Here are the details of my healing process.
If you are still healing or just being Gluten free isn't working, maybe by experience will help.
Initially, I was so relived to have a diagnosis. Finally an answer! I'm going to get to be back to “normal” in a few weeks! The doctor had explained the diet to me, and I researched it online, so we thought we were set; off to grocery store and all will be fixed. I was so wrong!
Shortly after, I went to a nutritionist, who the gastroenterologist recommended. I was basically told the definition of celiac, to be very careful, read all the food labels, and give it time. I walked out of the office confused, I thought this was going to help and that I would get an answer as to why I wasn't feeling better yet. I also remember thinking, “Wait, what? I just paid a specialist co pay for that?” I have a hard time with doctors.
I was careful as to what I was putting in my body, reading every label, and researching every brand online. I was somehow still in pain, still inflamed, and having way to many bowel moments in a day. My body does what I call “puffer fish syndrome” (not real); I get inflamed and have water retention. The only change that going on a gluten free diet did for me was reduce “puffer fish syndrome”. I lost about 8 lbs in the first few weeks, just fluid loss. Weight loss was not the goal, health is. I went back to my gastroenterologist, and he didn't know why I wasn't healing. He did say medication, basically steroids, is an option. I'm not a fan of drugs, and it just didn't make sense. Why would I want to take something that could add more symptoms and problems down the road? I'm glad I never tried them.
After discovering that doctors weren't going to help, I felt like I knew more about celiac than they did. They may know the definition and what's in the text book, but I have years of experience and know the pain so well. No one knows my body like I do.
My mom discovered the Special Carbohydrate Diet and the book Breaking the Cycle online. This diet is not for weight loss; it's for healing your guts. I had undiagnosed celiac for years, and therefore also had irritable bowel, leaky gut, and severe food sensitivities. The Special Carbohydrate Diet (SCD) starts you with basic foods that are not aggravating to your guts such as broth and chicken. It then has you build up and add in foods from there. Probiotics are a key factor, but I soon decided the home made yogurt they use wasn't for me, and dairy wasn't either; so I used probiotics via capsules instead. I also took liquid vitamins because the fillers in the pills are starch and not always gluten free. SDC is a long process, and I chose to add in some foods faster towards the end of the process because I needed more vitamins and minerals in my diet. Malnutrition is not something you want to mess with. I tried to add in grains or GF flours, but I decided grain free was best for me. I went sugar free because sugar creates heat and heat creates inflammation, which are not friends with guts. I found “Food Maps” charts helpful. “Food Maps” just helped me see what food are in the same category, and if one food in that categoric bugged me, maybe others like it do too. It made the process quicker with less guessing of what was upsetting my guts.
I did try acupuncture for a bit. The muscle test did confirm food allergies that where earlier found by a skin test done by a allergist. The muscle test did reveal that pesticides were an issue as well. Going organic made a difference. The pain in my bones and joints lessened as well as some stomach pain.
A game changer for me was discovering I had a hypothyroid. Thyroid issues frequently go along with celiac; healing with life style and diet only was not working, so I chose to take a synthetic hormone. Which helped immensely. I don't like taking drugs but at that point, I needed to get functioning again. It was a hard decision, but I admit, I was a little desperate.
Before I found out about my thyroid I was eating a small variety of foods. After the medication had started to positively affect me, I began the long process of adding more complex foods back in, starting with fruits and vegetables. Some are harder to digest than others. I couldn't handle night shades like bell peppers and eggplant for a long time. Onions too. Over time the way I ate was paleo, but it wasn't enough carbohydrates for me so I added in potatoes. Protein is great, but paleo is so meat and fat based, it was too much for my system. I made some changes and ate meat once a day and only 4oz. I started eating more fruit and vegetables to get more calories. Since fruits and vegies were still not enough calories, I added in potatoes which confirmed that I needed more carbohydrates. If carbohydrates are the bulk of my diet I do much better. Fatigue was a huge issue for me. Bananas and dried fruit are great snacks that provide extra energy as well.
Because I had struggled so long to get enough calories with my limited diet, I was often only getting 1500 calories a day so when I started focusing on carbs instead of meat, things started to change. The low calories and the hypothyroidism slowed down my metabolism. This contributed to fatigue. I need around 2500 calories to function, since I'm tall, active, and food is good for you, starvation is not. I needed to reboot.
For a year and a half I ate “Raw Till 4”, which consisted of: smoothies every morning, veggies at lunch, snacking on fruit though out the day, and then potatoes and veggies at night. I didn't follow the proportions of “Raw Till 4” strictly. If I needed more fat (like avocados) one day, I would eat it. I just did what made me feel good. I have not kept it up because of location, resources, and being married. California has way more resources and agriculture then New Mexico does, which is really sad. Also the closest grocery store is in a town 65 miles away. I do eat some meat not every day. I still have a smoothie every morning, and if I'm going to eat meat its not till dinner. I do take Kirkland vitamins (I used to take liquid vitamins, but they're so expensive). I am grain free (yes I eat quinoa which isn't a grain even though that's how its marketed). I don't eat dairy. I don't eat refined sugar. I eat organic because pesticides bug me. There are Certain things I don't eat for personal reasons such as Seafood and Pork and GMO foods. I eat paleo inspired dishes for dinner frequently. I think Fruit and Veggies are always good for you. I was inspired by Freelee the Banana Girl and Rice and Raw on You Tube but I don't eat exactly like them. I have celiac, always will, but I don't live with repercussions of it like I used to have to. I am healthy.
Another reason I am as healthy as I am today, is I have had those who care about be continually praying for healing for me. I couldn't go on this journey alone.
please do your own research, don't just take my word for it. And please don't ignore it.
Raw till 4