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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Breast Feeding Issues (Low Milk Supply)
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11 posts in this topic

I was diagnosed with Celiac in December 2011. I believe I had symptoms for 5 years prior to diagnosis (beginning very mildly and progressing to rather severe). I became very ill before my diagnosis and am confident my stomach was heavily damaged. I follow a strict gluten free diet and our home is completely gluten free (including non food items).

After going gluten-free, my stomach was still sensitive so I was cautious about what I ate...limited grains, no to little dairy. As time passed, my stomach felt better, but didn't get to 100%.

I became pregnant in July 2012. I felt great throughout the pregnancy. I maintained the strict gluten-free diet, but found other foods no longer bothered my stomach.

The baby came about a month early. No issues, completely heathy, great delivery. My milk came in great, I had the engorgement that I read about everywhere. The first two weeks started great. Not the greatest latch, but well enough given he was a smaller baby.

This all gave me high hopes that breast feeding would go well this time around. With my first child, I was undiagnosed and now realize I had low milk supply. I suspected then, but just thought I had issues with pumping.

After about two weeks, the baby started occasionally needing a formula supplement at night. Then it became every night. Then it was occasionally during the day as well. It it just kept getting worse. And i could tell my milk supply was less. Around the same time, I stated experiencing what I called my healing symptoms: slight stomach irritation after eating, slightly bloated stomach that gets worse throughout the day, gas (though I didn't have issues with that after going gluten-free).

I am now almost 10 weeks postpartum, and the baby gets a supplement at almost all feedings. It's actually as if the breast milk is the supplement, because he gets more formula than breast milk.

I have followed up with my gastroentologist....blood work is great. Best ever. Creatinine is a bit low and that's it. He thinks my symptoms could be hormone related.

I've been working with my local breast feeding clinic at the hospital. My first visit they determined I'm only producing 1 ounce per feeding. They put me on Domperidone. My second visit (1week later, about 5 days of Dom.), I was producing 2 ounces. My third visit, 1 1/2 weeks later, I'm closer to an ounce again. I had nursed about an hour or hour and half before the appt, but the RN thought I should have reproduced by then. They basically sent me on my way with no further advice other than feed the baby and pump when I can to help with demand.

I nurse on demand, and also nurse first every feeding before supplementing. I try to make sure he nurses long enough and assist with breast compressions to make sure each breast is fully emptied before given the formula.

I'm a thin person naturally. I've always been able to eat what I want and not worry about weight...I lost a fair bit a weight (10-15 lbs) when I got really sick and had only gained 5-10 back before conceiving. I only gained ~20 lbs with the pregnancy. At my 6 week postpartum checkup, I was back to my normal presickness weight. I had not been hungrier then normal, but still added an extra snack to try to consume extra calories to support nursing. After starting the Dom. I am a lot more hungry and have been eating more. I have a very clean diet....little processed food, lots of nutrient dense foods (eggs, clean meat, fruits, veggies, seeds, nuts). Our pediatrician, who is also my primary care dr, commented today at the baby well appt that he's not surprised I'm having nursing issues....with a high metabolism I probably struggle to get enough calories for myself he said.

I would love to be able to exclusively breast feed my baby, but I have no idea if my body is capable of that at this point. Any suggestions or thoughts?

Can this be as simple as I need to eat more? Most people already think I eat a lot for my size. (Haven't done a calorie count). I keep thinking it's somehow related to the celiac because of the changes that occurred together after 2 weeks postpartum.

Thanks!

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I really have nothing constructive to add except been there, done that. I wasn't gluten-free at that point- and had undiagnosed thyroid and celiac.

I think stress reduced milk flow - at least it did to me. It really was mind over boob. My flow wasn't as low as yours, but it wasn't enough to solely bf. AND he wouldn't nurse - I had to pump. Ugh.

The only thing that helped me was more frequent pumping, and to keep pumping once the flow stopped. I could increase my supply by an ounce or so that way.

Have they checked your thyroid for hypo or hyper? That's one thing that's notorious for getting out if whack post partum.

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I was diagnosed with Celiac in December 2011. I believe I had symptoms for 5 years prior to diagnosis (beginning very mildly and progressing to rather severe). I became very ill before my diagnosis and am confident my stomach was heavily damaged. I follow a strict gluten free diet and our home is completely gluten free (including non food items).

After going gluten-free, my stomach was still sensitive so I was cautious about what I ate...limited grains, no to little dairy. As time passed, my stomach felt better, but didn't get to 100%.

I became pregnant in July 2012. I felt great throughout the pregnancy. I maintained the strict gluten-free diet, but found other foods no longer bothered my stomach.

The baby came about a month early. No issues, completely heathy, great delivery. My milk came in great, I had the engorgement that I read about everywhere. The first two weeks started great. Not the greatest latch, but well enough given he was a smaller baby.

This all gave me high hopes that breast feeding would go well this time around. With my first child, I was undiagnosed and now realize I had low milk supply. I suspected then, but just thought I had issues with pumping.

After about two weeks, the baby started occasionally needing a formula supplement at night. Then it became every night. Then it was occasionally during the day as well. It it just kept getting worse. And i could tell my milk supply was less. Around the same time, I stated experiencing what I called my healing symptoms: slight stomach irritation after eating, slightly bloated stomach that gets worse throughout the day, gas (though I didn't have issues with that after going gluten-free).

I am now almost 10 weeks postpartum, and the baby gets a supplement at almost all feedings. It's actually as if the breast milk is the supplement, because he gets more formula than breast milk.

I have followed up with my gastroentologist....blood work is great. Best ever. Creatinine is a bit low and that's it. He thinks my symptoms could be hormone related.

I've been working with my local breast feeding clinic at the hospital. My first visit they determined I'm only producing 1 ounce per feeding. They put me on Domperidone. My second visit (1week later, about 5 days of Dom.), I was producing 2 ounces. My third visit, 1 1/2 weeks later, I'm closer to an ounce again. I had nursed about an hour or hour and half before the appt, but the RN thought I should have reproduced by then. They basically sent me on my way with no further advice other than feed the baby and pump when I can to help with demand.

I nurse on demand, and also nurse first every feeding before supplementing. I try to make sure he nurses long enough and assist with breast compressions to make sure each breast is fully emptied before given the formula.

I'm a thin person naturally. I've always been able to eat what I want and not worry about weight...I lost a fair bit a weight (10-15 lbs) when I got really sick and had only gained 5-10 back before conceiving. I only gained ~20 lbs with the pregnancy. At my 6 week postpartum checkup, I was back to my normal presickness weight. I had not been hungrier then normal, but still added an extra snack to try to consume extra calories to support nursing. After starting the Dom. I am a lot more hungry and have been eating more. I have a very clean diet....little processed food, lots of nutrient dense foods (eggs, clean meat, fruits, veggies, seeds, nuts). Our pediatrician, who is also my primary care dr, commented today at the baby well appt that he's not surprised I'm having nursing issues....with a high metabolism I probably struggle to get enough calories for myself he said.

I would love to be able to exclusively breast feed my baby, but I have no idea if my body is capable of that at this point. Any suggestions or thoughts?

Can this be as simple as I need to eat more? Most people already think I eat a lot for my size. (Haven't done a calorie count). I keep thinking it's somehow related to the celiac because of the changes that occurred together after 2 weeks postpartum.

Thanks!

 

Was your little one ever evaluated for a tongue tie?  If baby can't nurse well, your supply will drop.

Eating and drinking more may help.  Doing a nurse-cation (just stay in bed with LO with as much skin-to-skin and nursing as possible for a whole weekend) can help too.

I would also HIGHLY encourage you to find a good lactation consultant (an ICBLC, iirc).

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Congratulations!

And welcome to the board :)

I did mixed feeding, and I ended up with my supply dropping. It becamedia a bit of a cycle, so as I fed less, my body made less milk. My son also got in the habit of stopping a breast milk fed and anticipating a bottle as part of the routine.

I would say a 'nursecation' as above may work. The habits are important, you could try and make a new habit.

I also had fennel tea, which brought in more milk than I could handle. I don't have references for that you would have to check current advice.

Good luck

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Congratulations!

And welcome to the board :)

I did mixed feeding, and I ended up with my supply dropping. It becamedia a bit of a cycle, so as I fed less, my body made less milk. My son also got in the habit of stopping a breast milk fed and anticipating a bottle as part of the routine.

I would say a 'nursecation' as above may work. The habits are important, you could try and make a new habit.

I also had fennel tea, which brought in more milk than I could handle. I don't have references for that you would have to check current advice.

Good luck

I exclusively breast fed.  I found in my experience that Fennel seemed to increase my supply.  I also had the baby in my bed and sometimes they nursed all night.  I know people say this is dangerous, but I think it is dangerous to sit in a chair dozing off, and to be a crab the next day after missing sleep.  Once I rolled on a baby and they cried out, so I moved.  I have 5 children I breast fed and all are alive, and I have friends with similar results. 

 

At any rate the more you nurse, the more milk should be produced.  I learned that from reading a La Leche book in my very distant past.  I recommend reading such a book as being helpful. 

 

There is a product Traditional Medicinals that is a tea called Mommy's Milk.  It contains fennel and a couple of other herbs.  One friend had mentioned that it helped her supply.

 

 

Breast milk is the best food for babies.  I hope that you will be able to provide the little one's needs.

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I was diagnosed with Celiac in December 2011. I believe I had symptoms for 5 years prior to diagnosis (beginning very mildly and progressing to rather severe). I became very ill before my diagnosis and am confident my stomach was heavily damaged. I follow a strict gluten free diet and our home is completely gluten free (including non food items).

After going gluten-free, my stomach was still sensitive so I was cautious about what I ate...limited grains, no to little dairy. As time passed, my stomach felt better, but didn't get to 100%.

I became pregnant in July 2012. I felt great throughout the pregnancy. I maintained the strict gluten-free diet, but found other foods no longer bothered my stomach.

The baby came about a month early. No issues, completely heathy, great delivery. My milk came in great, I had the engorgement that I read about everywhere. The first two weeks started great. Not the greatest latch, but well enough given he was a smaller baby.

This all gave me high hopes that breast feeding would go well this time around. With my first child, I was undiagnosed and now realize I had low milk supply. I suspected then, but just thought I had issues with pumping.

After about two weeks, the baby started occasionally needing a formula supplement at night. Then it became every night. Then it was occasionally during the day as well. It it just kept getting worse. And i could tell my milk supply was less. Around the same time, I stated experiencing what I called my healing symptoms: slight stomach irritation after eating, slightly bloated stomach that gets worse throughout the day, gas (though I didn't have issues with that after going gluten-free).

I am now almost 10 weeks postpartum, and the baby gets a supplement at almost all feedings. It's actually as if the breast milk is the supplement, because he gets more formula than breast milk.

I have followed up with my gastroentologist....blood work is great. Best ever. Creatinine is a bit low and that's it. He thinks my symptoms could be hormone related.

I've been working with my local breast feeding clinic at the hospital. My first visit they determined I'm only producing 1 ounce per feeding. They put me on Domperidone. My second visit (1week later, about 5 days of Dom.), I was producing 2 ounces. My third visit, 1 1/2 weeks later, I'm closer to an ounce again. I had nursed about an hour or hour and half before the appt, but the RN thought I should have reproduced by then. They basically sent me on my way with no further advice other than feed the baby and pump when I can to help with demand.

I nurse on demand, and also nurse first every feeding before supplementing. I try to make sure he nurses long enough and assist with breast compressions to make sure each breast is fully emptied before given the formula.

I'm a thin person naturally. I've always been able to eat what I want and not worry about weight...I lost a fair bit a weight (10-15 lbs) when I got really sick and had only gained 5-10 back before conceiving. I only gained ~20 lbs with the pregnancy. At my 6 week postpartum checkup, I was back to my normal presickness weight. I had not been hungrier then normal, but still added an extra snack to try to consume extra calories to support nursing. After starting the Dom. I am a lot more hungry and have been eating more. I have a very clean diet....little processed food, lots of nutrient dense foods (eggs, clean meat, fruits, veggies, seeds, nuts). Our pediatrician, who is also my primary care dr, commented today at the baby well appt that he's not surprised I'm having nursing issues....with a high metabolism I probably struggle to get enough calories for myself he said.

I would love to be able to exclusively breast feed my baby, but I have no idea if my body is capable of that at this point. Any suggestions or thoughts?

Can this be as simple as I need to eat more? Most people already think I eat a lot for my size. (Haven't done a calorie count). I keep thinking it's somehow related to the celiac because of the changes that occurred together after 2 weeks postpartum.

Thanks!

Let's face it.  Bottles are much easier for babies!  They tend to get lazy!  Like the rest of the posters, I suggest that you continue to pump and to continue to nurse on demand.  I night nursed too.   I only exclusively nursed for one year and then supplemented with milk after for another year and a half.  I'm allergic to milk and at the time, my husband was gluten-free, so I avoided giving my daughter gluten and milk  until she was a year old.  She's allergy free and showing no signs of celiac.  

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My eldest couldn't handle any formula due to anaphylactic allergies, our doc recommended domperidon for increasing milk supply, it's an antacid I think, they don't know why but in 48 hrs you'll have milk to spare you can adjust the dose, I took lots the first day, less the second, boy was I engorged!

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My tried for increasing milk supply, eat a plain Hershey's chocolate bar.

 

I think it just gives the extra calories and fat for the diet.

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Congratulations on your new baby and breastfeeding.  I thankfully have had enough milk and haven't needed to supplement (apart from both kids needed formula on day 1 in the hospital).

Do remember ANY breastmilk helps and YOU are giving your baby 100% of what you can, don't feel you are letting your baby down.

A few things I have learned along the way:

Peppermint, sage and parsley reduce milk supply as do antihistamines, so it is good to stay clear of these.

When ever possible feed baby skin to skin (if it's cold put a blanket over both of you), so in otherwords, strip baby to diaper and you take your top off, this is meant to stimulate milk supply.

Drink lots and lots of water, this can make a big difference!

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Fenugreek seed helps with milk production and it makes you smell like maple syrup.  ;)

 

Massaging out the milk while you bf can help too.  I found it really helped get out the hind milk.

 

Best wishes.

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You got a lot of good advice, so I won't repeat any of it.

One question, though. Do you have a lot of fat in your diet? I'm like you, and stay think pretty much no matter what. I'm also dairy free. When I'm breastfeeding, especially those first few months, I crave fatty things and I figured it was to supply fat to my milk. I would literally eat spoonfuls of coconut oil each day. And I'd use a LOT of olive oilin my cooking.

Getting your supply up (if your body will let you) will require almost around the clock nursing. (iI've kept track, and my all time record was 9.5 hours with a baby latched on to me in a 24 hour period... Intense stuff... But they seem to be worth it ;) )

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