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Staying Healthy & Strong 
with Scleroderma 
Bethany DoerflerMS, RD, LDN
Top Nutrition Concerns 
Healthy 
Diet 
How do I 
control gas & 
bloating? 
What Should I 
Eat? 
How should I 
handle feeling 
full early? 
How do I keep 
my muscle? 
Should I take 
Supplements?
Is a Mediterranean Diet Good for Scleroderma? 
Heart Healthy Diet : Not Specific to Scleroderma 
Fruits &Vegetables 
Whole Grains 
Healthy Fats 
Lean Proteins 
REDUCE Inflammation 
Refined sugars 
Refined starches 
Saturated fats &trans fats 
INCREASE inflammatory markers 
Esposito K. Effect of a Mediterranean-style diet on 
endothelial dysfunction and markers of vascular 
inflammation in the metabolic syndrome: a randomized 
trial. JAMA 2004; 292: 1440– 6.
Portion Controlled Mediterranean Diet
Healthy Fats Add Healthy Calories 
Type of Fat is More Important than the Amount
Medical Nutrition Therapy for 
Patients with Advanced 
Scleroderma (MNT PASS) 
PIs: Ikuo Hirano and Patricia Sheean 
Co-I: Bethany Doerfler 
Collaboration between UIC and Northwestern
What Did We Collect? 
18 subjects total 
•Nutrition status and symptom tracking 
 Patient Generated Subjective Global 
Assessment 
Nutrient status (Vitamin A, D, K, iron, folate, 
B12) 
 24 hour diet recall 
 GI symptoms using UCLA SSc GI tool 
 CDC Health Related Quality of Life 
 Body composition to assess bone, fat and 
muscle health
What Did Our Sample Look Like? 
• 18 patients total 
• Average age 51 
• Average BMI= 22 ± 6 (desirable) 
• 100% GI involvement of some type 
 100% GERD 
 Gastroparesis, dysphagia, bacterial overgrowth, diarrhea and 
constipation 
• 50% Sample sarcopenic across BMI category 
 Appear normal weight
Percent of MNT PASS Subjects Below Normal Blood Limits 
TABLE 3: Percent of MNT PASS subjects below normal limits for key nutrients 
MNTPASS Study Participants 
N=18 
Characteristics Table 3 
Labs 
Value 
Percent Below Normal Limits 
Mean (SD) 
Zinc (mcg/dl) 68.8 (16.6) 63% 
TIBC (mg/ml) 296.2 (70.2) 36% 
Vitamin D (ng/ml) 39.7 (20) 33% 
Transferrin Saturation (%) 21.1 (12.5) 31% 
Ferritin (mg/ml) 111.3 (166.3) 25% 
Retinol (ug/dl) 59.1 (23.3) 25% 
Vitamin B12 (g/dl) 554.6 (363.8) 0% 
Folic Acid (ng/ml) 20.9 (6.5) 0%
Supplements 
•Check: 
 Vitamin D 
 Adults aim for 600-1000 IU daily 
 Ask MD check especially if you take acid blocking medications 
• B12/folic acid 
 If you are on acid blocking medications 
• Iron panel and iron stores 
• Zinc levels if you struggle with diarrhea or have high crp 
•Add 
 general multivitamin/multi-mineral supplement 
 Calcium & Vitamin D
How Do I Keep 
My Muscle?
• Check weight monthly 
• Discuss weight loss with Rheumatologist and 
Gastroenterologist 
• Work with dietitian to improve weight status 
• Nutritional supplements as necessary
Sarcopenia: 
•Loss of Muscle Mass and Function 
• Sarcopenia can begin in 40s 
• 70-80 maximum loss. 
•Muscles lose 20-40% Contractile strength for 
both men and women 
• Translates to lower metabolic rate, loss of muscle function, higher risk of 
diabetes
SarcopenicMuscles 
Note difference in muscle 
mass and fat tissue 
Multifactorial disease: loss of 
hormones & less activity 
Exercise attenuate age 
related muscle loss 
Inflammation can speed up 
muscle loss
Important Steps in Weight Training 
http://www.icaa.cc/category.asp?categoryID=63&type=1 
Proper warm up 
and form key to 
prevent injury 
Ask for adaptive 
equipment from 
gym, physical 
therapist or 
occupational 
therapist 
8-12 reps of 6 
different exercises 
is ideal 
Use of resistance 
bands and body 
weight work as 
well as weight 
training
Don’t Push Too Hard: Work Way Up
Muscle: Distribute Protein 
Adults need 60-100 gm protein daily 
Muscle rebuild itself every 3-5 hours 
20-30 gm improves muscle synthesis 
60 gm properly distributed safe kidneys and bones 
Moderate protein intake for 150 lb person is 70-80 gm/daily 
Layman DK, Nutr Metab 2009;6:12
What Does 20 gm Look Like? 
• BREAKFAST: Greek Yogurt & fruit or 
• 2 eggs & whole grain toast or 
• 1 scoop protein powder (rice based, soy, egg or whey) & fruit 
• LUNCH: 2-3 oz lean turkey breast & veggie soup or 
• 1 cup cooked Quinoa & 2-3 shrimp or 
• 1 cup split pea soup, crackers & 1 oz cheese 
• DINNER: 3 ozmeat, fish, poultry, tofu 
• Add veggies and rice to complete
Nutrition RX for Gas & Bloating 
How do I 
control 
bloating? 
Cook Veggies 
& Peel Skin 
Fruits 
Moderate 
Fiber if 
bloated 
Try 
FODMAPS
Common GI Complaints 
• Reflux (GERD) 
• Difficulty Swallowing (Dysphagia) 
• Early Fullness 
• Bloating 
• Constipation 
• Diarrhea 
• Fatigue 
• Weight loss
Dietary Therapy for Fullness 
Balanced Diet 
Small frequent 
meals 
Liquid nutrition 
supplementation 
Healthy liquid fats 
less solid fats 
Cook Fibers 
Control blood 
sugars 
Camilleri M. Gastroenterology 131(2);2006: 640-658; Keld R. J Hum Nutr Diet, 24: 421-430; 
Olausson EA. Diabetes Research and Clinical Practice 80:231-237; Gastroenterology. 2011 
Jan;140(1):101-15
Q: What is Small Frequent Meal? 
A: 3 Meals & 3 Snacks 
Cream of Wheat 
Added Margarine 
Ripe Fruit 
Milk or Kefir 
Pureed Butternut 
Squash Soup 
6 brown rice crackers, 1- 
2 oz cheese 
3-4 oz Baked Fish 
Medium Baked Potato 
Cooked Carrots 
Milk or Kefir 
Ripe Banana 
1-2 tbsp Creamy Peanut 
Butter 
½ Sandwich 
Canned Fruit 
Fruit Smoothie: 
Mango & Greek Yogurt 
or Protein Powder 
Snacks Meals
26
FODMAPS Sample Menu 
Breakfast: 
• Poached Egg 
• corn tortilla or toast 
• ½ cup- 1 cup ripe melon or berries 
• Coffee or tea 
Lunch 
• Cooked vegetable soup 
• Brown Rice crackers & almond butter 
• Banana 
• Sparkling water 
Dinner 
• Roasted fish or poultry 
• Roasted green beans 
• Sweet potato cooked with olive oil 
• Berries & Greek Yogurt 
Snacks: Yogurt, fruit, nut butters, cheese, veggie soups, sushi rolls, 
dairy free frozen treats, dry cereal (oat/rice based), crackers, cold or hot 
cereal with milk alternative
Other Strategies for Healthy Eating 
• Weekend pre-planning 
 Batch cooking 
 Crock pot 
 Freeze in pre-packaged ready-to-go 
• Change expectations of Healthy Meal 
 Cereal with fruit and egg whites great dinner 
• Frozen just as good as fresh 
• Pre-cut/chopped fruits and veggies retain nutritional value 
• Focus on meal assembly 
• Cook and puree hard to digest veggies 
• Consider liquid smoothies at night when motility worst
Seeking Information on Supplements & 
Complementary Therapies 
• National Institute of Health Office of Dietary Supplements: 
 http://dietary-supplements.info.nih.gov/ 
• Look up your supplement: 
 http://ods.od.nih.gov/health_information/health_information.aspx 
• Complementary and Alternative Medicine 
 http://nccam.nih.gov/news/camstats/2007/camsurvey_fs1.htm 
• Institute of Medicine 
 http://www.iom.edu/?ID=4829 
• Department of Health and Human Services Agency for Healthcare Research 
and Quality 
 http://www.ahrq.gov/ 
29

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Staying Healthy and Strong with Scleroderma

  • 1. Staying Healthy & Strong with Scleroderma Bethany DoerflerMS, RD, LDN
  • 2. Top Nutrition Concerns Healthy Diet How do I control gas & bloating? What Should I Eat? How should I handle feeling full early? How do I keep my muscle? Should I take Supplements?
  • 3. Is a Mediterranean Diet Good for Scleroderma? Heart Healthy Diet : Not Specific to Scleroderma Fruits &Vegetables Whole Grains Healthy Fats Lean Proteins REDUCE Inflammation Refined sugars Refined starches Saturated fats &trans fats INCREASE inflammatory markers Esposito K. Effect of a Mediterranean-style diet on endothelial dysfunction and markers of vascular inflammation in the metabolic syndrome: a randomized trial. JAMA 2004; 292: 1440– 6.
  • 4.
  • 6.
  • 7. Healthy Fats Add Healthy Calories Type of Fat is More Important than the Amount
  • 8. Medical Nutrition Therapy for Patients with Advanced Scleroderma (MNT PASS) PIs: Ikuo Hirano and Patricia Sheean Co-I: Bethany Doerfler Collaboration between UIC and Northwestern
  • 9. What Did We Collect? 18 subjects total •Nutrition status and symptom tracking  Patient Generated Subjective Global Assessment Nutrient status (Vitamin A, D, K, iron, folate, B12)  24 hour diet recall  GI symptoms using UCLA SSc GI tool  CDC Health Related Quality of Life  Body composition to assess bone, fat and muscle health
  • 10. What Did Our Sample Look Like? • 18 patients total • Average age 51 • Average BMI= 22 Âą 6 (desirable) • 100% GI involvement of some type  100% GERD  Gastroparesis, dysphagia, bacterial overgrowth, diarrhea and constipation • 50% Sample sarcopenic across BMI category  Appear normal weight
  • 11. Percent of MNT PASS Subjects Below Normal Blood Limits TABLE 3: Percent of MNT PASS subjects below normal limits for key nutrients MNTPASS Study Participants N=18 Characteristics Table 3 Labs Value Percent Below Normal Limits Mean (SD) Zinc (mcg/dl) 68.8 (16.6) 63% TIBC (mg/ml) 296.2 (70.2) 36% Vitamin D (ng/ml) 39.7 (20) 33% Transferrin Saturation (%) 21.1 (12.5) 31% Ferritin (mg/ml) 111.3 (166.3) 25% Retinol (ug/dl) 59.1 (23.3) 25% Vitamin B12 (g/dl) 554.6 (363.8) 0% Folic Acid (ng/ml) 20.9 (6.5) 0%
  • 12.
  • 13. Supplements •Check:  Vitamin D  Adults aim for 600-1000 IU daily  Ask MD check especially if you take acid blocking medications • B12/folic acid  If you are on acid blocking medications • Iron panel and iron stores • Zinc levels if you struggle with diarrhea or have high crp •Add  general multivitamin/multi-mineral supplement  Calcium & Vitamin D
  • 14. How Do I Keep My Muscle?
  • 15. • Check weight monthly • Discuss weight loss with Rheumatologist and Gastroenterologist • Work with dietitian to improve weight status • Nutritional supplements as necessary
  • 16. Sarcopenia: •Loss of Muscle Mass and Function • Sarcopenia can begin in 40s • 70-80 maximum loss. •Muscles lose 20-40% Contractile strength for both men and women • Translates to lower metabolic rate, loss of muscle function, higher risk of diabetes
  • 17. SarcopenicMuscles Note difference in muscle mass and fat tissue Multifactorial disease: loss of hormones & less activity Exercise attenuate age related muscle loss Inflammation can speed up muscle loss
  • 18. Important Steps in Weight Training http://www.icaa.cc/category.asp?categoryID=63&type=1 Proper warm up and form key to prevent injury Ask for adaptive equipment from gym, physical therapist or occupational therapist 8-12 reps of 6 different exercises is ideal Use of resistance bands and body weight work as well as weight training
  • 19. Don’t Push Too Hard: Work Way Up
  • 20. Muscle: Distribute Protein Adults need 60-100 gm protein daily Muscle rebuild itself every 3-5 hours 20-30 gm improves muscle synthesis 60 gm properly distributed safe kidneys and bones Moderate protein intake for 150 lb person is 70-80 gm/daily Layman DK, Nutr Metab 2009;6:12
  • 21. What Does 20 gm Look Like? • BREAKFAST: Greek Yogurt & fruit or • 2 eggs & whole grain toast or • 1 scoop protein powder (rice based, soy, egg or whey) & fruit • LUNCH: 2-3 oz lean turkey breast & veggie soup or • 1 cup cooked Quinoa & 2-3 shrimp or • 1 cup split pea soup, crackers & 1 oz cheese • DINNER: 3 ozmeat, fish, poultry, tofu • Add veggies and rice to complete
  • 22. Nutrition RX for Gas & Bloating How do I control bloating? Cook Veggies & Peel Skin Fruits Moderate Fiber if bloated Try FODMAPS
  • 23. Common GI Complaints • Reflux (GERD) • Difficulty Swallowing (Dysphagia) • Early Fullness • Bloating • Constipation • Diarrhea • Fatigue • Weight loss
  • 24. Dietary Therapy for Fullness Balanced Diet Small frequent meals Liquid nutrition supplementation Healthy liquid fats less solid fats Cook Fibers Control blood sugars Camilleri M. Gastroenterology 131(2);2006: 640-658; Keld R. J Hum Nutr Diet, 24: 421-430; Olausson EA. Diabetes Research and Clinical Practice 80:231-237; Gastroenterology. 2011 Jan;140(1):101-15
  • 25. Q: What is Small Frequent Meal? A: 3 Meals & 3 Snacks Cream of Wheat Added Margarine Ripe Fruit Milk or Kefir Pureed Butternut Squash Soup 6 brown rice crackers, 1- 2 oz cheese 3-4 oz Baked Fish Medium Baked Potato Cooked Carrots Milk or Kefir Ripe Banana 1-2 tbsp Creamy Peanut Butter ½ Sandwich Canned Fruit Fruit Smoothie: Mango & Greek Yogurt or Protein Powder Snacks Meals
  • 26. 26
  • 27. FODMAPS Sample Menu Breakfast: • Poached Egg • corn tortilla or toast • ½ cup- 1 cup ripe melon or berries • Coffee or tea Lunch • Cooked vegetable soup • Brown Rice crackers & almond butter • Banana • Sparkling water Dinner • Roasted fish or poultry • Roasted green beans • Sweet potato cooked with olive oil • Berries & Greek Yogurt Snacks: Yogurt, fruit, nut butters, cheese, veggie soups, sushi rolls, dairy free frozen treats, dry cereal (oat/rice based), crackers, cold or hot cereal with milk alternative
  • 28. Other Strategies for Healthy Eating • Weekend pre-planning  Batch cooking  Crock pot  Freeze in pre-packaged ready-to-go • Change expectations of Healthy Meal  Cereal with fruit and egg whites great dinner • Frozen just as good as fresh • Pre-cut/chopped fruits and veggies retain nutritional value • Focus on meal assembly • Cook and puree hard to digest veggies • Consider liquid smoothies at night when motility worst
  • 29. Seeking Information on Supplements & Complementary Therapies • National Institute of Health Office of Dietary Supplements:  http://dietary-supplements.info.nih.gov/ • Look up your supplement:  http://ods.od.nih.gov/health_information/health_information.aspx • Complementary and Alternative Medicine  http://nccam.nih.gov/news/camstats/2007/camsurvey_fs1.htm • Institute of Medicine  http://www.iom.edu/?ID=4829 • Department of Health and Human Services Agency for Healthcare Research and Quality  http://www.ahrq.gov/ 29

Editor's Notes

  1. To be clear Inflammation does not cause autoimmune diseases or SSC but reducing inflammation may improve overall wellness and how the organs function and risk of developing other chronic diseases such as CVD. This is not the same thing as saying you need to be gluten free or dairy free. Although we see a lot of cross over with Celiac and other auto immune disorders, simply eliminating gluten or dairy is not the whole picture
  2. Example of whole grain (oat) product
  3. Experts agree that maintaining weight is one of the most important nutritional outcomes we can focus on. We will hear from Dr. Sheean shortly about nutrition study that we are conducting and the importance of maintaining weight and lean body mass
  4. Notice that we are not flooding you with protein- we are simply distributing your protein better to make this more appropriate. Younger patients and men or those who exercise quite a bit might need to achieve 30 gm/meal
  5. This is a short look at some of the many MNT principles we might discuss with you. To give you a flavor of what you might accomplish with the help of an RD we look to develop strategies for each GI/nutrition complaint. One example- laying in healthy calories. Healthy fats such as olive oil contain 150 calories for each tbsp. Adding healthy fats to cooked proteins at meal time can help layer calories in an important way
  6. Which dietary component matters most? Meal volume is the most important factor. Liquid fats often empty easily and thus high fat shakes can be an important source of calories for patients with weight loss. SFF are key recommendation to allowing patients to get adequate nutrition. Goals prevent malnutrition and decrease symptoms. Two calorically identical meals will empty at different rates when one is chopped and blenderized. I tell patients think of doing as much physical digestion outside of your mouth as possible. In age of goole, typically patients come in having restricted all fruit and veggies unnecessarily. There are ways to improve and liberalize an overly restricted diet?