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Diagnosed While Breast Feeding

Sulevismom

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Sulevismom Apprentice
Sulevismom
Posted

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
dandelionmom
Posted

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
Jana315
Posted

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
velveeta
Posted

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
Sulevismom
Posted
  • Author
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
Sulevismom
Posted
  • Author

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
Jana315
Posted

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
elle's mom
Posted

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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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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    • lizzie42
      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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