the constipation. Our current thinking is soy intolerance since our youngest seems to have obvious issues with soy as well.) We will also do the bone age x-ray and thyroid panel as mentioned by pp above.

[nicolebeth]

Re: your initial question about extended BF - I have nothing scientific to give you, but I will say that I also extended BF my DS to age 5 (he is also 7 now). Although he clearly had food intolerance issues from very early on (about 3 weeks) and malabsorption also from infancy his scope in Jan of 2011 was considered normal. I would have thought that being symptomatic that long would surely mean a positive scope if celiac disease was actually the issue and so after the negative scope I spent a long time thinking it had to be something else. When I couldn't find any other explanation (and in his case we did have a positive tTG) I took him to a celiac clinic out of town and after they thoroughly reviewed his case they thought it was suspicious enough to eliminate gluten. And it now appears he is getting better. So it seems that most likely he does have celiac disease after all. In my mind I am convinced that the extended BF'ing probably did provide some protection against damage in his GI system and maybe was the reason his scope was negative all those years after he seems to have developed clear symptoms. Who knows. But I think it probably made harder to diagnose.

Thanks for responding--I don't know too many people who have kids with food issues who've breastfed that long. He spit up a lot (projectile vomiting), which could have been due to oversupply. He also had five loose bowel movements a day until at least 18 months (or longer), possibly.

My son's tests were normal, but I guess low IgA would affect the tTG IgA (but the endomysial was also normal). He didn't have the newest test--DGP?

We may try eliminating gluten and seeing what, if anything, that does for him if we once again have no reason for his slowed growth.

[nicolebeth]

I would just like to add that I think the protective effects of breastmilk are probably capable of supressing some of the symptoms. My DS was virtually exclusively breastfed until his molars finally came in around 15 months, though he probably had wheat introduced close to 9 months in the form of a cracker or cheerio here or there. Gluten products in small amounts were some of the only foods I could get him to eat early on. Once his molars came in, he started eating a lot more food, and at the same time, I started producing a lot less milk as I had become pregnant, so he was eating a diet containing plenty of wheat foods and other food from 16-18 months. By 18 months, I had very little milk left and that is when his chronic diarrhea first appeared.

His sibling will be born in the next few weeks and as he has never weaned, we'll go back to tandem nursing. I'm hoping that we'll see a renewal in digestive benefits as he starts getting decent amounts of breastmilk, and that this will outweigh the secondary lactose intolerance that he's developed.

Thank you, this is what I was thinking, too, about the protective effects of breastmilk. I've read the article that breastfeeding can delay the onset of celiac disease (or perhaps prevent it), but I wasn't sure if that was still the case after solid food introduction (though, I suppose even with a very young baby, there is still exposure via the milk). Also, I wasn't sure about whether the breastfeeding could affect the results of an endoscopy (by, perhaps, preventing actual damage from occurring).

Good luck with the rest of your pregnancy and tandem nursing!

[1974girl]

To answer about hypithyroid. It is different in kids. My pediatrician said that people bring in their overweight children all the time and demand their thyroid be tested. She said she knows if they have normal height then it probably isn't that. Growth is a big sign in kids.

[Sesara]

Thank you, this is what I was thinking, too, about the protective effects of breastmilk. I've read the article that breastfeeding can delay the onset of celiac disease (or perhaps prevent it), but I wasn't sure if that was still the case after solid food introduction (though, I suppose even with a very young baby, there is still exposure via the milk). Also, I wasn't sure about whether the breastfeeding could affect the results of an endoscopy (by, perhaps, preventing actual damage from occurring).

Good luck with the rest of your pregnancy and tandem nursing!

Thank you so much. I guess I should add that my DS has no official diagnosis at present, as his intestines appeared "normal" in the endoscopy and only showed elevated lymphocytes, and his antibody tests have come back normal. I do think that the time frame for his damage to occur wasn't long enough for them to see any sort of villous atrophy like they were looking for in part because he only really stopped getting breastmilk altogether about 3 months ago, when my supply switched exclusively to colostrum...right before we started the testing.

We have the same growth curve issues as you seem to, though on a smaller scale. At 6 months, DS was in the 90th percentile for height and 80th percentile for weight. At 18 months, he was in the 50th percentile for height and 8th percentile for weight. Now, at almost 2, he is in the 25th percentile for height and the 2nd percentile for weight. I'm sure that his malaborption issues started between 6-9 months, but he also crawled and walked in that time frame, so it's harder to "prove". I desperately want to get him absorbing again so that he can do some catch up growth. The one thing that sustains me is knowing that his head growth has stayed on curve - even with fat malabsorption, his body is directing what fat he does get to where he needs it most. But it is very frustrating. I hope you get some answers soon.

[October3]

Thank you so much. I guess I should add that my DS has no official diagnosis at present, as his intestines appeared "normal" in the endoscopy and only showed elevated lymphocytes, and his antibody tests have come back normal. I do think that the time frame for his damage to occur wasn't long enough for them to see any sort of villous atrophy like they were looking for in part because he only really stopped getting breastmilk altogether about 3 months ago, when my supply switched exclusively to colostrum...right before we started the testing.

We have the same growth curve issues as you seem to, though on a smaller scale. At 6 months, DS was in the 90th percentile for height and 80th percentile for weight. At 18 months, he was in the 50th percentile for height and 8th percentile for weight. Now, at almost 2, he is in the 25th percentile for height and the 2nd percentile for weight. I'm sure that his malaborption issues started between 6-9 months, but he also crawled and walked in that time frame, so it's harder to "prove". I desperately want to get him absorbing again so that he can do some catch up growth. The one thing that sustains me is knowing that his head growth has stayed on curve - even with fat malabsorption, his body is directing what fat he does get to where he needs it most. But it is very frustrating. I hope you get some answers soon.

I believe elevated lymphocytes can be present on scope in breastfed children because they are breastfeeding and not as an indication of anything abnormal, for what its worth. I couldn't confirm that on a quick Google serach but from memory that's what I recall. Not sure how long they stick around after a child is weaned.

[justlisa]

Interesting discussion... I am curious though about the "protective benefits" of breastfeeding in relation to celiac/gluten intolerance.... I was under the impression that gluten would be present via the breastmilk...???

[Mom2J112903]

Interesting discussion... I am curious though about the "protective benefits" of breastfeeding in relation to celiac/gluten intolerance.... I was under the impression that gluten would be present via the breastmilk...???

Unless Mom is gluten free, gluten will be passed via breastmilk you are correct.

[justlisa]

Thanks Mom2... So, my next question is for the moms above... Were you gluten free while breastfeeding?

[nicolebeth]

Thanks Mom2... So, my next question is for the moms above... Were you gluten free while breastfeeding?

Good question. I was not gluten free--there was no reason to think I should be at the time. (There were pockets of time when was I gluten-free as I've suspected that I have some level of gluten intolerance--but it never seemed to stick, though it has for the last three months, not that it's relevant to your question!)

So, I know that my son was exposed to gluten, both through my breastmilk and through what he was eating (though, he didn't eat much besides avocado between six months and a year). What I wondered was whether the properties of breastmilk could cause the GI system to look normal on a scope (even if things like slowed growth and frequent loose stools were apparent). The question of my son nursing never came up with the GI docs since it would never have occurred to them to think a child his age was still nursing.

[StephanieL]

I asked Dr Fassano about this. He said unless there are actually signs of an issue that the benefits of breast feeding outweigh what gluten gets through.