[This Self-Help booklet was written in first-person by Sjögren’s syndrome patient Dona Frosio]
Your physician will tell you if you need a special diet. If not, most of us can safely follow the diet guidelines of the American Heart Association or the American Cancer Society.
Many patients have special dietary needs such as:
•Avoiding spicy foods
•Choosing soft, smooth items
•Avoiding alcohol and wine
•Avoiding acidic juices, fruits and vegetables
In a small number of cases, persons with Sjogren’s are also diagnosed with celiac disease and must eat only gluten-free foods.
Check with your physician for other suggestions but also listen to your own body. Do what feels right. Not everyone has the same issues with food, so eat what you can tolerate and avoid those items you cannot.
Note: alcohol dries the mouth, and spicy foods and fruit acids tend to irritate those with dry mouth.
Dryness can affect what we eat in many ways. Certain foods may irritate your mouth while other foods may need lots of liquid to make them go down.
Here are some ways to help with chewing and swallowing:
•Moisten foods with mayonnaise, sauces, gravies, yogurts, or salad dressing. Try dipping dry foods into whatever you’re drinking.
•Soften or thin foods with skim milk, broth, water, or melted margarine. Use your food processor or blender to finely chop or liquefy foods.
•Use a straw if it helps you swallow. Sip your drink while eating.
•Add soup with your sandwich.
•Add cucumbers to a sandwich to add moisture
If it hurts to eat:
•Try smooth, soft, creamy foods like soup, macaroni and cheese, mashed potatoes, casseroles, tender cooked vegetables, canned fruits, pudding, cheesecake, ice cream, and even tender cooked and simmered meats.
•Drink high-calorie, cold liquids such as milk shakes, instant breakfast drinks, or liquid nutritional supplements for both calories and ease in eating.
•Suck on fruit juice popsicles, ice chips, or other cold foods to help reduce the pain.
•AVOID salty, acidic, or spicy foods, or carbonated drinks that prolong pain.
•AVOID hot foods. Room temperature meals are easier to eat.
•AVOID hard, crunchy foods such as tough or crisp meats, dry snack foods, crusty bread, popcorn, or nuts since they can be irritating.
When dining out, don’t be shy about asking your waiter for help. Most will ask the cook if an item contains lots of pepper or other hot spices. (I always figure that deserves a larger tip.)
When it comes to food, the dry mouth of Sjögren’s syndrome is not the only thing that many of us have to worry about. GERD, celiac disease, allergies and lactose intolerance, to name a few, can compound the problems of finding something you can eat when away from home. Here are some of my ideas about preparing for a day out, a trip or a quick errand.
When I travel I always carry some “emergency food.” For example, I always carry instant oatmeal in its own container. This will take care of breakfast, lunch or dinner for me. Shelf stable soymilk completes my sumptuous feast. If there is any soymilk left over from the little 8 oz. container, I can store it in the little fridge in the room. You could also take oatmeal in the little packets but don’t forget to pack a bowl. Something else that can be fixed easily is instant soup. There are many varieties that are mouth friendly and come in their own containers. Macaroni and cheese in the single serving size is doable if you use a little extra boiling water and let it sit longer. Here again, don’t forget your bowl.
I also pack those little single servings of fruit such as applesauce. The pop-top, individual cans of fruit also make a great dessert. Pudding in individual serving containers is another nifty food to bring. Meal replacements in a can such as Ensure are good and certain protein bars are ok if I have something warm to wash them down with. Of course fresh fruit, like bananas, is nice and portable for the first day or so. Most airports seem to have some vendor that sells them and although pricey, I’m worth it.
I also get individual bags of baby carrots at a local grocery store near me. You could also peel and cut up your own and put them in plastic bags perhaps with some celery if you like that too. Refrigerate leftovers and they should last several days. I make up my own trail mix using the fruits and nuts that I’m not allergic to. I carry some on the plane with me and pack the rest in my check-in bag.
For all the foods that require hot water, run a few pots of plain water through the coffee maker to clear out some of the old flavors. If you have the room in your baggage, a better solution is taking along a hotpot. This appliance is inexpensive, lightweight and packs easily. You can also fill it with supplies so space isn’t wasted. A little immersion heater you put in a cup will also work. I bring my own tea bags with me so I really appreciate water not having coffee overtones.
I have mentioned all of my emergency foods but since your particular needs may differ, start looking at the grocery store with your travel plans in mind. I would rather enjoy my destination and not worry about finding something I can eat while there.