Frequently Asked Questions
A lot of people believe that the truth about G6PD Deficiency should be withheld from people. They think that you aren’t able to handle the truth. They think that as long as you don’t know babies are dying from ignorance at the hand of doctors, everything will be swell. I’m not one of those people. Personally, I’m tired of the horror stories about babies dying because the doctors didn’t know they had G6PDD, or worse, didn’t know what to do if they did. So the following are very candid and straight forward answers to some of the more common questions I have received over the past seven or eight years.
Feeding G6PD Deficient Babies (2)
We have never found a formula that is totally safe for G6PDD babies, although some are safer than others. The problem with formulas is that they all contain one or more of the following:
Iron – people with G6PDD usually have too much iron, not too little. Iron added to formula can be dangerous for those with G6PDD and it is on the avoid list. (See: The good and bad about Iron.)
Soy – either in the form of soy lecithin, soy oil, protein or some other product derived from soy, and is very high on the avoid list, as it is a legume.
Ascorbic acid – this man made chemical is now being called vitamin C, which it is not. Vitamin C is a complex of chemicals, not just ascorbic acid. It is on the avoid list for several reasons. (See: Ascorbic acid (Vitamin C))
Sugar – Many formulas have more sugar than is in breast milk so babies will prefer it over their mother’s milk. Most of the time it is added in several forms to keep it from being listed as one of the main ingredients. Because G6PDD people are prone to diabetes, acquiring a taste for sweets early in life is a hard habit to break. Refined carbohydrates like sugar should be used sparingly.
By far the best milk for a baby is breast milk. There are so many health (and monetary) benefits to breast feeding it just totally makes sense to make whatever lifestyle changes you need to make to breastfeed your baby for at least a year. Unfortunately, because of hormonal, or other situations beyond their control, some mothers cannot breast feed.
The pros and cons about home made formulas vs. commercial formulas is never ending, however, the only way a mother can know exactly what is going into her baby’s formula is to make it herself. If you wanted to save money AND make sure my baby had REAL food in his or her formula, I would definitely make it myself, no matter how much time it took. Before doing so, I would do my homework and learn about the many different types of homemade formulas, and how to insure that my baby was getting all the nutrients in the most natural and safe way possible.
Safer alternatives for breast milk:
Some babies can tolerate fresh cow or goat milk. There is a growing number of moms who are making their own home-made formula from fresh milk. There are recipes Online or in the member’s section of http://g6pddeficiency. org/wp/. Choose a recipe that has been developed by a certified nutritionist and does not have things on the avoid list in it.
Almond milk. You can make your own cheaper than you can buy it and there are some good recipes Online.
Evaporated milk (NOT CONDENSED MILK) is another alternative. Just make sure you dilute it by half by adding an equal amount of sterile water to the milk.
Goat’s milk also comes in a can in the U.S. either as powdered milk or evaporated milk (which would need to be diluted as per evaporated milk).
Multi-vitamins all contain things on the avoid list, includng iron, ascorbic acid, oils obtained by using hexane (a dangerous petrochemical that causes nerve damage as well as hemolysis) and others. Many man made vitamins are derived from soy or some other substance on the avoid lists. Vitamins are best obtained from good healthy food. Breast feeding mothers should strive to eat good balanced meals so that their milk will have all the vitamins the baby needs. There are only two vitamins that could be helpful for babies. Especially if the baby was jaundiced. Thee are two forms of NAC pictured below. Neither should be given before the baby is one year old.The first one is much easier to administer as you don’t have to remove it from the capsule. But either are acceptable. Put 100 mg of NAC in something like applesauce and feed it to a one year old baby. Add 100 mg of NAC for each year thereafter until the max dose of 600 mg is reached.
For the vitamin b complex, follow the directions on the label.
For other supplement suggestions, see Diet Suggestions Page
Caring For Sick G6PD Deficient People (3)
All over the counter medicines such as paracetamol, aspirin, Tylenol, etc., are all on the avoid list. Remember, a fever is not necessarily a bad thing. It helps the body fight infections so, in most instances, it should be left to do its work at killing all those bad bugs. However, if a child cannot rest due to a fever, a tepid bath or sponge bath with tepid water is recommended.
In any case, if the cause of the fever is unknown, the child is under 4 months old or exhibiting other symptoms (dehydration, seizures, etc.), he/she should be taken to see a doctor or urgent care facility.
See Fever Myths.
Pineapple juice with a little lemon juice will help with coughs and a sore throat. (Both ingredients help to fight bacteria.) Ginger and oregano added to the mix will increase the anti-oxidant properties. If the child is over one year old, a little honey can also be added, as it will also help to fight bacteria. (If you are adding honey, it should be locally produced raw honey.)
- 1 cup of fresh pineapple juice – ideally home squeezed
- Some fresh lemon juice — roughly a quarter of a cup
- A little bit of ginger – around 3 inches long
- A little honey (if at least one year old)
Add all the ingredients to your juicer or blender! Give a teaspoon full to your baby or drink a little as needed.
Another treatment for cough is NAC (N-Acetyl Cysteine) sold as a supplement. It is also sold as Fluimucil, but it has other ingredients in it that are not good for us. NAC helps to thin mucus and make it easier to eliminate. Look Online or ask your pharmacist.
Saline solution nose spray or drops. It is also an antibiotic and kills germs in the nose, so it helps fight sinus infections. It is non-toxic and can be given as often as needed. Just put a drop or two into each nostril. If the child is old enough or for adults a salt water rinse works wonders.
About G6PD Deficiency (5)
No. G6PDD is a life long condition. G6PDD symptoms can be worse at certain times in a person’s life. For example newborns, adolescents and older people are the most prone to the negative affects of triggers. However people of any age can easily succumb to extra stress, colds, flu, or an infection, as these are the most common cause of acute hemolysis. That doesn’t mean that they aren’t affected at all during other times. Because the G6PDD symptoms often become less severe as a child grows, does not mean that they no longer have to avoid the triggers. I cannot stress enough that despite popular opinion, everyone with G6PDD will be healthier in the long run if they avoid triggers throughout their lives. I am living proof that chronic, undetectable lower levels of hemolysis (loss of red blood cells) is very hard to detect and can lead to much more serious medical problems later in life
A person can be tested for G6PDD at any time in life. A cautionary note: after a hemolytic event (loss of red blood cells) test results can return a false negative. This is due to the fact that younger red blood cells have more G6PD than older ones and so the older RBC’s die first. This leaves the younger blood cells (which have more G6PD) to be tested for G6PDD. A person should avoid triggers for several weeks and wait for blood levels to return to normal before being tested for G6PDD.
Females are the hardest to test and most of the time test negative even if they have G6PDD. The most accurate test, especially for women, is the G6PD Quantitative test. But I’ve seen it fail at times. Read Women with G6PD Deficiency. The one test that never fails is having a boy with G6PDD. The mother has G6PDD…guaranteed because boys can only get it from their mother.
Test results can vary greatly depending on hemolysis level. Fewer older red blood cells will skew the results toward less severe G6PDD. This means that for a few weeks after a hemolytic event, the test results will not be correct and can even be negative. (Read: http://g6pddeficiency.org/wp/faq/can-person-tested-g6pdd-birth/) A less severe case of G6PDD can actually be more harmful than a severe case because people with less severe G6PDD tend to think that they don’t have to be so concerned about avoiding triggers and ignore these diet suggestions. This leads to much worse health problems later in life and can even cause a hemolytic crises. Knowing you have G6PDD and taking appropriate action is the best way to stay healthy and avoid G6PDD complications.
When our bodies are working extra hard to replace red blood cells at a higher than normal rate, our heart, liver, renal, spleen and bone marrow are over worked. Nutrients are depleted. The weakening of these organs can cause a myriad of health problems as our bodies age, even if you only experience low-levels of hemolysis. If you have G6PDD, you have a higher than normal chance of getting diabetes, liver disease, heart problems, etc. It is not uncommon for people with G6PDD to be misdiagnosed with a disease in which the treatment could be life threatening. Once these diseases start manifesting themselves, it is rare that the condition can be reversed.
You should feel like the luckiest person on earth that you know the truth and can avoid these problems and live a life that is much healthier than many others who don’t have, or don’t know, they have G6PDD. Many people have died because their doctors didn’t know a patient had G6PD deficiency. These people were given treatments which caused acute hemolysis. By the time the doctors discovered what was wrong, it was too late. Being proactive and sharing a positive attitude with our families will make a huge difference in how we take care of ourselves.
G6PD deficiency (G6PDD) is a genetic disorder and cannot be acquired any other way except through the person’s parents. A boy can only inherit G6PDD from his mother and a girl can inherit it from either parent. Women are very hard to test for G6PDD and usually test negative, even when they have it. The best indication that a woman has G6PDD, is if she has a son who is tests positive for G6PDD.
For more information see Women with G6PD Deficiency.
Getting and Staying Healthy (2)
This is a common question from people just learning about G6PDD. Many feel overwhelmed looking at the avoid list and think there is nothing left to eat. Nothing could be further from the truth. My family doesn’t like to eat out because they think my cooking is better. You should actually be happy that you have to avoid triggers because you and your family will be much healthier and will eat much better. All the kids in the neighborhood will want to eat at your house. So, here are some simple rules to follow.
1. Stay away from prepared foods. Almost all prepared foods have one or more things in them that are on the avoid list. It is amazing how unhealthy prepared foods are. They have preservatives in them so they won’t spoil. Soy and soy products are almost always added to them because they are cheap. Prepared foods are made from the cheapest ingredients the company can find, not the ingredients that are best for us.
2. Learn to read the ingredients on the label. You will be shocked at the things put into prepared foods. I read the ingredients on a package of cinnamon rolls recently. There were over 50 ingredients in them. If I make them, there are only flour, water or milk, yeast, egg, cinnamon, butter and sugar. That’s seven ingredients. What could they have possibly put in them besides these seven ingredients? The answer will surprise you. Go check for yourself. There are a lot of other surprises lurking in the ingredient list of prepared foods.
3. Find recipes that are simple to make from scratch. People think that it takes hours to prepare a meal from scratch. Wrong. Most of the meals I fix are prepared in 30 to 45 minutes. That is less time than it takes to order pizza. And if you’re smart, you will always fix more than you need and save the leftovers for lunch or another meal. You can even freeze the leftovers and make your own TV dinners for the times when cooking is inconvenient.
4. Learn to substitute other things for foods on the avoid list. Soy sauce substitute is easy to make. Almond or cashew butter replaces peanut butter. Etc.
5. Learn how to make fresh foods stay fresh. One part vinegar to 10 parts water is a great preservative. Wash your greens in it and they will stay fresh much longer.
6. Learn how to disguise veggies and other “less favorite” health foods in your favorite dishes. I have learned that I can add things like chopped up spinach and carrots in spaghetti sauce. I can add a little ground liver to meat loaf or other hamburger dishes. You can make your own juice from fruit and veggies. (You’d be surprised what you can hide in juice!)
When you stop thinking about what you can’t eat and start thinking about the wonderful things you can eat, your life will change. You will become very creative and your family will love your food and will eat so much better and be sick much less. My mother was great cook who fixed most everything from scratch. Sadly, I didn’t learn to cook until after she died. I realized that not only was I not eating as healthy, but the only way I could enjoy my favorite dishes was to learn to cook them myself. Between my G6PD Cookbook (Staying Healthy with G6PD Deficiency) and the member’s section on this site, there are hundreds of wonderful recipes you can fix for your family. They are G6PDD safe, include lots of foods that will help your body build red blood cells, and will give you ideas to make your favorite foods for your family and friends.
Vitamins are best obtained from good healthy food. This being said, there are a few vitamins that are difficult to keep at sufficient levels due to the demands of blood production, so doctors often recommend supplements for people who are low in these vitamins. The following supplements should be okay, but, always read the ingredients on the label to make sure they are still okay. If capsules have things on my avoid list in them, take them apart and sprinkle the contents on food and discard the capsule.
NAC (N-Acetyl-Cysteine) – This is a great supplement for those with G6PD deficiency. It helps keep the liver healthy and is a precursor to glutathione (a substance G6PD deficient people have difficulty producing and is essential for red blood cell health). Taking glutathione doesn’t seem to help the glutathione levels in our red blood cells, but NAC does.
Vitamin B complex – the B vitamins are essential to producing red blood cells. Especially B6, B12 and Folic Acid. I recommend finding a good all natural B complex vitamin that has nothing else added (like vitamin C, iron or soy products). Take them according to the manufacturer’s recommandations.
We recommend that you read all labels and avoid taking any multi-vitamin supplement. Many man made vitamins are derived from soy or some other substance on the avoid lists. Most all of these formula include iron and ascorbic acid (see Ascorbic Acid (Vitamin C) and The Good and Bad about Iron) Sometimes the oils are obtained by using hexane (a dangerous petrochemical that causes nerve damage as well as hemolysis).
Ascorbic acid is included on most contraindicated lists for G6PDD, including Webmed.com. I actually did a search “ascorbic acid contraindicated g6pd” and there were over 100,000 websites that commented about the risks associated with ascorbic acid..
Ascorbic acid is a man-made chemical. At very high doses ascorbic acid actually becomes an oxidant, which destroys cells and that is why it is believed to be an effective natural treatment to eradicate cancer cells. See Why are iron supplements on the avoid list?
Ascorbic acid has been proven to increase the absorption of iron, which may help those who are low in iron, but increased iron absorption can be dangerous for people with G6PDD (see Why are iron supplements on the avoid list? and The Dangers of Iron Overload in G6PD Deficient People).
Ascorbic acid is in many processed foods, as it makes food look fresher than they really are. Vitamin C in the form of citric acid is all your body needs. These are all good reason to eat lots of fresh fruits and veggies.
You will lower your food bill and your health risks by avoiding processed foods and instead, making home-made meals from ingredients you know are healthy. Our members section has hundreds of G6PDD safe recipes for food and natural remedies. Check it out.
Iron is often prescribed by doctors to counteract the loss of iron caused by anemia caused by bleeding or a poor diet. However, people with G6PDD often have too much iron in their blood due to varying levels of chronic hemolytic anemia, meaning their red blood cells actually break down at a faster rate than normal. When a red blood cell is destroyed, the iron (which is part of hemoglobin) is released into the blood stream. Too much iron is dangerous and can be deadly, so we recommend that G6PDD patients make sure their doctor orders a blood test to make sure they are actually iron deficient before taking iron supplements of any kind.
Read this article from the Univeristy of Utah website: http://healthcare.utah.edu/healthlibrary/library/herbs/all/doc.php?type=19&id=iron, Feb. 5, 2015. A quote from the article.
Substances to avoid (3)
No. Tonic water is a different product which contains quinine. It used in some alcoholic drinks as a flavoring and is very harmful to those with G6PDD. However, the sugar and caffeine in soda pop is totally not good for anyone as it lowers your body’s resistance to colds and flu (which can cause hemolysis for people with G6PDD) and also leads to diabetes and obesity.
Chocolate is not on the avoid list, but many of the things added to chocolate are… like peanuts, soy lecithin, and artificial blue food color. Just read your labels. The better brands of chocolate are most likely the safest to eat.
No, soy is a legume. Soy in any form is on the avoid list for people with G6PDD. The majority of processed foods has some sort of soy in them. It’s cheap and it enhances the texture and stability of the foods that are designed to sit on the shelf for long periods of time. There is also strong evidence that most of the soy in processed foods is grown using GMO seeds as well as pesticides, as it saves the manufacturer money and makes the product more affordable for the consumer. Avoiding soy is just another reason to make your own meals from scratch. You will save money and feel much healthier, even if you are not g6pd deficient.
For additional information about soy, see this article.