staying healthy and strong with scleroderma

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Staying Healthy & Strong with Scleroderma Bethany Doerfler MS, RD, LDN

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Bethany Doerfler MS, RD, LDN discusses top nutrition concerns of scleroderma patients, as well as the results of a recent medical nutrition therapy study. She also discusses strategies for healthy eating, combating GI issues, maintaining muscle, a Mediterranean diet, supplements and more.

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Page 1: Staying Healthy and Strong with Scleroderma

Staying Healthy & Strong with SclerodermaBethany Doerfler MS, RD, LDN

Page 2: Staying Healthy and Strong with Scleroderma

Top Nutrition Concerns

Healthy Diet

What Should I Eat?

How do I control gas &

bloating?

How should I handle feeling

full early?How do I keep

my muscle?

Should I take Supplements?

Page 3: Staying Healthy and Strong with Scleroderma

Is a Mediterranean Diet Good for Scleroderma?

Fruits &VegetablesWhole GrainsHealthy FatsLean ProteinsREDUCE Inflammation

Refined sugarsRefined starchesSaturated fats &trans fatsINCREASE inflammatory markers

Heart Healthy Diet : Not Specific to Scleroderma

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.

Page 4: Staying Healthy and Strong with Scleroderma

Mediterranean Diet

Page 5: Staying Healthy and Strong with Scleroderma

Portion Controlled Mediterranean Diet

Page 6: Staying Healthy and Strong with Scleroderma
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Healthy Fats Add Healthy CaloriesType of Fat is More Important than the Amount

Page 8: Staying Healthy and Strong with Scleroderma

Medical Nutrition Therapy for Patients with Advanced Scleroderma (MNT PASS)PIs: Ikuo Hirano and Patricia SheeanCo-I: Bethany Doerfler

Collaboration between UIC and Northwestern

Page 9: Staying Healthy and Strong with Scleroderma

What Did We Collect?

•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

18 subjects total

Page 10: Staying Healthy and Strong with Scleroderma

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

Page 11: Staying Healthy and Strong with Scleroderma

Percent of MNT PASS Subjects Below Normal Blood Limits

TABLE 3: Percent of MNT PASS subjects below normal limits for key nutrientsMNTPASS Study Participants Characteristics Table 3 N=18

LabsValue

Percent Below Normal LimitsMean (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%

Page 12: Staying Healthy and Strong with Scleroderma
Page 13: Staying Healthy and Strong with Scleroderma

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

Page 14: Staying Healthy and Strong with Scleroderma

How Do I Keep My Muscle?

Page 15: Staying Healthy and Strong with Scleroderma

• Check weight monthly• Discuss weight loss with Rheumatologist and

Gastroenterologist• Work with dietitian to improve weight status • Nutritional supplements as necessary

Page 16: Staying Healthy and Strong with Scleroderma

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

Page 17: Staying Healthy and Strong with Scleroderma

Sarcopenic Muscles

Note difference in muscle mass and fat tissueMultifactorial disease: loss of hormones & less activityExercise attenuate age related muscle lossInflammation can speed up muscle loss

Page 18: Staying Healthy and Strong with Scleroderma

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

Page 19: Staying Healthy and Strong with Scleroderma

Don’t Push Too Hard: Work Way Up

Page 20: Staying Healthy and Strong with Scleroderma

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

Page 21: Staying Healthy and Strong with Scleroderma

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 oz meat, fish, poultry, tofu• Add veggies and rice to complete

Page 22: Staying Healthy and Strong with Scleroderma

Nutrition RX for Gas & Bloating

How do I control

bloating?

Cook Veggies & Peel Skin

Fruits

Moderate Fiber if bloated

Try FODMAPS

Page 23: Staying Healthy and Strong with Scleroderma

Common GI Complaints

• Reflux (GERD)• Difficulty Swallowing (Dysphagia)• Early Fullness• Bloating• Constipation• Diarrhea• Fatigue• Weight loss

Page 24: Staying Healthy and Strong with Scleroderma

Dietary Therapy for Fullness

Balanced Diet

Small frequent meals

Liquid nutrition supplementation

Cook Fibers

Control blood sugars

Healthy liquid fats less solid fats

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

Page 25: Staying Healthy and Strong with Scleroderma

Q: What is Small Frequent Meal?A: 3 Meals & 3 Snacks

Cream of WheatAdded Margarine

Ripe FruitMilk or Kefir

Pureed Butternut Squash Soup

6 brown rice crackers, 1-2 oz cheese

3-4 oz Baked FishMedium Baked Potato

Cooked CarrotsMilk or Kefir

Ripe Banana1-2 tbsp Creamy Peanut

Butter

½ SandwichCanned Fruit

Fruit Smoothie: Mango & Greek Yogurt

or Protein PowderSnac

ksM

eals

Page 26: Staying Healthy and Strong with Scleroderma

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Page 27: Staying Healthy and Strong with Scleroderma

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 waterDinner• 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

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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

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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/

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