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A Guide to Diet & Porphyria

What if I am Diabetic?
Being diabetic does not mean that you cannot eat carbohydrates. It does mean, however, that you need to monitor your blood sugar levels throughout the day to ensure that they are not exceeding the norm suggested by your physician. It is also necessary to monitor and prevent your blood sugar levels from consistently getting low (especially if you are on insulin); not only will this likely cause hypoglycemia reactions, but it may bring symptoms of a porphyric attack.

Since the diabetic diet is similar to Canada's Food Guide to Healthy Eating, the same suggestions for diet apply to diabetics. Be prepared for sick days, by discussing in advance with your dietitian how you will adapt your meal plan.

How Often Do I Have to Eat?
Eat regularly if possible, having 3 meals and 3 snacks throughout the day. Eating every 2-3 hours, will not only give your body a constant energy source, it will minimize the likelihood of the over-production of porphyrins. If concerned about weight gain . don't worry. Eating regularly and properly will actually lead to a healthy weight. However, it is important that foods are eaten in amount and serving per day as recommended in Canada's Food Guide to Healthy Eating.

Sometimes for medical tests or surgery, you may be instructed to not eat or drink anything for several hours. Short-term fasting should not cause porphyric symptoms to occur. If you are diabetic, discuss details of fasting with your physician and dietitian. In either case, try to have your medical test or surgery scheduled as early in the morning as possible, so that you do not have to fast longer than necessary. Prior to the fasting, ensure that your last snack of the evening contains complex carbohydrates and fiber so that it will provide a longer lasting energy source.

What if I Need to LOSE Weight?
Do not fast. Prolonged fasting can provoke some types of porphyric attacks by stimulating the production of porphyrins. Furthermore, it is not a permanent way to lose weight. True weight/fat loss comes with eating a healthy, balanced diet; exercising regularly; and cutting down on "extra" calories. Minimize snacking on things such as potato chips, cookies, cakes, donuts, pop, and chocolate, and replace with fresh fruit and vegetables. Also, reduce additional cheese, butter, margarine, salad dressings, gravy and processed meats.

Follow Canada's Food Guide to Healthy Eating. If you are already following the Guide, decrease your servings in one to two food groups, not going below the minimums stated.

Exercise is another key component for well-being and keeping weight at a healthy level. Doing anything that gets you moving and your heart rate up will help!

Another tip for getting to a healthy weight is not to frequently rely on the scale. Although a scale gives you a number indicating weight, it does not separate out what portion is from fluid, fat or muscle. Judge your progress by how you feel and how your clothes fit. As you exercise more, you may actually gain weight...but in the form of muscle, and muscle weighs more than fat. In addition, muscle burns more calories. So, the more muscle you have, the more calories your body burns. The goal is to lose weight slowly; no more that 1-2 pounds per week.

Ideally, consult a dietitian so that your progress can safely be monitored.

What if I Need to GAIN Weight?
Gaining lost weight may be an issue if frequent attacks have left you unable to eat very much. The first step is to try to get in some form of nutrition, especially as carbohydrates. This will help minimize the length and reoccurrence of acute attacks, as well as any further weight loss. Once able to eat more food, sources of protein and fat will also be needed in addition to carbohydrates. This will make up a more balanced diet, giving your body some of the major nutrients it needs to help prevent muscle loss and get back on track.

Sometimes, however, it is difficult to eat. Liquid meal replacements may be a food option. Products such as Ensure, Ensure Plus, and Ensure with Fiber (Ross Products, Abbott Laboratories Ltd.) can very useful. These products will give you all the vitamins and minerals that your body needs in just one liter per day (equivalent to about four, 235mL cans). Another product, which is a nutritional supplement, is Ensure Fruitango. It has a lighter, tangier flavor and meets all of your vitamin and mineral needs in about six to seven, 235mL tetrapaks. To supplement regular meals, take one or more servings of these products per day, depending on how much weight gain is needed. If you are not able to eat very much (i.e.: less than two meals per day), then drink at least 3-4 cans per day to obtain all of your vitamins and minerals. The Ensure products are the only meal replacements that are complete. This means that if only able to consume a liquid meal replacement, deficiencies will not occur with any vitamin or mineral (when 1 liter per day is taken; 1.5 liters for Ensure Fruitango). In addition, the Ensure line of products are lactose-free and gluten-free, as well as being Kosher.

For diabetics, the product Glucerna (Ross Products, Abbott Laboratories Ltd.) may be used. A dietitian can assist you in working this into your meal plan.

How many cans of supplements need to be taken in a day if you are eating properly, but still need to gain weight? To gain one pound in one week, you would have to consume an extra 3500 calories per day. This means, you would need approximately:

Ensure (regular) - 2 cans/day
Ensure Fruitango - 2 - 3 tetrapaks/day
Ensure with Fiber - 2 cans/day
Ensure Plus - 1 - 2 cans/day
Glucerna (diabetics) - 2 cans/day

If relying solely on Ensure as your nutrition source, the above amounts would be in addition to the 4-5 cans that you already taking. For constipation, try Ensure with Fiber, and drink plenty of water.

What Should I Do when Nausea, Vomiting and/or Diarrhea Occurs?
There's not doubt that porphyric attacks can take a lot out of you. Nausea, vomiting, stomach cramps... all can lead to a poor appetite. Unfortunately, if you don't eat, the attack can become worse, and last a lot longer. If only a little of any one given food can be taken, make it count and have foods that are higher in carbohydrate such as; starchy foods (i.e.: toast, potato, rice), ginger ale (not diet), and fruit juice.

For vomiting and/or diarrhea, it is important and necessary to replace the electrolytes (sodium and potassium), and fluid that have been lost. Often, low sodium (salt) levels in your body can contribute to some of the symptoms of a porphyric attack. To help replace these minerals, try an "electrolyte replacement" such as Pedialyte Freezer Pops (Ross Products, Abbott Laboratories Ltd.). Although these lightly flavored pops were intended for children, they work well at any age. Pedialyte Freezer Pops can be taken frozen or liquid. A number of people find that light-tasting, frozen items are easier to tolerate when they are nauseated. Since the pops do not contain much nutrition (other than a small amount of carbohydrate, salt and potassium), you will also need to take in some other foods. Some may find that Gatorade (Quaker Oats Company) is another beneficial beverage to take, as it, too, contains salt, potassium and carbohydrate. Also, dry, bland food, such as soda crackers or toast, may help the nausea and provide your body with the carbohydrate it needs. However, if eating regular foods becomes progressively difficult, follow the suggestions in "What if I Need to GAIN Weight?".

Electrolyte replacement beverages are for short-term therapy, so if nausea, vomiting or diarrhea continue for more than 48 hours, go to your doctor immediately.

What Foods Will Help With Constipation?
Foods high in fiber will help minimize constipation, as well as help prolong the carbohydrate (sugar) levels in your body. Fiber helps slow down the absorption of carbohydrate, thereby sustaining you with a carbohydrate source longer.

Foods high in fiber are: fresh fruits, vegetables, whole grains, bran and oat cereals. In order for fiber to be effective, drink plenty of water during the day. We've all heard the adage "drink 8 glasses a day"; but as a start drink what you can.

Regular activity or exercise is also important and may be beneficial in reducing constipation.

If the constipation continues, despite trying these suggestions, speak with your doctor.

What Kinds of Foods or Beverages Do I Have to Avoid?
Luckily there aren't many items that have to be avoided, with the exception of ALCOHOL. Alcohol can cause a porphyric attack by stimulating the production of porphyrins in the liver.

The natural chemicals in char-broiled meats also stimulate porphyrin production, although they have not definitely been linked to attacks of porphyria. However, since there may be a possibility that these chemicals might contribute to an attack, monitor your body's response if consuming meats cooked in this manner.

Be sure that all fresh fruits and vegetables are washed well to minimize any chemical residues that may be present. If you have a severe sensitivity to environmental chemicals, then peeling the fruit or vegetable may be necessary.

Lastly, if you smoke, quit. Aside from potentially increasing porphyric symptoms, it poses other health risks.

Can I Take Vitamin and Herbal Supplements?
Following a healthy diet with a variety of food is the best recommendation. Some vitamins, mineral and herbs may accumulate in your body, and could cause problems with porphyria. In porphyria cutanea tarda, for example, iron supplements may actually increase symptoms.

At times, certain additional vitamins and minerals may be helpful. Those with erythopoietic porphyria may become deficient in iron, and may need to follow a diet high in iron; an iron supplement may not be necessary, though. Those with porphyria cutanea tarda may benefit from beta-carotene (a type of vitamin A) supplementation, which may make skin less sensitive to sunlight. Also, if sunlight must be avoided, there may be need for additional vitamin D in the diet. Other situations may require a general need for vitamin and mineral supplementation, such as during pregnancy.

Supplementation should ONLY come under the advice and guidance of your physician. Remember, vitamin and herbal supplements can act like drugs, especially if they are taken in excess. In addition, they may negatively interact with any medication that you are taking.

Furthermore, vitamin and herbal supplements are an unregulated industry in Canada. Therefore, for many products we do not have detailed information on the production process, origin of the herb, or pesticide residues that may be present in some preparations. Since some porphyrics may have sensitivities to environmental chemicals and pesticides, it would be best to avoid herbal preparations, or use only with extreme caution.

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