Breastfeeding With Celiac

[hannahsue01]

I have not been officialy diagnosed yet......the doctor claims it's only IBS. I had a baby back in December born three months early (I think due to celiac) and stayed at a Ronald McDonald house were I met a number of other mothers with premies and they were all producing more than enough milk for there babies and then some. However, I was never able over a 4 month period able to produce more than 2 oz at any one time and the doctors and lactation consultant couldn't tell me why (I didn't know about celiac at that point). My current doctor says this should have nothing to do witht the disease. I was just wondering if any of you mothers out there experienced this or premature birth due to having celiac?

[jukie]

Congratulations on the birth of your baby!

Because I wasn't diagnosed at the time, I can only speculate on my pregnancy and postpartum problems in relation to celiac. Fortunately, I had a wonderful OB/GYN (and a lot of luck) and managed to carry to term despite all the problems. Unfortunately, nobody seemed able to help when it came to the breastfeeding difficulties and low milk supply. The one thing that I (not the doctors) discovered at 10 months postpartum was a major hypothyroid problem. As it turns out, it's not uncommon to have thyroid problems postpartum (not to metion in connection with celiac) and it can in fact have a negative effect on milk supply.

The other thing I can tell you in retrospect is that malabsorption became a major problem for me postpartum. First, I lost almost ALL of my pregnancy weight immediately. Then, despite the fact that I was breastfeeding (and eating very carefully since my son was very sensitive to what I ate...hmmm), I started gaining weight rapidly. Even the slightest decrease in food intake caused my milk supply to nearly stop. Bloodwork showed that I wasn't absorbing enough nutrients which evidentally sent my body into starvation mode causing it to overstore carbs.

Had I known sooner about the thyroid and the celiac, it's possible that the process would not have been so difficult. In the end, I managed to breastfeed for one year with some formula supplementation. It was not an easy process, but I'll never regret fighting for it every step of the way!

Do the best you can with what you've got...and be good to yourself!

[TCA]

I'm breastfeeding and if I cut back on calories at all I go down quickly on production. Stress and lack of sleep also make mine go down. My daughter just had her 2nd open heart surgery, so I understand the stress of pumping with a sick child. I've been doing it for almost 16 mos. Have you tried Mother's Milk tea or Mother's Lactation Tonic? Your OB can also prescribe reglan to stimulate production. Good luck! Let me know if I can help.

[hapi2bgf]

Hi. Sorry about the hard pregnancy and early birth. I hope you and the baby are doing well now. Babies and pregnancy are hard enough adding celiacs and food allergies just makes life much harder and more stressful. Do what you can to relax, get help from friends and family, and enjoy the baby. Here's my story.

I have two kids. The first child was full term, but the post partum depression, weight loss, COLIC (for seven months!!! ) all that nearly killed me. I nursed her for seven months exclussively then gave up. The nursing never went easily or well. But it was my first kid what did I know? As soon as I stopped nursing the colic got better. I lost so much weight after the birth that looking back I think the baby was just starving and miserable. She gained just enough weight not to be alarming to the doctors. I lost so much weight people thought I was annorexic or had cancer or something. Turns out years later I found out I had celiacs.

The second pregnancy was pure stress. Glutened at least once a month for 6 months out of 9. Not good! The baby was born a little early but healthy. The early brith was due to another gluten reaction. I nursed that baby too, but I also gave one bottle a day of formula. It helped me to add formula. That way I knew the baby got enough food every day. And it added the flexibility I needed. I had an emergency surgery when she was 5 months old. She got formula while I had the surgery and recovered on heavy drugs. That made me feel better. Turns out this child is allergic to milk. I think she also has Celiacs. When I stopped nursing her she got a terrible rash that did not stop for months. Once again the doctors thought it was ok. When the rash got under control she gained significant weight and grew quite a bit in just two months. At one year old she was wearing 6 mth clothes. The doctors just said this child was pettite. I did not agree. At 15 mths she is in 18 mth clothes and gained 4 lbs. Thats huge for a baby.

So in my experience, follow YOUR GUT with your kids. Document foods, rashes, changes, etc and find a doctor who will treat your opinions as a valuable part in the overall care of any kids you have now or want to have in the future.

I think there is some relationship between the foods you eat exccessively while nursing and the allegies kids develop. That is just my opinion.

[hannahsue01]

Thanks for your replies! It's a little comforting to know why this happened and that I was not the only one. Thinking back I do believe the amount of food I was eating did affect my milk supply. I am dissapointed in the doctors though. The hospital that my daughter was in is sapossed to be one of the best NICUs in the US. However, they knew there was a problem with my milk supply and had me talk to the lactation consultant who kept suggesting I was doing somthing wrong yet I was following what she and all the books said to do to increase milk supply yet niether the nurses or any of the many many doctors (teaching college) ever suggested taking a medication to increase my supply or figure out what the reason was. They just decided I wasn't doing what I was sapossed to and put my baby on doner breat milk. Talk about adding to the depression when you can't supply what you sick baby needs and the doctors say your lazy and not trying hard enough. I have thought about contacting them and telling them what I think of them and that they should help mothers with these problems rather than put them down but have thought against it.

[Michi8]

Thanks for your replies! It's a little comforting to know why this happened and that I was not the only one. Thinking back I do believe the amount of food I was eating did affect my milk supply. I am dissapointed in the doctors though. The hospital that my daughter was in is sapossed to be one of the best NICUs in the US. However, they knew there was a problem with my milk supply and had me talk to the lactation consultant who kept suggesting I was doing somthing wrong yet I was following what she and all the books said to do to increase milk supply yet niether the nurses or any of the many many doctors (teaching college) ever suggested taking a medication to increase my supply or figure out what the reason was. They just decided I wasn't doing what I was sapossed to and put my baby on doner breat milk. Talk about adding to the depression when you can't supply what you sick baby needs and the doctors say your lazy and not trying hard enough. I have thought about contacting them and telling them what I think of them and that they should help mothers with these problems rather than put them down but have thought against it.

I'm sorry to hear about your experience. Unfortunately, not all lactation consultants/doctors/nurses are created equal...and, quite frankly, I've heard some pretty bad breastfeeding advice from some of them. Unfortunately hospitals can be the worst places for breastfeeding friendly practices...seems there is always some practitioner who is trying to undermine your efforts.

There are foods & herbs that can increase your supply and there are foods that can drecrease it (sage for example). You can also buy herbal teas made specifically for breastfeeding. I used one by Gaia Garden Herbal Dispensary (Vancouver, BC) that was very good.

As well, I dont' know if the lacation consultant mentioned this to you, but pumping is nowhere near as efficient as a baby breastfeeding. I remember not being able to pump much of anything in the beginning, and I know some women are never able to pump much, but produce more than enough when baby is nursing. There are so many variables involved, and pumping is such an artificial method -- just a bit of stress can impede production. If you have so-called "experts" telling you you aren't doing it right it makes the situation even worse.

Michelle

[Roxyk]

My daughter was born in March of this year. She was full term & just under 7lbs. I have been "glutened" once since her birth. That day & the next my production was WAY down. She ate constantly & never got enough. it was so very sad.

Pump, drink TONS of water, and eat right - that all helps temendously. So does Mother's Milk tea.

[Fiddle-Faddle]

Hi, I'm sorry this will have to be brief because I have company coming over in a few minutes!

Low thyroid, lack of sleep, stress, dehydration, and low protein-and-low-fat-diets ALL contribute to low milk production!

Best advice I was given: nurse or pump every hour to hour and a half. Yes, I know it sounds nuts, but when a baby goes through a growth spurt, that's how often they want to nurse, and that's what signals the breast to produce more the next feeding. It might take a few days to see any results, but I'm guessing you should see more milk the very next day, and then you can go back toevery 2-3 hours.

The more often you nurse and/or pump, the more milk you will make. It's simple supply and demand. Also, if you do extra pumping or nursing during the day, chances are you won't have to nearly as much through the night!

Good luck--keep us posted, okay?

[Allison H.]

I wish I had found this site when I was pregnant and breastfeeding my first child. I had a very difficult time breastfeeding my first due to supply problems and latch issues. It took 6 days for my milk to come in, and then after my initial engorgement, I had a hard time producing enough. I saw a lactation consultant who discounted having a low supply commenting that it is not a very common problem; many moms just think they have a supply problem. Due to my son not gaining weight well, we had to supplement with formula. I pumped exclusively for 3 months until he latched. Thankfully we only had to supplement for the first 6 weeks. I tried the mother's milk tea and other recommended herbs but nothing worked so I had to go on medication to increase my supply.

I was diagnosed with Celiac about 4 years prior to my pregnancy and maintained a gluten free diet most of the time. We quickly realized that our son is also Celiac and reacted to any gluten I ingested. I am not pregnant with our second child, another boy, and I can tell that he reacts to gluten, too. I have noticed that after a couple infractions he is less active. I often can't tell that I've had gluten and rather my 2 year old son is how I know. He is much more sensitive than I am, probably since I ate gluten for so many years.

I'm glad to have found this forum! I am due Thanksgiving week, but due to a heart condition I have, I'll be delivering around the beginning of November instead.

-Allison H., Celiac

Houson, TX

J.K. 2 years old, Celiac

Baby Boy #2, probably a Celiac, too

[hannahsue01]

I wish I had found this site when I was pregnant and breastfeeding my first child. I had a very difficult time breastfeeding my first due to supply problems and latch issues. It took 6 days for my milk to come in, and then after my initial engorgement, I had a hard time producing enough. I saw a lactation consultant who discounted having a low supply commenting that it is not a very common problem; many moms just think they have a supply problem. Due to my son not gaining weight well, we had to supplement with formula. I pumped exclusively for 3 months until he latched. Thankfully we only had to supplement for the first 6 weeks. I tried the mother's milk tea and other recommended herbs but nothing worked so I had to go on medication to increase my supply.

I was diagnosed with Celiac about 4 years prior to my pregnancy and maintained a gluten free diet most of the time. We quickly realized that our son is also Celiac and reacted to any gluten I ingested. I am not pregnant with our second child, another boy, and I can tell that he reacts to gluten, too. I have noticed that after a couple infractions he is less active. I often can't tell that I've had gluten and rather my 2 year old son is how I know. He is much more sensitive than I am, probably since I ate gluten for so many years.

I'm glad to have found this forum! I am due Thanksgiving week, but due to a heart condition I have, I'll be delivering around the beginning of November instead.

-Allison H., Celiac

Houson, TX

J.K. 2 years old, Celiac

Baby Boy #2, probably a Celiac, too

Congradulations on your second pregnancy! I hope that breast feeding (if you plan to) goes allot better for you this time. I found it really fustrating through my whole experience with my last baby.

[Allison H.]

Congradulations on your second pregnancy! I hope that breast feeding (if you plan to) goes allot better for you this time. I found it really fustrating through my whole experience with my last baby.

I breastfed J.K. until he self-weaned at 23 months, just a couple months ago. I am very much looking forward to breastfeeding this next child, and J.K. if he changes his mind about weaning. I think formula is just too risky and can cause way too many problems. I'm sorry you found it frustrating, but it does get easier. I don't know how long you did, but I think the first 3 months are the toughest. Once the latch is good and no real problems arise, then it's like second nature.