Four years ago, I started Milk Free Mama in a cathartic attempt to document my journey going dairy free. Giving up my favorites, cheese and ice cream, wouldn’t be easy, but in my opinion, it was worth it so that I could continue breastfeeding my three month old son. He was diagnosed with a dairy allergy after finding blood in his stool (an uncomfortable image I know). I overhauled my diet – eliminating dairy, soy, nuts, and eggs. What was a girl to eat? I noticed my son was still showing some signs of intestinal discomfort and it was then that I learned my prenatal vitamin contained soy! Are you kidding me!? A month of no soy sauce or edamame and I was still filling my body with crap in the form of a vitamin!? Needless to say, I was not a happy mama and I quickly switched my vitamins.
Ready, set, diet change
I was slowly allowed to reintroduce nuts and eggs (baked into a cake) into my diet and my little guy had no signs of distress. Hooray! I tried dairy and he had a poor reaction, so I bid farewell to the former cheese loving woman I used to be and vowed that I would NOT eat dairy until he could.
Slowly my blog morphed into an anecdotal space for me to chat about my family life and to share stories about my experience. I started to experiment with new recipes and I learned the value of good for you foods and healthy fats versus diet fads of yester-year. What did I miss the most? Ice cream? So I searched for dairy-free alternatives. Tried a few until I found one I truly loved.
Dealing with allergies has taught me so much. It taught me to be much more mindful about what I put into my body. It taught me to be a better cook. It taught me to be an advocate. And it taught me how to truly enjoy the foods I can eat. I started sparingly eating steak again, tried shrimp, expanded my use of spices.
It’s been a journey of self and health discovery. But now this little blog about becoming milk free is taking a dramatic turn as I make drastic attempts to reclaim my own health… So here goes.
Seven years ago, after I completed thirteen months of nursing my oldest, I came down with a very bad virus. It was a day after being matron-of-honor in my dear friend’s wedding and I attributed it to being out in the early October chill with no jacket in a sleeveless dress and countless handshakes and kisses from well-intentioned wedding guests. After all, I led a pretty sheltered existence from the time I got pregnant through the end of nursing – I spent a large part of my pregnancy on a leukemia floor of the hospital in sterile gowns (visiting my aunt) and had a baby during the swine flu outbreak basically avoiding other human contact for several months. I became a bit of a germaphobe (ok not a bit, a lot).
Celebrating my friends as Matron of Honor – pre-illness.
So back to the virus. My throat closed. I felt very ill. The ENT put me on a whole host of inhalers and antibiotics. It was system overload as I tried to fight the virus for several weeks. By NYE that December, I was in the ER, having difficulty breathing. Great way to spend NYE with a one and a half year old at home. They gave me nebulizers and sent me home with no explanation. I was fortunate to have my family rally around me, offering support as I underwent pulmonological examinations. There was a concern I may have COPD as my oxygenation levels were low so I underwent a right heart cath – a procedure where they put a catheter into your heart. Needless to say, I was hysterical, because unlike two years earlier when I underwent invasive pelvic and abdominal surgery, now I was a mother, and the thought of dying freaked me the fuck out ten-fold.
Well the heart cath came back normal and the pulminologist said I was fine from a lung/heart standpoint and he suggested I explore that it may be anxiety. Of course, a male doctor telling a young female patient she was hormonal and anxious — totally a misogynistic diagnosis. Maybe he was just incapable of delving further or maybe he was too egotistical to admit he was clueless. Regardless, I knew my body (just like I knew something was wrong when I had a tumor brewing and the doctors said I was fine). I was not fine.
I sought out acupuncture and I finally found someone who spoke my language. She listened to my concerns, connected the different issues I was having, said my yin and yang were misaligned and was convinced whatever virus I had was trapped deep within my body. She stuck needles everywhere, helped me drink chinese herbal teas (which I had to brew in a special pot and smelled so vile and looked and tasted like dirt). She did cupping and my back turned black. (For those of you that don’t know what cupping is, it’s fabulous! Little glass bulbs attached to your back with heat, suctioning to your skin, bringing contaminants in your body to the surface – feels amazing!). I bought into the acupuncture culture and became a true believer. My case was a mystery to her as well, but she never stopped trying to get me well. She consulted with medical books and used her time working in a clinic in China to ask questions and to study similar cases. And for some time, I was well enough to walk up and down a flight of stairs again without feeling winded. I was able to carry my son without crying or feeling flushed. I was able to breathe a little easier and I started to feel healthy. I was even able to get pregnant again. And she needled me in all the safe places to help the pregnancy stick.
Nine months later I welcomed another son, after a pregnancy where I felt fantastic. I nursed again and felt great. And then while I was coming close to the end of a year of nursing, I got pregnant again. Another healthy and successful pregnancy, followed by another fourteen months of nursing. But this time, I had to adjust my diet for my allergic baby and I slowly started experiencing signs and symptoms of personal distress.
Frequent infections, sinusitis, night sweats, low blood pressure, breathing issues. Thyroid testing showed the beginnings of hypothyroidism and I started on medication for a month. Adverse reaction and I was off the medication and my thyroid regulated. I saw a functional medicine practitioner and we talked about supplements and elimination diets. Lots of blood work later, it was determined I am allergic to gluten, tapioca, millet, coffee, casein. I was advised to stay away from dairy and soy. My immunologist conquered. He worked tirelessly to find an answer. He was willing to try anything. Even prescribed me Nystatin, a treatment used YEARS ago and no longer seemed viable, to try to eliminate a possible systemic yeast overgrowth in my body. Still nothing.
A moment of weakness – a good cry and I was able to move on with the day.
Periods of health mixed with periods of extreme discomfort. Two sinus surgeries. Which fast forward, brings us to today. Years later, I am still suffering. My symptoms are systemic and basically affect all aspects of my health. I am not crazy. I may be a bit anxious (thank you three sons and a type A personality and a husband who sometimes acts like a fourth son – love you babe). But I am not crazy. My immunologist concurs, and he’s a doctor. He agrees that all of my symptoms correlate, but we are yet to pinpoint exactly what is wrong.
Completely opacified sinus just two years after my first surgery.
And then I herniated two discs in my neck and exacerbated a previous knee injury and the past two years have seemed like a nightmare. But as any strong-willed mama can attest, there is no rest for the weary when you’re a mom and you have no choice but to slap on your makeup and get your ass out the door. Day in and day out.
After countless, I mean countless – way too many to even fit on hands and toes – doctor appointments, blood tests, etc, my immunologist finally got me approved for IgG infusions – Gamaglobulin replacement. We had talked about it in the past, and even once I was approved, I hesitated. Gamaglobulin can be administered intravenously or subcutaneously. I was approved for subcutaneous, which means placing two small needles in my stomach, infusing the medication under the skin. Once per week, indefinitely, as it’s cumulative. The hope is that the infusions will bolster my immune system and help with a myriad of symptoms.
So I bit the bullet and before the end of 2017, I had a private nurse come to my home on three separate occasions to administer the medication. The first time, I panicked. The second time, I was okay. The third time I didn’t feel well. Suddenly, I was plagued with severe body pain and terrible headaches. The headaches can be a result, but the body pain? Not so much according to the nurse. The fourth time, I had to self-administer. It was a bad night to begin with. The hubs and I were in an argument, the holidays were approaching, I was feeling sad, the kids were acting up.
All hooked up for my infusion. Leaves me nice and swollen in a part of the body a women never wants to feel round!
Let me walk you through it. I was sweating and shaking with fear. I washed my hands, set a sterile field, primed the medication, connected the needles and tubing, set the pump, inserted the needles, pulled back to check for blood in the line, and then turned the pump on. Two hours later, the medication was infused, the pump was put away, and I cried myself to sleep. It takes about ninety-minutes once the pump begins. It’s a long process, but with a good TV show and a bowl of cashew ice cream, it’s not that bad.
Which brings me to this past Tuesday night. About to set up my pump, I had an outbreak of hives right in the administration site. I spoke to the nurse and she told me to choose a new spot higher up or to the side of the hives and continue. So two benadryl and two advils later, my needles were in and I was ready to go.
One of the many itchy spot photos I texted to my cousin (because she should see it, no?)
Wednesday morning, I had an appointment with the immunologist and we discussed my myriad of symptoms, a possible visit to the Mayo Clinic, and then we moved onto the hives. And suddenly, a lightbulb went off in the doctor’s head. “Hives? Interesting.” As an allergist/immunologist, he’d already tested me for a whole host of allergens and the dermatologist already identified chemical allergies, which had me throwing my detergent, soaps, and hair products in the garbage and starting fresh with fragrance free everything. A period of relief and then… Hives again! So he suggested I try a low histamine diet and two weeks with an anti-histamine. As I scratched my skin in his office, he said that it’s time to continue with trial and error exploration to get to the bottom of my ailments. He mentioned Mast Cell Disorder in passing and sent me home to do some research.
Hives and bumps are awesome, right???
And research I did. I spent hours reading about low-histamine diets and Mast Cell Disorder and it was like I found my community of fellow sufferers. Tons of people documented symptoms so close to mine. Many of them said they were dismissed by doctors for years as “crazy” or “anxious.” The symptoms include:
- headaches/migraines – CHECK! (currently receiving nerve block shots)
- difficulty falling asleep and waking. – CHECK!
- dizziness – CHECK!
- low blood pressure – CHECK!
- heart palpitations – CHECK!
- difficulty regulating body temperature – CHECK!
- abdominal cramps – CHECK!
- nasal congestion, difficulty breathing, sinus pain – CHECK!!!
- abnormal menstruation – CHECK!
- hives – CHECK!
- fatigue – CHECK!
I also discovered that the symptoms can include body pain (check) and that it can be worse in women because of the hormone cycle. So basically, pre and during menstruation you could feel sick and symptomatic because of less hormones. But get this, during pregnancy, the influx of hormones can mask symptoms and many pregnant women report feeling better than ever when pregnant — YUP! That fits the bill with me.
Just a heart monitor I had to wear for a month. Notice my enthusiastic smile.
So while I still DO NOT have an official diagnosis, I feel hopeful that there is a community of people that have suffered without answers until they discovered this diagnosis. And with this diagnosis comes a specific elimination diet. And that’s where this change in Milk Free Mama begins. I am about to embark on a minimum of two week elimination diet, cutting many healthy foods I eat daily, but are high histamine releasers.
A glam moment before officiating my cousin’s wedding. Wasn’t feeling great the day before or morning of, but I pushed through.
I am sharing this journey with you, my wonderful readers, friends, and family for two reasons. Just as I needed to write about my journey when I went dairy free, then gluten free, I now need it more than ever as I drop foods I exist on like strawberries, nuts, avocados… And I am also blogging about this experience because I know that there are others out there dealing with similar issues. Others that are being dismissed as anxious hypochondriacs when they are suffering tremendously. Others that need to hear my story to feel hope, just as I found hope in the stories of others.
So with that, I am OVER-indulging in all the no-no foods for the next few days because before I kiss tomatoes and wine and chocolate goodbye (temporarily, in moderation, or forever), I want to enjoy! This will be a journey in discovering how to nourish my body, mind, and soul and I look forward to sharing it with you.
Do I really need to part with dried cranberries, cinnamon, and nuts!?
Very rarely eat gluten free pasta, but since I have to give up tomatoes soon, I figure why not make a GF, DF baked ziti.