Tag Archives: nutrition

Leg “Cramping” Your Style? Ask the Dietician.

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At the Patient Education Conference held at Northwestern University in Chicago on October 15, 2016, Registered Dietitian Beth Doerfler answered patient questions regarding nutrition and scleroderma. If you have any questions, please email us at gcchapter@scleroderma.org.


Q: What are the foot and leg cramps I get every night from and what can I do about them. I have tried using drinks with additional potassium like drip drop but there is a lot of sugar in it and that gives me diarrhea too.

BD: Leg cramps can really interfere with a good night’s rest.  Good sleep is essential to battling fatigue.  To combat leg or muscle cramps, we need to consider both Potassium and Vitamin D.

Vitamin D helps absorb calcium which your muscles use to contract.  Vitamin D deficiency can make muscle cramps worse.  If you have not had your blood levels of vitamin D checked yet do talk with your doctor. Most Americans need approximately 800 IU vitamin D daily and you may need more if your blood levels are very low.  Vitamin D is difficult to get entirely from foods and often we have to rely on some amount of vitamin supplements as well as a diet rich in fortified foods.

If you are looking to eat more potassium I have included a list of potassium rich foods which might be less likely to cause stomach upset.  A typical diet can provide you with approximately 2000 mg of potassium. Aim to boost your diet with potassium rich food by another 500-1000 mg to fight muscle cramps and dehydration.

Spinach (1 cup cooked):                900 mg potassium

Baked potato (1 medium):           920 mg potassium

Dried Apricots (1/2 cup):               755 mg potassium

Acorn Squash (1 cup cooked):    899 mg potassium

Yogurt (1 cup nonfat):                    625 mg potassium

Salmon (3 oz)                                     534 mg potassium

Avocado (1/2 cup mashed):        558 mg potassium

To learn more about topics presented at the Patient Education Conference, visit our YouTube and SlideShare sites for slideshows and videos about managing scleroderma.

 

 

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How I Turned My Life Around by Not Letting Scleroderma Define Me

JPP (22 of 61).jpgKelly Kohls has battled scleroderma for the past 13 years and is dedicated to learning how to more effectively deal with the hardships and struggles that accompany the disease. Over the past few years, Kelly has become a mother, a runner, and a fitness coach- constantly pushing herself and achieving new milestones she never thought possible. As a patient who felt she was defined by her disease, learn how her change in mindset and lifestyle has impacted her self confidence, health, and relationships.


Scleroderma, oh scleroderma (GRRR), let’s just say we have an interesting relationship. I can finally say  now, that it is what I WAS. I mean, don’t get me wrong, I still carry this disease with me every day but let’s just say I’ve come a LONG way from where I began 13 years ago.

FACING CHALLENGES EARLY ON

When I was diagnosed, I had just married my high school sweetheart and was looking forward to our new life together. All of a sudden our world completely changed; it was seriously like someone had swung up a stop sign and smacked me right in the face with it. For the next SEVEN years of my life I was miserable. I was ill and I lost who I was.

Like any autoimmune disease I was exhausted. Not only was the scleroderma kicking my butt, the medication had me completely turned upside down. By the time I was 25 I’d lost most of my independence. My hands significantly crippled. My entire body was so tight it was hard to just move around doing daily tasks. I remember one Saturday specifically my husband, Mike, left for the races. I was heading out later in the day and it didn’t dawn on me that he had never helped me put my socks and shoes on before he left. So I tried putting my socks on. I sat on the edge of the bed and struggled for what felt like hours, my whole body hurt trying to reach my feet. I cried and sat, then tried again and struggled and sat, then I just sat and sobbed. I couldn’t take care of myself. It was heartbreaking, almost like a part of who I was died. I had to accept this new sick person; I had to accept being dependent on others and to accept the changes it was making to my body; internally & externally.

Every three weeks for several years I spent many long days getting IV infusions and blood transfusions because my body couldn’t keep healthy counts that are vital to live. Now, when I think back it just seems so crazy to me how we take our bodies for granted. We just expect them to do ALL the things they are supposed to do at all the right times. Crazy, isn’t it?

THIRTY rolled around…wow, were did that come from? It was the point in my life that I was told I couldn’t have children because I was too ill. This was TOTAL heartbreak on an entire new level! It completely devastated me. Mike was so supportive through everything – my rock and my one true love. Not only did he take care of me but let’s face it, his future was forever changed too. Although he assured me many times that it was okay, a big part of me always felt guilty for taking that away from him.

Little did I know that 30 was going to be a BIG year for me! It was the year I asked myself just WHAT in the heck is going on here? In the last seven years I had battled this horrible disease, my mom suddenly passed away and I was told my future dreams are no longer possible. To say my life was a hot mess was a total understatement.

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TURNING THE CORNER

You guys, I just wasn’t having it. I HAD to turn my life around. I HAD to live it. I’m ONLY 30!! I want to enjoy life and have all the things I ever wanted.

So, I set some pretty huge goals for myself. I realized that I could never cure myself from scleroderma but I knew deep down that there were things I could do to get as healthy as I could control. So, okay guys, are you ready for it? I bought a treadmill! Yes, me! The one who couldn’t even put her own socks on. My goal was to be a runner someday, so every night I walked on this treadmill. Before I knew it I was jogging-3 miles! By the time I was 32 I was a runner- tada! I was running 4+ miles at a 9-10 minute mile…say what?? I was eating healthy & cut out processed foods. Don’t ask me how or why but I went into a “sort of remission.”

Guess what? You’ll never guess! Shortly after I turned 35 I had a precious baby girl. Gahhh!! I’m tearing up right now! Emily is the name of my little miracle. My pregnancy was closely watched but was healthy, normal and very exciting! She was born healthy and continues to be a healthy sweet little two year old. Although I still have scleroderma and deal with struggles each day, I am counting my blessings by continuing to be healthy. Pushing myself each day to be in a POSITIVE state of mind has allowed me to make amazing strides.

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MY LIFE TODAY

Last year I became a fitness coach and I’m in the best health I’ve EVER been! I continue to eat clean and workout every day; I’d also totally be lying if I didn’t say, heck yes I struggle to workout some days. Heck yes I have to modify moves and take it slower – but becoming active and overall healthy about the things I can control has literally changed my ENTIRE life! Now I’m very passionate about coaching and helping other people change their lives to get healthy too – how amazing is that?! If you want it bad enough, you CAN do it! You really can!

I have everything I ever wanted. Well… I do carry scleroderma with me and I could definitely do without that. The one difference about it now though is I don’t let it define me. Yes, it’s what I have but it’s not WHO I am anymore.

It may sound cliché but life is truly amazing; it really is. Sometimes it’s sucky but it has made me a fighter, a strong person, a better person, an amazing mama and wife and I’ve learned to appreciate every moment.  We are all blessed in our own way; you need to fight to find yourself. Only then will you always see the beauty in everything – good and bad.

-Kelly Kohls

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Gaining Weight with Scleroderma

Q: My doctor wants me to gain weight but Ensure and Boost give me diarrhea. How else can I add calories?

A: Gaining weight can be difficult for patients, especially if supplements like Ensure and Boost cause digestive
banana.pngupset. These supplements contain sugars that can pull water into the gut, causing loose stools. If Ensure and Boost are not helping you gain weight because of these side effects, adding in a few snacks per day can help. Weight gain can result from eating an additional 500 calories a day. You can reach this calorie goal by planning 2-3 snacks throughout the day.

 

Snacks containing fat will provide more calories than carbohydrate oravoprotein snacks. Foods high in unsaturated fats, such as avocados or nuts, are great high-calorie healthy options. Although carbohydrates and protein-containing snacks do not have as many calories, they are still good options to include with a high-fat snack.

Incorporate snacks throughout your day by:

  • Packing snacks for when you’re on-the-go
  • Prep snacks at home in the morning so you’re organized for that day
  • Try to schedule when you will fit in your snacks so you don’t forget about them
  • Designate a section of your fridge or pantry for snacks

Here are some high-calorie snack ideas:

Sweet Salty/Savory
Small banana w/ 2 tbsp almond butter 1 oz cheese with crackers
1 cup yogurt w/ ½ cup berries and ½ oz nuts ½ cup egg salad on 1 slice toast
1 small apple w/ handful of almonds ½ cup trail mix
1 cup berries w/ almond or nut granola ½ cup guacamole w/ tortilla chips or veggies
1 slice toast with 2 tbsp SunButter 2 slices avocado wrapped in 2oz deli turkey  
½ PB&J sandwich ½ cup cottage cheese w/ ¼ avocado chopped
1 waffle w/ 1 tbsp nut butter and berries Rice cake with 2 tbsp almond butter

 

 

 

 

SOURCES:

Caruso, Emily. (2015, May 28). 5 Tasty Toast Recipes to Try. Hayati Magazine. Retrieved from http://hayatimagazine.com/living/food/5-tasty-toast-recipes-to-try/  
(2014, May 31). Evening snack on rye bread with cottage cheese and avocado. [Web log]. Retrieved from http://www.eatmorevegetarian.com/evening-snack-on-rye-bread-with-cottage-cheese-and-avocado/

Eating Healthy with Scleroderma

Healthy eating can be difficult sometimes, but we all know it can be beneficial for your health. There are foods that can be included or excluded from your diet that could help to manage some symptoms of scleroderma. Results may vary from patient to patient, since each person is unique, and it’s always best to discuss food options with a nutritionist when possible.

Staying Healthy and Strong with Scleroderma

At our recent Scleroderma Patient Education Conference in Chicago, Bethany Doerfler, MS, RD, LDN for the Northwestern Scleroderma Program discussed how to stay healthy. She goes into detail about nutrition and describes the portion sizes when preparing your meals. She discusses the loss of muscle and how eating the right portions of protein, as well as exercising could help to improve that problem. To watch the video for more information click here: 

Combatting Symptoms with Food

Scleroderma affects thousands of people and the symptoms that accompany the disease can sometimes be exhausting. In addition to medications prescribed by your doctor, these recommendations could be a nice addition to your daily regimen. Here are some scleroderma symptoms and food recommendations that could help manage them:
• Decreased GI Mobility/Constipation: High fiber diets with 100% whole grains, fruits, and vegetables; daily probiotic     and/or yogurt with active cultures
• Inflammation: Deeply colored fruits and vegetables can help to increase antioxidants; eat fatty fish, ground flaxseeds,   and walnuts for omega-3 fatty acids; eat vitamin E-rich foods such as nuts, seeds, and extra-virgin olive oil; consider taking a 1000 IU Vitamin D3 tablet with your fattiest meal, which allows for better absorption.
• Fatigue: In order to keep blood sugar regulated, and have continuous energy you should eat small meals throughout the day. If taking an iron pill, you can take with juice that contains vitamin C to allow for better absorption.
• Raynaud Phenomenon: Animal sources of protein with zinc and iron
• Tight skin: Foods rich in vitamin E such as nuts, seeds, wheat germ, and canola, olive, and peanut oil

Source: University of Michigan Health System. “Eating Well with Scleroderma by Linda Kaminski, MS, RD, CDE” http://www.med.umich.edu/scleroderma/patients/nutrition.htm