Nutritional Aspects in ATTR-Amyloidosis Anna Hsing-Kabar - - PowerPoint PPT Presentation

Nutritional Aspects in ATTR-Amyloidosis

Anna Hüsing-Kabar Medizinische Klinik B für Gastroenterologie und Hepatologie Universitätsklinikum Münster 2ND EUROPEAN ATTR AMYLOIDOSIS MEETING FOR PATIENTS AND DOCTORS 02.09.2019

Is there a special diet for ATTR-Amyloidosis?

• There is no special diet for ATTR-

Amyloidosis

• Taking care of nutritional aspects

helps to reduce gastrointestinal symptoms and is able to improve quality of life

• A balanced diet can help boost your

mood, give you more energy and improve your overall feeling

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Symptoms of hATTR-Amyloidosis

• Polyneuropathy
• Carpal tunnel syndrome
• Impairment of visus
• Cardiac symptoms such as dysrhythmia and myocardial
• ……
• Gastrointestinal symptoms caused by

autonomic neuropathy (early satiety, nausea, vomiting, dysmotility of the bowel, constipation, diarrhea, abdominal distension, etc.)

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Bloating and abdominal distension I

Often caused by excessed intestinal gas, which is produced by microbiota from carbohydrates and fibres General recommendations to reduce intestinal gas:

• Do not drink liquids at mealtime, if you do, drink slowly and in small quantities (water or water/juice

mixes without gas)

• Avoid carbonated drinks (e.g. soft drinks)
• Avoid stress and during meal times without swallowing air
• Avoid chewing gum
• Eat slowly and chew your food well
• Switch to several small meals throughout the day instead of three large ones

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Bloating and abdominal distension II

Avoid nutrients causing gases:

• Pulses/Legumes (beans, lentils, peas)
• Vegetables like olives, peppers,

asparagus, raw vegetables

• Naturally high-fat meats like goose or

duck and higher-fat animal parts in general (e.g. skin)

• Fried or battered food
• Carbonated beverages
• Unripe fruits and dried fruits (soft prunes

etc.)

• Cabbage (red cabbage, broussels sprout)

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• Leak, allium, onions, garlic, wild garlic
• Mushrooms
• Spicy meals
• Products rich in sugar (sorbitol,

fructose)

• Yeast based pastry, warm bread,

grain products

• Dairy products

Constipation I

Avoiding Constipation:

• Daily recommended intake of water is 1,5 -2 liters per day,

depending on your weight (30 ml/kg/KG) and renal/cardiac function

• Liquids may include water, juices or water/juice mixes, soup,

tea, and other beverages, no alcohol

• Black tea steeped for 3 minutes stimulates the digestive

system

• Try to do physical exercises daily
• Try buttermilk, yoghurt and quark
• Ask your doctor or pharmacist for side effects of your medication:

some analgesics cause constipation (opiates)

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Constipation II

• Avoid low fiber diet, if possible (cave: abdominal distension), increase dietary fibers slowly
• Eat vegetables every day (some raw: carrot, pepper, tomato ...)
• Eat raw fruit if possible with skin (pear, apple, peach, berrys ...)
• Prefer wholemeal bread, pastry and cookies, brown rice
• Eat dried and dehydrated fruits (e.g. plums, apricots)
• In case you do not tolerate high fiber nutrients: try dietary supplements containing e.g. flagseed,

psyllium or wheat bran

• If you develop gases by using wheat bran, it may be caused by insoluble dietary fibers; then prefer

psyllium husk or just reduce the amount

• In case that changes of diet, adding fibers, drinking sufficient and doing excercises are not beneficial,

ask you doctor for help, in some situations laxatives may be indicated

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Diarrhea I

In case of diarrhea ask your doctor for differential diagnosis: is it due to a gastrointestinal infection (stool tests, blood test, further diagnostics) or is intestinal hyperactivity and motility caused by ATTR? Recommendations in case of diarrhea:

• Drink liquids in small amounts during the whole day (fluid balance)
• Avoid alcoholic beverages: sparkling wine, whiskey etc.
• Prefer still water, black tea (long time brewing of > 10 min to release tannic acids), camomile tea, peppermint tea
• Grated apple or banana puree (pectines bind liquid and thicken digestive tract content), bananas contain potassium

(compensates electrolyte loss)

• Prefer white bred or rusk (easily digestible carbohydrates)
• Try slightly salted crushed rice (the mucilagenous substances bind water) for example with steamed vegetables

(carrots, zucchini)

• Potatos are also rich in potassium and often well-tolerated
• In case of steatorrhea talk to your doctor

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> 10 min.

Diarrhea II

Avoid intake of:

• Milk and dairy products for some days
• Raw fruits and for one week vegetables, vegetables and raw vegetables: tomato, cucumber, cabbage
• Spices like pepper, curry, peppers
• Fried potatoes, fried meat and fish
• Almonds, walnuts, hazelnuts, pistachios, peanuts, nuts
• Wholegrain foods
• Sugar-added drinks, such as soft drinks and sparkling water
• Fermented beverages such as wine and beer and alcoholic drinks (wine etc.)

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Nutrition counselling/ Nutritional therapy

• In case of gastrointestinal symptoms cuased by ATTR, nutrition

counselling might be helpful

• Ask for specialists in nutrition
• Learn how to deal with hATTR Amyloidosis associated

gastrointestinal symptoms (individual approach)

• Especially in case of unwanted weight loss, altered fluid balance and

long lasting obstipation, diarrea etc. caused by hATTR Amyloidosis nutritional therapy might me indicated

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Aims of Nutrition counselling and nutritional therapy

• Analysis of inidividuals digestibility of nutrients
• Ensure sufficient supply of (micro)nutrients
• Support of body function/ organ function
• Improve immunological status
• Improve nutritional status
• Avoid weight loss
• Ensure muscle strength

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Nutritional therapy

• Preparation of a food diary
• Documentation of physical activities
• Find out which groceries/food is digestible for you
• Analysis of food diary and professional suggestions (clinical

nutritionists)

• Monitoring of nutritional status initial and in follow up visits
• Counselling includes partner, depending on who prepares the meals,

who goes food shopping etc.

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Monitoring of nutritional status

• Laboratory measurements:
• Electrolytes, liver enzymes, Vitamins, trace elements and

micronutrient serum levels (Vitamin A, B1, B2, B6,12, D, zinc, selenium, folic acid etc.)

• Bioelectrical impedance analysis
• Phase angle, BCM, ECM/BCM
• Medical history+ physical examination
• Edema, skin colour, rhagades, skin ulcer, etc.

BIA (Bioelectrical impedance analysis)

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Possible interventions in case of malnutrition…..

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Powders, sip-feed products and creams

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• Enriching your meals

with powders

• Add sip-feed if

necessary

• Cooking with sip-feed
• r creams (soups

e.g.)

• Try savory variants

instead of sweet ones if you prefer hearty meals

Samples of Sip-feed, powders and creams available at our center

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Parenteral Nutrition

• In case oral supplements and addititional sip-feed do not reach

sufficient nutritional status, parenteral nutrition might be initiated (e.g. in advanced disease stages); Cave: fluid balance depending on renal/cardiac function. Vitamins and trace elements will be added

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Parenteral Nutrition (J.E., 06.10.2011, 33kg/1,62m)

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Parenteral Nutrition (J.E., 30.04.2012, 43,2kg/1,62m)

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Nutritional Management

Pharmacy Family doctor Nutritional medicine Homecare- services Nursing service Medical expert centers

Summary

• Nutrition should be adapted to individual gastrointestinal symptoms
• Contact a clinical nutritionist/ dietician for individual consultation
• Monitoring of nutritional status (BIA, symptoms, lab)
• Supplements of vitamins and trace elements if necessary
• Considering of supplementary food in case of gastrointestinal symptoms

followed by weight loss

• Discussion of parenteral nutrition in advanced ATTR disease stages with your

doctor/nutritionist in case of progressive malnutrition

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For further details…

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Available at the desk of the FAP e.V. on level 1

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Contact

• Dr. Anna Hüsing-Kabar

Universitätsklinikum Münster

• Med. Klinik B für Gastroenterologie und Hepatologie

Diabetologie/Ernährungsmedizin Tel.: 0251-83- 47661

Survey of patients with ATTR amyloidosis – Understanding of ATTR patients needs and challenges Your experiences matter. Please take the survey available at the desk of the FAP e.V. on level 1!