Do you think this is reflux?

[Anonymous]

My oldest son (now 6) was on Nutramagin from almost birth. We would lay him down and he would cry. He never required meds, and out grew it.

Then I had a preemie. He was miserable from the day he was born. I made the pedi send me to the GI, since we couldn’t do ANYTHING without crying in pain. We had severe silent reflux, but because he wasn’t “spitting”, my pediatrician didn’t want to do anything. He would only sleep for about 10 minutes at a time. Life was pretty miserable for EVERYONE. We couldn’t even put him in the car seat, because the angle just hurt his belly. I let him sleep in my bed from the day he was born. He had sleep apnea from the reflux. 4 years later he is still in my bed.

About a year ago, we learned that I have Celiac, as well as my dad. I think my middle son has it, but they don’t want to test him yet. They wanted me to do an elimination diet with him, but how do you tell a strong willed junk food junkie at 4 who can’t reason that he can’t have what he wants? It’s a constant battle.

Fast foward to about 2 weeks ago. I kept commenting on how well my newborn sleeps (was not used to that from the last child) I have an over supply of milk, as well as a forcefull let down. I use a sheild to help with the flow for him. He’s a great nurser, and has been since day one. He’s very gassy, but has been able to move the gas on his own. My family has commented that he is not a spitter like my past children. He has started to spit up every now and then, but I figured most babies spit up, and he didn’t seem upset, so I didn’t worry about it.

Then he started with the congestion. Both my other kids have colds, so my pediatrician said it was just a cold, and to raise the crib bed (he sleeps in the rock n play chair thing on an incline anyway) and use saline and the bulb sucker. I’ve been doing that. He only gets congested at night. I started wondering if the air conditioner was blowing on him, so DH and I rearranged the bedroom last night, and switch sides of the bed. Now the air is not blowing on him. He slept better last night, only waking every 3 hours or so. At night I lay him down and nurse him. I was watching him this morning, and after each nursing he was stuffy and gassy. Then when he was trying to clear the snot, milk was coming out of his nose.

My question is this : If he isn’t bothered by the spitting, but he has milk coming out of his nose, and he;s bothered by it, as well as the congestion, do I treat the reflux? My Pedi did mention that if he has heartburn to go with the spitting up, then we needed to medicated. How do I know if he has heartburn? My 4 year old knows to ask for a Tums. The baby can’t

Anyone have anything similar?

Thanks if your still reading

[hellbennt]

you’d know if it hurt- he’d howl/shriek/cry and be unconsolable…

I’d monitor for now…how are poops?

Reasons a breastfeeding mother might think her baby is reacting to something in her milk:

*poop that is not ‘normal’ mustardy yellow, seedy breastfed baby poop

*mucous in poop; mucous can look like: snot, jelly, cottage cheese, stringy like the inside of a banana

*foul-smelling poop

*stinky, foul-smelling painful gas

*straining and grunting to poop and, when baby finally does poop, it’s soft

[Anonymous]

we’ve had reflux and we have celiac. i’ll start with you’re middle son—-i think your doctor is an idiot to tell you to try an elimination diet. sorry for sounding so rude, but your son is old enough that he should most likely be producing Ttg antibodies. if you put your son on an elimination diet you could end up keeping him off of foods that he doesn’t need to be off of—that comes from dr. green, who is supposesd to be “THE” authority on celiac. the tests usually are not accurate in children under 3 years old because they don’t always produce the Ttg antibodies at that age–don’t know why. you need to make sure that the doc runs the right tests for celiac also. i have 3 girls with celiac disease and we have been doing gluten free for going on 6 years now. we were lucky enough to get in on a celiac study being done by the university of california,irvine—and they did not only celiac testing, but genetic testing on all of us—and it didn’t cost us anything. my husband and i and 8 of my 9 children all carry one of the main celiac genes—for some reason, the disease has only activated in the 3 girls so far—but i periodically have myself tested when i am having other blood work done—and i really should have everyone else periodically tested, too–but i don’t seem to get it done. we used to get the celiac girls’ blood tested every 6 months to see how well they were following the diet—but we haven’t had insurance for awhile. we get back on insurance on insurance oct 1, thank goodness. my twins both had reflux and were on meds until they had been gluten free for about a year—and then they were able to go off the meds. i would be willing to bet that if your baby has milk coming out of his nose that it probably burns like all get out. i’m surprised he isn’t fussy. sylvia had really bad reflux, but, she did not spit up very much the first couple of weeks–but she was a very fussy baby–and got fussier as time went on–and she also started to spit up more and more over time. we had to hold her almost 24 hours a day for about 2 months. if you are lying in bed and nursing your baby—and that is the only time he is getting stuffy, it sounds like it is probably being caused by the reflux—especially since you see milk coming out of his nose——i would want to treat the reflux if it were me—before he becomes really fussy.

it would be pretty hard to get a strong willed 4 year old to not eat things he wants when you can’t give him a reason why. if you get him tested, and it is positive, you can (try) to explain to him all of the problems that he could end up with if he doesn’t stay gluten free. if it comes back negative, you can either do allergy testing to see if something else is causing his symptoms, or you can wait a few more years and test him for celiac again. by the way, what is happening that makes you susprct he has celiac? all 3 of my girls had different symptoms–one of them actually didn’t even have any symptoms—except that she looked like an ethiopian child—but all of my kids are skinny, so i didn’t think too much of it—but i did have tonsils taken out of two of them because several people told me that as children they had been really skinny until they had their tonsils out–then they gained weight—the girls had large tonsils and swollen glands—so it seemed a reasonable thing to try.

we have been able to reproduce almost everything gluten free that we ate with gluten. we make muffins,pancakes, cookies,cake, soft thick pizza crust, fruit and cheese danish, even frog eye salad and sweet rolls. if you’re still figuring things out, let me know if you want any tips. we hardly even use the gluten free cookbooks, we use our old betty crocker recipes–or any recipe we find and want to try. my twins have become quite good cooks since 9th grade when they were diagnosed—good thing since they are both getting married before christmas!!!

[Anonymous]

kevieb wrote: we’ve had reflux and we have celiac. i’ll start with you’re middle son—-i think your doctor is an idiot to tell you to try an elimination diet. sorry for sounding so rude, but your son is old enough that he should most likely be producing Ttg antibodies. I agree with you 1000%.The problem is my husband and I don’t see eye to eye on the Gluten issue. Not even with me. if you put your son on an elimination diet you could end up keeping him off of foods that he doesn’t need to be off of—that comes from dr. green, who is supposesd to be “THE” authority on celiac. the tests usually are not accurate in children under 3 years old because they don’t always produce the Ttg antibodies at that age–don’t know why. you need to make sure that the doc runs the right tests for celiac also. i have 3 girls with celiac disease and we have been doing gluten free for going on 6 years now. we were lucky enough to get in on a celiac study being done by the university of california,irvine—and they did not only celiac testing, but genetic testing on all of us—and it didn’t cost us anything. my husband and i and 8 of my 9 children all carry one of the main celiac genes—for some reason, the disease has only activated in the 3 girls so far—but i periodically have myself tested when i am having other blood work done—and i really should have everyone else periodically tested, too–but i don’t seem to get it done. we used to get the celiac girls’ blood tested every 6 months to see how well they were following the diet—but we haven’t had insurance for awhile. we get back on insurance on insurance oct 1, thank goodness. my twins both had reflux and were on meds until they had been gluten free for about a year—and then they were able to go off the meds. I had extream reflux myself until I went GF. i would be willing to bet that if your baby has milk coming out of his nose that it probably burns like all get out. i’m surprised he isn’t fussy. As days go on, I see him getting more fussy ( he turned 4 weeks yesterday) sylvia had really bad reflux, but, she did not spit up very much the first couple of weeks–but she was a very fussy baby–and got fussier as time went on–and she also started to spit up more and more over time. we had to hold her almost 24 hours a day for about 2 months. if you are lying in bed and nursing your baby—and that is the only time he is getting stuffy, it sounds like it is probably being caused by the reflux—especially since you see milk coming out of his nose——i would want to treat the reflux if it were me—before he becomes really fussy. I go for the 1 month check up on Thursday. I think I am going to push the meds. I dont want a repeat of my middle child.

it would be pretty hard to get a strong willed 4 year old to not eat things he wants when you can’t give him a reason why. if you get him tested, and it is positive, you can (try) to explain to him all of the problems that he could end up with if he doesn’t stay gluten free. if it comes back negative, you can either do allergy testing to see if something else is causing his symptoms, or you can wait a few more years and test him for celiac again. by the way, what is happening that makes you susprct he has celiac? He had food allergies from the time he was born. He is in the 5th percentile for weight (both my kids are) he has the “buddah belly” He still has reflux, and I can tell he’s uncomfortable most of the time. He acts out at times, and I truly believe that it’s because he does not feel well. He has probablt never felt great, so he knows no different. He STILL has cradle cap at 4. He has very large “bulky” stools, and lots and lots of gas. He is also sick with some sort of URI, or ears every 2-3 weeks requiring antibiotics. He has been allergy tested twice and the first time he was positive for milk and eggs, and the second time he was negitive for everything. My oldest son, has the black eyes, extream gas, greenish stools (sometimes really soft) belly aches, and he is also in the 5th percentile. I brought up the weight thing on Friday (another sick visit for antibiotics) i asked him about pedisure. He recommended ice cream milk shakes every day for both of the kids to up the calories. I said I dont like to give them that much milk……and he told me to use another type. i dont know if i agree with that. all 3 of my girls had different symptoms–one of them actually didn’t even have any symptoms—except that she looked like an ethiopian child—but all of my kids are skinny, so i didn’t think too much of it—but i did have tonsils taken out of two of them because several people told me that as children they had been really skinny until they had their tonsils out–then they gained weight—the girls had large tonsils and swollen glands—so it seemed a reasonable thing to try.

we have been able to reproduce almost everything gluten free that we ate with gluten. we make muffins,pancakes, cookies,cake, soft thick pizza crust, fruit and cheese danish, even frog eye salad and sweet rolls. if you’re still figuring things out, let me know if you want any tips. we hardly even use the gluten free cookbooks, we use our old betty crocker recipes–or any recipe we find and want to try. my twins have become quite good cooks since 9th grade when they were diagnosed—good thing since they are both getting married before christmas!!!

My husband and i had a fight about the gluten thing yesrterday. I was tested a year ago, but negitive. I had been GF for 3 weeks prior to getting tested. We have no knowalagable Dr’s in the area that know what they are doing. I have a co worker that went to Italy to be diagnosed and treated. The Drs over here tell her she is negitive for celiac, but she has been GF for years.

We watched the Dr Oz show on gluten. My husband thinks it’s a “fad” and that i dont have an issue. He thinks that my issue is with pasta and bread (like him….) and that what he takes as feeling “gross” after he eats, i take as having my stomach hurt. I get blood in my stool and stuff when i eat gluten. He just doesnt get it and it really pisses me off. Because he can’t “see” an issue, that means its not there.

[Anonymous]

hellbennt wrote: you’d know if it hurt- he’d howl/shriek/cry and be unconsolable…

I’d monitor for now…how are poops?

Reasons a breastfeeding mother might think her baby is reacting to something in her milk:

*poop that is not ‘normal’ mustardy yellow, seedy breastfed baby poop It was in the begining. Now it’s turning green with not as many mustard seeds

*mucous in poop; mucous can look like: snot, jelly, cottage cheese, stringy like the inside of a banana We are starting to have mucus

*foul-smelling poop

*stinky, foul-smelling painful gas I have been giving mylecon just to sleep at night

*straining and grunting to poop and, when baby finally does poop, it’s soft It takes him a long time of pushing and crying to go

I had all these issues with my last son, but the poop turned bloody 🙁

[Anonymous]

if you were gluten free for 3 weeks before being tested, it could have screwed up your testing. you have to be eating gluten when you are tested for celiac disease. even a person with known celiac will test negative if they are following a strict diet. even dr green is now acknowleding that there is a gluten sensitivity that is not celiac disease. people are still bothered in various ways and get symptoms from eating gluten, but they don’t get the intestinal villi damage that a celiac will get. no one can digest gluten well for some reason, even if it doesn’t bother them—and we have messed with wheat so much to make the gluten content higher—-it is no wonder so many more paople are having gluten issues, whether it is true celiac or just a gluten sensitivity.

about the time my girls were diagnosed with celiac was when they were realizing that celiac was far more common than they thought. i don’t know if it was because of better tests for it or for some other reason. the Ttg test is a very reliable test. if you have a positive Ttg—you’ve got celiac. there are only two other things that can cause a positive Ttg—and they are both not very common. one of them is graft vrs. host disease–you would have to have had a transplant for that one—and i can’t remember the other one.

i remember a lady at church asking me if my girls got sick when they ate gluten. (her husband was a doctor) i told her that they didn’t (i actually think one of them will, if she eats enough)–anyway, she told me that if they didn’t get sick when they ate gluten that they might not have it because it was a really popular diagnosis at that time. i told her that my children had been tested with the Ttg test–plus, we could see their blood levels rise and fall depending on how well they were following the diet–not sure if i told her that. it really irritated me and i remember thinking, “no wonder people have a hard time getting a diagnosis.” i had mentioned the Ttg test to one of our doctors in town, after my girls were diagnosed, and he told me he had never heard of it. the AMA was working on getting the word out to doctors at the time, but i remember our ped gi telling me that most adult GIs did not use the Ttg test.

when we first went into our localhospital lab to have the test run–they had never heard of it and had to look it up. i learned of one other child in our town who had celiac and i called and talked to his mother. i had had my whole family tested when we suspected the first child of having it. at the time, even our ped GI wasn’t sure because the original test on her had been an EMA (i think?) which was positive, but her scope was really iffy, plus she had reflux damage. he told me that the test that had been run told him she had damage, but it didn’t tell him what was causing it. he wanted me to put her on prevacid to clear up the reflux damage and to leave her on gluten—then we would test again in 3 months. if it was reflux damage, her numbers would be normal, if it was celiac, her numbers would still be off. we had reached our stop-loss with our insurance, so since we didn’t have to pay anything for testing, we decided to go ahead and test several more family members. i chose myself,(i have fibromyalgia) one of my sons,(ian) one daughter that had been nauseated for several months,(kassie), and one of my daughters that was so thin her wrists looked like they would just snap and she had been really rashy as a toddler.(molly)

my test came back negative, ian’s test came back IgA deficient–so it was useless, kassie came back positive and molly came back positive. kassie had already had a scope that did not show any damage, by the way. when the ped GI saw the test results—3 children in the family with positive Ttgs, he told me to put them gluten free and didn’t even bother to do a scope on molly. we had to have different testing done on ian—and learned he carried one of the main genes, but did not show any signs of celiac. i then had the rest of the family tested, but no one else came back positive.

it was a little later when i ran across the celiac study being done and since we had two or more with positive tests, we were eligible for it. it saved us thousands of dollars on genetic testing and now we know that we should be tested periodically, and especially if anyone started to show symptoms. sylvia was having stomach aches and wretching episodes last spring (she can’t throw up because of her fundo) so the ped GI said we had to suspect celiac, and we tested her. she was negative, and the symptoms went away.

italy has a really high rate of celiac and they test all of their school children routinely at a certain age. the more i have learned about celiac, i wonder why it isn'[t tested for routinely by doctors in the states.

i would get frustrated after my girls were diagnosed because i felt like gluten free kind of became a fad for awhile and people were not understanding the difference between celiac disease and the gluten free fad–plus, it wasn’t being acknowledged yet that some people really did have a gluten sensitivity without having celiac disease. it was kind of helpful, though, too, because they started coming out with so many gluten free products.

i think the “fad” part of it is over. i’m not sure the docs still know enough about it and what kind of symptoms it can cause, and i’m not sure they know the right tests to do—-especially when i hear someone say that their doctor told them to go gluten free instead of testing them first.

i’ve rambled on and on, i know, but sometimes i just feel like people don’t understand gluten problems–or they don’t want to. our ped GI told me that going gluten free might help my fibro—but i still haven’t gone totally gluten free—i really should give it a good trial. we already cook all of our meals gluten free. i would only have to change my snacking and the bread i use for sandwiches.

the most accurate testing to have is to have a total IgA serum and a Ttg IgA test done–but you have to have been eating gluten for awhile when you get tested. sorry for the rambling, but, if you have been gluten free this long and know that you feel better—then you probably have celiac or a non-celiac gluten sensitivity—either way, it makes you feel lousy.

i expect to see it show up in some of our grandchildren since almost all of my kids carry one of the main gene.

[Anonymous]

i just realized you had inserted comments in your post!! low weight or short stature is reason enough, alone, to test for celiac. often, a child with celiac will develop lactose intolerance because of the damage to the villi—but once they go gluten free and the villi damage heals, the lactose intolerance will go away. i’d use the pediasure if they can tolerate it–i can’t remember if it is dairy free and gluten free—but that is how i got weight on sylvia when they were considering putting in a feeding tube.

with all the antibiotics they have been on–i’d put them on probiotics. sylvia got esophageal thrush when she was just a little over a year. my family doc said she couldn’t have thrush if we couldn’t see it in he mouth–but i knew better, and asked the ped GI. he agreed she could, and just treated her (he is 3 hours away) with a course of diflucan and she started to eat, sleep and gain weight. he said that he thought that any time she had antibiotics we should treat her with a course of diflucan afterwards. my daughter kassie also had esophageal thrush when she had her scope done at 14—and she had never had thrush in her mouth that we were aware of. just something more for you to consider……it really hurts—i had MRSA a couple of years ago and the antibiotics were so harsh that i got thrush in my mouth and esophagus.

[Anonymous]

I agree how frustrating it is. After my middle son was born, I had some health issues. I saw an endo, a gi, a neurologist, and my ob. The endo told me my thyroid was out of whack but not enough for meds, and basically I was over weight and that’s why my liver enzymes were high. The gi told me it was IBS and that I needed more exercise and water. The neurologist showed me positive for lupus, told me I was depressed, had fibromyalgia, and maybe chronic fatigue. She sent me to the sleep specialist who told me my tonsils and adenoids were enlarged. My gp put me on a med that is no longer on the market (it helped!) I met the girl at work who has celiac and I went gluten free. Everythig cleared up. My dh used to tell me that I would have to dig a hole in the back yard from now on since everytime I went to the bathroom I clogged it. I can always tell when i get gluten because that returns. When j don’t eat it I don’t have the problem.

No one around here understands gluten sensitive. Either you have celiac, or your ok with gluten. Makes diagnosing anything impossible. My dad is positive. My mom said she can trace my stomach issues back to when I was 3 weeks old. I had all the same things my middle son had. Rashes, acne, PMDD, panic attacks , major anxiety, etc.

I even told my pedi that I was positive for celiac just so he would take me seriously.

My husband on the other hand…… Just doesnt get it. He works a lot so I do all the cooking and shopping. It becomes A huge issue when he wants to go out and i pack my own food……

[Anonymous]

most places have a gluten free menu any more. when my twins were still in high school, i can remember them calling each other, when one would be on a sports trip and the other would be home, and asking the one at home to look up the menu of certain restaurants to see what their gluten free menu was. one of the coaches was really good and when they bought pizza for the team, he went out and bought salad for my daughter. he also taught one of her classes at school and when they were cooking some kind of chicken that had gluten in it—he made sure and cooked some chicken in a different way that was safe for her. he had taught health, so he knew what celiac disease was, which helped.

maybe you can find out what is safe to eat wherever you and your husband are going ahead of time, and not even mention it to him, then just order what you know you can eat and maybe he’ll never know the difference! i don’t know why men can be so stubborn about things some times!!!

sounds like you got quite the run around until you took things into your own hands. with your dad being positive and your history–you probably do have celiac—-your results were probably skewed by being gluten free for 3 weeks when you were tested.

[Anonymous]

My poor baby boy is getting worse and worse:-( trying to hang in there until my dr apt on Thursday. His poop is green and mucusy. Is that a good intolerance or reflux? My other son had it and had both. My little guy is so miserable. It’s coming out of his nose and mouth. Hrs spitting up with each nursing and just uncomfy:-(

[hellbennt]

Look for all posts by Erinntx! (be SURE to read her ‘sticky’ – the link is below)

here’s some more light reading for you :

MSPI ‘Main’ page:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2697

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

THIS IS REALLY IMPORTANT:

Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395

Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576

Great anne post: https://www.infantreflux.org/forum/forum_posts.asp?TID=9242

Exposure to foods & blood testing: https://www.infantreflux.org/forum/forum_posts.asp?TID=12993

Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638

Another Sheri explanation- intolerance/allergy post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442

Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815

(sue again, replying to gina- breastfeeding info to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

erin posts that mentions enzymes:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12781&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12610&KW=enzyme

https://www.infantreflux.org/forum/forum_posts.asp?TID=12227&KW=enzyme

Post from me:
https://www.infantreflux.org/forum/forum_posts.asp?TID=12200&KW=enzyme

[Author]

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