As some of you already know, I have CCHS and celiac disease. Most people are familiar with celiac, but CCHS (Congenital Central Hypoventilation Syndrome) is rare and not well known. It basically means my brain does not tell my lungs to breathe and I am dependent on mechanical ventilation. I have a tracheostomy and, like many people with CCHS, I also have a feeding tube (a J-tube in my case). Fortunately, I only need formula occasionally now, usually after a surgery or when I get nauseous from taking antibiotics for an infection.
I hadn’t given formula much thought since going vegan in February 2016. I had needed it after surgery twice, but assumed that the elemental formula I was prescribed was vegan. Then, I got a small abscess in my trachea a few months ago, and had to take antibiotics for two weeks. I couldn’t eat due to the nausea they caused and I needed formula. I had learned a lot more about hidden animal ingredients since the last time I needed formula, so I did some research and found out that one of the ingredients in my previous formula was derived from feathers! Fortunately, I found Kate Farms peptide formula. It is fully vegan, worked great, and I was able to get the nutrition I needed to heal.
There are all sorts of medical reasons that someone might need supplemental or full nutritional support from formula. My research, however, showed that there are not a lot of formula options for vegans or for those with dairy allergies, so I thought others might also be interested in what I learned.
First, there are three basic types of formula:
- Standard with intact proteins
- Peptide-based with partially broken down proteins (as peptide chains)
- Elemental with the protein provided as amino acids
Second, there is only one fully vegan formula manufacturer in the United States. Kate Farms is a great company and everyone I spoke with was kind and helpful! They make two standard and one peptide-based formula. These are suitable for tube feeding or oral supplementation for adults and children over 12 months old, and are covered by insurance when prescribed by your doctor. They are also free of gluten and the top-8 food allergens, and are made in a dedicated facility.
Kate Farms also makes a basic formula in three flavors that are only for oral supplementation and are not usually covered by insurance.
I mentioned to Kate Farms that I was going to write this post, so they sent me a sample of the three Komplete flavors so I could comment on what they taste like. My mom and I both thought they were pretty good, and not too thick or too sweet. We liked the coffee flavor best and the coffee and chocolate mixed was our second choice. The vanilla and chocolate by themselves were fairly mild in flavor. All three were much better than the Ensure I had used years ago before I was vegan.
I highly recommend Kate Farms formulas and I will use their peptide formula from now on when I need tube feeding. There are three circumstances where you would need an alternative, however.
- You need formula for an infant under 12 months old. In that case, I recommend reading this article on vegan infant formulas. (I would choose Alfamino over Neocate, though, and you will see why below.)
- You are allergic to pea protein or another ingredient in the Kate Farms formulas.
- You need an elemental formula.
In any of those situations, there are no fully vegan options. All of the available infant and elemental formulas contain vitamin D3, which is derived from fish oil or sheep’s wool. If you have no other way to get fed, however, you are still vegan even if you use one of those formulas. It is not practical to starve to death because there are no fully vegan formula options for your medical situation:
If you are allergic to peas or pea protein, the only (mostly) vegan options are either infant or toddler soy formulas or elemental formulas. (See the article I linked to above for info on infant formulas.) The soy-based formulas for children and adults all have dairy protein added to them, except for Diabetisource AC and it contains peas and fish oil!
There are three elemental formula manufacturers and a variety of choices, but I only recommend Nestle’s elemental formulas.
Nutricia makes Neocate infant and pediatric elemental formulas, but one of their amino acids (tyrosine) is derived from feathers.
Abbot makes Elecare infant and pediatric elemental formulas, but cannot tell me if their amino acids are derived from any animal product. They are supposed to be looking into it, but I called four times in six weeks and they still don’t have an answer.
Nestle has confirmed that the only non-vegan ingredient in all of the following formulas is the vitamin D3. Their customer support people were very nice and they have dietitians readily available to answer any questions. They make two pediatric elemental formulas, Vivonex and Alfamino.
The Alfamino is hypoallergenic and also available in an infant formula.
Nestle has several versions of Vivonex for teens and adults, and also a very low-fat formula called Tolerex for those with severe fat malabsorption. I would recommend speaking with one of their dietitians to determine which one is best for a specific situation.
Finally, there is one other company worth mentioning. Functional Formularies makes organic, whole foods plant-based formulas for teens and adults (Liquid Hope) and children (Nourish). Unfortunately, they use vitamin D3 and are not fully vegan. They contain peas, so they won’t work for those allergic to pea protein, so I don’t see a reason to choose them over the fully vegan Kate Farms formulas. Also, they are made in a facility that uses wheat, so they are not suitable for those who have celiac or a wheat allergy.
There is also the option of using a blenderized diet made with whole plant foods. Basically, this involves blending up real food and feeding it through a feeding tube. This makes a lot of sense, since you then have complete control over what goes into the blend, and you get all the benefits of real food. I don’t know a lot about how to do it, but found a wonderful resource if you want to learn more! Crunchy Tubie Mama has a great blog post on starting the blenderized diet and you can see her son’s story in this video:
I hope this post helps you if you or a loved one needs a formula for tube feeding or oral supplementation. I am so grateful to have the Kate Farms peptide formula sitting on a shelf in my medical supply closet. I know that it’s there anytime I can’t eat, and that I will still be able to get the nutrition I need without compromising my values.