My Journey with Recurrent Mastitis

Got time for a little story? Sit down.

I’ve had infectious mastitis requiring various antibiotics at least ten times. No, I’m not joking. Being a self-professed expert in breastfeeding, and having breastfed for a consecutive 47 months (no, that is not a typo), this was insanely frustrating.

breastfeeding and celiac disease -

I had seen a breastfeeding medicine specialist at the hospital twice, I had 4 milk cultures taken, and 2 breast ultrasounds, and it seemed no one could figure out why I kept getting mastitis. I was getting pretty good at knowing when it was coming on, but at least once a month for 9 straight months I was on antibiotics. If there’s anything out there about preventing clogs while breastfeeding, believe me I’ve read it or tried it.

At one point, some stubborn dandruff and a pesky rash under my watch led one of my specialists to believe I was dealing with candida mastitis caused by systemic yeast (exacerbated by the constant antibiotics). An anti-fungal helped for about a month, but even though my cutaneous manifestations cleared (and ironically, some of my baby’s too…recurrent diaper rash and a clogged tear duct can be fungal, who knew), the clogs and mastitis did not. When that no longer worked, I stopped it.

Since I have an over supply of breastmilk and had tandem nursed, I thought I knew my issue was mostly caused by removing milk insufficiently (too much milk means too much milk is left behind after nursing, even when the baby is very efficient). So I continued pumping for relief: 20+ oz every morning. There was a time where if I didn’t pump that, I woke up with mastitis the next day. When pumping for relief didn’t seem to stave it off, I weaned from the pump as much as possible. My baby wasn’t drinking my milk out of a bottle so I didn’t need that much (by this point she was 15 months old). I donated for a while, but in September, I stopped needing to.

After my tenth round of antibiotics for mastitis (I honestly lost count then, perhaps it was more…my doctor could tell you, and I met my deductible this year if that tells you anything) this past November, I realized I did not have the capacity to continue down this path. While my daughter wasn’t ready to wean, and emotionally I wasn’t either, I felt this was absolutely my last resort aside from ending up in the ER on an IV because of an abscess. I felt emotionally like I’d burned through all my resources (thanks, depression!) and had no friends or support left.

I eventually discovered, on a whim and hunch (her words, not mine) from the doctor of breastfeeding medicine that the weird rash I randomly got on my breasts was not, in fact, yeast, but either ‘irritant contact dermatitis’ or a mild form of ‘dermatitis herpetiformis.’ What’s that, you say? Well, it’s the skin manifestation many celiac disease patients have when they are exposed to gluten. You may or may not already know that I was diagnosed with celiac disease in 2012, and have been strictly gluten free since then…but it never occurred to me that I could still be bothered by it if I wasn’t eating it!

Gluten. The cause of my recurrent mastitis was gluten. Bless.

Interestingly enough, this issue of recurrent mastitis began when my youngest started solids. Since gluten didn’t seem to bother her, I let her eat it! Upon hearing this doctor’s whim, I decided feeding my babe gluten free while I tried to formulate a plan for weaning was an easy solution. It certainly wasn’t going to make it WORSE, right??

I was frustrated that it hadn’t occurred to me or anyone else (sooner!) that the cause might be dietary on her part, but I learned:

  • exposure to gluten for a celiac patient causes inflammation over time, which is why some people aren’t diagnosed with celiac disease until later (hence the reason I didn’t seem to have these recurrent issues with my oldest despite breastfeeding her for 2 1/2+ years and tandem nursing them together) and inflammation in the breasts causes clogs, which leads to mastitis.
  • the more mastitis you have, the more you are prone to it because of scarring in the ducts left behind by the infection. Ah, good times.
  • the baby’s saliva is taken in by the mother’s breast (this, amazingly, is what makes breastfeeding so nutritious: it’s dynamic. The mother’s breast takes in the baby’s saliva upon latch and instantly begins to develop antibodies to meet her needs. This has been proven over and over, but was personally confirmed for me when my milk cultures showed bacteria that were found in her nose/mouth), so it’s not too far-fetched to think proteins (ahem, gluten) in her mouth and saliva from eating were also entering my breasts and causing a reaction to something I was allergic to.
  • that weird scaly, bumpy, fungal-looking contact rash was probably from the gluten on her hands and face! Bless, if one aspect of mom life isn’t crumbs in your bra, can we even be friends?

It was a cycle that was hard to break because I couldn’t find the source of the initial clog. After 3 days of feeding my daughter a gluten-free diet, I noticed significant improvement in my symptoms. I was reticent but hopeful…could this be the solution, and now I don’t have to feel backed into a corner to wean her prematurely? (I realize some may think 18 months is old enough, that she’s a big kid, and that she doesn’t need it…I’ve even been told, in good times and bad, these things from well-meaning people. Nursing is biologically normal, and neither she nor I was ready to call it quits on such unfortunate terms. I was desperate for ANY solution to help me kick mastitis once and for all, and be able to nurse her when she wanted, for at least 6 more months).

Ten days gluten free, and I still had no issues. Then 3 weeks. Then a month. Then a month and a half… Praise God, now I’m 3 months out from that fateful day in that specialist’s office, crying tears and expressing blood, desperate for a solution that was in front of us the entire time.

I’m so grateful I didn’t have to wean yet, and I bet so is she. When you ask Nora about nursing, she says “Mommy nurse Nora. No Claire. No nurse Daddy. Nurse Nora. Mommy nursies.” I think that about sums it up, don’t you?!