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Newborn - Mother With Celiac

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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.

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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?

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

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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!

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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.

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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! :)

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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.

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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.

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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:-)

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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.

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:) 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!

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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!)

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
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    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
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    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023