Breastfeeding..

[Mickide]

Ok, so this is probably not the right place to post this but the closest I am newly diagnosed and have been breastfeeding my 11 month old. She is "failure to thrive". Is this bc of my celiacs? I am concerned that I have ended up unknowingly deprived her. I wanted to give her the best start I could and now well.. little bummed at the idea that this is because of my decision. There is also the thought that she may have celiacs too but I am not jumping at the idea of having her tested. We are pushing lots of protein right now and and started a vitamin for her. Once I figure this whole new diet out I am planning on starting it for her also, which isn't major because I wasn't planning on introducing wheat until she was 1yr anyways.

[ItchyMeredith]

(((hugs)))

My first child is really thin and always has been. I was really concerned that my breastmilk didn

[Mickide]

Thanks for that! I needed to hear that.. I know I had heard that before about third world countries, just needed to hear someone else say it.

[Teacher1958]

Ok, so this is probably not the right place to post this but the closest I am newly diagnosed and have been breastfeeding my 11 month old. She is "failure to thrive". Is this bc of my celiacs? I am concerned that I have ended up unknowingly deprived her. I wanted to give her the best start I could and now well.. little bummed at the idea that this is because of my decision. There is also the thought that she may have celiacs too but I am not jumping at the idea of having her tested. We are pushing lots of protein right now and and started a vitamin for her. Once I figure this whole new diet out I am planning on starting it for her also, which isn't major because I wasn't planning on introducing wheat until she was 1yr anyways.

I had the symptoms of gluten intolerance while I breastfed, and my son was a very chubby, healthy baby who breastfed until he was 25 months old. He had a rough start in the NICU (fed breastmilk through a naso-gastric tube), but thrived after that. I really don't think it's anything you did. In fact, your little girl has probably gotten a nice collection of antibodies from you. Her failure to thrive is probably something to do with her own system. To be safe, maybe you should take her to a pediatric gastroenterologist so he can have a look at her.

[Fiddle-Faddle]

First of all--HOORAY that you have made such an effort to breastfeed, as that is nearly always the very best for baby.

Do you mind if I ask you for more information? I apologize if it seems like I am interrogating you! I have some suspicions as to what might be wrong, but I don't know enough of your situation yet.

How long have you had symptoms of celiac?

When was she diagnosed as "failure to thrive?" In the womb? At one month old? Just now at 11 months?

What has her growth/weight gain pattern been like? Do you know her height/weight percentiles from birth til now?

Has she eaten anything but your milk? If so, what and how much?

How often did you nurse her? Doctors have been suggesting breastfeeding every 2-3 hours for the last several decades--but recent research has indicated that that is not nearly enough for most mothers to get their milk supplies really well-established in the first few weeks and during growth spurt periods. Every 30-90 minutes seems to be what most women need to do during those "marathon" times.

And yes, if you have celiac, you likely have leaky gut, which means that YOU are not absorbing nutrients--so it's that much more difficult for your body to make milk. (You must be exhausted...)

[Mickide]

First of all--HOORAY that you have made such an effort to breastfeed, as that is nearly always the very best for baby.

Do you mind if I ask you for more information? I apologize if it seems like I am interrogating you! I have some suspicions as to what might be wrong, but I don't know enough of your situation yet.

How long have you had symptoms of celiac?

When was she diagnosed as "failure to thrive?" In the womb? At one month old? Just now at 11 months?

What has her growth/weight gain pattern been like? Do you know her height/weight percentiles from birth til now?

Has she eaten anything but your milk? If so, what and how much?

How often did you nurse her? Doctors have been suggesting breastfeeding every 2-3 hours for the last several decades--but recent research has indicated that that is not nearly enough for most mothers to get their milk supplies really well-established in the first few weeks and during growth spurt periods. Every 30-90 minutes seems to be what most women need to do during those "marathon" times.

And yes, if you have celiac, you likely have leaky gut, which means that YOU are not absorbing nutrients--so it's that much more difficult for your body to make milk. (You must be exhausted...)

No I don't mind the interrogation at all!!

First of all I didn't know I was having Celiac symptoms, I thought I was a mess from the pregnancy and postpartum. My dr became alarmed about 6 weeks ago when she noticed I have lost over 30lbs. I really had no idea, I have been in a fog, exhausted and generally haven't felt very good gosh since I had her. I had a very hard pregnancy with her and ended up on TPN (IV nutrition) for 6 months of the pregnancy due to hyperemesis among other issues. She did fine in was born in the 25% which we were happy with given my nutritional state. She did fine the first 6 months, stayed on her growth "curve". She has now "flat lined" on the chart and fallen completely off of it. I exclusively breastfed her until about 6.5 months when I began intoducing solids, veggies, fruits.. My mentality was this was an introduction of food not her main nutrition, that is what breastmilk is for. So I was not super aggressive about solids. She has not gained any weight in the past 5 months and actually has lost 1 ounce.

I have BF'd on demand from the first day. I know women who schedule nurse and that just doesn't work for us, until this past week when she has really slowed down for some reason, she on average would eat every 20 mins to 2 hours and no less than 12-14x a day, in the early days much more (yes I am exhausted!) About 6 weeks ago I began getting more agressive about the solids. I now feed her meals and snacks with my 3 year old.

Thanks!

[JennyC]

My son has celiac disease, but I have not been tested yet so I don't know if I have it. There was a link to an article posted here a while ago that stated that gluten was found in breast milk, even in healthy mothers. I know that was a problem with my son. He was a large baby and for the first four months he was a pretty big baby, then his growth drastically slowed. He also spit up constantly. I would keep breastfeeding and watch for improvement in your baby as you go gluten free. I would also avoid giving her gluten, like Cheerios, to see if it makes a difference. If you do see an improvement in your daughter then I would keep both of you a gluten free diet, at least until she is old enough to be tested which is usually 24 months. I hope that both of you get better soon.

[jnclelland]

She did fine in was born in the 25% which we were happy with given my nutritional state. She did fine the first 6 months, stayed on her growth "curve". She has now "flat lined" on the chart and fallen completely off of it. I exclusively breastfed her until about 6.5 months when I began intoducing solids, veggies, fruits.. My mentality was this was an introduction of food not her main nutrition, that is what breastmilk is for. So I was not super aggressive about solids. She has not gained any weight in the past 5 months and actually has lost 1 ounce.

Here's a totally other thought. My son had a growth pattern like this, and at about a year old he was diagnosed with renal tubular acidosis. It's basically a problem of underdevloped kidneys, and they can't maintain the pH of the blood where it should be. In most cases, the kidneys catch up to where they should be between ages 2 and 5, so it's not a lifelong problem or anything. Our pediatrician said that it was the most common cause of a growth pattern like this, so it might be worth asking for a blood test.

We had to give him medicine (sort of a glorified sodium bicarbonate to keep his pH balanced) 3 times a day for a couple of years, and have blood tests every 3 months to make sure that he was on the right dose (which changed as he grew and his kidneys developed). The blood tests were by FAR the worst of it, and he outgrew it at about age 3-1/2.

Good luck; I know it's really scary when your little one isn't growing the way she should. But if she was thriving for the first 6 months, it's almost certainly NOT your breastmilk!

Jeanne

[Fiddle-Faddle]

Boy, your story sounds way too familiar. I was on TPN with my second pregnancy, and had hyperemesis with all three. Of course, I kept trying to follow doctor's orders, didn't know I had a problem with gluten yet, so I tried eating crackers all the time (gee, wonder why I couldn't keep them down... ).

My first was born very small (induced 3 weeks early because I also had pre-eclampsia), and I had quite a bit of difficulty keeping his weight up, but it was because he had a hole in his heart. I'm sure your pediatrician would have caught that by now if your child had it; our pediatrician caught it at 7 weeks.

Did getting more aggressive with solids make any difference?

I was kind of a maniac about good nutrition for my first; first food for him included rice cereal mixed with my milk, sweet potatoes, pears, broiled salmon, and soft tofu cubes. He didn't get cheerios or crackers or things like that til he was in day care at age 2.

How is going gluten-free going for you? Are you noticing any improvement in yourself? I've read several times now that pregnancy/childbirth can trigger previously dormant celiac. It can also trigger thyroid problems (which are often linked to celiac anyway)--has your doctor bothered to check your thyroid levels?

This is probably stretching things a bit, but did your baby start crawling already? My babies all continued to grow taller but lost a bit of weight once they became mobile...Did your baby continue to increase height and head circumference? Are other developmental milestones on track?

But something about all you've written still strikes me as not adding up; I can see why you are worried. I wish I had an answer for you. Hopefully, it'll be something as simple as eliminating gluten from both your diets. (And be aware that there are a LOT of gluten-containing foods that you'd never think had gluten, like soy sauce, rice krispies, corn flakes, deli tuna salad,deli roast chicken, rice crackers, potato chips, "lite" ice creams--the list is unbelievable, and it took most of us MONTHS to figure it all out!)

One other thing--vaccines. This is a very hotly debated topic, and I'm not telling you to avoid all vaccines forever. But I do recommend you do a lot of research (www.nvic.org is a good start), and that you not let your child receive any more until everything is back on track. And even then, I would only do ONE vaccine at a time, as there are NO studies showing long-term safety of multiple vaccines. I recommend holding off on the MMR until she is at least school age, as there is quite a lot of evidence that the MMR is linked with autism and celiac --there was a study done by Andrew Wakefield that showed the MMR in the lining of the gut of a huge percentage (something like 24 out of 26)of autistic children with major digestive problems (probably celiac) years after it should have been gone, and the group of non-autistic children with digestive problems did NOT have the MMR in the lining of their gut. Note that I said "linked with;" I'm not saying that the MMR CAUSES autism, only that there is evidence that it, along with celiac, is involved somehow with autism. I'm sure many people will jump in here and say that their child received the MMR and was just fine, etc. etc.

When all is said and done, vaccines are your call, no matter what the doctors (or any of us) say.

Anyway, I hope somebody comes up with something helpful here (the renal tubular acidosis sounds like something definitely worth investigating), and please keep us all posted, okay?

[Mickide]

Jeanne- thanks for the info, so that is something they outgrow??

Fiddle-Faddle- I haven't actually talked to anyone who had been and TPN during pregnacy before. Sorry you had to go through that too. Yes I was induced early also, I developed a DVT so was anti-coagulated, had placenta previa, and a few other issues. She was born healthy except for Apnea of prematurity, which she has since outgrown. As for the vaccination issue, I already do delayed vaccinations, 1 at a time and 30 days apart. The MMR I was planning on waiting until she was 24-27 months. I did the same for my 3 year old. I am getting frustrated and tired of having the same discussion over and over with my pediatrician about the vaccinations. But my insurance is very limited on who I can see. So I check periodically for other options I actually want to put her vaccinations on hold right now until I feel comfortable with her growth.

Yes she has started crawling and figured that for some of the slowing down in growth, but 5 months is feeling kind of long. Her height has not stopped but has dropped (but we are short )

I don't take her in for another 2 weeks for another weight check.

Thanks so much to all of you! You definately have helped me feel better about it all!

[jnclelland]

Jeanne- thanks for the info, so that is something they outgrow??

It's been awhile, so I'm not sure I remember perfectly, but my recollection is that there are a few different types. The most common type, which my son had, they usually outgrow between ages 2 and 5. (And he split the difference by outgrowing it right at 3-1/2!) I think there are some rarer types that can be lifelong, but don't quote me on that.

Jeanne

[dandelionmom]

A really great site for information about breastfeeding is kellymom.com. They have forums there for breastfeeding and health concerns. That might be a good place for you!

From all I've heard and my personal experience (breast fed 3 babies for a year at least each), breastfeeding is the best feeding choice for your baby and you are doing a wonderful thing by doing it.

[mrs-crutch]

Hi there, my name is Megan and I'm new to the forum. I have been reading the posts and the infomation is wonderful. My only question is: Has anyone had a problem with their breast milk as a celiac? I'm the mom of a 5 week old baby, and we are supplementing with formula because it appears that my breast milk does not satisfy or keep the child full. I am a celac and have been gluten and wheat free for 4 years. Has any other celiac mom had a problem with their breast milk?

[Fiddle-Faddle]

Hi, Megan, welcome!

I was told by the pediatrician that I did not have enough milk for my first baby. I went home, cried, and then called the lactation consultant, who told me to nurse every 30-90 minutes, and to let the baby stay as long as he wanted on a side (more fat content that way). She also told me to drink lots and lots of whatever I liked best, and to do nothing but take care of the baby, and sleep when the baby slept. ("Oh, I'm sorry, Honey, I have to feed the baby, I can't vacuum/cook dinner/wash dishes/clean the toilet/____(fill in the blank___) right now," she said sort of sadly as she put her feet up and closed her eyes... ) I didn't sleep WITH the baby til he was 4 months old (long story there), but once I did, it made a HUGE difference in how rested I felt and how much milk I produced. When the baby wasn't nursing, I didn't let him lie in a crib or a stroller, I wore him in a sling, and I really think that helped a lot, too.

I threw away the formula and never looked back--and yes, the baby gained!

Obviously, everyone is different. It is certainly possible that celiac could affect your ability to produce milk, as it does affect your ability to absorb nutrients. I would also want to rule out low thyroid, as so many celiacs have thyroid issues, and postpartum low thyroid is common even if you don't have celiac!

What makes you (or your pediatrician) so sure that your milk isn't keeping the baby full and satisfied? I'm not doubting you, you are the mom and know best, I'm just trying to understand better. How often are you feeding the baby, and how many wet diapers, etc? Do you have access to a lactation consultant or someone nice from the La Leche League? Unfortunately, occasionally, there are some very militant women in those otherwise helpful institutions, who can make you feel like a total failure if you are not squirting your milk up to the heavens every time the baby stops sucking...

P.S. Moo.

[dionnek]

I had low milk supply with my first child, but it was pre diagnosis (although looking back I definitley had celiac then) so I wasn't gluten-free. I also had many other issues that could have contributed to the low supply, but regardless I BFed her for 5 1/2 months, until my recurrent sinus infections (and many rounds of antibiotics) totally dried me up. With my new baby (5 weeks now), I have a better supply, although he was only in the 10th% at birth and at 2 weeks hadn't even gotten back up to his birth weight, so I had to supplement with 2 oz. of formula twice a day for about a week, then he started gaining and I"m just BFing again. He usually eats every 1- 1 1/2 hours (not the 2-3 that they say), which helps encourage your supply. I don't squirt out or feel overly full ever, so I know my supply isn't abundant, but it is enough for my little man

I have a question though - my baby has been vomitting and spitting up TONS of milk at each feeding since birth, and he has terrible gas and stomache noises (started about 3 weeks)! I've tried giving up broccoli and onions, and now am working on dairy (I am gluten-free) to get rid of the gas - does anyone have any other ideas what might help? He just started prevacid for the vomitting but it hasn't been helping yet.

[Fiddle-Faddle]

Your pediatrician ought to know about this, as there are many things that could cause this, including the formula (does he still get any?), what you eat, and mechanical problems.

I had to give up Mexican food--for some reason, those spices consistently made my first baby colicky. Nothing else did.

What I would suspect first is reflux (possibly caused by food issues, possibly a mechanical issue). Try feeding half as much twice as often. That means nurse one side only--and that's it til next feeding, which would occur in maybe an hour, maybe even sooner--as soon as he starts rooting around. I know, I know, then it feels like you are doing absolutely nothing but feeding him, but trust me, if reflux is the problem, this fixes it without meds.

The longer he sucks on one breast, the more fatty hindmilk he gets (which actually keeps him feeling full longer, and is more likely to stay down. Many babies continue to need to suck after they are full, but if they are getting the watery foremilk from two full breasts (and if youve been pumping, you might even be producing more than he needs for now), they overflow and spit up (and mom cries and baby cries and it's a big mess). The foremilk is also higher in sugar; if they get too much of that and not enough of the fat, they tend to get green diarrhea--something about the sugar fermenting in the stomach, as I remember. And it's the FAT in the hindmilk that helps them grow.

You are probably not using a pacifier, but just in case--DON'T. That can cause gas, too, and the sucking that he might use to get your fatty hindmilk is wasted on a pacifier, and then when he is starving, he gets too much watery sugary foremilk.

Good luck--keep us posted!

[Spirit of the Home]

I have a question though - my baby has been vomitting and spitting up TONS of milk at each feeding since birth, and he has terrible gas and stomache noises (started about 3 weeks)! does anyone have any other ideas what might help? He just started prevacid for the vomitting but it hasn't been helping yet.

Hello Dionnek- my daughter had similar problems with her first baby.

I called a lactation consultant and we spent some time with her and she helped my daughter work out all the problems. We found out when he was a little older that they both had Celiac and still she had sucessfully breastfed him for over a year.

Spirit of the Home

[loraleena]

Mrs. Crutch. I am a lactation counselor. Can I ask why you thought you were not making enough milk to satisfy you child?? New moms need to be nursing every 30-90 minutes. So, if your child is nursing that often you may have felt he/she wasn't getting enough. This is a common misperception. Breastmilk is mainly made up of water - 87% in fact. The rest is mostly lactose and little protien and fat. So, it digests very quickly. This is very unlike formula which takes ages to digest. My guess is you don't need the formula just nurse as often as I recomended. Adding formula will only decrease your milk supply. But, it can be re-established. Have you been to see a Lactation Consultant locally?? I would recomend this to you. Was your child having 3-4 poopy diapers a day and gaining weight on jsut the breast milk?? Let me know.