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Dietary Change

Indications: When is a Dietary Change Advisable?

With MCAS, an elimination diet is not only one of the most important diagnostic tools but also the most important therapy. In the presence of symptoms and a medical history that could suggest a mast cell mediator syndrome, the diet described here should in any case be strictly followed for a limited period of time. Whether one responds to this elimination diet or not can only be found out by experimenting with the diet. No laboratory testing or other diagnostic measures are able to reliably predict if the elimination diet will be successful.

Possible reasons for failure of therapeutic treatment are explained below.

Foodstuffs to be Eliminated

Why Are Some Foods Not Tolerated?

The webpages Disease > Pathomechanism and Disease > Histamine Metabolism explain the mechanisms by which mast cell diseases produce symptoms. With this information it is possible to identify and avoid food with histamine potential:

• Most important is the avoidance of histamine liberators (to be more precise: liberators of mast cell mediators).
• Also inhibitors of the histamine degrading enzymes (DAO-Inhibitors, HNMT-inhibitors, MAO-inhibitors) can have negative effects.
• In addition foods high in histamine can provoke the release of more histamine from mast cells, via histamine receptors.
• Other biogenic amines besides histamine can sometimes also trigger symptoms, because they stop histamine degradation through competition for the same enzymes. Some biogenic amines have effects similar to histamine.

Food compatibility list: What is Tolerated / Incompatible?

For MCAD, it is much more difficult than for any other intolerance to answer the question which foodstuffs and additives need to be avoided. The transition between tolerated and not tolerated is changeable, determined by individual severity, the amount or the trigger consumed - and sometimes also depending on the freshness of the foodstuff, so that it is not possible to define sharp boundaries. Tolerance is also, to a certain degree, individual and dependent on many factors (see the section "What you need to know before you start"). Therefore, not all affected individuals will need to follow exactly the same diet, with the same degree of strictness. The procedure presented on this website will enable you to determine the best possible diet for your specific individual needs.

Symptoms should be avoided as much as possible. The symptoms are not just a temporary sensitivity, but rather when symptoms are present the body is also exposed to an increased risk of permanent damage and consequential illness. For the small number of affected people vulnerable to immunologic or nonimmunologic anaphylaxis, there is also the risk of an anaphylactic or anaphylactoid shock, which, in the worst case, can result in death.

Important: It is not possible to create a compatibility list that is equally valid for all affected persons. Not all people react the same way to the same foodstuffs: Reactions are dependent on the type of mast cell activation and potential further physical disorders (e.g. histamine metabolism). In the section "Tolerance Levels" further reasons why the border between tolerated and not tolerated is not always identical will be discussed. The basic rule is: you may eat everything, including those things which are listed here as "not tolerated" or are not on the list, as long as you remain symptom free (or as long as it does not increase your symptoms).

Other indexing may be found in other language translations: see Downloads

This Food Tolerability List, despite its comprehensiveness, is by no means exhaustive or infallible. We are always happy to receive new suggestions. The list also includes – where known – details of whether the foodstuff contains histamine or other biogenic amines, or is a histamine liberator or DAO-inhibitor. This influences the type of symptoms.

The values are valid only for the "pure" ingredient WITHOUT not tolerated additions or additives. Always pay attention to the ingredients list, even where you would not expect to find additives!

Examples:

• Pure cream is generally well tolerated. Most creams available in the supermarket contain incompatible additives, for example, E410 (carob gum) or E407 (carrageenan).
• Pure spirit vinegar (BE) = distilled vinegar (AE) = white vinegar (CaE) would be well tolerated. Some distilled vinegar products, however, contain incompatible additives (preservatives, colorants) for example: E202 (potassium sorbate).
• Pure Rooibos-Tea would be compatible. Most teas described as "Rooibos", when the ingredients list is read, turn out to be a mix of Rooibos and other, mostly not tolerated, ingredients and flavours.
• Carrot juice or curd cheese with fruit would, in principle, be well tolerated, but almost always contain lemon juice concentrate (a histamine liberator).
• ...

Preventing Malnutrition

When following the diet described here many foodstuffs from all food categories will be eliminated. Despite this, in every category there are still many foods that are tolerated. No food group needs to be avoided completely. So it is still possible to eat a healthy and balanced diet, without omitting any essential food groups. The prerequisite is, of course, that you know what you need to watch out for. Otherwise, it is better to consult a dietitian. Also people who do not have MCAD (for example, family members who are not affected), can unhesitatingly eat the diet described here. This diet consists of common, unmodified food (in contrast to other diets, where special foods with altered nutritional values are used, such as reduced calories, lactose-free or gluten-free). Histamine is not an essential foodstuff for unaffected people either. It is rather an undesirable metabolic product, which needs to be degraded and eliminated. A low-histmaine diet therefore does not harm anyone. (Other necessary diets, e.g. because of allergies or intolerances must, of course, continue to be followed.)

How to Adapt Your Diet

In order to find out if you need to follow one of the elimination diets described below, and how strictly you need to follow it, it is recommended to follow the five steps listed below:

1) Differential Diagnosis with an Allergy Specialist (Allergist, Allergologist)

In addition to their MCAD diagnosis, many affected people have other allergies or intolerances. If these are not entirely known, then success will be difficult with the elimination diet. To achieve a clear improvement, other potential illnesses must be diagnosed and treated at the same time. Therefore, it is best, before beginning the test diet, to clarify if you have any other allergies, intolerances, or illnesses.

2) Diagnostic Elimination Diet (4-6 Weeks)

A diagnostic elimination diet (exclusion diet) is currently the most conclusive method to test if a person reacts to histamine and/or histamine liberators (more precisely: liberators from mast cell mediators) and therefore should follow a appropriate diet. There are, however, some difficulties:

• The diet is very complex, and is not so easy to understand and implement as other diets.
• Not all histamine-sensitive people react the same way. Histamine intolerant people react mainly to histamine (that is, to fermented, ripened, matured or perishable foods) and less so to histamine liberators. MCAS affected people, in contrast, react to numerous histamine liberators. Whereas a reaction to histamine will occur within hours of consumption, reactions to histamine liberators can be very diverse and symptoms may be time delayed. Sometimes symptoms do not appear after a one-time consumption of the trigger, but cumulatively accrete over days, when you consume more than one successive meal containing incompatible foodstuffs. Also, the abatement of symptoms can take many hours or days. This makes it incredibly difficult to identify meals or ingredients which trigger the emergence (or chronic continuation) of symptoms.
• Sensitivity is not always consistently reproducible, but is dependent on the form of the day, influenced for example through stress and other environmental factors.
• How strictly the dietary rules need to be followed is very individual and depends on the severity of the symptoms. For the detailed design of the diet one should therefore not rely on any compatibility lists, but on the individual experiences of the person concerned.

As long as you are suffering from mast cell-derived symptoms, it is usually not possible to notice sensitivity to all incompatible ingredients. Only in a symptom-free state can the compatibility of food be assessed clearly enough. Thus, to begin with you should only consume the most compatible foodstuffs, until the symptoms have subsided noticeably and have settled at a stable level. (Not everyone achieves a total elimination of symptoms with this diet.)

The most reliable way to achieve your goals, is when you start with a minimal number of ingredients, and step by step create your individual diet. Start with a rice-diet: Only consume water, rice and salt (rock salt or evaporated salt, without added fluoride and without added iodine). No other ingredients such as seasoning, stock powder/cubes or culinary herbs! Once your symptoms have reduced, add potatoes (at the beginning, peeled and soaked). This potato-rice-diet should be followed for 2-5 days, as necessary. Under no circumstances should you follow it for more than 7 days (unless this is prescribed and supervised by a professional), because you can suffer malnutrition. Subsequently, you should, step by step, add individual, well tolerated ingredients (according to our list of tolerated foodstuffs, see below).

An initial, clear improvement in your wellbeing should normally be seen in the first two days. Further progress can take weeks or months.

Keep to the elimination diet consistently for four to six weeks at first, until the symptoms have fallen to a stable, low level. Only the provocation diet described below can confirm that a particular item is truly responsible for your symptoms.

From the beginning, or at the latest if you find it is not possible to rebuild a full and varied diet without outside help, this dietary experiment should be accompanied by a dietitian or a dietary advisor specialising in food intolerances.

It is recommended that you keep a food and symptoms diary:

Keeping a Food and Symptoms Diary

It is recommended to keep a food and symptoms diary - starting days (or weeks, if you have time) before changing your diet, in which you record what you eat at what time, and when which symptoms in which intensity appear.

Example of how to create a food and symptoms diary. Leave much more space than is seen in this condensed example in order to be able to include everything.

• Make a note of absolutely everything consumed, regardless of what it is, with its estimated amount :
  • Food, including starters, desserts and snacks
  • Drinks
  • Stimulants, including alcoholic drinks and tobacco
  • Sweets, chewing gums
  • Medicines, including inhaled or externally applied medicines
  • Dietary supplements, restorative tonics
• Homemade foods: List all ingredients. Include herbs and spices, sauces, garnishes, etc. Also include the ingredients in the ingredients (for example, thickener in cream, lemon juice concentrate in apple yoghurt, etc.). These should at least be able to be determined later, for example, by writing down the manufacturer and product name.
• Convenience products: keep the packaging or at least the ingredients list.
• The time of consumption: If the food is not freshly cooked, add a note of how old it is. E.g. "leftovers from yesterday's dinner"
• The type and intensity of symptoms as well as the time they occured and how long they lasted, should also be clearly noted.

3) Provocation Tests

In this stage clearly incompatible foods out of various food categories are reintroduced (meat products, dairy products, vegetables, fruit, additives, etc). Only if you react to many of those foods rated as incompatible, the diagnosis can be considered confirmed. (Be aware that sometimes reactions may only occur very slowly after repeated consumption over days and therefore are easily overlooked!) This stage is not supposed to be part of creating a varied diet, but is still a part of the diagnosis. The goal is to detect clear reactions. The patient does not need to test everything according to the list, but should consider this stage finished when the results are clear enough for him/her.

The learning part of the provocation test is important. Once the elimination diet has been successful you will stop believing that it is necessary, because the suffering which motivated you has gone and you feel well. Following the provocation testing, in contrast, you will have painful memories which will demonstrate that it is not possible to do anything else than keep to the diet.

4) Recreation of a Balanced Diet, Therapeutic Elimination Diet

In order to avoid malnutrition, you should eat as balanced and varied a diet as possible. Food Tolerability Lists can only provide help with general orientation when recreating a balanced diet. Every individual has to test for themselves which foodstuffs they tolerate and in what amount. To find this out individual ingredients are separately added to the menuplan, ideally consumed in three consecutive meals. If the symptoms reappear, then this foodstuff should be marked as not tolerated and you should return to a diet that you know is tolerated until the symptoms abate. If no symptoms have appeared by the following day, the foodstuff can be considered as tolerated, and you can start to test a new ingredient.

The Therapeutic Elimination Diet created in this way must be maintained as long as you suffer from this condition. Nevertheless, it is good to know that, even with incurable MCAD, time often improves the situation, the chronic symptoms abate, nutrient uptake from the intestines improves and the body recovers partially. Through this, your sensitivity reduces and you tolerate more than you were previously able to.

Because tolerance is dependent on dosage, ingredients which are not tolerated often do not have to be completely avoided. Often they are able to be tolerated when consumed in small amounts with other ingredients.

With an optimal nutrient supply you are more likely to tolerate foods far better than if you have malnutrition or have a faulty diet. Give yourself several balanced meals daily, which will provide your body with sufficient nutrients in the correct proportion to each other. In as many meals as possible you should include foodstuffs from each of the following three categories:

1. Protein: meat, fish, dairy, egg yolk, hemp seeds, etc
2. Carbohydrate: potatoes, cereals and cereal products (spelt, rice, corn, barley, wheat, millet, rice flour, ...)
3. Vegetables, Salad, Fruit

5) Medication-Based Treatment

Depending on the severity of your intolerance, the Elimination Diet may be insufficient to completely eliminate your symptoms. There are, however, various medicines available that can be taken, either permanently or when necessary, in order to improve quality of life. Typically, several complementary active ingredients will be needed in combination.

Responding as positively as expected to the medication suitable for MCAD represents another important aspect of diagnosis and shows whether one is on the right track.

Stage 4 (Recreating a Balanced Diet) is often a process requiring years. Consequently, it makes sense to begin taking medication already in this stage. It should be taken into account that under this medication the tolerability of food can no longer be assessed as well as without medication. Often, thanks to medication, the elimination diet can be relaxed a little further. However it is important to remember that medication is not a replacement for dietary control, but that the diet is and remains the main component of the therapy.

Possible Reasons for Failure of Therapeutic Treatment

Should the strict elimination diet fail to make you symptom-free, then the following are possible reasons:

Salicylate- / Benzoate-Intolerance

Should you already find on the rice-potato diet that you do not tolerate potatoes well, then you should inform yourself about Salicylate-Intolerance. You should also do this if you react to ingredients listed in the section on salicylate- / benzoate-containing foodstuffs, or to medicines containing acetylsalicylic acid (short: ASS, e.g. Aspirin), or other substances with a related molecular structure. A striking number of people affected with MCAD inform us that they do not tolerate plant-foods rich in salicylites. Other affected people, however, show no reaction even to large amounts of food rich in salicylates. We do not completely understand whether the salicylate/benzoate intolerance is an additional intolerance, independent of MCAD, or if it is merely the degree of severity of MCAD which determines whether salicylate / benzoate in certain amounts is able to activate mast cells. Those concerned with MCAD will not necessarily react to them, although there seems to be a connection between MCAD and salicylate intolerance. In our assessment, salicylates in food are generally adequately tolerated. Thus here we provisionally consider salicylate / benzoate intolerance to be an additional intolerance, which we will describe in a separate section and it will not be included in the "L" Liberators column of our Food Compatibility List. But keep a careful watch on how you react to these ingredients!

The Necessity for Well-Managed Medication-Based Treatment

Often it is not possible to achieve complete freedom from symptoms with the diet alone. Medicinal support, which is adjusted to your individual case is then necessary. There are various medicines which are used, often in combination, for this purpose. See page Therapy > Medicaments.

Dietary-Independent Permanent Activation of Mast Cells

As described on the page Disease > Pathomechanism, according to the current state of research, various causes of the disease may be possible: e.g. genetic mutations or other pathological changes in mast cells and other cell types, which occur in different combinations and can lead to different clinical presentation. Mast cells can thus either become more easily activated, so that they react more sensitively to external stimuli, or they can be permanently activated independently of external stimuli:

• The elimination diet or the general avoidance of triggers is particularly successful in those pathological changes that lead to higher sensitivity and thus to easier activation. Avoiding the triggers stabilizes these pathologically altered mast cells. This also allows the healthy mast cells, which were secondarily activated by the altered mast cells, to be calmed again. The avoidance of the triggers shows a good success in such cases.
• Mast cells with certain mutations that lead to a permanent activation independent of external influences, remain permanently activated even if the triggers are avoided. Therefore, unfortunately, there are also MCAD cases which do not respond to the diet (and also to the medication) or only to a limited extent. However, the activity of the secondarily activated healthy mast cells can then be reduced somewhat by medication. Note: If the diet shows no effect, this does not necessarily mean that one is wrong with the suspicion of MCAD, but it can be a form with permanently activated mast cells. This has also to be considered when choosing a suitable medication.

Unrecognised dietary mistakes

The diet is complicated and requires a lot of learning time and a lot of diligence to its implementation. In the beginning you will make a lot of unrecognised errors. It is possible that these unrecognised errors (incompatible ingredients, or insufficient freshness) may be responsible for a lack of success or an inexplicable setback. Sufficient intellectual abilities, some general education, and some specialist knowledge in chemistry, biology and food technology / food science is an advantage here.

If you are failing with the Elimination Diet, don't just hold strictly to our Food Compatibility List, but read our other pages to find out what you might additionally need to pay attention to. Check everything again, and don't forget that besides nutrition (food) there are also many other triggers to be considered.

If you want to be safe, read the ingredients lists again every time you go shopping. A manufacturer can (and often does) change the recipe of their product at any time and this may not be immediately apparent on the packaging, but only written inconspicuously on the ingredients list.

Dietary Rules not Followed Strictly Enough

Often, people say that they have already done a “Histamine Elimination Diet” and had no success with it. There are also studies which test “histamine reduced diets”, which do not find any conclusive results. These diets are not the same as the comprehensive Elimination Diet described here. Often these diets, and the patients instructions, only take a few foodstuffs into account, so that patients continue to consume foods which are not tolerated. Dietary instructions from other authors mostly pay attention only to the histamine content of the food, and pay insufficient attention to histmine liberators or Mast Cell mediators.

If an Elimination Diet is unsuccessful, it may be that the diet is not followed strictly enough, or that dietary errors are made. Even our Food Compatibility List is based on our current knowledge and experience, but it is not perfect, and has to be improved and adapted to individual sensitivity. For this we are reliant on your feedback. Please tell us about your experiences!

Additional Intolerances, Allergies or other Illnesses

There is a high probability that in addition to MCAS you have other intolerances, food allergies or cross-reactions or auto-immune diseases, etc. If your symptoms arise from multiple cases it will achieve little to treat just one of these illnesses. For completely successful treatment all the causes of your symptoms have to be identified and treated. See page Diagnosis (paragraph Differential Diagnosis).

False Declarations, Quality Defects

Always consider the possibility that the information you have been given may be incorrect. Innumerable sources of error are not only theoretically possible, but also occur repeatedly. Product declarations can intentionally or unintentionally be incorrect:

Products can inadvertently be put in the wrong packaging, or stocked on the wrong shelf in the supermarket. When the ingredients are mixed an employee could make an error... or the recipe is changed, but the product information is not updated either on the packaging or for the sales team. For some products, there can also be hygiene failures.

If the product information is in multiple languages, it can be worthwhile taking the time to read and compare the translations of the ingredients carefully. For example, on a Greek product the preservative was by mistake translated as "ascorbic acid" (which is easily tolerated vitamin C) instead of "sorbic acid" (which is strongly incompatible). However, the German translation said “Sorbinsäure”, not “Ascorbinsäure”. Without comparing the English version with other translations, it is impossible to notice such mistakes.

Worth knowing

Explanation of Terms

Diet
In general usage, the term "diet" usually means a calorie reduced diet with the goal of weight loss. We use the term diet, not as a synonym for weight loss dieting, but in its wider sense:
A diet generally describes a system of nutrition for which a special selection of foodstuffs is consumed, whether for a long time or permanently. Besides the calorie reduced diet (weight-loss diet) it also means a long term or even permanent dietary change to support treatment of a disease (medically prescribed diet, special diet). Every dietary form, be it for weight loss or to support the treatment of illness is based on a reduction or an increase of the relative proportions of particular nutritional elements in comparison to other elements or a reduction or an increase in the amount of energy delivered (calories). In some diets certain nutritional components are completely avoided (e.g. food allergies).

Elimination Diet, Histamine Elimination Diet
A nutritional system, whereby as many "foodstuffs to avoid" as possible are omitted (in our case, all foodstuffs with Histamine Potential) is called an Elimination Diet.

Overcoming the Rejection Stage

In the first stage, when people are confronted with a suspected diagnosis of histaminosis or MCAD and realise that this is a possible explanation for their symptoms, many people reject this conclusion. They say: "No. I don't want this, it's too complicated and is too restricting" and prefer waiting for months or years to see if it will go away on its own. In your own interests, you should try to get past this stage as quickly as possible, or else you will lose unnecessary months in which you could have spared yourself suffering.

Laborious Learning Process

It is not surprising if in the beginning you have difficulty in adapting to a new diet; that you feel your quality of life is even more limited than before. But this will soon improve with more experience. With time you will discover more possibilities, develop new strategies, even discover new tasty foods which you didnt know existed. Rejoice in these discoveries and in your new wellbeing!

Exchanging experiences in a self-help group or in a discussion forum can support and speed up this learning process.

Individual Tolerance Thresholds can Change

The severity of the symptoms is dose-dependent. By varying the amount (or the freshness) the affected person can find out where his personal tolerance threshold lies, at which an incompatible food can still be tolerated. However, one should not be confused by the fact that this tolerance threshold is not always the same, but depends on the current daily form, which is influenced by many factors:

• What you ate and drank before, with and afterwards
• Stress (e.g. better tolerance on holiday than under pressure)
• Current levels of vitamins and minerals
• Air pollution (smog, ozone, particulate matter)
• Nicotine consumption, passive smoking
• Great physical effort
• Infection, sites of inflammation, injuries
• For allergy sufferers: contact with allergens and cross reactions
• Length of sleep, irregular sleep rhythms (staying up late, jet lag)
• Weather changes (in particular, approaching cold fronts, windy weather)
• Foodstuffs contaminated with pollutants (heavy metals, pesticide residues, medicine residues, and other environmental toxins?)
• Amalgam fillings in your teeth?
• etc.

A further difficulty is that the histamine content in foodstuffs fluctuates greatly. The same meal can sometimes be well tolerated, sometimes not.

Tolerance Levels are Difficult to Estimate

With some histamine liberators it is very difficult to notice that they are not tolerated. It may happen that you can eat them for four consecutive days and be happy that you can tolerate them, and only on the fifth day do you slowly realize that you have been getting a little worse every day. There are not (only) the sudden or violent histamine attacks, but histamine liberators can subtly build up a completely different symptomatology depending on the individual predisposition. This is perhaps simply expressed by a feeling of inexplicable sadness, increased inflammation, sleep problems, hangover, muscle tension, back pain, rheumatism, ... The brain is not able to associate such symptoms with food eaten in the days before. This is especially the case with mast cell activation diseases, but is probably not so much a problem with DAO dysfunction.

Foodstuffs that do not contain histamine, but do contain large quantities of other biogenic amines cannot always be recognised as incompatible either. Only a few of the free biogenic amines have physiological effects similar to histamine (neurotransmitters, vasodilators) or have a liberator effect. The remaining amines do not directly trigger symptoms but can indirectly intensify the consequences of other histamine sources (e.g. when you eat something containing histamine as well). As competing substrates to histamine, they exert their full load on the degrading enzymes, so that histamine from other sources is temporarily only hardly degraded (broken down).

Slow Reduction in Sensitivity

It is often the case that certain foodstuffs at the beginning of the diet, with a still irritated digestive tract are at first not very well tolerated, but even a few weeks later are already better tolerated. So it is worthwhile, a few months later, re-testing foods which were initially marked as not tolerated.

Paying Attention to a Balanced Diet

In every food category there are both compatible and incompatible foods. Thus it is not necessary to completely eliminate one food category entirely, but to continue to have a balanced diet which includes a wide variety of foods from all categories (meat, fish, dairy, carbohydrates, vegetables, fruit, nuts, seeds) to ensure that your body is provided with all the nutrients that it needs. When changing your diet you should ensure that you do not restrict any of these food categories too extensive!

To be sure that your long-term diet is balanced, it can be useful to seek the help of a dietitian or food intolerance specialist. In particular, when other allergies or intolerances further reduce your dietary selection. The consultation with the dietitian will be paid by your health insurer if it is prescribed by a doctor (in Switzerland). The Allergiezentrum Schweiz (Swiss Allergy Centre) keeps a list of qualified dietitians HF/FH, who have completed advanced training courses in Food Allergies and Food Intolerances.

Supporting Measures

The elimination diet can be supported with various dietary supplements and medication, which allows a partial easing of the diet, or mabe even temporary interruptions on special occasions (eating out, travelling), without immediately suffering the consequences. Maybe now and then you can enjoy eating "sinfully" without being punished. Don't despair! During the 4-6 week trial stage, you should try to keep as much as possible to the diet without medication to be sure that it is the diet which is helping and not the medication.

On page Therapy > Medicaments you will find our SIGHI Medication Manual, which is about dietary supplements and medication as well as their uses.

Further Information

Additional information can be found on the page Therapy > Compatibility.

The page Therapy > Cooking Advice contains additional advice which could be essential for successful treatment!

You should also check the list of incompatible active ingredients. Do not discontinue prescribed medications without discussing this with your doctor first!

Guided Tour: Go to the page
Therapy > Compatibility

{Translated by Susan Fehr and Heinz Lamprecht}

References

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