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Diagnosed While Breast Feeding


Sulevismom

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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...


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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.


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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.

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    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
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