Monday, March 12, 2012

Eight Weeks Later - The Nutritional Odyssey Continues....

"Let food be thy medicine, thy medicine shall be thy food." ~ Hippocrates

Eight weeks later I am still following a nutrition plan that I began January 18, 2012. A lot has happened to me in those eight weeks, both in terms of the eating plan and in regards to my Sjogren's syndrome. The Sjogren's syndrome, an autoimmune disorder, has been the catalyst for drastically changing how I eat in the first place.

I have written two previous blog entries on the topic which can be found by following these two links so hopefully I am not repeating myself too much:

Nutritional Healing
Nutritional Healing Update

I started eating this way after hours and days of research in a desperate attempt to try and contribute to controlling my symptoms as my Sjogren's symptoms were worsening relatively rapidly. I have a history of lousy nutrition and being overweight and since my first autoimmune symptoms in December 2007, not one physician has suggested that I do any dietary changes in an attempt to help alleviate my symptoms. Of course nutrition research is not funded because it is not profitable so there is a scant amount of true research information out in the medical community about the positive effects of diet on autoimmune disorders. However I read enough patient stories and experiences to know it was something I had to try and if it didn't help my Sjogren's, it sure as heck was going to help the rest of me.

People have been asking me if I have noticed an improvement in my Sjogren's symptoms with this new way of eating which is gluten and dairy-fee, semi vegetarian, reduced sugar, reduced processed foods, no fast food, whole foods, no soda or caffeine. The answer is:

I cannot say with any certainty.

The same time I started my eating plan, I started on large doses of steroids for neurological issues, was diagnosed with two blood clots in my lungs, and received a diagnosis of another autoimmune disorder called Guillain-Barre. My body has been a huge deposit for steroids, blood thinners, and multiple other medications I am not accustomed to taking. I think that as I wean off the steroids and recover fully from the Guillain-Barre (which I absolutely will), the answer to this question will be more clear.

What I can say is that until my last steroid infusion, I was tolerating some of the side effects better than usual, my periods have been more tolerable, cravings for high fat and sugar laden foods have diminished dramatically. I feel much more in control, with a few exceptions, of my eating. Until my last infusion last week, which was the fourth in six weeks, and in addition to oral steroids everyday at home, I had lost weight. This last infusion killed me in terms of fluid retention, gaining some weight (which has already started to come off), drastic mood swings, heart issues, etc. In regards to non autoimmune issues, my lipid profile (which includes cholesterol, LDL, HDL) is the best it has ever been; very close to perfectly normal and my blood sugar is perfect. Very important since I come from a family history of heart disease and diabetes.

So time will tell. After doing some research, I also learned that it can take several months to notice a positive effect and I am in this for the long haul.

I can honestly say that to the best of my knowledge, I have been on plan with the exception of one time and that demonstrated some proof that I am on to something. After a horrendous appointment with my neurologist last month, I was driving home by myself and was very upset. So how did I deal with that? Burger King drive through of course. The whole works: double cheeseburger, fries, and a Coke. I had not had any Sjogren's related joint pain in quite a while because of the steroids and sure enough, the next day I woke up so stiff and arthritic that I actually questioned if they gave me the right medicine, steroids, at my last infusion a few days prior. Of course they did. It was the food. I am certain of it.

I wish I could say it has been an easy journey but it has been challenging at times. The learning process, shopping more often, cooking all the time and such really can take a toll on me when I am not physically feeling well; especially with all the neurological issues I have had. Not to mention the physical therapy, doctor's appointments, etc. However this has just meant that I have to ask for help when I am REALLY sick and that I have to plan and prioritize when I am able to do more for myself. For example, yesterday I spent time going through cookbooks, planning meals, and making a shopping list so that I can decrease my trips to the store. I only have so much energy to use in my day and it is limited lately but the food part HAS to be a priority.

My other challenge has been eating out and eating at other people's homes. Because in reality, the rest of the world is not eating exactly like me although for the life of me, I cannot imagine why. Eating out has gotten easier and I have found a few restaurants that are very accommodating to my needs. They include places Red Robin, Pizzeria Unos, The Roadhouse, which is a local joint in my town, and a slew of independently owned restaurants in some nearby towns. I am finding that gluten-free is not as big a deal as finding a place that provides gluten AND dairy free options. I am hoping that as awareness of food allergies catches on more, there will be more options available so I can visit some of my old favorite haunts such as Kristina's and the Hanger (both local places as well) once in a while.

My experience with eating at other people's homes and social functions has been limited because of my health lately but I was at a family function this past weekend that was challenging, VERY challenging. But I did it. I knew there was going to be pizza, birthday cake, etc. So I brought my own supper and a low sugar, gluten/dairy-free dessert and thought how awesome it was that I was so prepared.

Yeah, not so much.

Pizza is my favorite food in the world and the aroma of the pepperoni soaked pie almost did me in. Plus I was all messed up from the steroids. I wanted to dive into that box head first or at the very least, take it and run like hell. So one might ask, why deprive yourself? What is the big deal about a slice or two of pizza? The big deal is that gluten and dairy can do damage to your intestines that you may not even know about and set you back god knows how long. It is not like a traditional diet where you give in to your craving and move on, compensating for it later. At least not that I know of and I wasn't willing to risk all that hard work. I left that evening pizza free. And you can bet I will be making an awesome gluten and dairy-free pizza for Chuck and I sometime this week.

I have also found it very helpful to be prepared for travel such as for doctor appointments and long days. I bought a lunch box, a bunch of food containers, ice packs, etc. When you have what you can eat right at your disposal, it makes a huge difference when you come across a hospital coffee shop that literally only has a bag of peanuts and a bruised apple to choose from while you wait an extra hour to see your doctor!

So these have been some of the challenges in my new found way of eating. There have been a lot of blessings though as well. To start with, I have found a love of cooking that I never knew I had. And to be honest, I am kind of good at it! I am not the most creative cook so I rely a lot on some really great cookbooks I have found. However slowly but surely, I am learning to make some things without a recipe and discovering a culinary world I never knew existed. It makes me feel good to create something with my own hands that is healthy and nutritious for my body. Yes, there are occasions that I resort to a gluten/dairy-free processed meal that some factory made for me but I feel no guilt about that because it is so infrequent.

I also enjoy the challenge of creating dishes and meals that are not only on plan, but also taste fantastic. I appreciate food now more than ever because I actually taste the FOOD itself; imagine that! I also find that I am starting to look forward to certain healthy foods such as kale, black eyed peas, and quinoa, rather that Chef Boyardee ravioli or fast food.

I never want to be one of those people who runs around saying how their lifestyle is the only way to go; whether it be in regards to food, exercise, or anything else. But I will continue to let people know how it is going and share information. Not just because I happen to have this autoimmune disorder, but because the fact is, the typical American diet is lethal and the incidence of obesity and weight related health issues in this country is off the charts. We are so obsessed with losing weight that we don't stop to think about being healthy. That should be the goal.

Sometimes all it takes is a small change. Eat a vegetable every day. Pass on the fried appetizer. I started this way of eating plan eight weeks ago but reality is, the process started for me a year ago when I drank my first green smoothie in an effort to get more greens into my body.

A whole year ago.

Who knows where I, or you, can be a year from now....

Photos: Courtesy of Google Images


  1. I'm looking forward to hearing your results as time passes and the steroids are gone. As you know, I have noticed quite a difference in only three weeks of being gluten/dairy free. I can't imagine ever going back. Thank you :)

  2. I completely agree with you about the importance of small changes and of the taste of good, fresh food. It's hard to make good choices every day, but it's easier if we focus on the benefits and if we find ways to enjoy it.

  3. It does make a huge difference, and once you get used to it, you don't usually miss it either. At a work function on Saturday, I mistook a pitcher of Sprite for water (I gave us all soda over a year ago), and I had to dump it out. I didn't even like it. I've come across several cooking podcasts recently that might help you out. Many are video podcasts that demo the recipes & techniques. If I find any specific to your restrictions, I'll send you the link. You've been doing so well - I'm proud of you *_* Char

  4. Thank you everyone for the feedback and comments. I must admit, I am pretty excited to see what happens as I start to wean off the steroids, which with the grace of God, will start to happen when I see my rheumatologist this week.