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Eating Well With Scleroderma

January 2019

Linda Kaminski, MS, RD, CDE


Nutrition & Lifestyle Consultant
Dinesh Khanna, MD, MS
Associate Professor of Medicine
Director, University of Michigan Scleroderma Program
T
he foods we eat affect our
health in many ways, for Symptoms of Malnutrition
better or for worse. Fruits The following symptoms can also describe the underlying scleroderma and
and vegetables are beneficial foods may be difficult to distinguish from malnutrition. New or worsening symptoms
that provide our bodies with energy (such as fatigue or excessive weight loss) may indicate malnutrition.
and essential nutrients. Processed • Unexplained weight lost (10 percent or more) during a
junk foods, such as cookies, potato three-month period
chips and sugary sodas, are devoid • Weakness and muscle wasting
of nutrients and, in large amounts, • Excessive or new onset fatigue
potentially harmful to our bodies no • Increased susceptibility to infection (weakened immunity)
matter our age or current health. • Delayed wound healing
However, when a person faces a • Brittle nails and excessive hair loss
potentially debilitating chronic dis-
• Excessively dry and flaky skin
ease such as scleroderma, in which
fatigue, digestive difficulties and chewing, swallowing, and/or pre- levels along with a hydrogen/lact-
nutrient deficiencies are common, paring their own food may suffer ulose breath test.
a high quality, nutritious diet must from inadequate nutrient intake,
take center stage to enhance quality or “undernutrition”. This could ulti- If you are eating less due to prob-
of life and successful management mately lead to excessive weight loss lems chewing or swallowing, try
of symptoms. and malnutrition. However, some- these suggestions:
There is no one specific “sclero- one who has extensive GI involve- • Blend fresh fruits and vegetables
derma diet” since symptoms and ment may eat enough food, but still into juice.
severity of disease varies widely. be unable to absorb the nutrients • Make homemade smoothies using
However, striving o create a bal- properly. This results in specific fruit, vegetables, yogurt, 2-per-
anced diet that emphasizes foods vitamin or mineral deficiencies, cent milk, nut butter, ground
that fight inflammation and provide with or without obvious symptoms.
energy, protein, vitamins and min- flaxseeds, chia seeds, and/or
It is important for everyone unsweetened protein powder.
erals is of utmost importance. with scleroderma to have his or
Systemic sclerosis is a condition her nutritional status monitored • Include soft, moist protein sourc-
in which the immune system over- regularly and to eat healthy foods es during meals and snacks
stimulates the collagen-producing from all the different food groups such as cottage cheese (if toler-
cells of the body causing inflamma- (as tolerated) every day. Substantial ated), scrambled eggs, yogurt,
tion and an excessive buildup of col- weight loss during a three-to-six- fish, chicken with gravy, ground
lagen. This leads to hardened skin month period could indicate inade- meats, and creamy or cheesy cas-
and fibrosis of internal organs such quate nutrient and calorie intake. seroles.
as the lungs, digestive tract and Measuring your weight at home at
blood vessels. While there is no sci- If you have lost an excessive
regular intervals is a simple step
entific evidence indicating any spe- toward monitoring your mal amount of weight, consider the fol-
cific foods or nutrients are capable nutrition risk.
of increasing or decreasing collagen Your health care team may
production, the foods you eat can perform these laboratory tests
have a positive impact on your dis- to diagnose malnutrition:
ease condition by fighting fatigue,
• Protein malnutrition:
inflammation and digestive dysfunc-
Blood tests to assess total
tion. (There is no scientific evidence
protein, serum albumin
showing collagen-containing foods,
and serum pre-albumin.
such as meat and bone broth, will
accelerate collagen production.) • Specific vitamin/mineral
People who suffer from sclero- deficiencies: Blood tests
derma are at increased risk of mal- to assess serum hemoglo-
nutrition even if they try their best bin, iron, ferritin, total
to eat a healthy diet. Malnutrition iron-binding capacity, zinc,
in scleroderma is caused either by vitamin D, folate, and vita-
inadequate intake of nutritious min B-12.
foods or from poor absorption of • Small bowel bacterial
nutrients from the gastrointesti- overgrowth: Blood tests
nal (GI) tract. Individuals who eat to assess serum folate,
less because they have difficulty carotene, and/or vitamin D

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lowing to help restore weight and cane juice, fruc-
nutritional status: tose, brown rice
• Have your doctor rule out small syrup, honey,
bowel bacterial overgrowth and agave nectar,
gastroparesis. molasses, corn
syrup and maple
• Liberally add sources of healthy
syrup.
fats to your diet such as olive,
coconut and peanut oils; nuts, • Consider taking
seeds and nut butters; avocado; an over-the-
fatty fish; and oil-based salad counter multi­
dressings. vitamin or min-
eral supplement
• Make smoothies with fruits,
containing 15 mg
vegetables, and high protein/cal-
zinc; 10 to18 mg
orie ingredients such as full fat
iron; vitamins
yogurt, almond or peanut butter,
A, D, E,K, folate
protein powder, and avocado.
and B-12. If
• Include a high-protein and specific nutrient
high-calorie liquid nutrition sup- deficiencies have
plement (such as Ensure® Plus or been identified,
Boost Plus®) between meals one extra supple-
to three times per day. If you are mentation may
unable to tolerate those options, be required. If you have bloating and/or constipation, consider remov-
try Boost Breeze®, a high protein or distention, taking a probiotic ing foods containing wheat (gluten)
juice-based alternative. supplement such as Align® or or dairy (lactose) from your diet, one
• Eat every two hours to maximize Culturelle® may help restore food item at a time. These foods often
calorie and nutrient intake. intestinal function and alleviate are difficult to digest. If removing
symptoms. wheat and/or dairy products does
GENERAL DIET not provide relief, starting a low
RECOMMENDATIONS • Drink fresh, filtered water that
has never been exposed to plastic. FODMAP diet may prove beneficial.
• Eat small meals frequently – FODMAPs are sugars and other
Use a water filtration system at
every three to four hours. If you carbohydrates found in a variety of
home and drink only from glass
have lost an excessive amount foods that tend to be poorly digest-
or stainless steel containers. Aim
of weight or only can eat small ed and absorbed by the gut. These
to drink half your body weight
amounts at a time, consider eat- components are easily fermented by
in ounces of water each day. For
ing every two hours to maximize bacteria in the intestine, and can
instance, a 150-pound person
nutrient intake. cause abdominal pain, gas, bloat-
should drink 75 ounces of water
• Choose fresh, whole, minimally daily. ing, diarrhea and/or constipation.
processed foods, without preser- Aggravating gastrointestinal symp-
vatives, artificial ingredients or Low FODMAP Food Guide toms often resolve when foods rich
hydrogenated oils. If there are To resolve problematic gastroin- in FODMAP’s are removed from the
“chemical” sounding names in the testinal symptoms such as severe diet. Be sure to check ingredient lists
ingredient list, avoid it. In gener- gas, bloating, discomfort, diarrhea, on all foods.
al, the shorter the ingredient list,
the better.
• Add antioxidant rich, anti-inflam- FODMAP
matory herbs and spices, such as stands for:
basil, rosemary, oregano, cinna- Fermentable
mon, ginger, paprika, cayenne,
turmeric and curry powder, liber- O ligosaccharides (fructans and galactans)
ally to foods. Disaccharides (lactose)
• Cut down on added sugars.
(Natural sugar found in fruit, Monosaccharides (excess fructose in a food)
milk and yogurt is not a con-
cern unless it causes GI dis-
A nd
tress.) Check ingredient lists for Polyols (sugar alcohols like sorbitol, maltitol,
stealthy terms indicating added mannitol, xylitol and isomalt)
sugar such as sucrose, evaporated

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FOOD GROUP SERVING SIZE CHOOSE AVOID SUGGESTIONS
Fruit 1 small whole fruit All varieties in Those that cause excessive Choose organic as often as possible.
1 cup pieces deep colors of the gas, bloating or GI discomfort.
2 to 3 servings per day Choose fresh and frozen instead of
(melon, grapes, rainbow: green,
*See low FODMAP diet for details. canned fruits.
berries) red, orange, yellow,
1/4 dried (raisins, purple and blue Eat only one serving at a time to limit
cherries) GI distress.
1/2 cup canned

Vegetables 1 cup raw, All varieties in Those that cause excessive Choose organic as often as possible.
chopped deep colors of the gas, bloating or GI discomfort.
5 to 7 servings per day Choose fresh and frozen over canned
1 cup leafy rainbow: green,
*See low FODMAP diet for details. vegetables.
1/2 cup cooked red, orange, yellow,
purple and blue

Proteins (i.e. meat, 2 to 3 ounces Choose lean cuts Highly processed meats such Choose organic or grass-fed meat and
fish, cheese, eggs, meat (size of deck of beef or pork, as bacon, sausage, pepperoni, cheese as often as possible.
nuts, beans) of cards) skinless chicken or salami, hot dogs, bologna,
turkey. Remove extra fat and skin from meats
corned beef and pastrami
aim for : 1 ounce protein before cooking.
equivalents: A variety of fish such Breaded and deep-fried fish,
2 to 3 ounces per meal or as wild salmon, wild chicken, pork and beef For healthy Omega-3 oils, eat 8 to 12
1 ounce per snack 1 egg; 1-inch cod, whitefish, or ounces of fatty fish, such as salmon,
cube of cheese; chunk light tuna every week.
1 medium slice
of cheese; 1/4 Organic eggs
cup tuna or cot- Organic cheeses
tage cheese; 2
tablespoons of Nuts and seeds, as
nut butter; 1/4 cup well as nut butters
nuts; 1/2 cup dried Dried beans (as
beans tolerated)

Milk/Dairy 1 cup milk Low-fat or fat-free Avoid dairy products with Choose organic as often as possible.
varieties lactose. This may help resolve
2 to 3 servings per day 6 to 8 ounces Try goat cheese and yogurt to limit
problematic GI symptoms.
yogurt Try Greek-style GI distress.
yogurt for extra *See low FODMAP diet for details.
protein

Whole Grains 1 slice bread 100 percent whole Avoiding gluten-containing Look for labels that read “100 percent
1/2 cup pasta or grains, such as grains such as wheat, rye, whole grain.”
3 to 6 servings per day
rice minimally-processed and barley may improve GI Choose foods with three grams of
3/4 cup cereal whole wheat bread symptoms. fiber or more per serving.
1/2 cup cooked and cereals, barley, *See low FODMAP diet for details. Limit white and refined grain products
cereal quinoa and oats
4 to 6 crackers as much as possible (many gluten-free
bread products are highly refined)
Fats/Oils 1 tablespoon oil Extra virgin olive, Avoid trans fats from hydroge- Limit solid fats from butter, shortening
1/4 cup nuts peanut, avocado, nated and partially hydroge- and margarine.
1 to 2 servings per day
2 tablespoon and coconut oils nated oils.
For healthy Omega-3 oils, eat 8 to 12
seeds most often.
Minimize use of safflower, ounces of fatty fish, such as salmon or
2 tablespoon nut
sunflower, grape seed, whitefish, every week.
butter All nuts, especially
vegetable, corn and
1/8 avocado almonds, walnuts,
soybean oils.
flaxseeds, pine nuts,
natural peanut and
almond butters.

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FODMAP CATEGORY FOODS TO AVOID* (high) FOODS TO CHOOSE** (low)
Oligosaccharides: GRAINS GRAINS
Fructans & Galactans • Products containing wheat and wheat flour, • Corn tortillas, grits, oatmeal, unsweetened
such as bread, cereal, baked goods, corn and rice cereals, rice, millet, quinoa,
Fructo-oligosaccharides (FOS) crackers, pasta, etc. buckwheat, soba noodles, polenta,
Galacto-oligosaccharides (GOS) • Products containing rye, such as bread sourdough bread, and other products
and crackers derived from these grains (quinoa or rice
noodles etc.)
• Barley
• Foods labeled "gluten-free" (GF) are usually
FRUITS/VEGETABLES
well-tolerated, such as GF bread and pasta
• Banana (very ripe), grapefruit, persimmon,
(look for “whole grain”)
plum, dried figs, dates, nectarine, peach,
watermelon FRUITS/VEGETABLES
• Asparagus, artichokes, peas, leeks, • Celery, spinach, potatoes, carrots, corn,
shallots, onion, scallions, garlic leafy greens (spinach, lettuce, kale, arugula,
collard), radish, tomato, green beans,
BEANS (LEGUMES)
zucchini, olives, pickled beets, summer
• Baked beans, black beans, kidney, pinto,
squash, spaghetti squash
navy, fava, split peas
• Soy beans, soy milk, soy flour BEANS (LEGUMES) (limit portion)
• ¼ cup drained/rinsed garbanzo beans
NUTS
• Cashew and pistachios • 1/2 cup drained/rinsed lentils
OTHER NUTS/SEEDS
• Additives such as inulin, chicory root, and • Almonds, peanuts, pecans, macadamia,
FOS, often found in snack bars, yogurt, pine nuts, walnuts, sunflower seeds, chia
and ice cream (check ingredient list) seeds, sesame seeds, pumpkin seeds
• Carob
Disaccharides: • Cow, sheep, and goat milk • Lactose-free milk and milk products
Lactose • Standard milk products such as yogurt, • Almond, rice, and coconut milks and yogurts
pudding, ice cream, custard • Hard cheeses such as cheddar, Colby,
• Cottage cheese and ricotta cheese Swiss, provolone, mozzarella, parmesan
• Milk chocolate • Soft cheeses such as brie, goat, feta
• Dark chocolate
Monosaccharides: FRUITS/VEGETABLES FRUITS (Limit portion to 1 cup)
• Apple, pear, watermelon, mango, cherries, • Berries such as blueberry, cranberry,
Contain excess fructose
boysenberry, dates, fresh figs raspberry, strawberry
• Fruit juices containing apple or pear juice • Citrus fruits such as kumquat, lemon, lime,
• Asparagus, sugar snap peas, Jerusalem mandarin, clementine, orange and tangelo
artichoke, sun-dried tomatoes • Other: small, firm banana, cantaloupe,
honeydew, kiwi, passion fruit, star fruit,
SWEETENERS grapes, papaya, plantain, pineapple and
• High fructose corn syrup, corn syrup rhubarb, 1 Tbsp. dried raisins/cranberries
solids, honey and agave
SWEETENERS
• White sugar, brown sugar, vanilla, pure
maple syrup, rice malt syrup, cocoa powder

Polyols FRUITS/VEGETABLES FRUITS (limit portion)


• Apricot, apple, blackberry, nectarine, plum, • Ripe guava, small firm banana, berries, and
Sugar alcohols, such as sorbitol, mannitol,
peach, pear, apple, watermelon, cherries, other fruits listed above
xylitol, isomalt and prunes
VEGETABLES (limit portion)
• Cauliflower, mushrooms, snow peas, and
large amounts of avocado, butternut • 1/8 avocado; ¼ cup butternut squash,
squash, and sweet potato ½ cup sweet potato
• Foods labeled "diet" or "sugar free", such • Small amounts of foods containing polyols
as snack bars, gum, and baked goods, may be tolerated
often contain sugar alcohols
(check ingredient list)
*Some foods may be tolerated in small amounts
**Foods absent from the list may or may not cause distress
A one-on-one consultation with a dietitian is recommended to ensure that this restrictive low FODMAP diet will adequately meet your nutritional needs.
To find a dietitian in your area, visit www.eatright.org.

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Managing Specific Scleroderma- whole grains, fruits and vege- cise such as walking, bike riding,
Related Issues tables. Take a daily probiotic pool exercise, Pilates, yoga, Qi
• Reflux or heartburn: Eat small, supplement (such as Align® or Gong or Tai Chi. Sleep for seven
frequent meals to avoid overfill- Culturelle®) and/or eat yogurt to eight hours each night. If iron
ing your stomach. Avoid eating with active cultures regularly. levels are low, which is typical of
two to three hours before bed- Drink plenty of plain, filtered someone with chronic disease, dis-
time. Avoid foods that may aggra- water throughout the day to stay cuss additional iron supplemen-
vate symptoms such as citrus hydrated. tation with your doctor. If you
fruits, tomato products, greasy • Inflammation: Choose deeply currently take an iron pill, take it
fried foods, coffee, garlic, onions, colored fruits and vegetables to with juice containing vitamin C to
peppermint, gas-producing foods increase antioxidant intake, espe- allow for better absorption.
(such as raw peppers, beans, cially dark green, deep yellow, • Poor circulation/Raynaud
broccoli or raw onions), spicy orange, red, purple and blue. Eat Phenomenon: Exercise will
foods, carbonated beverages and fatty fish, ground flaxseeds and increase circulation to areas suf-
alcohol. If you carry extra weight walnuts for Omega-3 fatty acids. fering from limited blood flow. If
around your midsection, weight Eat vitamin E-rich foods such as you have finger ulcers, eat ani-
loss also may improve your symp- nuts, seeds and extra virgin olive mal sources of protein with zinc
toms. Use a sleep wedge or ele- oil. Consider taking a 1000 IU and iron (such as beef and pork)
vate the head of your bed to raise vitamin D3 (cholecalciferol) tablet to improve wound healing.
your head and torso to prevent with your fattiest meal (to allow • Tight, thickened skin: Eat foods
regurgitation of stomach contents for better absorption).
rich in vitamin E such as nuts,
into airways. • Fatigue: Eat small, frequent seeds, wheat germ, and avocado,
• Decreased GI motility and meals to provide continuous ener-
gy and keep blood sugar from olive, and peanut oils; consider
constipation: Exercise, such as
walking, helps move food through dipping too low. Increase fluid taking 5 mg (5000 mcg) biotin
the digestive tract. Eat a high intake. Participate in 30 to 60 supplement, which may help skin
fiber diet including 100 percent minutes of moderate daily exer- and nails.
Please consult a Registered Dietitian (RD) before dramatically changing your diet.
Visit www.eatright.org to find an RD in your area.

The Scleroderma Foundation’s mission is three-fold:


a To help patients and their families cope with scleroderma through mutual support programs,
peer counseling, physician referrals, and educational information.
a To promote public awareness and education through patient and health professional semi-
nars, literature, and publicity campaigns.
a To stimulate and support research to improve treatment and ultimately find the cause and
cure of scleroderma and related diseases.

300 Rosewood Drive, Suite 105


Danvers, MA 01923
Phone: 978-463-5843
Fax: 978-463-5809
Info Line: 800-722-HOPE (4673)
Email: sfinfo@scleroderma.org
Website: www.scleroderma.org
www.facebook.com/sclerodermaUS
www.twitter.com/scleroderma
www.youtube.com/sclerodermaUS

Text and logo © 2019, The Scleroderma Foundation, Inc. January 2019 – Rev. 4

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