Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,406
    • Most Online (within 30 mins)
      7,748

    Ripken
    Newest Member
    Ripken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...