“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

Many times when seeing a physician for pemphigus or pemphigoid they are quick to prescribe a systemic treatment that will hopefully help you reach remission. This can be a good thing. However, sometimes the obvious may be overlooked.  For example, if you are in pain,  having trouble eating or swallowing, your clothes are sticking to your lesions, the blisters on your scalp make bathing and showering difficult, or perhaps you are having chronic nosebleeds. These symptoms can be managed with topical treatments, but they are often forgotten. There are different options available for different body locations in many different strengths. Be candid with your doctor and let them know where you are having disease activity and how severe it is. Although, ultimately, the systemic treatment is going to make the difference in the long run.  Topical treatment can help relieve many of your symptoms along the way!

If you’re not sure which medications to ask for or their strengths, just “Ask a Coach”!

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

All it takes is the slightest bump up against an object, just a few too many minutes in the sun, eating something that is hard and sharp or even the force of water pressure coming out of your shower head to cause trauma to your skin tissue.  This trauma creates a reaction in your body’s immune system and before you know it a blister or lesion has appeared. So does this mean that you can go out in the sun or do normal activities that most people do? No, but as a patient with pemphigus or pemphigoid it is recommended that you be more aware of any activity that may cause trauma to your skin tissue.  If you have to ask, then you probably already have the answer and you should avoid it and if you are not sure…“Ask a Coach!

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

Marc Yale

Certified Peer Health Coach