Breastfeeding & Newly Diagnosed... Anyone Else Go Through This?

[ErinIsabel]

I posted yesterday on the "Pre-Diagnosis" board with my story and quickly realized that I need to accept that I very likly DO have celiac. You can find my post under "Brand new Baby + 'Possible' Celiac Diagnosis" for the back story if you want more info. Long story short, I'm 34 and just had my 2nd baby via c-section 7 weeks ago. Three weeks after her birth I became sick and after a month of testing, my doctor told me that I very likely have celiac disease (my test for tissue transglutamase was 170 with 0-19 being normal) and that I need to adhere to a strictly gluten free diet - which i've been doing now for about a week with slightly noticeable results thus far. I still feel very weak, extremely low energy, nauseated after eating, and have severe diahrea (sorry for tmi) a few times a week.

My question is about breastfeeding my baby. I've been desperately trying to continue to nurse her and have so far been successful, however I have had to suplement with formula toward the end of the day because i'm just not making enough milk. I've lost all of the weight i gained during pregnancy plus some and am now 120lbs and 5 feet 7 inches (i normally weigh around 123 so it's not too far off of what i'm used to weighing). However, my family is concerned that the nursing is taking too much energy from my body and is making it harder for me to get well. I'm feeling fairly overwhelmed with this diagnosis and am extremely anxious to feel better so i can properly take care of my family again (i also have a 2 year old son). My baby and I are currently at my parent's home in colorado (my son is with my husband at home) so that i can focus on getting better - so i do have quite a bit of support in terms of childcare for the time being. My baby and I are scheduled to head back home in 10 days.

Has anyone else dealt with trying to nurse a new baby while embarking on this new diet and trying to get well all at the same time? I'm afraid that if i listen to my family and stop breastfeeding, I will regret it in a week or a month when (if) i start feeling somewhat normal again. It's extremely important to me to continue, however, if i need to stop to get better, I will (sadly) do so. Does anyone have any tips of ways to add more calories to my diet at this point in the process or get my milk production up? I've heard that all you need is water to produce more milk, but my baby still seems hungry so maybe my milk is just not as caloric as it could/should be... not sure. FYI, she is completely healthy and is gaining weight (with the help of the formula) so no issues there. Every time i think of putting an end to the nursing it makes me cry... so I'm really hoping someone can help and give me hope that i'm not making the wrong decision... and if I am, maybe i just need to hear it from someone who's been there.

Thank you so much in advance for any help you can provide.

Erin

[deb445]

I posted yesterday on the "Pre-Diagnosis" board with my story and quickly realized that I need to accept that I very likly DO have celiac...

My question is about breastfeeding my baby. I've been desperately trying to continue to nurse her and have so far been successful, however I have had to suplement with formula toward the end of the day because i'm just not making enough milk. I've lost all of the weight i gained during pregnancy plus some ...

However, my family is concerned that the nursing is taking too much energy from my body and is making it harder for me to get well...

Has anyone else dealt with trying to nurse a new baby while embarking on this new diet and trying to get well all at the same time? I'm afraid that if i listen to my family and stop breastfeeding, I will regret it in a week or a month when (if) i start feeling somewhat normal again. It's extremely important to me to continue, however, if i need to stop to get better, I will (sadly) do so. Does anyone have any tips of ways to add more calories to my diet at this point in the process or get my milk production up? ... Every time i think of putting an end to the nursing it makes me cry... so I'm really hoping someone can help and give me hope that i'm not making the wrong decision... and if I am, maybe i just need to hear it from someone who's been there.

Thank you so much in advance for any help you can provide.

Erin

Been there. Hang in there.

Tiring days, and tiring nights. But full of blessings.

I drank lots of nursing tea - and I didn't even have to go to a health food store to get it - my grocery store carried it. I'd make a big pot of it each morning and keep it in the fridge. I also ate lots of avocados, and smoothies with hemp seed. Homeopathic remedy = dulcamara.

I lost my pregnancy weight, and then some too. But, my strength was good - eventually developed a lot of muscle tone carting around my boys around (also 2 years difference between the two).

I breast fed my second son until a little after his second birthday. No regrets. And,I didn't know that I was gluten sensitive, but learned that he was, and changed my diet for him. Then, I started realizing, he wasn't the only one! Skip ahead a few years - we all are! If your baby is also sensitive - your dietary changes will only help your new one. And I think, once you start adjusting to the changes yourself; if that is what you decide, and experimenting with gluten-free flours, you'll likely see that you're not missing anything nutritionally, that you'd otherwise be getting if you were consuming wheat.

I wish you well, and good rest.

I'd love to hear updates on how you're coming along.

[Takala]

Oh, that is rough.

Okay, let's look at 2 things. One, let's see how and if you're still getting accidentally cross contaminated with gluten. How supportive are your relatives that you are currently staying with with this "diet change" regimen, and are they taking it seriously ? Because it is really difficult sometimes for the older generation to "get it," because of either habit or lack of training. You cannot use their old gluten contaminated toasters, wooden cutting boards, colanders used for regular pasta, porous cookware like old teflon, cast iron used for wheat cooking, rubber spatulas, old bakeware with a lot of old gunk in the seams, etc, unless it is new, clean, and gluten- free dedicated. (you can burn off the old finish on cast iron, scrub out, and re- season)

If you are going OMG just remember that you can do a lot with a fresh paper towel laid down on a ceramic plate for food prep, and put a fresh piece of foil down in the toaster when you use it. 2 months ago, even my extremely savvy spouse got me with the toaster oven a few times because I gave him some old gluten free bread that had something in it that didn't work for me. Gaaaah. This is why a toaster oven with a removeable, scrubbable rack is a good idea. Also, if they have the habit of exploding things in the microwave, get them to start COVERING the stuff in there. Paper towels are your friends from now on. So is waxed paper to roll out gluten free dough, either using your hands or a drinking glass or a ceramic rolling pin.

Secondly, let's look at the "other things" in food land that typically bother a person just starting out on the gluten free diet. Everyone is different, and in the beginning, they may be reacting to other foods and not know it, or one of the gluten free ingredients typically found in commercially prepared foods, and not know it, and every intestinal upset can be a bit of a set back. Sometimes tracking down a culprit can be very exasperating.

I am going to make a short list of possible culprits-

[BabsV]

Oh Sweetie, you are in a tough place. I'm so sorry.

The Celiac side of things has been nicely addressed in the previous post. As for nursing...

I wasn't diagnosed when I nursed but I can tell you I found the first 2-3 months absolutely exhausting even without dealing with Celiac Disease. I also remember (from my experience and that of my friends who nursed) that at around 6 weeks (and you're at about 7 weeks right?) babies usually go through a growth spurt and nurse much much more to increase your milk production. It seems like they are starving and can't get enough but it does even out after a couple weeks from what I remember.

One thing that probably saved my life and my sanity was visiting with a lactation consultant. Are there any available in your area? They've seen it all and most are just very interested in making sure that mom and baby have the best experience possible -- if that means supplementing with formula they should be supportive.

Also, my baby was a "sipper" -- she preferred to have loads of small meals throughout the day when she was just new so that whole "infants nurse 8-14 times a day" was totally not what she did. She was nursing all the time or at least it seemed that way to me. I worried that she wasn't getting enough to eat but she was thriving and growing as she should so I just went with it. I did work with her to try to lengthen the time between feedings meaning she had to get really fussy before I'd nurse her -- otherwise I would literally spend every single minute sitting on the couch with her latched on. There is only so much bad daytime tv I can tolerate, and I did want to be able to get a shower on occasion! The lactation consultant worked with me on this...plus helped her to latch on more effectively which seemed to help.

Finally, there is the generation gap in terms of nursing. My mother didn't nurse as bottle-feeding was the standard when my sister and I were born. My husband's mother also didn't nurse. My MIL couldn't comprehend how much effort went into nursing -- but she was from the generation that continued to smoke while pregnant because the doctor told her it would be too stressful to quit after she found she was pregnant?!?! She also was on a strict diet because she didn't want to gain much weight while pregnant. Ah, the 1960s...So if your family members aren't familiar with how intense nursing an infant can be they might think it would be better to switch to formula. They're probably just really worried about you and want to help in any way they can.

However, it sounds like you do not want to stop nursing and so you need to figure out the system that works best for you. I've had lots of friends, especially upon returning to work, nurse in the mornings and evenings but have the baby fed formula during the day so supplementing with formula is one way to go. You also might need to adjust your diet. I had to eat much more protein than I normally did in order to sustain any energy -- nursing burns up serious calories!

I'd say if you at all can stick it out until you get 'home' and are in your own place. Try to find a support group of other nursing moms plus a lactation consultant. Do what you feel is best for your baby and you! There is no 'wrong' way to do this -- healthy baby and mom are the goal. Whatever you have to do to achieve that (all breastmilk,supplemental formula, all formula...whatever) is what you need to do!

[nvsmom]

*hug*

I would reccommend that you get as much sleep as possible, especially while you just have one child as your focus. When a body gets run down, I found nursing became harder... everything was harder and a tired mom doesn't have the mental stamina to take it.

Have you tried bringing baby to your bed if that's something you are comfortable with? I found having my boys in bed with me in those early months made things better because I didn't have to wake up to the same extent to nurse. Perhaps try nursing on your side and do only one breast per feeding in the night.

I wish I could offer more advice but I'm new to the celiac world myself.

Best wishes to you.

[tarnalberry]

I posted yesterday on the "Pre-Diagnosis" board with my story and quickly realized that I need to accept that I very likly DO have celiac. You can find my post under "Brand new Baby + 'Possible' Celiac Diagnosis" for the back story if you want more info. Long story short, I'm 34 and just had my 2nd baby via c-section 7 weeks ago. Three weeks after her birth I became sick and after a month of testing, my doctor told me that I very likely have celiac disease (my test for tissue transglutamase was 170 with 0-19 being normal) and that I need to adhere to a strictly gluten free diet - which i've been doing now for about a week with slightly noticeable results thus far. I still feel very weak, extremely low energy, nauseated after eating, and have severe diahrea (sorry for tmi) a few times a week.

My question is about breastfeeding my baby. I've been desperately trying to continue to nurse her and have so far been successful, however I have had to suplement with formula toward the end of the day because i'm just not making enough milk. I've lost all of the weight i gained during pregnancy plus some and am now 120lbs and 5 feet 7 inches (i normally weigh around 123 so it's not too far off of what i'm used to weighing). However, my family is concerned that the nursing is taking too much energy from my body and is making it harder for me to get well. I'm feeling fairly overwhelmed with this diagnosis and am extremely anxious to feel better so i can properly take care of my family again (i also have a 2 year old son). My baby and I are currently at my parent's home in colorado (my son is with my husband at home) so that i can focus on getting better - so i do have quite a bit of support in terms of childcare for the time being. My baby and I are scheduled to head back home in 10 days.

Has anyone else dealt with trying to nurse a new baby while embarking on this new diet and trying to get well all at the same time? I'm afraid that if i listen to my family and stop breastfeeding, I will regret it in a week or a month when (if) i start feeling somewhat normal again. It's extremely important to me to continue, however, if i need to stop to get better, I will (sadly) do so. Does anyone have any tips of ways to add more calories to my diet at this point in the process or get my milk production up? I've heard that all you need is water to produce more milk, but my baby still seems hungry so maybe my milk is just not as caloric as it could/should be... not sure. FYI, she is completely healthy and is gaining weight (with the help of the formula) so no issues there. Every time i think of putting an end to the nursing it makes me cry... so I'm really hoping someone can help and give me hope that i'm not making the wrong decision... and if I am, maybe i just need to hear it from someone who's been there.

Thank you so much in advance for any help you can provide.

Erin

I would highly encourage you to work with a lactaction consultant if you think you *actually* have low supply. Honestly, the best thing to increase your supply is to nurse more often (assuming that baby has a good latch). The more you remove from the breast, the more it produces. If you are supplementing, you should at least be pumping as well, to provide more stimulation for milk. (My daughter nursed every hour to hour and a half at first - it actually led me to oversupply and silent reflux in her, which is its own issue, but the point is that frequent nursing, and NOT scheduled nursing, is the best way to build supply.)

The second most effective thing for increasing milk production is a calm, relaxing environment and state of mind. So finding ways to help relax your mind about all the expectations you are bringing to yourself may help too. (I know, I know - WAY easier said than done. The first three months of breastfeeding were horrid for me, and while the advice "relax" seems flippant, it is actually very important on a hormonal level. A lactation consultant, or even a good LLL group, may be able to help you figure out how you can do this, realistically, in this situation, as they may have been there themselves.)

It is EXCEEDINGLY rare for your milk to not be calorie-dense enough or nutrient-dense enough for her. It requires fairly significant malnutrition (think famine in a third world country) for breast milk to be affected.

You are recovering from major abdominal surgery, and hormonally adjusting to not having a baby in you any more! These are HUGE changes and can lead to fatigue and weakness all on their own. Particularly at this time, if you haven't had your blood drawn for a nutrient panel since the birth (or at least late in pregnancy), you probably should. Low iron and low vit D are common (and vit D is one of the few things that you CAN alter breastmilk levels by supplementing mom).

Keep eating nutrient dense foods (and gluten containing foods are certainly no prize winners in nutrient or caloric density). Oils/butters on your veggies, nuts and seeds, safe grains, beans, lots of veggies and fruits, meats, eggs... And do EAT!

[MitziG]

Well, I wasn't dx yet when I nursed my two kids, so I gorged away on gluten- but still had trouble making enough milk and had to supplement with formula. I was also very sick and nauseous (probably due to un-dx celiac). And I think that had the most affect on my milk supply.

Definitely stay gluten free. Find a food that sits easy with you (preferably high in protein and fat- avocados, scrambled eggs, beans?) If possible- and eat up!

If fruit sits ok, go for it. Drink drink drink- coconut or almond milk- dairy is probably not going to be your best friend right now, but if you can handle yogurt, that is a good one to add.

As long as your baby keeps grwoing- don't stress too much. A word about supplementing though- because baby isn't nursing much, your milk supply will suffer. Always have her nurse first before you give her a bottle. Remember, women in starving countries successfully nurse their babies- your body WILL find the resources to sustain your child if you force it to. But since those resources will come at the expense of your own body, you need to really focus on your nutrition. Just DON'T let anyone convince you that wheat is a necessary component of that! To you, now and always, wheat is POISON and can do NOTHING good for you or your baby!

[ErinIsabel]

Thank you all so much for your suggestions and support! It makes such a big difference knowing that others have gone through similar situations and survived (half joking, i know i'll survive no matter what happens here . Anyways, I spoke to a lactation consultant today who gave me some more good tips and I think i'm going to do my best to continue nursing my baby while trying to work out this new 'celiac thing'. I know that first and foremost i need to figure out which foods i can and cannot eat so i started from scratch today and will see what tomorrow brings. Thanks again everyone! and if anyone else has advice or similar stories, keep them coming. i really appreciate it and am sure i'll see you all on here in other forums (i have tons of questions and they just keep coming...)

Erin

[StephanieL]

I am sure the LC told you this but supplementing with formula can actually cause a further decrease in supply. As the baby nurses hormones are made that tell your body to make MORE milk. I didn't read through everything (I have an 8month old getting up to nurse or I would).

You are doing great! Keep up the good work and I am so glad you were able to get to an LC!

[Kate129]

I nursed my daughter until she was 13 months and at the same time was undiagnosed (we think it was triggered by pregnancy). Anyway just make sure you drink tons of water. Water helps you produce milk and you definitely need it I you are also having diarehea. Since you obviously shouldn't lose any more weight you might want to consider drinking a gluten free protein shake I know there are quite a few out there. Or you could try just eating more protein meat, nuts, nut butters, dairy if you not have a problem with it ( some people newly diagnosed do). I was determined to nurse my daughter at least a year and I felt so good I made it but I Also ended up having to give her formula to supplement and there is no shame in that. you have to do whatever is best for your baby and that includes taking care of yourself. Good luck!