Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Newborn - Mother With Celiac


Swimmr

Recommended Posts

Swimmr Contributor

Hi all...it's been QUITE a long time since I've posted. But I have been lurking here and there. My elimination diet was successful by the way.

So in that amount of time that I've been MIA, I managed to get myself pregnant and hubby got deployed. He's due back really soon. However I went into labor 4 days before my EDD. My biggest fear was that she would have Celiac like me. DH has never been tested and doesn't want to. I can't talk him in to it - even for the sake of our baby. He says that it wouldn't matter since I'm Celiac and we all eat gluten free anyways. Well...right now my baby is 9 days old. Her poops look like they are supposed to so I'm sorta looking for other ways I can know if something I am eating is bothering her gut. I know that most Celiacs will have at least ONE other intolerance to something. For me it's soy. So I stay soy and gluten free.

I am too nervous/scared to try an elimination diet while breast feeding. I feel it would cause me a little too much stress. I did one over a year ago for myself with success, like I mentioned but I just don't feel it's "safe" to do for my daughter.

Whats happening is during feeding or right after she'll go from 0 to screaming bloody murder like I pinched the crap out of her. She seems angry/mad. I'll do everything - swaddling, rocking, talking to her, reading to her, shooshing her, bouncing, etc. I can't figure out what it is aside that it may just be something as simple as her fighting going back to sleep and since she is so new, there are so many things that both of us are still unsure about. Ya know?

Anyways, what can I do now or what signs are there that would ease my mind that she is getting ahold of something through my milk?

Thanks all.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Di2011 Enthusiast

What is your gluten free routine? NO wheat, etc.?

Have you had to be careful about wheat/gluten derivatives when you were gluten-free?

What products are you using or using with bub for bathroom - soap, shampoos etc?

Di2011 Enthusiast

and never (like I did) think (be told) that it could be something that wasn't coming from you

GottaSki Mentor

First - Congratulations on the birth of your beautiful baby girl!

Second - Thanks to you and your husband for his service to our country.

Third - If you don't take care of you, you won't be able to care for your baby. Celiac does indeed run in families. All three of my children and two grands have at least a major gluten intolerance along with intolerance for a variety of other foods. It took over 25 years for me to be diagnosed Celiac and I still got sicker until I removed everything that was offending my body. I got a gene test and carry a pair of one celiac gene and one of another...because of the pair...all of my kids carry at least one gene.

If you already had success on elimination diet...what did you find were your problem foods? If you just eliminate those there are plenty of the most healthy foods for you and the little one left (btw - I nursed all my kids and each one had strange reaction to one food (different food for each) back then I was no where near a celiac dx and just thought some foods "bothered me" so it made since that some would bother my kids.

I am no doctor...if you are staying gluten and soy free for yourself...the extreme pain could be caused by somehting else. My DH (not celiac) had pyloric sphincter valve problem as infant - which is more common than you would think....he projectile vomited until it was taken care of...that runs in families too...luckily me kids didn't get it...but my nephews did. Talk to your pediatrician...

Also...silly question but are you patting her back until you get a good burp? With one of my kids it took forever to work that bubbles out, if I didn't get them out he was very sad shortly after eating.

Good luck to you - all three!

Swimmr Contributor

What is your gluten free routine? NO wheat, etc.?

Have you had to be careful about wheat/gluten derivatives when you were gluten-free?

What products are you using or using with bub for bathroom - soap, shampoos etc?

I'm exclusively gluten free...all derivatives, everything. I have always followed cc issues carefully and do not subject myself to them down to the toaster and baking racks in the oven. I don't not think it can't be anywhere. My coworkers thought I was a bit psychotic, but whatev.

I haven't fully "bathed" her yet. She's had a few wipe downs with a lavender and chamomile tea mixture with a drop of olive oil and a drop of castile soap. Her skin looks pretty good except for the lingering "newborn" rash. But that is clearing up nicely.

Swimmr Contributor

First - Congratulations on the birth of your beautiful baby girl!

Second - Thanks to you and your husband for his service to our country.

Third - If you don't take care of you, you won't be able to care for your baby. Celiac does indeed run in families. All three of my children and two grands have at least a major gluten intolerance along with intolerance for a variety of other foods. It took over 25 years for me to be diagnosed Celiac and I still got sicker until I removed everything that was offending my body. I got a gene test and carry a pair of one celiac gene and one of another...because of the pair...all of my kids carry at least one gene.

If you already had success on elimination diet...what did you find were your problem foods? If you just eliminate those there are plenty of the most healthy foods for you and the little one left (btw - I nursed all my kids and each one had strange reaction to one food (different food for each) back then I was no where near a celiac dx and just thought some foods "bothered me" so it made since that some would bother my kids.

I am no doctor...if you are staying gluten and soy free for yourself...the extreme pain could be caused by somehting else. My DH (not celiac) had pyloric sphincter valve problem as infant - which is more common than you would think....he projectile vomited until it was taken care of...that runs in families too...luckily me kids didn't get it...but my nephews did. Talk to your pediatrician...

Also...silly question but are you patting her back until you get a good burp? With one of my kids it took forever to work that bubbles out, if I didn't get them out he was very sad shortly after eating.

Good luck to you - all three!

Thank you and thank you :) Yeah I wasn't gluten free till 2007, also 25 years as yourself.

My elimination diet revealed that I most def have an issue with soy. Green peas not so much anymore and corn was an issue, but not anymore. So soy is the only other allergen I am intolerant to besides gluten, of course. So my milk IS gluten/soy free.

When I pat her back I almost feel as if I'm beating her, lol...I know that with babies some need a "good" long patting. She most times DOES burp.

I'm leaving to the side that she's just cranky and not sure what she wants. She always start rooting when she has the screaming fits, but once I put her on my boob she'll pretend to want it for a few seconds and start thrashing her arms and grabbing my boob and will shake her head as if to say, "I want it, I don't want it...I WANT IT...I DON'T" - I *think* she wants to be pacified without the flow of milk. Does that make sense?

I just really hope she's not having issues from me. Right now my diet includes: Eggs, with a tad bit of shredded cheese, oatmeal, apples, bananas, chicken, potato, jasmine rice, carrots, cantaloupe, orange juice, LOTS of water, green beans....some hamburger...nothing out of the ordinary. The only thing I thought it could be was the cheese and eggs. I think I'm going to stay away from those two things starting Monday and see what happens. That is if she still has her screaming fits.

Thanks! :)

GottaSki Mentor

Take her to see her doctor...my Granddaughter was just like that and it was something structural with her digestive system. Highly doubt anything you are eating could bring the reactions she is having. I sent you my email address in case you want to chat as I don't always check this forum.

Have a good day! Get some rest whenever you can.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Roda Rising Star

Dairy can be problematic for for babies. I had to eliminate dairy with both my boys. They would scream for hours. I was not gluten free for either one. For my oldest son, dairy was the only thing I eliminated and after that he was as happy as a lark. I had to eliminate much more for my youngest, dairy, rice, oats and tree nuts.

glutenfreemamax2 Enthusiast

Ok, here is the certified lactation counselors' view :-)

1. Are you on any meds?

2. What kind of delivery (section/vaginal)

3. Can you feel yourself let down (tingle)?

4. Did you get engourged?

5. Do you own a pump?

Could be dairy and eggs. Also look at the oj. Very acidy.

I am nursing a 3 month old. I'm gluten-free and have been through my pregnancy. If I get to much cheese he's miserable. I feel your pain:-)

Swimmr Contributor

Ok, here is the certified lactation counselors' view :-)

1. Are you on any meds?

2. What kind of delivery (section/vaginal)

3. Can you feel yourself let down (tingle)?

4. Did you get engourged?

5. Do you own a pump?

Could be dairy and eggs. Also look at the oj. Very acidy.

I am nursing a 3 month old. I'm gluten-free and have been through my pregnancy. If I get to much cheese he's miserable. I feel your pain:-)

:)

1. I am on valtrex, however have been scared to take it even though it's safe. Haven't had any since her birth date (11-7). But I am taking a prenatal still, which I was taking 8 months prior to conception for the vitamin D content. I take a fish oil and have been through out pregnancy. I also take a probiotic and have been since 8 months prior to conception. That's all.

2. I had a home water birth - vaginal of course biggrin.gif (I say that with loads of pride).

3. I haven't noticed a "tingle" when I let down. SOMEtimes I'll let down before I can get her on me...other times she's on me so quick because I try not to let her get fussy. I feed on que, not demand. I suppose the tingle I feel a couple seconds after she latches could be the tingle I read about. Not sure, really.

4. Nope. I was extremely full the first night I had all my milk in...I started getting it in the second day after birth. The third day I had it all and that night I was really full, but no engorgement.

5. I don't own a pump...yet. I'm getting one. I will need one later.

StephanieL Enthusiast

:) I had a home water birth

WTG on a home water birth! I just had my second home birth (10/4)

I am wondering if overactive letdown is a possibility? I know my little man gets really angry when I letdown. I try and take hi off and let the milk go onto a burp cloth and then re-latch him.

If his diapers are fine, skin is fine and no "red ring" around his anus, I would not look at allergies/intolerances.

Good luck Mama!

tarnalberry Community Regular

Sounds like fairly normal breastfeeding issues. It also sounds like you might have wither oversupply and/ or overactive letdown. I highly recommend reading everything you can on kellymom.com (GREAT respite on breastfeedif), go to a La Leche League meeting for some help, and maybe find a lactation consultant. (Might even look for a postpartum doula!)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.