Last week was basically the "week from Hell". I hate to start out a post on such a sour note, but I have to tell you the truth. I promise, it gets a little better.
I visited my neurologist for a follow-up appointment on Monday. I saw the P.A. (I never get to actually see the doctor), prepared with information on Celiac Disease and Small Fiber Neuropathy and the connection between the two. I handed the P.A. the folder, he scanned it and handed it back. When I told him he could keep it, he said, "Well, I can look that stuff up on the computer later". Then he politely told me to keep taking my meds and come back in three months.
On Wednesday, I met with the P.A. at my gastroenterologist's office (the person who diagnosed my celiac disease three years ago) for my annual check-up. I filled her in on my issues and before I could even finish, she stopped me cold with "Nope, the problems you are having are in no way related to your celiac disease as long as you are following your gluten-free diet". She told me to "stay off of the internet and stay on my gf diet". At that point, I just gave up trying. I felt totally defeated.
Obviously, it's all in my head.
On Friday, I had an appointment with an Integrative Nutritionist. I figured that I had pretty much exhausted all other avenues, so I decided to take a more holistic approach. Her office is located inside the Spa at the Roosevelt Baths in Saratoga Springs, NY. As I walked into the lobby, I couldn't help but relax. Calm music was playing, an indoor waterfall was trickling and a fireplace was welcoming. People were sitting around in padded lounge chairs in white robes and flip flops, waiting for their massages and mineral baths. I poured myself a cup of tea and waited. I couldn't help but wonder why doctor's offices weren't like this. Why do they have to be so cold and sterile?
Once in her office, we talked about the paperwork I had filled out and my symptoms and struggles. We talked about the brain-gut connection and how our gut controls a great deal of our bodies. I had been already researching about this before our meeting, so I was totally on board with what she was saying. She gave me instructions for an anti-inflammatory, anti-candida, elimination diet (which is also gluten-free). The idea behind the diet is to stop eating foods that contribute to inflammation in the intestine and replace it with foods that help the gut to heal. I won't lie, it's pretty strict. I've been on it for five days and I can tell you that it's not easy. I've had to give up red meat, dairy, soy, corn, white potatoes, tomatoes, sugar, chocolate, soda and pretty much everything I love. My diet has been consisting of chicken, turkey and fish, brown rice and quinoa, allowed vegetables and fruits, sweet potatoes, black beans and chic peas, nuts and nut butters (except peanuts), almond milk, flavored seltzer, 100% juices (no citrus), decaf coffee, green tea. I can use molasses, pure maple syrup, agave and stevia for sweeteners. There's also an added twist called "the egg challenge". I have to go without eggs for two weeks. At the end of the two weeks, I eat five yolks in one day to see if I have symptoms. If I do, then I can write-off egg yolks permanently. In a couple of days, I do the same with egg whites. From what I gather, this will be the way it goes as I add restricted foods back into my diet.
All of my go-to snacks are gone. No popcorn, no M&M's, no ice cream, no soda. I admit, I'm going through some pretty severe sugar withdrawal. I had to sprint through Target the other day in order to avoid the HUNDREDS of aisles of Easter candy. It's been especially tough the last couple of days. My daughter came down with the stomach flu and my stress level is making me crave sugar all the more.
The other component to the plan is dietary supplements. I have four big bottles on my kitchen counter which contain probiotics, digestive enzymes and omega 3's. I have to work up to the recommended dosages slowly to give my system a chance to adjust. The probiotics cause the most distress. I've had some pretty bad cramps and "bathroom issues" after taking them. I was told that this may happen. Apparently, as the bad bacteria are taken over by the good bacteria, a little intestinal war can break out. Completely normal, but more than a little uncomfortable. Right now, I'm taking it slow with the probiotics, only taking the minimum amount and only using them every-other day or so.
I haven't felt much change in my pain level yet. I know it's still early and I get really impatient. I have lost a couple of pounds, I'm guessing because sometimes I don't really know what to eat. The lack of sugar probably is helping as well. I've had moments where I just stand in the middle of the kitchen and stare at the fridge. I'm finding that I have to cook two meals at dinner, one for my family and one for me. I haven't tried to eat in a restaurant yet, that will be interesting. I thought going gluten-free was challenging!
How long I will need to stay on this plan is uncertain. I guess it depends on my symptoms. In the meantime, I'm still taking my nerve meds and trying to "stay off of the internet". (Not!)
I will keep you posted!