This is a list of all the foods you should not eat while using Disulfiram and for two weeks following. I am going to break them down into separate categories with foods that cause Disulfiram interactions, foods that are high in copper, the high polyphenol foods and supplements that people have experienced issues with, and finish with the ingredients in cleaning and beauty products that you need to avoid.
I think it is important to mention that some people don't change their diet aside from alcohol and they seem to do okay. Every body is different and we all have a unique journey we are on so if you want to continue your normal routine and just eliminate foods as they bother you, that is one approach to take. I already felt like poo when I started this medication and just didn't want to risk anything making me feel even worse so I decided to make the whole lifestyle change.
When I first encountered all these food restrictions I was feeling pretty nervous. I was under the impression that if I slipped up and made a mistake then I would be projectile vomiting for eight hours. This is not the case so don't be too scared.
If you have a well educated Lyme Literate Medical Doctor then they will have you going the "low and slow" method of taking small doses and working your way up to taking it daily, and then increasing the dose. This means the medication will slowly be building up in your system. Because of this, the first month you may be able to get away with certain foods that may cause you issues further down the road.
My first mistake was drinking herbal tea with cinnamon as an ingredient and it made me incredibly nauseous. Once I felt like I was going to vomit all of a sudden, I realized it was from the tea and stopped drinking it. Within an hour I felt completely better. That was at week three - I had the same tea on week two with no side effect. I tell you this in hopes that it will reduce your fear of making a mistake. You have some time to experiment with keeping some of your favorite foods and eliminating them IF they cause an issue.
This is a medication that is effected and altered by grapefruit and grapefruit juice so do not consume that either. Disulfiram also alters the metabolism of caffeine which slows down the process by about 30%. Some people have reported headaches, jitters, rapid heart rate, etc. so caffeine should be cut out. Coffee and tea are both high in acetaldehyde so you really shouldn't even have decaf. I have had coffee on a couple occasions and noticed a slight headache after but I am someone that is not all that sensitive to caffeine. I can have a cup of coffee and a nap 15 minutes later!
HIGH ACETALDEHYDE FOODS
These are the foods you absolutely must cut out. Although I have heard some stories of people being able to tolerate vinegar, I am not going to test it out myself. I have listed the mg in parentheses for any foods that I know the exact concentration of acetaldehyde in milligrams per kilogram (mg/Kg). This can be helpful for knowing just how strong the interaction will be. I have been fine eating carrots, grapes, and oranges in small quantities as they have a lower level of acetaldehyde. If you want to test your boundaries with some of the lower numbers, do it with just a small quantity. Look out for headaches - for me that is the number one indicator that acetaldehyde is building up in my body.
Condiments (most have vinegar so check ALL labels)
Oriental Melon (14)
Asian Pear (3)
Green Apple (2)
Sour Cream (1-6)
Ice Cream Cone (2)
Wheat and Rye Bread (3)
Ground Coffee (20)
Instant Coffee (3-36)
Orange Soda (15)
Earl Grey Tea (10)
Orange Juice (6)
Apple Juice (6)
Iced Tea (4)
Carrot Juice (3)
Green Tea (2)
Green Tea Powder (2)
Lemon Flavoring (26)
Orange Flavoring (14)
Extracts and Artificial Flavorings
Brie and Camembert cheese - there may be other types of cheese as well.
Types of fermented foods that may be high in acetaldehyde include yogurt, vinegar, kombucha, fish products, fermented mushrooms, fermented soy products, pickled vegetables, cheeses, canned vegetables, and kimchi. Dates, dried fruits, jasmine rice, and basmati rice are all fermented in the drying process. I have seen many stories of people having bad interactions from eating dates so be careful there. Eating high amounts of fermented foods may cause damage to the digestive tract while on Disulfiram even if they don't give you a typical Disulfiram reaction.
Candida albicans is a type of naturally occurring yeast in our stomach. This yeast produces acetaldehyde when they metabolize sugars from our diet. When we eat sugar, the yeast ferments some of it, producing acetaldehyde. When we eat a lot of sugar in our diet, these yeast populations can grow out of control. This overgrowth, called candidiasis, means more production of acetaldehyde in the stomach, which can damage the stomach lining, kill healthy gut bacteria, and may increase the risk of stomach cancers.
Fruit digests quickly in the small intestine. It is best to eat any fruit on an empty stomach. If you eat very ripe fruit in combination with other foods, you risk it fermenting in your stomach and causing acetaldehyde to form. Over ripe fruit is not recommended as it has most likely already started the fermentation process.
HIGH COPPER FOODS
If you want to prevent neuropathy, it is important to use enteric capsules so the Disulfiram will digest in your intestines and not your stomach. This will prevent the copper and Disulfiram binding in your stomach and causing nerve damage. Because I went this route, I haven't been as strict with my copper intake and have not had any issues yet.
If you are not using enteric capsules, these are foods you will need to avoid. The goal while on Disulfiram is to keep your copper intake 1mg or less per day. Most regular diets have 2mg per day to give you an idea of what you are probably already consuming. You also need to make sure you are not cooking with copper utensils, pots or pans.
Organ meats including liver, heart, kidney, and brain
Shellfish including oysters, scallops, shrimp, lobster, clams, and crab
Soy protein meat substitutes
Nuts and seeds
Vegetable juice cocktail
Commercially dried fruits including raisins, dates, prunes
Dried beans including soy beans, lima beans, baked beans, garbanzo beans, pinto beans
Cereals with >0.2 mg of copper per serving (check label)
Fresh sweet potatoes
Instant breakfast beverages
Multi-vitamins with copper or minerals
POLYPHENOLS & SUPPLEMENTS
You should try to avoid Green Tea ( EGCG ) , Resveratrol, Japanese Knotweed and Quercetin supplements while you are on Disulfiram as these are very high in polyphenols and have caused problems for patients. Please speak to your doctor if you have been told to use these before stopping them.
I only read on one specific resource on Facebook that you should not have polyphenols while using this medication. Other than that I have not found any science behind this. Many people are assuming that any word that ends in the suffix -ol means it is an alcohol. But that is not the case with the word polyphenol. The name polyphenol derives from the fact that it is a chemical structure formed by attaching to an aromatic structure like in alcohols (hence the -ol suffix) but it is NOT an alcohol.
I feel like there is some misinformation spreading on this one because people haven't done their due diligence. I'm honestly not sure - I just can't find a single resource that states exactly why polyphenols are bad while using DSF. Every healthy food is full of polyphenols that are extremely beneficial to our health so I wouldn't cut any high polyphenol out unless you have a reaction to it.
BEAUTY AND CLEANING PRODUCTS
There are several ingredients you need to look out for aside from alcohol and vinegar. This is because alcohol comes in many different forms. Make sure you don't use anything with:
Propylene Glycol or other glycols
Tocopherol is a form of Vitamin E often used in beauty products as a preservative - it is a form of alcohol but I have used products with it and not had any reaction. Use with caution.
Propylene glycol is commonly found in many packaged foods, such as drink mixes, dressings, dried soups, cake mix, soft drinks, popcorn, food coloring, fast foods, bread and dairy products. Other names it is known by include: propanediol, dihydroxypropane, Methyl ethyl glycol, Trimethyl glycol, Propylene glycol mono, and diesterE1520 or 1520.
Unfortunately, if propylene glycol is used as a carrier or solvent for another additive, such as flavor or color instead of a direct ingredient, it may not be listed on the food label.
You also have to be very careful with some of your go-to foods and frozen foods. Make sure you are really reading the labels on everything even when you think it must be a safe choice. Vinegar is in everything from the obvious condiments, sauces, and salad dressings to the less obvious breads and tortillas. Extracts are commonly used for flavorings and propylene glycol can sneak in your diet a variety of ways.
I know most people are already dairy-free, gluten-free, and sugar-free because all three things help Lyme bacteria grow and flourish. Reading this list may feel like there is nothing left for you to eat, but I promise you still have options!
I am currently on week eight of my journey on Disulfiram and although life feels hard because I am physically much weaker right now, my brain is starting to function again. Blogging has been impossible for the past year - I'm lucky to manage one post a month yet today I have written three posts, and this week I also created an online course. This journey may be hard and taking a new medication that requires a huge lifestyle change can be overwhelming and scary but from what I am experiencing, there is hope.