“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 individuals with pemphigus and pemphigoid (P/P) present with chronic mouth sores, often well before lesions appear on the skin or other parts of the body. These painful mouth sores tend to be persistent and present as red, ulcerated areas. In some cases — especially those with mucous membrane pemphigoid — lesions may predominantly involve the gum tissue. However, most people with P/P suffer lesions in multiple areas of the mouth, including the tongue, cheeks (buccal mucosa), wet surface of the lips, floor of the mouth, hard and soft palate, and throat.

Oral lesions are often subtle, especially in early stages of P/P. As a result, P/P are often misdiagnosed by both medical and dental practitioners as thrush, food or toothpaste “allergies,” poor oral hygiene, viral infections, or erosive lichen planus. Many patients with P/P are first treated on an empirical basis (treatment based on observation and experience without a definitive diagnosis), often with multiple medications, until one approach offers some relief. The relative rarity of these conditions mean they are often not on a medical or dental practitioner’s “radar” when assessing a patient’s oral lesions.

So if you suffer oral lesions, how can you partner with your dental health care provider to come up with a definitive diagnosis? A thorough review of your symptoms is critical. Make sure your dentist or dental hygienist listens carefully and asks detailed questions about your concerns, such as:

  • How long have you had lesions?
  • What areas are involved?
  • Do you have any skin, eye, vaginal, or rectal involvement
  • What do the lesions look and feel like?
  • Do the lesions move?
  • Does your pain level and disease activity vary over time?
  • Do you currently have any active lesions?

Biopsy confirmed early gingival and mucosal lesions of mucous membrane pemphigoid. These lesions were managed as “non-specific gingival irritation, suspect allergy” for several months prior to a diagnostic biopsy being obtained.

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions.”

While early disease symptoms can be subtle, most of the conditions for which P/P are misdiagnosed are not typically chronic (with the possible exception of erosive oral lichen planus or chronic ulcerative stomatitis). Moreover, at least to a clinician with experience diagnosing and managing these conditions, the clinical appearance is quite distinct — toothpaste allergies and poor oral hygiene do not lead to widespread, chronic oral ulcers!

The saying “diagnosis dictates treatment” is particularly relevant when it comes to treating oral ulcerative conditions. Therefore, the best advice I can offer is threefold:

  1. Your dentist or physician needs to take your complaint seriously and needs to thoroughly investigate your symptoms.
  2. A diagnostic tissue biopsy is essential before your dentist or physician treats you empirically with antifungal, anti-viral, or corticosteroid medication.
  3. If the clinician assessing you does not insist on performing a diagnostic biopsy, insist on being referred to a clinician with extensive experience in the diagnosis and management of oral lesions (e.g an oral and maxillofacial pathologist, periodontist, oral and maxillofacial surgeon, or dermatologist).