From Gluten Queen to Holistic Health Coach
By: Dana Camera
Companion Magazine Contributor
I was diagnosed with Crohn’s disease in 1996, within 3 months I needed my first of 3 small bowel resections. Honestly, I didn’t even know what Crohn’s disease was. I had heard of it, but I knew nothing. I heard of a book called, Breaking the Vicious Cycle, by Elaine Gottschall. I remember going on that diet for about 4 weeks and I was symptom-free for several months, but nothing about diet clicked for me at this point.
I need to make a note, that I am an emotional eater and being an emotional eater sabotaged my healing journey for years. Crohn’s disease impacted my life for years.
I was always fatigued, sometimes, listless. I was anemic. I had low albumin, which meant that my lower extremities/ankles would get swollen and I was horrified and embarrassed. I had intermittent pain which became severe during my flare ups. I didn’t want to socialize and became somewhat withdrawn. I stopped dating and avoided serious relationships. I lost my sense of self.
Besides the surgeries, I also had a few hospital stays, due to blockages and dehydration. I was on approximately 10 different medications, in which I started to have 8 of 10 side effects. Side effects included: diarrhea, loss of appetite, headaches, fatigue, moodiness, nausea and joint pain. In order to have a Remicade treatment (this excludes the 1 st one), I had to do prednisone 3days prior, solumedrol, phenergan, benadryl during the treatment and I usually had to take the next day off because of the side effects of these medications. My treatments were every 8 weeks. I must have had 2 dozen colonoscopies and endoscopies from the onset of the diagnosis. I was always at the DR and that became “normal”.
1. 1996: 3 months after diagnosis. They said I had at least an 8 inch narrowing in my ileum and that it needed to be resected. They removed my ileo-cecal valve, my appendix and about 8 inches of my ileum and 2 inches of my cecum. I also had an abscess causing spiking fevers. The surgeon said that I had diffuse disease all over and that he couldn’t keep cutting away at it. I asked them what to eat and all of the medical professionals told me to eat what I wanted. (!?!). At that point I had lost about 40 pounds, I was overweight when all of this started and I was thin for the first time since I was 5! About 2 months after surgery I felt amazing and my appetite was insatiable and I proceeded to gain all of the weight back in about 12 weeks (OMG). My hair was falling out because I was so malnourished and it turned from wavy to straight. I came back, I got a short haircut and it grew in nicely. About 3 months after surgery, I started having symptoms again….(during this time I was in school, working FT at a job I had been at for 12 years and changing careers)
2. 1999: Second surgery. I had relocated to Maryland, left the majority of my family and friends. I got a job at Georgetown in my new career as an ultrasound tech and my focus was high risk OB, infertility and gynecology. This surgery I had 18 inches of my ileum removed. At this point, my gastroenterologist was highly medically aggressive, meaning she prescribed a ton of medications and coaxed me into Remicade (against my intuition). I was on Flagyl and Levaquin for 4 years straight!
I was on Pentasa, Prevacid and many other medications to manage the side effects of these medications, it was ridiculous, but I was “in it”. I couldn’t see outside this merry-go-round I was on! I was a study patient for the camera capsule and it was after this that she recommended Remicade because she saw microscopic inflammation. The first infusion, I felt like supergirl, the 2nd infusion I had my first allergic reaction, then the medications tripled before and during the infusion. AT this time in my life I became withdrawn, lethargic and pretty much anti social.
In 2004, I sought holistic care. Conventional care was not working for me. I was on so many medications, including Remicade (2002-2004), that I started having reactions to every medication I was on, including Remicade in which I had an anaphylactic reaction, after a 2 year period (2/2004). My liver was becoming toxic, I had a systemic candida infection (Flagyl and Levaquin for 4 years) and I lost 20 pounds in 6 months without dieting. Remember, I had been a professional dieter for decades by this point and never was I able to just lose weight.
I called a holistic practitioner. She was a chemical molecular biologist, recommended to me by my sister, who had cured herself of a few health related issues. I sent in my blood work and long list of medications. She informed me of my Candida issue. I started a whole foods cleanse that addressed my liver and candida issues. My diet took a complete 360 basically overnight, I WAS an all or nothing type of person then, symptom of emotional eating. What I learned about food was that food is better than medicine, at least for me. My blood work came back normal in 8 weeks, it hadn’t been normal in 8 years at that point! I was astonished!
However, it was difficult to stick to this way of eating, due to my emotional attachment to food.
2008: 3rd surgery. I left my job at Georgetown in 2006 after 9 years and became the lead tech at a private practice. In 2007, I moved back to NY and decided to go into business with my best friend and her boyfriend. The amount of stress due to this decision was beyond imaginable for me. It was a toxic relationship and it pushed me over the edge. We opened a panini/coffee shop and I threw my diet out the window.
I was drinking coffee and eating crap more often than not. I was not managing my stress at all, I was never taught how. This started in 5/2007, I left in 11/07 and I was hospitalized in 2/08 (ER)(dehydration) and then 3/08 (dehydration-really thought I was dying)(hospital for 5 days). I was throwing up everyday or every other day which led to these 2 ER visits. I had a blocked up in my jejunum and I was in complete denial and down to 97 pounds! Hence my 3rd surgery, they took out a foot of my small intestines and the surgeon recommended I go on a small bowel transplant list! I was like NO WAY.
I told myself to grow up, it’s only food and get serious about healing my body!
And I did…. My family and friends were my support system. I was lucky and am still lucky to this day ☺ I went to a couple of Crohn’s and Colitis support meetings, but I didn’t find it helpful, I found the people negative and I didn’t need negativity. I’m honest with my clients about the commitment they need to come to terms with when they are trying to heal their body, MASSIVE ACTION. Every person is counseled according to their history, symptoms and medications. The advice I give to people is that this condition did not happen overnight. This took years to manifest and it’s going to take time and patience to heal their body.
Advice during a post flare would be to, eliminate insoluble fiber, take measures to heal their gut, usually bone broth helps immensely. I help get their stress under control, help them let go of emotion baggage, teach them how to incorporate movement into their lives no matter where they are at and to help them love themselves. This is key and it’s hard. There are so many emotions that someone suffering from IBD goes through every single day in sickness and in health. Teach them not to be a victim and help them feel empowered. Advice for newly diagnosed is that they need to be educated from the spectrum of diet to medication.
Medication is sometimes necessary to get the initial inflammation under control, but it doesn’t have to be “for the rest of your life”.
I also tell them that this is a wake up call and a gift! I try to be as positive as I can. I’ve been through horrific times and now I function like anyone else, but better! People struggling with their illness I try to tell them that there is another way to treat your illness. I explain that most foods that everyone loves are super inflammatory to the gut and adds fuel to the fire! I also explain to them that they have the power to get well and turn their disease around. I’m American Italian and I worked in a pizzeria for 12 years, I lived on pizza, pasta and sugar!
I did eat vegetables and fruits, but they were definitely not my staple back then! I was the GLUTEN QUEEN! HA! Thinking back, I’m basically a positive person. If I wasn’t feeling well, or throwing up between patients (I’ve been an ultrasound tech as long as I’ve had this disease), I knew deep down that there were better days to come! I am sarcastic in nature and I would usually joke around to deflect being the center of attention. Me being in pain was killing my family and friends. I started being symptomatic when I was around 22, but I did not have run of the mill symptoms (such as diarrhea).
I wasn’t diagnosed until I was 29 and in a full time ultrasound program while working full time at a pizzeria. I was having an upper GI (like my 3 rd ) and then had me wait to do a small bowel follow through because my blood work showed that my LFT’s were elevated and my hemoglobin was 6! They saw “the dark area” on the X-Ray and said that it could be Crohn’s disease or a parasite. I didn’t really know what Crohn’s disease exactly was, but I was routing for the parasite! I was soon admitted to the hospital that very day and then they told me that I needed surgery. I was like, what? I don’t even know what this is and now you want to cut me open? One of the hard days.
My website is www.danacamera.com. I am a certified holistic health coach since 2009. I am now currently enrolled at The School of Applied Functional Medicine and I will soon be trained to get to the root cause of “dis-ease”.
I’ve been helping people for years. As soon as I changed my diet and I was so excited with the results, I wanted to shout it from the roof top! My typical diet is gluten free, low processed foods, limited dairy, vegetarian, nuts, seeds, coconut products, avocado, root veggies, actually all veggies, some fruit, vegan protein (SunWarrior), eggs, grains and beans.
Breakfast: Chia porridge: 1 can coconut milk (will melt on low flame if solid) plus water to make an even 2 cups of liquid, ½ C Chia seeds, 1-2 TB raw honey OR 4 dates chopped, splash of vanilla, dash sea salt and I like cacao powder (super food) about ¼ c. Mix all together, cover, let sit overnight until it thickens. This makes about 3 servings for me and I garnish with walnuts and sometime fruit. Delicious!
Breakfast: Eggs (organic/free range), I can eat them fried, scrambled, in an omelet, hard boiled or over easy. If I make an omelet, I sautee veggies (usually what I have in the house), always onions, sometimes a little grated cheese (pecorino romano). I will have a slice of gluten free bread or Ezekiel bread with grass fed butter. Breakfast: Quinoa/steel cut gluten free oats cooked in coconut milk/water, I add honey, sea salt, cinnamon, vanilla, nuts, coconut shreds.
Lunch: Large raw salad, avocado, eggs, nuts, seeds. Dressing is avocado oil and seasoned rice vinegar (my one “bad” thing). This is pretty much everyday. Dinner: veggie burger: quinoa/black bean/onion/shredded zucchini/flax seed/1TB olive oil/sea salt/garlic powder/black pepper: pulse in food processor/make patties and you can cook in the oven @350 or on stove top, about 5-6 minutes per side, veggie, salad, either brown rice or squash or yucca or sweet potato.
Dinner: Brown rice and broccoli frittata, salad, veggie Dinner: Veggie burrito bowl, with veggies, brown rice or quinoa, beans, salsa, topped with onion. Sometimes I will have tortilla chips and dip! I use almond flour and coconut flour to bake with. I can indulge in almost any food, I do not have reactions to anything (I’m talking pain), UNLESS I overdo them and if I overdo food (usually gluten) I experience diarrhea, gas and joint pain for a day or 2 until I get it back under control.
For example: I can have pizza, but my diet has to be pristine that whole day. I know my limitations and I don’t like to feel gassy or experience joint pain. These are my only symptoms now (thank God). I want to make a note: When I was sick or I had a blockage, I COULD NOT eat this much fiber. I stuck to soups, lots of broth, eggs, everything was cooked and easily digestible. All the Dr’s say to stick to a low residue diet, but they include white bread and pasta, this in and of itself is INFLAMMATORY to your body.
I tell all people suffering from any autoimmune disease to CUT OUT GLUTEN and SUGAR immediately. Along with PROCESSED food and DAIRY. Organic is important, NON GMO is important, eating a whole foods diet is important.
Stick to the dirty dozen and the clean 15, great for budgets! I tell people to eat food the way nature intended. Whole grains in moderation, vegetables, fruit, starchy vegetables, wild caught fish (stay away from high mercury containing fish-tuna, swordfish, shark, etc), organic free range poultry, grass fed grass finished beef (no more than 1 time a week).
Again I’m a vegetarian, this works for me, I know it doesn’t work for everyone. I walk, do yoga, meditate on a daily basis. I practice mindfullness and I treat people the way I want to be treated. I stand up for myself without crass and everyday I learn something new. I’m working on my “defensiveness” and trying to be a better listener. Also a note, I had acute myeloid leukemia in 2012 and I had a stem cell transplant. I bounced back from this journey by using these same principles. This is when I added letting go of the emotional baggage, learning to love yourself and letting go of things you cannot control. Brooke, I know this is a lot ! Take what you need to complete this. I apologize, since chemo, my brain is still scattered, but I think I covered all of the things you were looking for.
Of course, I probably left out some information but I think you get the jist of my journey. I haven’t been on medication since 2004 for Crohn’s disease and I’m not on any medication post Leukemia.
I am truly blessed and I practice gratitude everyday. :)