From Wendy Busse - MSc, Registered Dietitian
Diet and mast cell disease is a confusing topic. Patients often ask:
- “What should I eat?”
- “Will diet impact the course of the disease?”
- “What foods (if any) are symptom triggers?”
- “Should I follow a low-histamine diet?”
In the absence of well researched “facts,” the internet is full of opinions and speculation. When patients look for help, this speculation adds to their confusion and distress.
In my work, I see the devastating effects of false nutrition information. These concerns prompted me to write articles with practical, common-sense nutrition advise for histamine intolerance and mast cell disease. The bottom line is that everyone is individual – and there is not a one-size-fits-all “mast cell diet.” My hope is the articles will empower the reader to make balanced decisions about their diet and health.
More information available at wendybusse.com.
Q: What is the difference between IgE allergies and Masto triggers? Can you have IgE allergies and Mastocytosis? Are there tests to identify these triggers? (written by Wendy Busse)
A: Some people have a genetic tendency to produce IgE (a type of antibody) to normally harmless substances, such as food, pollen, insect stings and medication. The body produces IgE directed against specific substances. For example, one person may produce IgE directed against peanut and birch pollen, and another person produces IgE directed against egg white and dust mites. Once produced, IgE attach to mast cells. If the IgE are exposed to the triggering substance, the mast cells may activate (degranulate). For example, a patient develops peanut IgE which attach to mast cells around the digestive system. When peanut is eaten, the IgE are exposed to the peanut, which causes the mast cells to activate, leading to anaphylactic symptoms. In most cases, IgE mediated food allergies are consistent. The allergic individual reacts every time the food is eaten. The symptoms also occur quickly after the food is eaten. As a result, IgE mediated food allergy is often called immediate food allergy.
Q: It is possible to have both IgE food allergy and masto triggers? (written by Wendy Busse)
A: Your physician may use skin tests and/or food specific IgE blood tests to determine if your body has produced IgE. Each food is tested individually. If the test to a specific food is negative, IgE mediated allergy to that food is very unlikely (although the food could still be a “masto trigger”). If the test is positive, an IgE mediated allergy to that food is possible. However, false positives are very common. In other words, IgE to a specific food, does not necessarily mean you are allergic to that food. If you can eat a food most of the time without symptoms, it is unlikely that you have a true IgE mediated allergy to that food, even if you have a positive skin or blood. A good article on this topic can be found at www.foodallergy.org/diagnosis-and-testing . Read about “false positives” under the skin prick test and blood test sections. It is extremely important to speak with a knowledgeable allergist to sort this out. You should not introduce IgE positive foods without medical supervision and/or guidance.
Mast cell activation can also be triggered by other substances or events, including a variety of food, food additives, inhaled chemicals, medications/supplements, temperature changes, etc. These are commonly called “masto triggers”. The symptoms can be very similar to IgE mediated allergy. However, the reactions tend to be less consistent. A “masto trigger” may be problematic one day, but well tolerated on a different day. Unfortunately, there are no tests to determine “masto triggers”.
Q: Is there a specific diet to be followed for mast cell disease? How can I figure out which foods I cannot tolerate? (written by Wendy Busse)
A: There is no specific diet, however there are basic guidelines. Using an elimination diet can be helpful to determine food triggers. Mast cell disease patients often report symptom improvement with dietary changes, but these changes vary from person to person. Identifying helpful changes takes some experimentation. If you seem to be reacting to all foods, you might be reacting to the act of eating rather than specific foods. It would be best in this case to find a physician to help you with a plan of action to reduce overall mast cell reactions. Once you get your mast cells under control, you can re-evaluate your diet for potential triggers.
Q: What is a low histamine diet? (written by Wendy Busse)
A: A low histamine diet restricts foods that are potentially high in histamine and/or may lead to histamine release. Histamine is one of several inflammatory chemicals released from mast cells (and other immune cells) and is responsible for many of the troubling mast cell disease symptoms. Histamine can be absorbed into the body from food. Food with very high levels of histamine can lead histamine poisoning (a type of food poisoning that is common with improperly handled fish). Some people may have lower levels of the enzymes which break down food histamine, and may be more likely to absorb histamine from food (histamine intolerance). Histamine forms during fermentation and spoilage. It may also be present in certain fruits and vegetables. However, there has been very little research to accurately measure the amount of histamine in food. A second part to the theory is that certain foods may trigger mast cells to release histamine. There are long lists of histamine releasing foods on the internet, but these lists are based on anecdotal reports. Since there is so much individual variation, and very little concrete information, the low histamine diet is a general guideline that requires experimentation, rather than a diet that should be followed exactly. Here’s a link for more information on the low histamine diet.
Q: Will dietary changes completely control my symptoms? (written by Bonnie Nasar)
A: While improving your diet by eliminating triggers and eating wholesome, balanced meals can help to decrease your symptoms, there is no cure-all for mast cell disease.
Q: Should I take nutrition supplements? (written by Bonnie Nasar)
A: A multivitamin and mineral supplement is a good idea. Some people report benefit of specific supplements, but there have not been any studies to confirm this. Vitamin C is the most common one to report. Quercetin, an antioxidant, has been shown in some studies to inhibit mast cell activity. Before taking any supplement, talk to your physician or dietitian. Be sure to check all ingredients for potential triggers. If you decide to try specific nutrient supplements, do so systematically, and only continue if it makes a significant difference.
Q: How do I eat in a restaurant? (written by Bonnie Nasar)
A: Choose restaurants that are allergy-friendly. Call the restaurant in the middle of the afternoon, when the chefs are not busy and can speak on the phone. Explain that you have severe allergic reactions to certain foods. Even though you may not be truly IgE allergic, using the words “severe allergy” gets people to pay attention and realize the risk involved. Ask about cross-contamination prevention. Go over the menu with the chef and figure out which foods are safe for you. This eliminates the need for the server to ask detailed questions while the chefs are busy at mealtimes.
Q: What do I do when I am sending my child to a playdate or birthday party and the cake has an ingredient they don’t tolerate? (written by Bonnie Nasar)
A: Call the child’s parents in advance to find out what they will be serving. You can then send a packed meal similar to what is being offered from your home. Keep safe cupcakes in your freezer and defrost them the day of any party your child will be going to. Explain to the parent who will be in charge that your child has what is comparable to allergic reactions. It is helpful to have a printed paper with the information on it. Always give the parent in charge all rescue medications your child may need, including antihistamines and epinephrine auto injector. For more help in dealing with children and food issues, go to www.foodallergy.org or www.allergyhome.org.
Q: What problems can occur as a result of an overly restricted diet. (written by Wendy Busse)
A: Mast cell disease patients often follow overly restricted diets for several reasons. First, food is a common symptom trigger. Unfortunately, the reactions to food are often inconsistent (a food bothers you one day, but not the next). When patients have increased symptoms, they often pinpoint a food and eliminate it from their diet. Overtime, this can lead to an overly restricted diet. Secondly, there is a lot misinformation on the internet. Something negative is written about almost every food! This can lead to a negative and fearful mindset about food. Additionally, many mast clients receive very long lists of food to avoid after food hypersensitivity testing. Unfortunately, every test gives a different answer, causing confusion and very long food avoidance lists. All of these factors can lead to an overly restricted diet which has several consequences, including:
- Nutritional deficiencies: It can be difficult to eat a balanced diet when many foods are restricted. These deficiencies further compromise health and well being.
- Fear and frustration around eating: Food is one of our greatest sources of pleasure. A restricted diet can diminish this pleasure.
- Decreased socializing: Food is an important part of most social events.
Here are some tips to minimize dietary restrictions.
- Recognize that information on the internet is often inaccurate. It is usually the author’s opinion, and not a well thought out statement based on objective information. Even if an author lists research studies, they often don’t understand the studies or are looking at only one study, but not the full picture. Repeated statements on the internet, does not make it “fact”. It is like a rumor that starts and pretty soon everyone is repeating it.
- Restrict a food only if you repeatedly react to it. Food is only one of many potential triggers, but it is often blamed for most reactions, because it is the easiest thing to measure. It is much harder to keep track of other triggers; such as changes in body chemicals or inhaled substances. Additionally, frequent meal time reactions in patients with mast cell disease may result from the physical action of digestion, rather than specific foods. If you think that you reacted to a specific food, make a note of it, but keep eating it. Restrict it only if you repeatedly react to it.
- Restricted diets should be individualized and not based entirely on a particular dietary list (e.g. low histamine, low salicylate, etc.). These diets may be used as a starting point, but they are guidelines only.
- Do not have food hypersensitivity testing done, unless an allergist is investigating potential IgE mediated food allergy.
- Get help from a registered dietitian knowledge in mast cell disease.
