4 Month Old - Questions...

[JELCrawford]

Hi all - I am new to the board and am looking for info relative to my son, who is 4 months old. He is exclusively breastfed and I follow a dairy free diet as his older brother had dairy intolerance to about 2.5yrs of age, as such the dietitian recommended that I go dairy free again in the last month of pregnancy. My youngest has reflux (as did his brother, who is now fine) which is treated, and his actual vomiting has really improved in the past 2 months - though he still spits up occasionally and has fairly frequent boughts of 'silent reflux'. His weight gain was great in the first month, but has slowly dropped to the point now where we have gone from just below the 50th percentile for weight to now below the 5th. In the past month he has become increasingly fussy (if you count screaming for 30 -minutes to an hour, sometimes several times a day fussy!) He will wake up from evening sleep screaming and is often inconsolable. A few times we have given him tylenol as it seems like pain, and he does seem better in these cases - though it is nit a real 'solution to the problem. He is a great night time sleeper, and has been since birth. He feeds every 2 to 3 hours between 5 or 6am and 9pm. Bowel movements have always been very loose, but he is breast fed, so this whas been chalked up to that. The distressed behaviour is concerning as it is out of character - mostly he has been a very content and happy baby (in contrast to my older higher strung son). Due to weight gain concerns, our GP ordered blood work, and my youngest came back with low hemoglobin and the dr has recommended iron supplementation. We have a pediatric appt on Thursday and I know one of the questions is if he has celiac. I also understand from reading, that there are few tests which are reliable in this age group.

Have any of you had similar experiences? While I don't relish the idea of gluten free on top of dairy free, maybe that is the only option - your folks thoughts about this would be appreciated. Also, anyone have similar experiences with one chil having a dairy intolerance and the relationship to other intolerances in a second child?Any recommendations for questions to put to the pediatrician?

Thanks in advance

[elle's mom]

Hi all - I am new to the board and am looking for info relative to my son, who is 4 months old. He is exclusively breastfed and I follow a dairy free diet as his older brother had dairy intolerance to about 2.5yrs of age, as such the dietitian recommended that I go dairy free again in the last month of pregnancy. My youngest has reflux (as did his brother, who is now fine) which is treated, and his actual vomiting has really improved in the past 2 months - though he still spits up occasionally and has fairly frequent boughts of 'silent reflux'. His weight gain was great in the first month, but has slowly dropped to the point now where we have gone from just below the 50th percentile for weight to now below the 5th. In the past month he has become increasingly fussy (if you count screaming for 30 -minutes to an hour, sometimes several times a day fussy!) He will wake up from evening sleep screaming and is often inconsolable. A few times we have given him tylenol as it seems like pain, and he does seem better in these cases - though it is nit a real 'solution to the problem. He is a great night time sleeper, and has been since birth. He feeds every 2 to 3 hours between 5 or 6am and 9pm. Bowel movements have always been very loose, but he is breast fed, so this whas been chalked up to that. The distressed behaviour is concerning as it is out of character - mostly he has been a very content and happy baby (in contrast to my older higher strung son). Due to weight gain concerns, our GP ordered blood work, and my youngest came back with low hemoglobin and the dr has recommended iron supplementation. We have a pediatric appt on Thursday and I know one of the questions is if he has celiac. I also understand from reading, that there are few tests which are reliable in this age group.

Have any of you had similar experiences? While I don't relish the idea of gluten free on top of dairy free, maybe that is the only option - your folks thoughts about this would be appreciated. Also, anyone have similar experiences with one chil having a dairy intolerance and the relationship to other intolerances in a second child? Any recommendations for questions to put to the pediatrician?

Thanks in advance

Hello and welcome. Your four month old's steady decline in growth curve reminds me exactly of my youngest daughter when she was a baby. She was 50th at birth and steadily went down to about 5th by the time I decided to just try gluten free, she was also exclusively breastfed. After I went gluten free, in ONE MONTH she went back up to 50th! I was stunned, amazed, ecstatic all at the same time. She went from "fussy" as you said it, spitting up, loose stools etc. to content, happy, peaceful, and easy. I would say just try it, there are so many false negatives in the testing in infants. We never had our youngest blood tested at that time, we opted for doing the genetic test only, which was positive. She has been gluten free ever since. It's a personal decision though. It depends on your doctor, but most don't know anything at all about this subject, so you need to be your son's advocate, do not rely on the doctor if at all possible. Good luck.

[scarlett77]

It certainly wouldn't hurt for you to go gluten free and see if there is a difference. That is probably what I would do. My son was a bit older when he started his decline (9months). He was 90% at birth and then at 9 months he dropped down under 50%. By 15 months he was at 10% and then at his 18month check up he lost a pound. We did a weight check 2 months later and he was under 3% for height and weight so we were referred to a GI. He finally got diagnosed about a month before his 2nd birthday. Now the concern/question is whether or not my youngest son has it. Our GI doc says she will not test him until after 18 months (he is currently 15 months). I'm not sure if that is because it is unreliable or if it is because he isn't actively exhibiting symptoms. We are still debating on getting him tested anytime soon though. We decided that at the entire household would go gluten free (at least at home) to reduce possibility of cross contamination. Maybe when he gets a bit older will we consider changing that, but right now he still doesn't understand how or why he can't have certain things.

You could all get tested a blood test to see if anyone in the family tests positive. If anyone else shows positive then it will be likely that her result (if positive) is correct.

[JELCrawford]

It certainly wouldn't hurt for you to go gluten free and see if there is a difference. That is probably what I would do. My son was a bit older when he started his decline (9months). He was 90% at birth and then at 9 months he dropped down under 50%. By 15 months he was at 10% and then at his 18month check up he lost a pound. We did a weight check 2 months later and he was under 3% for height and weight so we were referred to a GI. He finally got diagnosed about a month before his 2nd birthday. Now the concern/question is whether or not my youngest son has it. Our GI doc says she will not test him until after 18 months (he is currently 15 months). I'm not sure if that is because it is unreliable or if it is because he isn't actively exhibiting symptoms. We are still debating on getting him tested anytime soon though. We decided that at the entire household would go gluten free (at least at home) to reduce possibility of cross contamination. Maybe when he gets a bit older will we consider changing that, but right now he still doesn't understand how or why he can't have certain things.

You could all get tested a blood test to see if anyone in the family tests positive. If anyone else shows positive then it will be likely that her result (if positive) is correct.

Thanks for the replies so far - as our peds appt is so soon, I will talk things over with him - I'm thinking I will try gluten free regardless - any notions how long I should go gluten free to see changes??(if I'm going to...)

Thanks again!

[tarnalberry]

You mention that your 4mo old still shows silent reflux symptoms - regardless of pursuing a celiac diagnosis, you may want to adjust how you're handling the reflux to treat it. My daughter (almost 8 weeks) seems to have mild, silent, reflux. It didn't look like it was causing her much trouble, and she's been gaining weight just fine. BUT! The silent reflux was causing her to swallow a lot of air (when she was swallowing back down acid), and that led to a lot of intestinal distress (the random, "I'm in pain" crying here and there - sometimes for hours, but moving her around helped for brief moments). For her, this was causing a lot of intestinal gas (she's not a burper - in fact, we no longer burp her because it makes the reflux worse; breastfed babies are routinely NOT burped in other cultures, and she does better without it). (And the other regular measures - no extra pressure on the tummy after feeding, keep her upright or at least inclined (not on her back/stomach) after feeding and during sleep if necessary, no particularly fast/jarring movements after eating, eliminating other often problematic foods from my diet like caffeine (tea), chocolate, cruciferous vegetables, cabbage, onions. (Of course, dairy is the biggest impact to reflux, and you've already eliminated that.))

Do you know how much he's getting in a feeding (you can get a scale and weigh him before and after a feeding)? It's possible that, if he's associated eating with pain, he's not effectively feeding right now.

[JELCrawford]

You mention that your 4mo old still shows silent reflux symptoms - regardless of pursuing a celiac diagnosis, you may want to adjust how you're handling the reflux to treat it. My daughter (almost 8 weeks) seems to have mild, silent, reflux. It didn't look like it was causing her much trouble, and she's been gaining weight just fine. BUT! The silent reflux was causing her to swallow a lot of air (when she was swallowing back down acid), and that led to a lot of intestinal distress (the random, "I'm in pain" crying here and there - sometimes for hours, but moving her around helped for brief moments). For her, this was causing a lot of intestinal gas (she's not a burper - in fact, we no longer burp her because it makes the reflux worse; breastfed babies are routinely NOT burped in other cultures, and she does better without it). (And the other regular measures - no extra pressure on the tummy after feeding, keep her upright or at least inclined (not on her back/stomach) after feeding and during sleep if necessary, no particularly fast/jarring movements after eating, eliminating other often problematic foods from my diet like caffeine (tea), chocolate, cruciferous vegetables, cabbage, onions. (Of course, dairy is the biggest impact to reflux, and you've already eliminated that.))

Do you know how much he's getting in a feeding (you can get a scale and weigh him before and after a feeding)? It's possible that, if he's associated eating with pain, he's not effectively feeding right now.

Hey Tiffany - thanks for the comments and good suggestions. We are followed by a physician who specializes in lactation at a breastfeeding clinic, so they regularly weigh son #2 after feeding and feel that his intake is good (avg 120mls per feeding). He feeds approximately every 2 to 3 hours during the daytime and for the most part seems to feed pretty well, though he is starting to get more and more interested in his environment, which sometimes disrupts the feeding process. We do all the things you have suggested about the reflux, plus he is on losec (a proton pump inhibitor) to manage the acid production. We started out on Zantac, but he got quite a bad rash from it, so had to go the second line of defense (so to speak). Son #1 also had reflux and took medication until he was 2.5 years old - he was also dairy intolerant and not a really great weight gainer, though better than son #2 - he has now grown out of all his troubles and is thriving, though he still tends to skinny, but not concerningly so. Son #2 actually has less obvious troubles with reflux than son #1 did, though as I said silent reflux (ie not actually vomiting) is still present (and was also present for #1 throughout, in addition to regular vomiting by son #1 to 2.5 years of age). Son #2 started out heavier than son #1 was (I realize you can't completely compare..) and now weighs less at the same age than son #1 did, though only by about 1/2 a pound. Son #1 never had a problem with iron absorption though, which has prompted the doc to wonder about celiac (or some other malabsorption type disorder - though she didn't mention any other than celiac) with son #2. We have no family history of celiac, though my younger brother had a lot of GI issues when he was a toddler and had a biopsy for celiac which was negative, though this was 35 years ago though, and I'm sure things are different now with diagnosis and such.

Anyhow - it is a bit of a puzzle - the iron deficiency is quite uncommon in under 6mos olds, so that is a bog contributor to everyone's concern. I do thank folks for their suggestions and comments, it helps me worry less to 'talk' about things!

Cheers!

[scarlett77]

I'm not sure if this is helpful to you but my son's symptoms were not obviously Celiac. His stools weren't loose because he also had thyroid issues that were causing constipation. His iron was incredibly low when we ran the first blood panel. The doc put him on iron drops as well as vitamin drops w/iron. Even now it is hard to tell if he has had an accidental glutening. I found that with him all his reactions seem to present themselves as iron deficiency: tired, sleeping a lot, pale skin, cold hands, excessive sweating, dark stool, and sometimes shortness of breath. Sometimes it takes a little time before the symptoms are noticeable so it is hard to tell if it was a one time accident or if there is something I am giving him. This is how we figured out about McD's fries. He can't tolerate them even though some Celiacs can.

[elle's mom]

any notions how long I should go gluten free to see changes??(if I'm going to...)

Thanks again!

I noticed a change within a week of going gluten free with my daughter. She was 80% better when I also went dairy free and within a day or two, she was 100%. I challenged this a handful of times and her reaction to my having gluten was always four days later, but with dairy it was within a day.

[tarnalberry]

That's awesome that you guys have been so thorough on the reflux end of things. If you think gluten *could* be a problem, give it a try eliminating it. (My midwives noted that wheat is the other thing besides dairy that can cause reflux and GI distress in babies; we didn't think too much about it since I'm already Gluten-free Casein-free.) I'd certainly give it at least two weeks (though you might see some improvement sooner, of course). Ordinarily, I would recommend challenging it - reintroducing gluten after you've been gluten-free for at least two weeks - but oh goodness do I know the paranoia that comes with risking a cranky baby, so I can only say to trust your instincts on whether you stay gluten-free, do a challenge, or drop the diet.

[JELCrawford]

That's awesome that you guys have been so thorough on the reflux end of things. If you think gluten *could* be a problem, give it a try eliminating it. (My midwives noted that wheat is the other thing besides dairy that can cause reflux and GI distress in babies; we didn't think too much about it since I'm already Gluten-free Casein-free.) I'd certainly give it at least two weeks (though you might see some improvement sooner, of course). Ordinarily, I would recommend challenging it - reintroducing gluten after you've been gluten-free for at least two weeks - but oh goodness do I know the paranoia that comes with risking a cranky baby, so I can only say to trust your instincts on whether you stay gluten-free, do a challenge, or drop the diet.

Hi all - thought I'd update my post. The pediatrician does not think wheat/celiac is likely as he feels that, given that my son is only breastfed, he has no exposure and therefore can't be responding (I know, there is considerable controversy about this). We had a much less fussy week last week, but are back to the screaming again the past few days, which is so out of character and seems like something is hurting. So, I am going to give the gluten free diet a try for a few weeks (in addition to the dairy free) and see if it makes a difference - we are concerned about the seeming distress and are not sure what else it can be. The distress reminds us very strongly of our other son's issues before I eliminated dairy, so we do wonder if it isn't dietary related (leading us to the gluten concerns). Also, no real explanation about the iron, just the instruction to supplement.

Anyhow, thanks again for all your posts - hopefully an elimination round will give us an answer one way or the other.

[frieze]

there is debate whether gluten will pass into breast milk...if you find your experiment is successful, i would wonder if it wouldnt prove that YOU should be gluten free? If it is passing through your breast milk, it has to be making its way into your blood stream, a state i would think that is not normal. On the other hand, what about your personal care product? what do you use for bathing, shampooing etc? He may be picking up gluten from you skin....good luck

[elle's mom]

there is debate whether gluten will pass into breast milk...if you find your experiment is successful, i would wonder if it wouldnt prove that YOU should be gluten free? If it is passing through your breast milk, it has to be making its way into your blood stream, a state i would think that is not normal.

Interesting comment...another thought along those same lines is that the baby may be reacting to mother's antibodies to gluten which are passing into the milk, not to gluten itself. Although my one daughter was actually diagnosed celiac, I am not and neither were any of our other children. I was not gluten free when breastfeeding my two fussy babies and to this day I really don't know if my babies were actually reacting to gluten itself which was getting into my milk OR to my antibodies (as I later tested sensitive through enterolab). The bottom line is that trying the diet will either help considerably or not. Please keep us posted.