Monday, April 22, 2013

Gaining or Maintaining Weight in Sjogren's Syndrome

What's that? You thought I should have actually been STANDING on the scale while I took this picture? You silly person, you. 

I spend a great deal of time here on Reasonably Well wah wah wah-ing about my excess weight, but for many other sjoggies, the opposite problem -- unhealthy weight loss -- is just as difficult. Recently I received a letter from a reader that was very concerned about her dramatic weight loss after onset of her autoimmune disease due to gastro-intestinal issues, oral tissues and teeth problems, and food allergies.

Certainly maintaining a healthy body weight on either side of the spectrum is important for everyone, but for those of us with chronic life-long health problems, it's a vital issue. Our bodies desperately need the best nutrients and energy sources that we can provide for it, and when one's gastrointestinal tract isn't cooperating, has food allergies, and problems with the mechanics of eating in general as a result of dry mouth and inadequate teeth, goodness. What a difficult problem this poses.

I thought about what resources might be most useful to this reader, and it occurred to me that gaining weight/maintaining weight is an issue that appears in other diseases. I found these tips from the NIH Nutrition in Cancer Care site. Obviously, this reader's problem does not stem from cancer, but the inability to obtain good nutrition may be similar:

  • Eat small high-protein and high-calorie meals every 1-2 hours instead of three large meals. The following are high-calorie, high-protein food choices:
  • Cheese and crackers.
  • Muffins.
  • Puddings.
  • Nutritional supplements.
  • Milkshakes.
  • Yogurt.
  • Ice cream.
  • Powdered milk added to foods such as pudding, milkshakes, or any recipe using milk.
  • Finger foods (handy for snacking) such as deviled eggs, deviled ham on crackers, or cream cheese or peanut butter on crackers or celery.
  • Chocolate.
  • Add extra calories and protein to food by using butter, skim milk powder, honey, or brown sugar.
  • Drink liquid supplements (special drinks that have nutrients), soups, milk, juices, shakes, and smoothies, if eating solid food is a problem.
  • Eat breakfasts that have one third of the calories and protein needed for the day.
  • Eat snacks that have plenty of calories and protein.
  • Eat foods that smell good. Strong odors can be avoided in the following ways:
  • Use boiling bags or microwave steaming bags.
  • Cook outdoors on the grill.
  • Use a kitchen fan when cooking.
  • Order take-out food.
  • Try new foods and new recipes, flavorings, spices, and foods with a different texture or thickness. Food likes and dislikes may change from day to day.
  • Plan menus ahead of time and get help preparing meals.
  • Make and store small amounts of favorite foods so they are ready to eat when hungry.
  • See the NCI Web site for Eating Hints: Before, During, and After Cancer Treatment, which has recipes such as Lactose-Free Double Chocolate Pudding, Banana Milkshake, and Fruit and Cream. For a free copy of this booklet, call the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237).

This site had additional recommendations for patients suffering from dry mouth:

  • Keep water handy at all times to moisten the mouth.
  • Eat moist foods with extra sauces, gravies, butter, or margarine.
  • Eat foods and drinks that are very sweet or tart (to increase saliva).
  • Eat ice chips or frozen desserts (such as frozen grapes and ice pops).
  • Drink fruit nectar instead of juice.
  • Suck on hard candy or chew gum.
  • Use a straw to drink liquids.
  • Clean teeth (including dentures) and rinse mouth at least four times a day (after eating and at bedtime). Don't use mouth rinses that contain alcohol.

The Sjogren's Syndrome Foundation Fact Sheet entitled Simple Solutions for Treating Dry Mouth also offers these suggestions:

  • Ask your family doctor to discontinue or provide substitutes for all medications that cause dry mouth.
  • Eat smaller, more frequent meals to stimulate saliva flow.
  • Increase your intake of liquids (e.g. water, diet soda) during the day. Small sips work best.
  • Minimize time in air-conditioned environments such as offices, supermarkets, airplanes, etc.
  • Use a humidifier at bedtime (target humidity 40-50%) during the fall and winter months when the air is dry to increase nighttime moisture and decrease discomfort.
  • Stop cigarette, cigar and pipe smoking to lessen dryness and your risk for other health problems.
  • Chew sugar-free gum or suck on hard diabetic or sugar-free candies, fruit pits or lemon rinds to activate reflexes that will increase saliva. Look for products containing xylitol, a sweetner that may help prevent dental decay.
  • Try artificial salivas. Use 2-3 squirts in the mouth every hour while awake and at nighttime as needed. Do not spit out any preparation that is safe to swallow to help it last longer.
  • Avoid mouthwashes, fluoride rinses or products containing alcohol or witch hazel that can aggravate oral dryness or burning.
  • Apply vitamin E oil (use liquid or punch hole in capsules) or moisturing gels to dry or sore parts of the mouth or tongue. Use 2-3x/day after meals, at bedtime, when talking for long periods, exercising, or any other time your mouth needs long-lasting relief.

I mentioned that the reader may need to have repeated appointments with a nutritionist to help her solve this most important issue of obtaining adequate calories and nutrients for her body at this time.

I also thought that by turning closer attention to good oral care, that some of the discomfort she was experiencing in the actual process of eating may be diminished, and referred her to this list of oral care products as recommended by an oral hygienist. Developing a good relationship with a great dentist would be an important tool for this patient, as well.

I know that several members of our Reasonably Well community also struggle with finding foods that are well tolerated and provide good nutrition to maintain an adequate body weight. Suggestions? Ideas? Support?

Share them here. And thanks.


Shara from Seattle said...

Hi Julia. I am one of those people that has digestive problems with this disease. I believe that most of it is from side effects of the medication I take. Having experienced diarrhea for years, I advocate marijuana again and it can be eaten instead of smoked, incorporated in butter and pills so it isn't like just a bunch of long hairs that use this product- it is perfect for this problem.
Mine is eating chocolate, novelty ice cream treats. I keep boiled or deviled eggs in the fridge. I read an article the other day that said your chances of surviving an operation or trauma is to have those extra pounds. Skinny girls- get to gaining weight right now.I have to take off about fifty pounds. They want to put a sleve on my stomach and everybody that knows me are mad as hell. I don't eat a lot, that's not why I'm getting fat. I'm not getting exercise. I eat pastry ( one is enough for me) but I'd rather be heavier with a diseased body than not have any fat stores for healing.

Nicole said...

I have RA and am pretty skinny, but the same as before I had RA. Just a fast metabolism, I guess. I can easily lose weight just by being stressed or not watching what I eat (!) and am at the bottom of or just below a "healthy" BMI. Basically I have to stay on top of it and eat plenty of good stuff. As I also tend towards low blood sugar I have found that fat is the answer. I stabilizes my blood sugar and adds the calories I need without lots of sugar and junk. I try to include lots of healthy fats: olive oil, nuts, add ground flax seeds to other things, olives. Dairy is my friend and I eat lots of full-fat dairy, too. I never, ever eat trans-fats, and don't eat a lot of red meat, just some. I take fish oil, too, and eat fish regularly.
Being GF helps me avoid a lot of junk food and sugar. I eat at least 4 times a day, 3 meals and a substantial snack. I like the idea of eating a big breakfast. I don't eat quite as big a breakfast as they recommend (not a lot of time to prepare it) but it's always a breakfast with enough protein and fat to make it stick around for awhile. And dark chocolate. :)

Anonymous said...

I'd like to hear some input from those of us struggling with too much weight and Sjogren's. My rheumie is always busting my you know what about losing weight, and I do try really hard to do that, but it doesn't seem to matter how much exercise, how many or few calories, etc. - that number stays the same, or even inches upwards. It is very frustrating for me. I have mild digestive issues, and most likely delayed gastric emptying (among other things). I'd like to hear from others as I am wondering if the non-weight loss thing is due to Sjogren's, too.

Unknown said...

Well it is 6 years later since you wrote this, but I have found out I have Sjogrens and yes I have been trying to lose weight without success for two yrs. I exercise a lot and people who know me and how I ear and how much I eat are amazed I can be as heavy as I am. My Dr. did say it is the Sjogrens and it does affect weight loss. My Dr. is not one to nag me about my weight. I am about 25 pounds over weight but look like I am only about 15 pounds overweight. i am lucky and can carry more weight than what I look like. But it is so so so frustrating not to be able to lose weight considering how I eat and exercise.