“Is there a diet I can go on to help treat my disease?”

It’s one of the most common questions that I receive at the foundation. The answer is, unfortunately, no.

There is currently no diet that will help to put your disease into remission. However, there are certain foods that may exacerbate your condition.

Pemphigus and pemphigoid are very patient-specific diseases. Everyone’s disease activity varies. Well, the same thing goes for diet and these diseases. The foods that negatively affect one person’s disease activity may do nothing to another individual. It is about becoming an expert on you.

We recommend keeping a food calendar or journal. Write down all of the foods that you eat each day, along with your disease activity. Over time you may begin to see patterns form. For example, you may see that every time you eat onions, new lesions appear or current lesions worsen. You then can try to omit onions from your diet to see if it helps.

Patients have reported improved disease activity after changing their diets or eliminating certain foods. It should be noted that other patients have reported no change from adjusting their diet. Again, it is about becoming the expert on you and working with your treating physician every step of the way.

Foods that patients have reported to be bothersome (you may want to talk with your doctor about avoiding these):

  • Citrus
  • Acidic Fruits
  • Bagels
  • Garlic
  • Potato Chips
  • Barbeque/cocktail sauces
  • Horseradish
  • Relishes
  • Chili
  • Onions
  • Red Sauces
  • Chocolate
  • Pickles
  • Tomatoes
  • Creole
  • Popcorn
  • Worcestershire sauce
  • Pretzels
  • Pizza
  • Tortilla Chips
  • Red wine
  • Coffee

Some patients’ oral disease activity is so bad that it is hard for them to consume any food at all. Lesions in the mouth can be painful and cause severe discomfort when eating. The result is a poor nutrient intake, which can result in weight loss and loss of the body’s protein stores. The resulting malnutrition causes fatigue, impairs wound healing, and decreases the body’s resistance to infection.

Suggestions to help prevent malnutrition:

  • Eat a variety of foods daily.
  • Take a multivitamin with minerals if you feel you do not eat the recommended serving sizes of each food group.
  • Weigh yourself weekly. If losing weight, investigate ways to increase calories and protein in your diet.

Soft foods which may be easier to swallow:

Cook coarse or hard foods, such as vegetables until they are soft and tender

Soften or moisten foods by dipping them in gravies or cream sauces

Take a swallow of a beverage with solid food

Eat small frequent servings rather than a large amount of food at one time

Rinse your mouth with water, peroxide, or Biotene during and after eating to help remove food and bacteria and to promote healing

  • Soft fruits, such as applesauce
  • Nectars, such as peach, pear, or apricot; no fresh juices, like orange or grapefruit juice
  • Apple juice (diluted with water if necessary)
  • Canned fruits
  • Pureed meats and vegetables
  • Milk shakes (add protein powder or egg whites for additional calories and protein)
  • Custard and puddings
  • Macaroni and cheese
  • Pasta with margarine or butter
  • Scrambled eggs, egg beaters, omelets, egg salads
  • Oatmeal and Farina (cool to room temperature)
  • Whipped potato (sweet potato or yams)
  • Mashed vegetables (carrots and peas)
  • Cottage cheese
  • Yogurt
  • Cheesecake
  • Meatloaf and tuna casserole
  • Ensure drinks
  • Soups
  • Casseroles
  • Pastas
  • Smoothies

When you experience disease activity in your mouth it can be quite uncomfortable.  Patients may experience blisters anywhere inside the oral area: inside of cheeks, upper and underside of tongue, roof of mouth, and as far back as where the uvula is. The gums can peel as well.

Swallowing can be difficult. If this occurs for you, having anything soft is advised. For example, smoothies, yogurt, mashed potatoes, cream of wheat, etc. Avoiding citrus fruits is recommended, as that can agitate your oral lesions.

If your gums are peeling, ask your dermatologist if he/she can prescribe to you a topical corticosteroid. A ‘Magic Mouthwash’ can also be prescribed.

Try not to use alcohol-based mouthwashes as it can be uncomfortable to your lesions. Gentle toothpastes such as Sensodyne or Toms of Main can still be too harsh. If those products are irritating your lesions try going the old-fashioned route of using a paste of baking soda and water.

The use of straws is not recommended if you have flare-ups in the mouth as this can irritate them.

The IPPF suggests that you keep a food journal, so that if a flare-up occurs you can look at the list of foods you have consumed prior to the flare-up and determine which food or spice could be the culprit.

Keep your gums as healthy as possible by using a waterpik on a low speed, and use a very soft toothbrush. Regular dental checkups should be continued as normal, and if you’re going to have any dental work done advise your dermatologist. Depending on the level of activity you have and the medications you are taking, your dosage may be increased a few days prior and a few days after the procedure.  Advise your dentist of this, as well.

Remember, when you need us we are in your corner!

Mei Ling Moore – Peer Health Coach