I’ve been following a gluten-free (GF), dairy-free (DF) diet for 5 years now, eating mostly by the paleo guidelines for health reasons. Since I don’t have Celiac disease, I am often asked “so you are gluten-free by choice?”. That question used to really bother me (I mean really bother me), but I’ve gotten over it. Anyways, to spread some awareness of the autoimmune health issues triggered by certain foods, I’m giving you a brief rundown of my health issues and what I’ve done in the past 5 years to overcome them.
Looking back, I can tell that I’ve always had autoimmune issues, but when you are living with certain symptoms and pain, they become your “normal” and you don’t realize that you even had them until they go away. I always had headaches in the back of my head and stomach aches, and both got worse as I got older. I remember going on a family ski trip to Big Sky, Montana and laying on the floor of the condo with my head resting on an ice pack, crying, while the rest of the family went tubing down the ski hill. That same trip I also ran to the movie theater bathroom in the middle of a movie thinking I was going to throw up (after a spaghetti dinner, go figure). The headaches and stomach aches really started to bother me on a daily basis my last two years of college. I would wake up every morning and pop two ibuprofen to start the day. I’d then take more later in the day, and I was going to student health for swollen glands and a sore throat every month my senior year. I never felt “good” but the doctors told me that I had post-nasal drip from a cold, and I must just be run down from stress and little sleep. What else to do but carry on, right?
After college, I moved back to Wisconsin and started my first full-time job. If stress was a trigger (which it often is in autoimmune disorders), the long hours and 100% travel for work did NOT help. The headaches and stomachaches got worse and I also started getting swelling and joint pain in my hands (my rings didn’t fit anymore), anxiety/depression, cold sores in my mouth, and significant hair loss. I got an MRI for the headaches to check for tumors or Chiari malformation, and the scan came back negative (normal). The doctors were still telling me that it was caused by stress. Finally, enough was enough and I quit my job.
I moved back home with my parents and things continued to get worse – I started getting very swollen and bloated and gaining weight. When I tried to exercise, I would pass out and/or throw up. The doctors kept testing my thyroid levels and they kept coming back within the normal range. Later on, we tested my Antinuclear Antibody (ANA) levels and they were off the charts, indicating my immune system was way fired up. I woke up one morning and the glands in my neck were so swollen and painful that I could barely swallow. I went to the ENT, we did a CT scan, and he recommended I have a chain of lymph nodes removed and a tonsillectomy. I also had an endoscopy and colonoscopy to test for various problems, including Celiac disease. My mom and I started going to doctors appointments what felt like every week. In addition to my family medicine doctor, we saw a gastroenterologist for the stomach aches, an ENT for the sore throat, swollen glands, and cold sores, and a rheumatologist for the swollen hands and joint pain. The doctors thought there were multiple things wrong and that we should treat each symptom individually. (I could go on and on about western medicine doctors, their training, and approach to treatment, but I’ll save that for another time.) After a few months of appointments, I was diagnosed with acid reflux (the Celiac biopsy came back negative), lupus, and fibromyalgia. I was put on a heavy course of Dexilant (a prescription acid reflux med) and omeprizole (generic Prisolec) to get the stomach inflammation down. The rheumatologist also wanted me to start steroids for lupus and pain meds for fibromyalgia. Something inside me told me that I just didn’t have those conditions…so I told him I wanted to think about next steps before I started the meds. (I also really didn’t like that doctor and didn’t plan on ever seeing him again.)
I started doing my own research online and I came across forums discussing the positive impact of a low-inflammatory food diet on people suffering from lupus. The main concept was that eating low-inflammatory foods could help lessen the load on your immune system and reduce the swelling in your joints. I figured it was worth a shot – there really was nothing to lose by changing my diet. I went on a strict elimination diet – no gluten, no dairy, no grains, no corn, no soy, no nuts, no eggs, limited sugar…I basically ate plain chicken breast and veggies for 3 months straight. Salad for breakfast isn’t the most fun, but after those three months I was starting to feel better. I reintroduced eggs and nuts without issue. After just six months, my ANA blood levels were back within normal range! No more acid reflux, and no lupus or fibromyalgia (chronic diseases that can’t be cured). None of the doctors could believe it, not even my gastroenterologist. Their response was that if I thought it was working, just stick with it. Since then, I’ve been strictly gluten-free and dairy-free and have figured out what I can and can’t tolerate through trial and error.
2012 – Present
Today I am still gluten-free and dairy-free. I try to limit my grains (I do have rice and sometimes corn) and avoid soy and anything GMO. I follow a pretty standard paleo diet – sometimes more auto-immune paleo (AIP), and other times more flexible (eating GF grains like rice and corn) depending on how I have been feeling. The stomach aches, swollen hands and joint pain, and headaches are always the first indicator that I ate something wrong. Anyone with similar issues can tell you that a flare-up will last days…even if the food leaves your stomach, the antibodies will remain in your bloodstream for much longer.
I was able to eat and tolerate dairy while pregnant (omg…ice cream! finally!) but sadly I feel very sick again when I eat it now. I also tried a small amount of gluten three times while pregnant (once in each trimester) and that made me sick while pregnant, too. I also ate more GF carbs while pregnant and even still while breastfeeding because I need so many more calories and I need the energy.
I’ve followed the paleo diet for 5 years now and tried the different variations – Whole9 (before the Hartwigs came out with the Whole30 cookbook), 21 Day Sugar Detox, and AIP Paleo. I now say my diet is “pale-you” – a term coined by The Paleo Chef Mary Shenouda, which basically means, use the paleo diet as a guideline but eat what works for you and your body, not because someone says there are certain rules to follow (DUH).
So yes, I am GF and DF “by choice” because I don’t want to feel like sh*t all the time. My poor husband has seen, heard, and smelled way too much! But thank goodness for him because he’s also rubbed my back and held my hand while I’ve suffered through a lot of painful days and sleepless nights. The best advice I can give to you is:
- Be your own advocate! If you are suffering from health issues, take control and work with doctors to find out what truly is wrong. Find doctors you like, get second or third opinions, do your research (no, not everything on the internet is true – read books, too), and go with your gut feelings.
- Don’t judge others for their diet and lifestyle choices! You don’t know what they’ve been through. Let me tell you, physical suffering brings on a lot of mental and emotional suffering, too. It sucks when you already feel down and your friends and family are judging you or bombarding you with questions. Also, there will always be people who eat a certain way because it is a “fad diet” and they want to be cool or lose weight. Whatever…there are bigger things to worry about, seriously. People with real health issues are not doing it to lose weight. Be kind and offer less judgement, more respect.
If any of you have had similar experiences, I would love to hear about them and how you’ve overcome your issues. I’m also open to chatting with anyone who has questions and wants to know more! To many more years of health and happiness…