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

Diagnosed While Breast Feeding


Sulevismom

Recommended Posts

Sulevismom Apprentice

Hi

I am a mom to a one and a half year old whom I still breast feed quite a lot. I was diagnosed with celiac disease about two months ago. We're still adjusting our kitchen and lifestyles, so I keep getting glutened. I'm having the most trouble dealing with exhaustion. I am so tired and very anxious all the time, and I think I am probably anemic and lacking in vitamin D (my teeth are in bad shape!). I'm going to get tested for nutrient deficiency hopefully soon. I'm wondering if anyone else has been diagnosed while breast feeding and know what other deficiencies to look out for. Also, some moral support... I hear breast feeding can be draining :P even for those who do not have celiac disease...


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



Celiac.com Sponsor (A8-M):



dandelionmom Enthusiast

I was also diagnosed while breastfeeding a one year old. I continued to nurse her for another year and a few months.

If anything, things got easier when I was following the diet because I didn't struggle with anemia any more. When I got glutened while nursing, dehydration was a problem. So make sure you're getting plenty of fluids.

You've made it this far, while battling untreated celiac disease so I'd say it will be smooth sailing now. :)

Jana315 Apprentice

Hi there, I'm also a gluten-free nursing mama to a 1 1/2 year old! :P I have to say that I am self-diagnosed and since going gluten-free, my energy level has been SO MUCH better despite what mothering a tiny bundle of energy can do to you.

Sorry, I don't have much advise regarding vit.def., but I do take a sub-lingual b-complex and try to remember to take my gluten-free pre-natals & extra calcium also.

GL - hopefully, your energy level will return soon.

Jana

gluten-free since 5/13/2009

Nightshade free since 5/15/2009

Infertility & other unmentionable symptoms

velveeta Rookie

Hi, I am also struggling with changing everything around. Struggling even with accepting the diagnosis.

I am nursing my 2 yo, and I am a LLL Leader. I am actually so glad to be nursing him -- that seems to be the only *right* thing going on in his little gut. Since going gluten-free (the whole family), my little boy finally has normal stools. He had a lot of trouble with sleep in the first few days (detoxing maybe?), but now he is doing better than anyone.

As for you, Mama, be sure to take it as easy as you can. I really recommend taking a good omega 3 supplement -- it really helps with inflammation. I think things are just going to get better for us both, and I would just continue to nurse as you have been.

My older boy is 6 and we are still finding out what all of his sensitivities are. I nursed him a really long time, and I am so glad for it, because he barely ate any food, and he still gained weight and was wonderfully healthy.

Nursing is absolutely the best you can do for your child, especially in this type of situation.

Take care!

Jean

Sulevismom Apprentice
Hi, I am also struggling with changing everything around. Struggling even with accepting the diagnosis.

I am nursing my 2 yo, and I am a LLL Leader. I am actually so glad to be nursing him -- that seems to be the only *right* thing going on in his little gut. Since going gluten-free (the whole family), my little boy finally has normal stools. He had a lot of trouble with sleep in the first few days (detoxing maybe?), but now he is doing better than anyone.

As for you, Mama, be sure to take it as easy as you can. I really recommend taking a good omega 3 supplement -- it really helps with inflammation. I think things are just going to get better for us both, and I would just continue to nurse as you have been.

My older boy is 6 and we are still finding out what all of his sensitivities are. I nursed him a really long time, and I am so glad for it, because he barely ate any food, and he still gained weight and was wonderfully healthy.

Nursing is absolutely the best you can do for your child, especially in this type of situation.

Take care!

Jean

Yes, absolutely! I don't plan on stopping breast feeding any time soon. I believe it's good for both of us, regardless of the possible nutrient deficiency. So far my son has had no digestive problems... knock on wood!

Sulevismom Apprentice

Hi Jana,

I'm glad to hear you are feeling better! I have a question for you since you are also breast feeding: how do you feel when you eat fewer carbs? Or, do you eat fewer carbs? I'm just wondering because I've found that I feel totally wiped out if I don't get enough, but I'm basing that on only a couple experiences. Since then I 've been eating carbs with every meal no matter what. But now, I'm starting to think what might be obvious: whole grains (brown rice) etc, should be used... Before going gluten-free I would hardly ever eat white rice, for example, but now I'm eating whatever I can get that's gluten-free. I guess I should say, I'm not feeling balanced somehow... but test show I don't have anemia (I'm surprised). Sorry, I'm kind of rambling here, trying to write quickly as my son sleeps...

Jess

Hi there, I'm also a gluten-free nursing mama to a 1 1/2 year old! :P I have to say that I am self-diagnosed and since going gluten-free, my energy level has been SO MUCH better despite what mothering a tiny bundle of energy can do to you.

Sorry, I don't have much advise regarding vit.def., but I do take a sub-lingual b-complex and try to remember to take my gluten-free pre-natals & extra calcium also.

GL - hopefully, your energy level will return soon.

Jana

gluten-free since 5/13/2009

Nightshade free since 5/15/2009

Infertility & other unmentionable symptoms

  • 3 weeks later...
Jana315 Apprentice

Hi Jess, Sorry - I just saw your question!

I've not really noticed a difference regarding carbs (except for feeling better, generally without the gluten) - guess I've been successful with keeping them in my diet which may or may not be a good thing, ha, ha.

My carbs consist primarily of Quaker Instant Grits (almost every morning - with or without a couple of fried eggs). White rice, Glutino rice crackers, quinoa, gluten free breads (usually sweet breads/desserts that I make), sweet potatoes & yams, winter squash, etc.

How are you doing? I added you as a "friend" so that hopefully we could PM one another.


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



Celiac.com Sponsor (A8-M):



elle's mom Contributor

Hello, while I was not diagnosed while breastfeeding, I share your feelings in many ways. I, myself have not been diagnosed celiac, but my 4 y.o. daughter is. I have a 2 month old that I am nursing now. She was terribly fussy shortly after us bringing her home (the SAME way my 4 y.o was). My 4 y.o. was labeled as "colicky" as a baby, but after she was diagnosed at 2 1/2 with celiac I wondered if my gluten containing breastmilk had been bothering her all along while she was a baby. The pediatrician told me no, that gluten doesn't pass through breastmilk. Well, since my new baby was following the same path I did some research and found that although gluten doesn't pass through, gliadin the protein portion that causes the problem DOES. So, I went gluten free about a month ago-for her sake-she showed considerable improvement. Then about 3 weeks ago, I also went dairy free due to some signs she was also sensitive to that-what a HUGE difference in her temperament. It is really hard for me, since neither gluten or dairy bother me, but I don't want to quit breastfeeding. Good for you on sticking with it! I nursed my three older kids for 12 months, and hopefully I can get at least to that point. I give you credit, being new to gluten free is hard-really hard. Finding the right products and options to have handy in your house is the key. Let me know if you want, I can give you a list of some very tasty gluten-free pasta, bread, and brownies!

As far as the nutrient defieciencies, I know they told me to take a calcium supplement while I was breastfeeding my third, even though I wasn't gluten-free then-in addition to my regular prenatal vit. Maybe you should take an iron supplement too.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • 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.