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KimmyJ

Breastfeeding And Needing Help

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I am curious if anyone else has had much experience with the effects of Celiac on breastfeeding. I was diagnosed less than three months after my baby was born, and I decided to continue to breastfeed her while I was trying to figure out the gluten-free diet. So here's the problem - I've lost all my pregnancy weight and an additional 10 lbs, putting me underweight. I have really struggled with low energy, bouts of depression, and just generally not feeling well. I'm wondering if anyone else experienced this and has suggestions as to how to manage it. I'm trying to up my caloric intake, and really focus lately on getting more protein, as it seems to help with the constant nausea, but I'm barely keeping my weight constant. My baby is thriving really well, but I'm feeling like I've been dragged through the street under a bus. I don't want to wean her, as I know that breastfeeding can provide some protection from her getting Celiac disease.

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Kimmyj,

I can't offer any real help. I don't have Celiac. But I did breastfeed my son (who was just diagnosed with Celiac - he's 8 and a half). Here's what I can tell you:

Breastfeeding was an amazing experience for me. I never would've dreamed it would have mattered that much to me. I ended up nursing him until he weaned himself at 2 years and 1 month. If your experience is similar to mine, I don't blame you for wanting to make it work a little longer. I have always been thin, and breastfeeding stripped what little baby weight I had off in no time. I was an eating machine! All I can offer is to keep trying. I used to drink a lot of Carnation instant breakfasts (I'm not sure if their gluten-free or if there is a gluten-free replacement) as well as make a complete pig of myself with all food!

I'm reading Dr. Green's book about Celiac and just finished a section on breastfeeding. He said breastfeeding definitely plays a role in Celiac. He said they are not sure if it delays the onset of Celiac or helps prevent it all together. He did reference research that shows that breastfed babies who develop Celiac are more likely to have less severe symptoms, including more likely to thrive and not have growth issues. I don't know if it was the breastfeeding, but my son is/has always been in the 95th percentile for height and weight. It was one of the reasons it took so long to diagnose him (that and the normal lack of information in the medical world about Celiac). Doctors kept saying he was doing so well in growth and development that there couldn't possibly be anything wrong with him (in the same breath that they were saying his D was because he was constipated and prescribing laxatives and fiber pills or maybe because he ate so many fruits and vegetables that he just normally has D - whatever!).

You might try contacting a local breastfeeding group to see if they have any ideas on how to increase your weight.

But, if you do have to give up the breastfeeding, try to work through it and not get too upset. Breastfeeding can be a wonderful experience - IF it is working for both mother and baby. If it doesn't work for one of you, it isn't really working at all. Your baby MAY benefit from breastfeeding. Or you could breastfeed until she's 20 and she could end up with Celiac at 21! If it is bad for your health, you won't be a good mother in other areas. You need to be as healthy as possible to parent. So go ahead and give it a good try, but if it's time to let it go, let it go. Be thankful for whatever time and benefits you get and then move onto to the next wonderful thing you can do for your family. Breastfeeding is just one choice you have to make as a parent. There are so many more waiting in line, just move onto the next one! You will have so many opportunities to demostrate your love and caring for your child over the years. Don't think that this is your last chance...

Good luck and go hug that baby that is so lucky to have such a loving mom! :rolleyes:

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Are you getting enough saturated fat? Try adding more fat to your diet in the form of non-hydrogenated coconut oil (the healthiest saturated fat there is), bacon, eggs, avocado...... Your baby is taking fat from you, and you need to not only replace it, but have enough for yourself. Every cell in your body needs saturated fat, and vegetable oils (including healthy olive oil) won't cut it. Your brain is almost all fat!

Fat and protein will hopefully give you more energy and help you put on a little weight.

My oldest daughter was losing weight on the gluten-free diet and added coconut oil to her diet a while ago, and it has helped. She is 5'6" and has always had trouble maintaining a weight of 120 pounds (eating a lot and many times a day), but was getting below 110 pounds two months after starting the gluten-free diet. She is the mother of five children between the ages of one and seven, and can't afford to lose her energy!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Try some coconut milk smoothies. Also eat more meat. Keep some cooked meat to snack on with fruit between meals or with some boiled eggs, deviled with mayo would be better...

Mission Brand White Corn tortillas with almond butter and jam and lots of bacon rolled up. That should give you a few calories.

Try to figure out why you have nausea. Are you eating something that you have an intolerance to? Are you dairy free? soy Free? I do not eat grains, so I am biased but you might want to think about the grains that you are eating as a cause of nausea...

You should be taking a B12 every day. I take 4,000mcg a day(I am 61 YO). You should at least take 1,000 or 2,000mcg everyday for the rest of your life. Also, it is very important at this time in your life to get ALL your vitamin & mineral levels checked & get a hard copy of the results. But take the B12 even if your B12 level checks out okay. We all need more B12...

I hope you are feeling better soon & enjoying this wonderful time in your life.

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I'm breastfeeding and have celiac. It is so important to stay hydrated. Are you drinking a ton of water? If I don't have 8-10 glasses of water a day (plus one for every cup of coffee) I feel all headachey, tired, and dizzy. It is also really important to eat a lot; 500 extra calories a day (that's more than pregnancy!).

I really believe that breastfeeding helps with celiac disease my daughter got a lot sicker after we weaned at 15 months. That and the research I've read has convinced me to try to breastfeed my youngest until she is 2.

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To get more fat into your diet, you can add nuts- in smoothies, on crackers (gluten free of course), and wherever else you can think of. My baby and I eat porridge for breakfast every day and I grind up pecans and cashews in a coffee grinder and mix the nut powder in there. Flax seeds work well too and they are tasty.

The depression and fatigue could also be attributed to having recently had a baby, perhaps having post partum depression, and just plain old being tired from not getting enough sleep.

I hope you start to feel better soon. Take good care of yourself.

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I was in this place about 3 1/2 years ago. I was so hungry all day, and I had taken out gluten and dairy shortly after she was born, it seemed like most of what I could eat and prepare while taking care of a baby still left me feeling hungry. Coupled with sleep deprivation and hormonal flux, it was so exhausting and overwhelming. Focusing on protein helped the most. I ate a lot hummus, kept a container of cooked taco meat in the fridge to eat with corn chips, and considered bits of turkey a snack food. The other thing that really helped was supplements, I started taking calcium, mag, B-12, and lots and lots of fish oil. I think the fish oil really helped my mental health the most.

You might also consider La Leche League meetings. You'll meet more nursing mothers, and you'd be surprised how many have other Moms there will also have altered there diets for a variety of reasons. It was a great place to get support and talk to other Moms in the same place I was.

I also credit the breastfeeding with keeping my daughter healthy and well, she oculd never have tolerated formula. While she is showing gluten intolerance now, her symptoms have been so minimal compared to others, and didn't really start until she stopped nursing at 2 1/2.

Hang in there, I always tried to tell myself the challenges of nursing last for days or weeks, but the benefits to my baby last their whole life. It got me thorugh a few of the tougher days, that and there snuggly, little cuddles and milky smiles. I wouldn't trade those days for anything.

Good Luck,

Patty

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ALthough I have not been diagnosed with celiac yet, I also have a baby. I just weaned her at nine months. She is my third and I always had issues with milk production, no matter how much water I drank. If I tried to pump the most milk I ever got was 2 oz. I looked this up online and found that it is very common for celiacs to have low milk production. My youngest never needed supplementation, but did frequently nurse, every 2-3 hours until she was weaned at nine months. I would also get nauseated every time she latched on. Drinking water while nursing seemed to help the nausea. I would stick with nursing as long as possible, especially if you have celiac. Do whatever you can to delay or prevent your child from getting celiac. When I say as long as possible I can't even imagine nursing past 12 months, but if you can good for you.

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You should have your thyroid levels checked, as that seems to be very common amongst celiacs (to have low thyroid).

Rest is very important to milk production, but today's society doesn't exactly allow moms of infants to get any! The best thing to do is to SLEEP WHEN BABY SLEEPS. If you are one of those lucky women who can sleep with your baby, do so. If necessary, put a bedrail on your bed, and put baby between you and the bedrail so hubby can't roll on her.

IF YOU TRY TO USE BABY'S SLEEP TIME TO "GET THINGS DONE," YOU WILL NEVER CATCH UP ON REST, AND YOU WILL GET LESS AND LESS DONE.

Tell your hubby, "No dear, I can't do the (cooking) (vacuuming) (scrub the tub and toilet) (go shopping) (fill in the blank)--I have to feed the baby." Then put your feet up, latch baby on, and take a well-deserved nap! Can you get someone to help with the housecleaning?

Best tip I ever got for increasing milk production--nurse as often as possible, especially during daylight hours. Do NOT worry about getting baby to go longer between feedings. There is no need for that to happen. Some babies don't like to go hours between feedings, AND THAT'S OKAY. Anyone who tells you that a baby MUST be on a specific feeding schedule is just ignorant! (and brainwashed by the formula industry.)

And don't forget that babies having growth spurts do marathon feedings (like, every 20 minutes for 2 days!) in order to get you to increase your milk supply.

Pumping is fantastic if you have to be away from baby (to go back to work, for example), but if you don't have to be away, than it's better to just let the baby nurse than to pump and give it in a bottle.

Nausea--hmmm, any chance you might have blood sugar problems?

Anyway, I hope things get easier for you IMMEDIATELY!

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I can relate. I'm gluten-, dairy-, egg-, and soy-free for my breastfeeding two year old, and I've dropped down to a weight I haven't seen in at least 18 years. A couple weeks ago I was feeling bus-dragged too, but I'm feeling a lot better now. I think it is partly that I'm eating a lot more and partly that I'm being diligent about taking my supplements.

You must eat more! Brown some ground meat and season it and snack from it all day. Put nut butters on rice cakes or corn tortillas. Snack on hummus and chips or raw veggies. Roll up slices of cold cuts and/or cheese and eat straight out of the fridge. Make a big pot of rice and re-heat as needed. Use leftover rice to make stir fries (get wheat-free tamari soy sauce) or rice pudding (add nuts, fruit, milk, sugar and heat). Avocados and coconut milk are excellent sources of good fats. Rice made with a mixture of coconut milk and water is delicious. Make a pan of Pamela's gluten-free chocolate brownies, and finish it in one day (why yes, I have done this).

What supplements are you taking? Take a good prenatal every day, without fail. Consider taking a daily sublingual (under the tongue) vitamin B12 supplement unless you're certain your B12 level is fine. Essential fatty acids and probiotics are a good idea too.

Go to bed with the baby in the evening ~ I still do that most nights. Yes, it feels weird to have an 8:00 bedtime, but my body needs it. If you're getting out of bed several times a night to nurse, consider co-sleeping (with safety precautions, check Dr. Sears' website for details). That can increase the amount of rest you get since you don't have to get up and down all night long.

Are you nauseated when breastfeeding, or all the time? If it is just when breastfeeding, you're probably one of those lucky people who get nausea when oxytocin levels go up. Fortunately, that seems to decrease over time.

Hang in there, and good luck!

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Kimmy,

Just so you know, I am a CLC(cerified lactation consultant). Unfortuneately we did not learn about breastfeeding and celiac in our training. I do however, have some info to share. You should add fats to your diet as the other person said and eat more. Drinking and eating enough while nursing is so important. You will produce milk regardless, but it will effect your health if you don't. Being dehydrated can cause low energy and dehydration. You may also want to check your iron levels as well. Years ago I visited a women who was having serious depression and feelings of wanting to leave her baby. I called in a crisis team who determined that she was undernourished and dehydrated. As soon as she started drinking and eating more these feelings resolved. Also someone on hear talked about low milk production. Pumping 2oz. and a baby that nurses every 2-3 hours is not a sign of low milk production. Many women do not get a lot from pumps because it does not stimulate the breast the way a baby does. Also different pumps work for different women. Medela tends to offer some of the best pumps. It is normal for a young infant to nurse anywhere from every half hour to hour and a half. So a 9 month old nursing every 2-3 is not abnormal. Breast milk digests within 90 minutes. That is why babies need to nurse so often. The more you nurse the more you make. If a women nurses every 3 hours she may not make near as much milk as someone who nurses every hour and half. Breastmilk is 87% water. The rest is lactose and protein. Our milk is most equivalent to a goats. Goats nurse almost contantly as their milk digests very quickly as well. Kimmy - if you have more questions or want some more support please feel free to pm me (anyone else as well). Take care.

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Kimmy,

Just so you know, I am a CLC(cerified lactation counselor). Unfortuneately we did not learn about breastfeeding and celiac in our training. I do however, have some info to share. You should add fats to your diet as the other person said and eat more. Drinking and eating enough while nursing is so important. You will produce milk regardless, but it will effect your health if you don't. Being dehydrated can cause low energy and dehydration. You may also want to check your iron levels as well. Years ago I visited a women who was having serious depression and feelings of wanting to leave her baby. I called in a crisis team who determined that she was undernourished and dehydrated. As soon as she started drinking and eating more these feelings resolved. Also someone on hear talked about low milk production. Pumping 2oz. and a baby that nurses every 2-3 hours is not a sign of low milk production. Many women do not get a lot from pumps because it does not stimulate the breast the way a baby does. Also different pumps work for different women. Medela tends to offer some of the best pumps. It is normal for a young infant to nurse anywhere from every half hour to hour and a half. So a 9 month old nursing every 2-3 is not abnormal. Breast milk digests within 90 minutes. That is why babies need to nurse so often. The more you nurse the more you make. If a women nurses every 3 hours she may not make near as much milk as someone who nurses every hour and half. Breastmilk is 87% water. The rest is lactose and protein. Our milk is most equivalent to a goats. Goats nurse almost contantly as their milk digests very quickly as well. Kimmy - if you have more questions or want some more support please feel free to pm me (anyone else as well). Take care.

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I was in the exact same situation as you...

I was diagnosed 4 months after having my first son. I was breastfeeding full time. I too lost some weight and was not sure if it was from nursing or changing to the gluten free diet (I was 10# less than my pre-preg weight at 10 months post partum). My son thrived on breast milk and we finally weaned at 20 months- so far he is not showing any signs of celiac disease. I have gained back all of the weight I lost, 4 months after weaning and am back up to my pre-preg weight.

Hang in there, many of the others had great ideas for increasing your food intake. You can do it- breast milk is the best thing for your child- way to go Mama!

Marcia


Marcia-

Diagnosed Celiac based on equivocal results on blood seriology tests, did not have a biopsy due to already eating gluten free (I didn't know any better at the time to keep eating gluten until all tests could be done).

Diagnosis came 3 months after the birth of my first child at age 31 (I believe childbirth was my trigger).

Gluten Free since 8/06

Genetic testing revealed:

I have one copy of DQ2 (DQA1 05/DQB1 02)

Son- 3 years old, so far not showing any signs of digestive issues and does eat gluten- fingers crossed!

Second baby born after I have been gluten free for 2 1/2 years- a healthy boy weighing in at 9 pounds at birth!

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I am curious if anyone else has had much experience with the effects of Celiac on breastfeeding. I was diagnosed less than three months after my baby was born, and I decided to continue to breastfeed her while I was trying to figure out the gluten-free diet. So here's the problem - I've lost all my pregnancy weight and an additional 10 lbs, putting me underweight. I have really struggled with low energy, bouts of depression, and just generally not feeling well. I'm wondering if anyone else experienced this and has suggestions as to how to manage it. I'm trying to up my caloric intake, and really focus lately on getting more protein, as it seems to help with the constant nausea, but I'm barely keeping my weight constant. My baby is thriving really well, but I'm feeling like I've been dragged through the street under a bus. I don't want to wean her, as I know that breastfeeding can provide some protection from her getting Celiac disease.

Cheers to you for deciding to BF your daughter. I Bf'd for a little over a year (though I do not have celiac disease). What you are explaining has happened to many moms that I know who don't have celiac disease. Have you though aobut contacting your local la leche league to see if they have any ideas of how to help you? They were a big source of help to me while I was nursing!

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