Adapting to AGS Part 2: Mammal Ingredient Names

One of the more challenging elements of any food allergy is learning all of the terms for the processed version of the food to avoid.  Alpha-gal syndrome (AGS), a potentially life-threatening, delayed reaction food allergy to mammal products and sometimes carrageenan is especially challenging.  USA allergy labeling guidelines were created in 2004 before the discovery of the condition in 2009, and currently, don't handle the concept of a sugar-based allergy (all other dangerous food allergies are protein based) nor that mammal flesh could cause a serious reaction for thousands of people.  The discovery of AGS has saved countless lives that may have otherwise been lost to what was once thought to be unpredictable “idiopathic anaphylaxis” since it's discovery, but reading labels remains a large hurdle that every new patient faces.

Tolerance Levels

While many patients don't need to avoid more than pure chunks of mammal meat, others of lower tolerance find they must avoid even the most minute traces right from the get-go, and that means learning a lot about label reading.  Before panicking about removing all mammal sources, it is worthwhile to find one's own tolerance and sensitivity levels and focus on dealing with the minimal avoidance needed to prevent anaphylactic episodes first.  A tighter avoidance can always be pursued later once one gets a handle on the basics.  Many of the ingredients that may contain alpha-gal won't be an issue if you have a higher tolerance level, so it is worth identifying where you stand. The tighter avoidance are usually followed to help avoid smaller reactions and/or stress on the body, and some believe strict avoidance may aid in an eventual recovery from the condition, though this has yet to be scientifically tested.  Smaller reactions usually consist of things like itching, fatigue, joint pain and general feelings of unwellness in contrast to the more pronounced and potentially life-threatening anaphylaxis related symptoms like stabbing gut pains, digestive distress, hives, swelling, blood pressure crashes etc that need to be prevented as much as possible as soon as possible.  For more on the many presentations of AGS symptoms check out this article here.

It's Complicated

There are hundreds of ingredients used in products that are only sometimes derived from mammal products, and the consumer has no way of knowing which source was used without contacting the manufacturer. Often not even then can one get a straight answer when manufacturers buy the ingredient from suppliers who mix original sources.  This makes learning which foods to avoid with Alpha-Gal Syndrome especially difficult. "Natural Flavoring" is the most ambiguous and notorious of all the wishi washi ingredients in the USA, and most who are experienced with the allergy will tell newcomers to treat any questionable ingredient as though it were the mammal-derived version until proven otherwise.  It just isn't worth getting sick over if you're sensitive. In an upcoming article, we will go over some of the more complex and confusing commonly problematic ingredients in more detail.  If there is an ingredient that took you off guard, please tell us about it in the comments section. There are a number of symbols and sections on a label that can be scanned to help reduce label reading time and cut out most of the ingredients of concern quickly, and we will be covering them in an upcoming article, but having resources where one can look up individual ingredients is still necessary.

Learning Alpha-Gal Ingredients To Avoid

Turning to the internet for complete mammal-derived ingredient lists can prove frustrating.  The lists provided by well-meaning individuals and websites are incomplete and frequently have errors.  It is also not uncommon for vegan lists to simply mark ingredients as animal vs non-animal which is more extreme than necessary for someone with AGS.  Since these lists are put up by good samaritans, often with little regard for what country the data comes from(different countries frequently have different rules and ingredient origins) and are copied from each other without doing further review, some errors in these data comes as no surprise. During our investigations, we were not able to find any online sources that were 100% free from errors/controversy nor that could qualify as complete, but for all their problems, they can still provide a vital starting point for getting a handle on what to avoid.  Using a few of these lists to initially look up an ingredient, and then doing further research on it later is one option.  Another is to use multiple sources that clearly come from different original research sources such as a published book and an online list to see if they agree.  Below we list a number of substantial resources on ingredients and products along with their strengths and weaknesses which become less of an issue when you know to watch for in them.  If you find an ingredient you aren't sure about, support groups are a great place to ask for clarification.

Online and Printed Ingredient Data Resources

A Consumer's Dictionary of Food Additives By Ruth Winter Strengths:  Clear data, Extremely extensive(almost 600 pages long), Includes any non whole food ingredient regardless of origin, Explains where they got their data, Book is small enough to carry to store, Reasonable price
Weaknesses: Does not always indicate the source of the ingredient, Kindle form is not searchable(don't bother with this form), Available only as a book
Notes: Based in USA, Make sure to get the latest edition so it is as accurate as possible, Author also has a book on cosmetic ingredients, Book only
Alpha-Gal Ingredient Safety List Strengths:  Clear data, Indicates alpha-gal sources of ingredients specifically, Distinguishes between definitely vs possibly derived from alpha-gal containing source, Distinguishes between different risk categories/sources. Includes mammal specific meat products, Includes dairy products and lanolin etc, Includes carrageenan products, Lists "safe" ingredients with weird/similar names, Includes a lot of alternative ingredient names found on labels (synonyms), Searchable google spreadsheet, Dates time of last research, Fully explains ingredients, Free
Weaknesses: Incomplete, Does not explain where data was sourced, Google spreadsheet is not always easy to use
Notes: Based in the USA, Online only
Michael Bluejay: Guide to Animal-Derived Ingredients Strengths: Clear Data, Quick view summary, Pretty extensive, Distinguishes between definitely and possibly derived from animals, Includes meat products, Includes dairy products, Explains data sources, Free
Weaknesses: Does not indicate what animal ingredients come from, Does not list carrageenan products, Does not explain ingredients, Data comes from older sources
Notes: Based in North America, Online only
PETA's Non-Vegan Animal Ingredients List A-Z Strengths: Moderately extensive, Includes meat products, Includes dairy products and lanolin etc, Explains the ingredients, Includes a lot of alternative ingredient names found on labels (synonyms), Free
Weaknesses: Fails to distinguish between hypothetically could be derived from animals and actually is derived from animals (labels some ingredients that are only occasionally made from animals as just "made from animals"), Does not always indicate what animal ingredients come from, Does not list carrageenan products
Notes: PETA is known for changing the URL of their ingredient list a lot, so here is a link to veganbaking.net's mirror, Based in the USA, Online Only
Vegan Peace Ingredients Strengths: Decent length, Includes meat products, Includes dairy products and lanolin etc, Explains the ingredients, Includes some alternative ingredient names found on labels (synonyms), Has quick jump to the first letter of term, Includes Additive Number ID's from Europe, Free
Weaknesses: Fails to distinguish between hypothetically could be derived from animals and actually is derived from animals, Does not always indicate what animal ingredients come from, Does not list carrageenan products, USA and European data mixed and unclear which is which
Notes: Data taken from Europe and North America, Online only
Vegetarian Journal's Guide To Food Ingredients Strengths: Clear data, Pretty extensive, Distinguishes between definitely vs possibly derived from animals, Distinguishes between vegan and vegetarian, Includes meat products, Includes dairy products and lanolin etc, Lists vegan ingredients with weird/similar names, Explains the ingredients, Online list is sortable, Data was sourced by contacting industry experts directly, Free online, Cheap printed (booklet)
Weaknesses: Does not always indicate what animal ingredients come from, Does not list carrageenan products, Does not list ingredients by all alternative names found on labels (synonyms)
Notes: Based in the USA, Online version and a version in print is available, Data was sourced by contacting industry experts directly

Phone Apps

Unfortunately, phone apps are perhaps the worst resources we have found.  Vegan/allergy barcode scanners such as "Codecheck", "ipiit", "Is it Vegan?", "Open Food Facts" and others failed miserably when put to the test.  These apps listed vegan products as unknown and nonvegan products as vegan, and allergy scans were limited to milk protein and lactose if any mammal filters were offered at all.  "Is it vegan?" was especially terrible ignoring vitamin D3, uncertified sugar, milk warnings on labels and other trace sources and additives completely, while others simply said "I don't know" for almost everything.  It also takes quite a while to scan an item, making the entire process not worth the effort when the label can be read directly.  Many of these apps seek to identify vegan or allergen-free products by relying on crowdsourcing to get the data and this means an incredibly high rate of failure as people make mistakes and product ingredient lists change.  While the concept is nice, in practice it just doesn't work out well and ends up taking up more time instead of less.  Perhaps some day these apps will be handy, but they aren't ready yet for real world use when it comes to AGS. Another type of app is the purely informative type.  "Animal-Free", "Vegan Additives" and several going by the name of "Food Dictionary" list various ingredients and what they come from.  However, most are whole foods only and not ingredients found on ingredient labels.  "Animal-Free" is riddled with errors in its data, but does attempt to sort ingredients into vegan and non-vegan.  Unfortunately, it gets so many of them wrong and is so awkward to search through that it isn't worth using.  You're better off doing a web search in the phone's browser than using one of these when finding a new ingredient name.  The one exception we found was "Vegan Additives", which has a great numerical list explaining European additive codes for those within the EU, though it is best not to take the vegan vs animal tags at face value and better to read the descriptions.  Have you found an informative app that is reliable and works offline?  Please tell us about it in the comments section.

Final Thoughts

Even being armed with a reference for or knowledge of all potential mammal-derived ingredients doesn't prepare one for the amount of time and energy necessary when looking for a safe product. Often one ends up reading the label of 5 or 6 brands before finding one that works, if at all. This is incredibly frustrating, but thankfully there are some strategies that can help speed the process along quite a bit.

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