"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: gluten-free (Page 1 of 3)

Nutrition and Sjögren’s

I posted on the Facebook page for this blog recently about a visit I made to a nutritionist. I had won, at an auction for the SSF (or rather, my husband won for me), a one hour consult with Tara Mardigan, MS, MPH, RD. She is a nutritionist in Boston, MA and also serves on the Sjögren’s Syndrome Foundation’s Medical and Scientific Advisory Board. Some of my readers asked if I would post the information about that visit and this is what today’s entry is all about.

Anybody who follows my blog know that I feel very strongly that diet and nutrition play a huge part in dealing with autoimmune illnesses and is a very underutilized treatment option for all patients. I was running into a few issues with my nutrition lately, mostly because I was freaking out over what I was “supposed” to do. Since my diagnosis, I have been vegetarian, gluten and dairy-free, Paleo, and on the Autoimmune Protocol. I have had significant relief at times with the gluten and dairy-free, as well as the Paleo. However Paleo was causing me some other problems physically, so I had to loosen up on that. The Autoimmune Protocol didn’t seem to do me much good except make it so that I became a recluse in my house because I couldn’t eat anywhere else.

I have some emotional issues around food as well, many of which have improved over the past few years, but still come back to haunt me when my stress level is high. This most notably happens when I am stressed out over medical issues. I definitely have an addiction issue around sugar, processed foods, fast foods, etc. So going in all these different directions with my diet was really just making these issues worse over the past six months. I wanted to eat to fuel and heal my body, but it felt like the more restrictions I imposed on myself, the worse my eating habits would get after a while.

I was curious to see what an actual nutritionist had to say about it all, so off to Boston I went. Honestly, I am in Boston so much, I should just move there! The visit went well and the following is the recommendations she made to me in regards to my diet. Please remember, these suggestions are for me; most likely, you will have different needs so these suggestions should not be considered appropriate for everyone. That being said, I think a lot of the suggestions are just a good way to eat for all of us:

* Aim for a bigger, more balanced breakfast.

* Aim for balance at mealtime using the Five Fingers Chart. This chart states that at every meal, you should strive to eat one serving from each of the following groups: fruit/vegetable; carbohydrate, protein, healthy fat, and fluid. You can eat more than one serving of vegetables/fruits (except for starchy veggies and dried fruit). The more color, the better. Choose smaller portions for tropical fruits.

* Aim for a Powerful Plate at dinnertime. Choose the Healthy Eating Plate on days you exercise (50% vegetables/fruits, 25% carbohydrates, 25% protein) and the Less Active Plate on days you don’t exercise or have a very light day (75% vegetables/fruits, 25% protein). Adjust the amount of carbohydrates you take in based on your activity level. Less active, less carbs.

* Count corn, winter squash, parsnips, peas, and potatoes as carbohydrates, not as vegetables.

* Fruit with skin: 1 medium-large piece or 1 cup (berries, apples, pears, grapes, plums, nectarines,oranges, grapefruit.

* Fruit without skin: 1 small banana or 1/2 up (any tropical fruit)

* Consider a high powered blender such as Vitamix or Blendtec to support your efforts and increasing fruits and vegetables (significantly) in smoothies will be a great anti-inflammatory nutrition strategy.

*Try adding an intentional healthy snack between breakfast and lunch and/or lunch and dinner if you have a gap of more than 3-4 hours between. Fruit with 0.25 cup of nuts or unsalted pumpkin seeds or sunflower seeds is a great choice here. You are looking for fiber, a small amount of healthy fat and/or protein.

*Consider trying some non-gluten free options from fresh-made sources. Refer to FODMAP grocery list for some digestive-friendly choices (not necessarily gluten-free).

* Try fresh cut vegetables, such as cucumbers or carrots with red wine or white vinegar as a crunchy nighttime snack that’s sodium-free and low in calories.

* Consider the “One Bowl” method for nighttime or mindless snacking. You can eat whatever you want (healthy or unhealthy) but you’ll first stop and put the food into a bowl. Don’t judge the food or the amount, but take a minute to pause. This is a mindful eating strategy and may help you gradually make intentional choices that help nourish. This is a difficult strategy but if you’re able to stick with it, it will help you lose weight because you’ll eat less and choose more healthful options. The book that inspired this idea is One Bowl by Don Gerrard.

* Be verbal when eating out. Ask for extra vegetables, prepared without butter or sauces. Ask for a side of pasta or skip it. Skip the bread. Avoid shiny and battered foods. Get open-faced sandwiches. Have the burrito bowl with a small spoonful of rice. Skip or split appetizers and desserts. Choose fish instead of meat. Ask for lemon wedges to add flavor.

* When dressing your salad, use fresh lemons and a small amount of olive oil. If you want creamy dressing, ask for it on the side and use a small amount.

* Continue with consistent (but gradual) hydration throughout the day with water.

* Great job with exercise. Continue with walking and yoga and hopefully you will be able to gradually get back into running again.

Whew! I know that’s a lot of information, but I thought it was important enough to share with all of you. I had the appointment right before Christmas. I did read the One Bowl book she mentioned and started to implement a few of the suggestions, but Christmas eating really threw me off. I did try some non-GMO bread with gluten in it. I found that in small amounts (and I mean SMALL), I could tolerate it, but larger amounts seem to be a problem. I found this out when I dropped my gluten and dairy restriction for several weeks around Christmas. I also developed a lot of digestive issues when I ate a lot of gluten and dairy, issues that I have never had before. I am currently on the last day of a 10 day detox/cleanse which was my own doing; it was NOT a recommendation of the nutritionist. I will be blogging about that tomorrow or Monday. My plan for the few days following the detox is to ease back into eating normally again and then go full steam ahead with the nutritionist’s suggestions.

One of the big things that this visit made me realize and understand is that despite all the different “diets” and eating plans out there that claim to cure or help your autoimmune illness, in the end, it may just come down to great nutrition on a consistent basis for many people. I am not saying that the Autoimmune Protocol or eliminating gluten may not help your symptoms; I know many people who find relief eliminating different food groups, such as with me and gluten. However, I think that for me, the answer may be more in eating whole foods in balance with each other, minus the gluten and dairy I need to limit, as well as limiting processed foods, soy, alcohol, refined sugar, etc. So basically, just eating healthy!

Please feel free to comment below on what nutrition strategies you have implemented to help your autoimmune illness, or even just your general health.

Disney Honeymoon Part One: Animal Kingdom Lodge

Exactly one week since we have returned from our honeymoon at Disney World and I am finally getting some time to start my blog series about the trip. I am not sure yet how many parts there will be, but I am guessing at least six or seven separate entries. Some of the writing will be informative and some of it will describing my own personal experiences; especially in relation to how I managed my illness while traveling.

Today I will be focusing on the hotel we stayed at: Animal Kingdom Lodge. My husband took his kids to Disney years and years ago and stayed at one of the value resorts. I went with college friends about twenty years ago and stayed at a Red Roof Inn somewhere in Orlando. Because this was our honeymoon, we wanted to stay somewhere special and it was very easy for us to decide that we both wanted to stay at Animal Kingdom Lodge (AKL).

During a very scary emergency room visit in February 2012, I asked my then fiancé to talk about something good to distract me from the fact that a doctor had just told me I possibly had a blood clot in my lung (pulmonary embolism) and would need to be admitted. My fiancé began to talk about our honeymoon and how we would stay at AKL with a savanna view so that we could wake up to the animals every day. I argued that it was too expensive but he insisted that it was a special time and not to worry about it. I still joke about how blood clots in my lungs (because yes, I did have them) helped me wrangle a savanna view! Although anyone who knows my husband knows better than that, because he is incredibly generous every day and not just on special occasions.

From the moment we checked in on September 24th, I was blown away by this place. I had read a ton of reviews online and although a lot of them were positive, a lot of people complained about a few particular things, such as how far AKL is from most of the Disney parks. Let me tell you, when I walked into that majestic lobby with all of its beautifully crafted wood, the last thing I cared about was time spent on the bus! Even the front desk looked majestic. And the smell, oh don’t get me started on the smell. Every time we walked through those doors, the aroma of wood and I don’t know what else would assault my senses.

Animal Kingdom Lodge lobby
 

We arrived around 12:30 and our room was not ready because they were going to put us into a room with two queen beds and we decided to wait the extra few hours so that we may get a room with a king bed instead. I guess this is the point where I should tell the whole story about the issues we had the first twenty-four hours with our room.

We got into our room about 3:30pm, unpacked, and immediately left for our 5:15 dinner reservation at The Polynesian. I had medications and food that needed to be refrigerated and put them in there as soon as we got into the room. We left and were gone for about five hours only to come home, grab a drink, and realize it was warm. The fridge wasn’t working. The other major issue was that from the second I walked into the room, I noticed how much it smelled like mold/mildew. It was overwhelming. We figured maybe the room just needed to be aired out and we had left the balcony door open to accomplish this. When we returned from dinner, I called the front desk about the fridge. I was a bit upset although I think I handled it pretty well. I was exhausted from traveling all day and I didn’t know if my injectable medicine or liquid medicine had been affected at all. The food I decided was not worth the risk and we never ate it. They came up to our room at 10pm with a brand new refrigerator and that was that.

The next morning I woke up and my breathing was a little tight, which it has not been in quite some times. I have severe mold allergies and asthma and I was concerned that it was the room. My guess is that the smell had something to do with the fridge not working as that is where the smell was the worse. Plus, it was just disgusting. For $400/night, our room should not smell. Actually, most of that hallway smelled. We spoke with the front desk and they said they would assign us a new room. That proceeded to take all day. We had agreed to a handicap accessible room so as not to lose the king sized bed. Meanwhile we had to repack all our stuff and leave it with bell services while we were at the park. There was a lot of miscommunication throughout the day and finally at 4:30pm, our new room was ready and we unpacked all over again just in time to make our next dinner reservation.

Because of the inconvenience, the hotel upgraded our room. I was a bit confused at first because I though the only room better than a savanna view room was a suite and this certainly wasn’t that. At AKL there is a $40/night difference in room price between the Uzima view, which was our first room and the Arusha view, which was our new room. One of the other issues was that there were minimal animals on the Uzima savanna the first 24 hours we were there so this mold and room change issue ended up working out for us because we LOVED the new room with the Arusha view. We frequently had zebras, giraffes, elands, springbok, pelicans and all kind of other animals right outside our balcony. Plus the new room was closer to the lobby, without being too close, which was very helpful for me in getting to the bus stop.

Once we were in our new room, we never had another issue with the hotel. We absolutely loved the place. They had plenty of hotel related events and experiences available so that you could learn more about the African culture. Chuck and I both enjoyed chatting with the staff, most of whom were from various parts of Africa. It appeared that they all truly enjoyed their jobs and really went out of their way to make our experience enjoyable.

View from our balcony
 

There are two parts to AKL: Jambo House and Khidani Village. They each have their own bus stop. We stayed at Jambo House and Khidani Village is a Disney Vacation Club location so you have to be a member to stay there I believe. The pool and surrounding pool area is probably the best I have ever enjoyed. There is a zero entry pool which is wonderful for people with disabilities as well as two secluded hot tubs. There is a pool bar, which I found delightful, because they had this awesome frozen drink called a Moscato Colada (SKYY Infusions Moscato Grape, Vodka, Blue Curacao, pina colada mix, and passion fruit/mango foam) and it was nice to have a place to hang out and just enjoy being on vacation. It was a good place for me because AKL property is loaded with trees which meant more shade to keep me from getting sick. I would have liked to have spent more time there but well, there are only so many hours in a day. And only so many days in a vacation!

The gift shop at AKL was probably my favorite as it had so many different types of things. I also liked the fact that in an Disney park, you can have your order sent to your hotel gift shop so that you are not lugging packages around all day. It’s the small things…

I found the food at AKL amazing. On the second night, when we finally were settled in our new room, we ate at Jiko. Jiko is their fancier restaurant and it was really quite a treat. You know you’re in a top quality restaurant when they put the linen napkin on your lap for you. I tried a South African Shiraz wine called Jam Jar and fell in love with it, maybe a little too much so! The chef came out to talk to me to discuss my food restrictions and she made me my own meal (meaning not on the menu) of sirloin steak with a rice/quinoa medley. The appetizer was the best though. It was an African plate I wanted to try with pita bread and different African dips/toppings. I told the chef this and she brought the pita for my husband and brought me something called pappadam, which is made from lentils and is like a very thin tortilla with spices, also gluten/dairy-free. It was very peppery which was right up my alley. The dips included bhuna masala, sagh dahl, Moroccan chermoula, and kalamata hummus. The only one I didn’t like was the kalamata hummus because I don’t like olives. I found the tastes to be exquisite, which surprised me since I used to be such a picky eater.

There is a quick service cafeteria at AKL but we never ate there. However we did eat at another AKL restaurant called Boma. Oh, how I loved Boma! Reason being was that it was a buffet so I could try different dishes I was unfamiliar with and not be stuck hungry because I didn’t like my meal. I also liked it because there were some familiar foods created with African flavor. For example, there was a cucumber salad that I just couldn’t get enough of as well as a cabbage slaw infused with spices. This is also where I tried bobotie for the first time. Bobotie is a South African dish made with minced meat, egg, and some yummy spices. Yes, I just said yummy! It’s all baked together and I think I could have eaten it every day I was there. I did not do gluten/dairy-free at Boma and I am pretty sure the bobotie had bread crumbs in it but I gave myself the leeway considering I was on a good dose of prednisone to protect me. I did that for a few other meals as well during our trip.

We did not have too much trouble with the driving distances from AKL to the parks, but we were there during one of Disney’s lowest seasons. I found that it depended on the time of day you attempted to travel. I also heard complaints about having a hard time getting on the bus if you were in a scooter, because the buses could only take so many scooters at once. Again, not a problem for me. We found the most difficult bus trips were to Downtown Disney and Typhoon Lagoon which can take as long as an hour, depending on traffic. The second furthest destination was Magic Kingdom and the ride took anywhere from fifteen-thirty minutes.

This was my philosophy for our trip (and it came in handy during the room fiasco): We were on our honeymoon and no way in hell was I going to let anything freak me out. When you stay on Disney property and use their bus transportation, you have to accept that at times, it may be slower going than if you have a car. And you’re on vacation, so relax. Overall, I liked the fact that AKL was more removed from all the busyness and craziness of Disney. It was a nice retreat to go to at the end of the day and enjoy being on vacation. We had seen a few other resorts during our stay and I have to say, we saw far less children at AKL compared to those other resorts. I love kids more than anything but well, I don’t have any and I was on my honeymoon. I was more than fine with leaving them behind at the Magic Kingdom!

Despite the inconvenience of our first twenty-four hours at AKL, I would definitely stay there again: the architecture, the smells, the music, and the food; all an experience I will never forget.

The Paleo Lifestyle

I have made a grave oversight. I was planning on writing an update today on how the Paleo lifestyle (I hate the word “diet”) has been going for me. I was scrolling through my blog posts to see what I wrote during my first Paleo blog entry and guess what? I never wrote one!

I meant to, I really did. But I started my thirty days of a strict autoimmune Paleo lifestyle the day before my fiancé’s mother died and it was not the priority. So now I am going to give you the recap of the past two months.

I am not going to spend much time describing the Paleo eating plan because a Google search can give you more information than you ever could possibly want. Basically it means that you eat whole, non-processed foods just like our ancestors did. Meats, vegetables, fruits, nuts, seeds, certain natural oils such as olive oil and coconut oil. No dairy, grains (even gluten-free grains are off limits), legumes, sugar (except naturally occurring sugars in fruits), soy, and refined seeds oils such as sunflower, vegetable, and corn oil.  Now, I had done a ton of research about this for a good five months before I even attempted changing my eating because I was going to go one step further. I was going to do the autoimmune protocol of the Paleo lifestyle which meant I was eliminating nuts, seeds, eggs, tomatoes and all tomato based products, eggplant, alcohol, potatoes, peppers, and certain spices that are pepper based such as chili powder.

Have I mentioned how much I LOVE potatoes? And gluten/dairy-free pizza??

So I embarked on my little experiment and after the thirty days, I decided to add seeds and nuts back into my diet. Adding one food back in at a time from the autoimmune protocol list is allowed so that you can see what you can tolerate. From time to time, I will also have a pepper based spice because I absolutely love buffalo chicken; which I make at home.

I will be honest, this lifestyle change has been one of the hardest things I have ever done in my life and trust me, I have had my challenges! I went through terrible sugar withdrawals the first two weeks or so and I found it very challenging to eat anywhere besides in my own house. However I was reading anecdote after anecdote of people with autoimmune disorders who were having improvement in their symptoms by eating a Paleo food plan. If there was even a chance that I could avoid going back on steroids or maybe even become more functional because of what I was eating, I had to stick with it. The Paleo lifestyle is also not just about what you eat. It’s also about moving your body, attempting to reduce toxins in your environment, and cutting back on stress.

Before I started the Paleo lifestyle, I had been eating gluten and dairy-free for a year. While I do think that helped a bit with my symptoms, it wasn’t enough. However when I look back to what I was eating, a lot of it was processed dairy and gluten-free foods. I stayed away from anything high in fat because I wanted to lose weight. I would eat a whole bowl of rice for lunch on many days. A food that probably spiked my blood glucose levels. If you are interested in the Paleo concept, I suggest that you do some research on what causes people to get fat and unhealthy. It is not the 85% ground beef you are eating, but rather the copious amounts of starches and sugars we eat in processed foods. There is a lot of scientific theory to it and rather than pretend to know exactly everything behind it, I am going to refer you to two books that I found extremely helpful: The Paleo Solution by Robb Wolf and Practical Paleo by Diane Sanfilippo, BS, NC. And again, there is always Google!

Bottom line is that I have learned fat is not the enemy. I will admit, I am still skeptical about the whole concept, but I am going for routine blood work next month which also screens my cholesterol, triglycerides, etc. so I will be interested in seeing the results of that blood work.

I guess one of the biggest questions I get is what do I eat? I eat a LOT of fruits and vegetables and I eat a lot of meats including beef, pork, chicken, turkey, fish, and on occasion, bacon. I now eat nuts and seeds including cashew butter, sunflower butter, etc. I cook and eat only coconut and olive oil as much as possible. Some Paleo enthusiasts say you should watch your fruit intake if you are trying to lose weight but I feel strongly that I need the nutrients of the variety of fruits that I eat and my primary goal right now is to be healthy. If I lose weight, great. If not, oh well.

I have had to completely retrain my way of thinking in terms of meals. No more cereal, pancakes, or yogurt for breakfast. Often I have leftovers from dinner the night before. The variety of food I have tried in the past two months has increased by at least fifty percent. I have discovered a love for sweet potatoes and a hatred for avocados. As often as possible, I eat grass fed and wild caught meat and fish in order to avoid hormones and other nasty things that grain fed animals eat. Eating out is even more of a challenge than when I was only restricting my gluten and dairy intake but is getting easier. We don’t eat out all that often but when we do, we chose a place that will not think twice about accommodating my needs. I have to say that I actually enjoy eating out more now because I am eating higher quality food as opposed to fried and processed food.

Overall, I would say that I am about 75% compliant with eating Paleo in the past month. After the first month, I realized that I had to make this a lifestyle which meant making it doable. Progress not perfection became my motto. Most Paleo proponents state that the goal should be to be eating Paleo 80% of the time. Although my basic diet is meats, vegetables, fruits, nuts, and seeds, I do indulge in a regular meal or food from time to time but I make sure it is something I will absolutely enjoy every bite of. For example, last week I was on a six day course of steroids for non-autoimmune reasons and I decided I had to have a buffalo chicken pizza from a local establishment. And a regular beer to go with it. Typically, when I eat something non-Paleo, I still make sure it is gluten and dairy-free but I needed that one exception on that particular day. I enjoyed it and the next morning, I was right back on track. Some people may say that I am not doing the autoimmune protocol properly. I say that I am living my life.

I did a little experiment several weeks ago where I went off my Paleo eating plan. My fiancé and I were going out of town to visit family and I wanted a weekend where I didn’t want to have to think about what I was going to eat. I even ate macaroni and cheese! After several days of that, I can honestly say that I was ready to go back to Paleo. My joints hurt more than usual, I felt like I had the flu, and I was craving salads.

The bottom line is: Overall, I am eating healthier than I ever have in my entire life. I cannot remember the last time I had a bowl of rice and I don’t even miss it anymore. I am feeding my body whole, nutritious foods. And I have lost weight. Not a lot, maybe a pound every two weeks but what has been more noticeable is the change in my body shape. Fat is turning to muscle. I don’t feel bloated anymore; unless I eat buffalo chicken pizza!

More importantly, let’s talk about my autoimmune symptoms. First I have to disclose than I am also taking a new alternative medication called low dose naltrexone (LDN) which I think has also benefited me so it is hard to ascertain if the improvement is due to my diet, allergy shots I have been receiving, the LDN, or most likely, all of the above. I am currently off steroids and my other autoimmune medication, Arava. That fact is simply amazing. I do have some joint pain but this is precipitated by exercise and/or not enough sleep. My dryness symptoms have improved somewhat which was recently noted by my eye doctor. My asthma is under control and the biggest change I have noticed is an improvement in my reflux and esophageal dysmotility symptoms. Fatigue, unfortunately, is still a major issue at times. I have not noticed any improvement in my Raynaud’s symptoms. I still struggle day to day much more than the average person without an autoimmune illness but at this point, I am struggling less than last year at this time.

Now could all of this be coincidence? Possibly. Maybe I am just in an upswing with my illness. But I am going with the theory that time will tell and meanwhile, I have absolutely nothing to lose.

Nutrition For Sjogren’s

“Don’t eat anything your great-grandmother wouldn’t recognize as food.”  ~ Michael Pollan
 
 

On December 1st, I had the opportunity to attend the Greater Boston Sjogren’s Syndrome Support Group. I have been on several different occasions and typically there is a different topic covered at each meeting and features a guest speaker. They have also had groups where there is an informal round table which provides an opportunity for the attendees and their support person to circulate amongst different break out sessions to discuss a variety of topics related to living with Sjogren’s syndrome.

Yesterday’s topic was regarding nutrition and Sjogren’s syndrome. It is something I was  interested in learning more about because I have done some work in this area myself. I strongly feel that it is an untapped area when it comes to the treatment of this illness. I have never had nutrition or diet discussed with me by any of my doctors in regards to Sjogren’s or any other health issue for that matter, Anything I have learned I have learned on my own. I was not sure how much new information I would learn yesterday but I figured that any tips I could get would be helpful and I was not disappointed. I am going to share some of the information provided during the lecture that I either found helpful or that I think you may find helpful.

The speaker was Tara Mardigan, MS, MPH, RD. She is a nutritionist at Lown Cardiovascular Center in Brookline, MA, Team Nutritionist for the Boston Red Sox, and most importantly, she serves on the Medical and Scientific Board of the Sjogren’s Syndrome Foundation.

Sjogren’s Nutrition
 

Pain: Avoid spicy, salty, acidic foods and extreme hot or cold foods. Limit carbonated beverages. Avoid crunchy, dry, chewy, and crisp foods.
 
 
GERD: Avoid large, fatty meals, and alcohol. Sit upright after meals. Eat mindfully.
 
 
Low body weight: Supplement with high protein shakes or soft bars to add calories. Plan ahead if traveling.
 
 
Constipation: Fluids, warm water, prune juice, or warm prunes, gradual introduction of fiber-rich foods, probiotic supplements, cacao nibs, psyllium husk powder, Benefiber, Smooth Move tea, bowel regimen per MD, restorative yoga poses, stretches, small walks, stress management.
 
 
Fatigue: Adjust typical meal pattern, choose nutrient-dense foods, limit refined carbohydrates, address sleep issues, add manageable exercise.
 
 
Dryness: Keep foods moist with sauces, gravies, prune puree, applesauce, honey, agave nectar, dressings, oils, or yogurt. use a food processor to help chop or liquefy foods. Try tender, slow cooked meats (crockpot). Thin foods with broth, water, or non-acidic juices. Try mini meals with frequent liquids to aid swallowing.
 
 
Gluten: Gluten is a protein found in certain grains and can damage the villi lining the small intestine which prevents the body from absorbing nutrients. People with autoimmune diseases such as Sjogren’s have a higher incidence of celiac disease and even just a sensitivity to gluten. It may be worthwhile to try eliminating gluten from the diet to see if it alleviates some of the Sjogren’s symptoms.
 
 
Eating right: A typical meal plate should be divided so that it contains fifty percent fruits/vegetables, twenty-five percent carbohydrates, and twenty-five percent lean proteins. Fish, poultry, nuts and beans are the best choice for protein. Choose healthy fats. Limit saturated fats and avoid trans fats. Choose a fiber filled diet. Choose water as your drink of choice and avoid sugary drinks. Increase calcium intake. Milk isn’t the only, or even the best source. Calcium can also be found in non-dairy sources such as almond and soy sources, beans, and greens. Decrease sodium intake. Eat less processed foods.
 
 
Omega 3: Sources include fatty fish, flaxseed, hemp, algae, and supplements and may play an important role in the inflammatory response. Discuss specific dose with MD or RD but aim for 1000-3000 mg of EPA/DHA per day. Look for at least 500 mg combined of EPA/DHA per pill or spoonful. Always take fish oil with a meal and keep in the refrigerator to minimize side effects. Caution and check with MD before taking Omega 3 supplements when taking blood thinner such as Coumadin/warfarin.
 
 
Vitamin D: Sources include sun, diet, and supplements. Ask MD to check your 25-hydroxyvitamin D, also known as 25(OH)D to determine your vitamin D status. 30ng per milliliter or greater indicates a sufficient level and anything below this indicates a deficiency. 2000IU/day of Vitamin D is the daily dose goal. Deficiency may be linked to neuropathy and lymphoma.
 
 
I think this information was the highlight of what was presented yesterday. There was quite a few things I found helpful. For example, I am a strong believer in the benefits of Omega 3’s and have been long before I was ever diagnosed with Sjogren’s. There has been research done showing the positive effects of larger doses of Omega 3’s for depression and with so many of us dealing with Sjogren’s related mood issues, whether it is situation or medication related, Omega 3’s can be a viable option to traditional prescription medication for depression. Omega 3’s are also obviously known for their anti-inflammatory properties and the dosing guidelines that Ms. Mardigan provided are a good tool.
 
 
 
I have also been very recently diagnosed with an esophageal motility disorder related to Sjogren’s and am having difficulty with at least half of the foods that I used to eat. One of my biggest concerns is regarding the nutritional supplement I was given during my hospitalization which was Ensure. I bought some when I came home and also purchased another one called Boost as I had lost a significant amount of weight in a short amount of time. However when I read the bottles, I was shocked to see how much sugar was in these “nutritional” supplements. Sugar is known to contribute to inflammation and there is also dairy in these products and I follow a dairy-free diet. I have spent a lot of time and energy cutting back refined sugars in my diet so I am not eager to get it all back in my nutritional supplement!
 
 
 
I spoke to Ms. Mardigan about this and she told me about a gluten, dairy, and soy-free nutritional supplement product called Vega, available at Whole Foods and online, that I can use instead that does not have the sugar and will provide me with just as much nutritional support, without all the junk. I am hoping to pick some up tomorrow and try it so I will get back to you all on that.
 
 
Yesterday’s nutrition lecture did not focus on or even discuss any one particular “diet’ for Sjogren’s, but rather discussed different nutritional strategies one can utilize in an attempt to help manage the symptoms related to this very complicated illness. I would be interested in knowing what nutritional strategies (especially any of you who have been following a Paleo lifestyle as I may be heading in that direction) you have found helpful in managing Sjogren’s syndrome.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Photo Courtesy of Google Images

Partners In A Healthy Lifestyle

The very first time I ever noticed my fiance, I was sitting in my usual pew at church. He was walking down the opposite aisle of the church to sit in his own pew by himself. He had a certain presence about him. Maybe it was his long trench coat that hung on his 6’2″ frame or his stylish cowboy hat. Maybe it was his unassuming presence or the gentle way he looked at people when they were talking to him.

The very first time I knew, although I was in denial about it for months, that I was very attracted to my fiance, he was kneeling by my side after church, offering to lend me some of his movie collection as I was trying to recuperate from a very difficult hospitalization. I subsequently fell in love with him for a million and one reasons. Attraction was a part of that love. I was attracted to him on an emotional, mental and of course, physical level. In my eyes, I never saw him physically as anything less than perfect.

So because of this, it came as a surprise to me when last year he mentioned to me that he had lost weight since we started dating in September 2010, that this weight loss was intentional, and that he wanted to lose more. He told me how much he weighed when we started dating and again, I was surprised. I had never thought of him as overweight and to me he had been perfect just as he was when we started dating. I guess that is what happens when the pheromones are in charge! I found him attractive on all levels and his weight was irrelevant to me.

Ignorantly thinking that men are not as concerned about self image as woman are, I didn’t think much of it and 2012 came upon us. I drastically changed my nutrition plan, eliminating gluten and dairy (to help control my autoimmune symptoms) from my diet which meant that at dinnertime, Chuck did too. After my Guillain-Barre fiasco in February, I got more serious about my health. I started exercising regularly and fine tuned my nutrition plan; eating healthier than I had in my entire life. Because Chuck and I are together most evenings and weekends, my healthier eating affected him as well. It was important to him that I be as healthy as possible and do whatever I needed to do to try and manage my autoimmune illness and although I offered, he never considered the possibility of making two separate meals when we ate together.

And as the months have gone by, I have noticed the changes that he has made one by one. Getting to the gym more often. Eating smaller portions at meals. It has been interesting to watch because he is not dieting, but rather just making lifestyle changes, one at a time. It has been great because to be honest, it has made my lifestyle changes a LOT easier when there are not always so many tempting foods in the house and when your partner doesn’t want to eat out all the time. That is not to say that we don’t treat ourselves or indulge from time to time but when we do, it is without reservation or guilt.

He has become my biggest fan and cheerleader in my quest to become healthier and lose weight. For the first time in my life, I have a partner that supports my mission. It is also the first time I have been in a relationship where I am losing weight rather than gaining weight. And he has never ever complained. Not once. He eats every single gluten-free, dairy-free, vegetarian, sugar-free, cardboard tasting recipe I have ever tried. Together we figure out which ones we both like more than others and then I experiment some more so we are eating food that we truly enjoy. When he cooks on the weekends, he cooks gluten and dairy-free. He makes sure the ingredients are measured so that I can then calculate the Weight Watchers points as I do the Weight Watchers program in addition to my gluten and dairy-free lifestyle.

I have come to realize that we have become quite a team. We each have our own strengths and weaknesses when it comes to nutrition and exercise. He is better at staying away from take out and fast food. I am better at making sure we have vegetables with our meals. He is better at the fitness aspect of things and has been good in helping me construct an exercise plan that is doable with my illness. I am better at meal planning and keeping the kitchen stocked.

I have blogged about and been very open about my health and weight loss journey but here’s the thing. It is not my journey. It is OUR journey.

That man that I was so attracted to two years ago? I realized when I looked at him about two weeks ago that he is NOT the same man. Not physically. I was so wrapped up in my own journey that although I knew he was losing weight and I could wrap my arms around him a lot easier, I was not fully aware of his amazing transformation.

I saw him getting dressed that morning and just exclaimed “Oh my God!”

I exclaimed a lot of other things but well, this is a public blog so we will leave it at that.

He had muscle definition in his abdomen, legs, and arms that I had never seen before. The result of exercising five days a week. The result of eating healthier. The result of losing thirty pounds in the two years we have been together.

I have to admit, it gives me a twinge of guilt now and then when I look at him. I am not any more attracted to him than I was before he lost weight but I cannot lie. He looks great. I fully appreciate the changes in his body and I have to wonder if on some level that makes me a bit shallow.

But then I stop and think about how concerned I was about his elevated blood pressure at his doctor visit last year before he lost weight.

I stop and think about how maybe this weight loss might prolong his life and therefore our time together.

I stop and think about how happy he is with himself and how proud I am of his accomplishment.

And I realize that those are the things I am really appreciating.



August 2012
 
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