Houston, We Have a Labeling Problem

Alpha-gal patients are being told to avoid mammalian-derived ingredients. But what happens when the label can't tell them where an ingredient came from?

Pick up a packaged food and read the label. Every ingredient may be listed exactly as required, yet for someone living with Alpha-gal Syndrome, an important question can remain unanswered: where did those ingredients come from?

For some ingredients, knowing the name is not necessarily the same as knowing the source. That distinction can turn an ordinary trip to the grocery store into an investigation. Was an ingredient plant-derived, synthetic or mammalian-derived? Can the manufacturer confirm that? Can its supplier?

Technology has stepped into that information gap. Patients describe using ingredient databases, apps, online communities and even artificial intelligence to help determine whether products may be appropriate for them. But those tools are only as reliable as the information available to them. One recently diagnosed respondent described relying on an AI assistant to help identify products, while acknowledging an important limitation:

“It has made mistakes before though.”

If the underlying sourcing information isn't available, an app cannot create it. Sometimes finding the answer still requires a phone call. Sometimes it requires several. And sometimes, even after asking the company selling the finished product, the answer remains unclear.

Now imagine doing the same thing with a medication you need.

This is where avoiding mammalian-derived ingredients stops being a simple lesson in reading labels and becomes something much larger. Our latest patient-reported data and comments repeatedly describe people trying to navigate medications, supplements, processed foods and medical care when the information they need may not be apparent from the product in front of them.

The Ingredient Is Listed. The Source Isn't.

People diagnosed with Alpha-gal are often advised to avoid exposures that trigger their individual reactions. For some, avoidance extends beyond mammalian meat to dairy, gelatin or other mammalian-derived ingredients found in foods, medications and other products.

Identifying beef or pork is relatively straightforward. Determining the source of an unfamiliar ingredient can be considerably more complicated, particularly when the ingredient itself does not tell the consumer where it originated.

Modern manufacturing adds another layer. The company whose name appears on the package may purchase ingredients from suppliers, who in turn obtain or manufacture components elsewhere. Sources, suppliers and formulations can change. By the time a patient asks where a particular ingredient originated, the answer may exist several steps farther up the supply chain.

The patient may have read the label perfectly. The label simply may not contain the answer.

Now Try Doing This With Medicine

The stakes become considerably different when the product isn't food but a medication.

Gelatin is a good example of how easily a mammalian ingredient can hide in plain sight. Gelatin is produced from animal collagen and is commonly sourced from pigs and cattle. Yet many consumers may recognize “gelatin” only as an ingredient name without ever having had a reason to think about where it comes from. For someone newly diagnosed with Alpha-gal, learning that a familiar capsule or medication ingredient can be mammalian-derived may come as a surprise.

That makes one finding in our latest analysis particularly important. Among 2,333 respondents who answered whether medications containing gelatin had ever triggered a reaction, 67.3% reported that they had.

The comments reveal another part of the problem. Patients are struggling not only with reactions they associate with medications, but with determining what they can take in the first place.

“I feel like I'm on my own to figure out what medications, food, and products I can use safely.”

Another respondent described trying to find mammal-free medications as “a nightmare,” specifically because of the difficulty obtaining information from manufacturers. Others describe contacting manufacturers before taking new medications, asking pharmacists to investigate ingredients or having to begin the process again when a pharmacy changes manufacturers.

One respondent summarized that problem in a few words:

“Pharmacy changes manufacturers of meds and back to square one with problems nobody verifies”

A patient may spend considerable time identifying a medication they tolerate, only for the manufacturer or formulation supplied by the pharmacy to change. The prescription name may remain the same while inactive ingredients or their sourcing may not.

Gelatin may actually be one of the easier ingredients to identify once a patient learns what it is. The greater challenge begins when the ingredient name alone cannot tell the patient whether a mammalian source was involved.

Who Is Supposed to Know?

It would be unreasonable to expect every physician to memorize the source of every inactive ingredient in every medication they prescribe. Pharmacists may have considerably more information about formulations and inactive ingredients, but they cannot provide sourcing information that isn't available to them.

Expecting the patient to know creates an even more obvious problem. The average person cannot reasonably memorize every ingredient that could potentially have a mammalian source, understand pharmaceutical excipients and food-manufacturing processes, and then determine the origin of each ingredient in a prescription, supplement or processed food.

Even if they could memorize every ingredient name, knowing the name and knowing the source can be two different things.

One respondent captured the frustration directly:

“A diagnosis of AGS is not enough, there needs to be an info system in place so people know of all the products mammal is in.”

That respondent described continuing to feel sick after diagnosis despite avoiding mammalian meat. During a later hospitalization, two staff members who themselves had AGS helped identify foods, products and medications the respondent had continued using without realizing they could contain mammalian-derived ingredients.

The experience raises a practical issue that extends far beyond one patient. Avoidance only works when the thing someone is supposed to avoid can actually be identified.

When Avoidance Becomes an Investigation

Receiving an Alpha-gal diagnosis can come with an extraordinary amount of homework. Patients may find themselves learning unfamiliar ingredient names, checking medications and supplements, asking about capsules, speaking with pharmacists and contacting manufacturers, all while trying to determine which exposures actually matter for their individual sensitivity.

The variability among patients makes accurate information more important, not less. Some respondents report tolerating things that others avoid. Some report dairy reactions while others do not. Some describe medication reactions while others may tolerate the same types of products without difficulty.

For that reason, an “Alpha-gal safe” label may not even be the right solution. A manufacturer cannot necessarily determine what will be appropriate for every individual with AGS, and patients should not be given a false guarantee of safety. What manufacturers can provide is information.

There is an important difference between asking a company to declare a product safe for everyone with Alpha-gal and asking it to disclose whether an ingredient is mammalian-derived. With reliable sourcing information, patients and their healthcare professionals can make decisions appropriate to the individual rather than trying to guess what an ingredient name means.

We Already Understand Why Labeling Matters

The United States has addressed versions of this problem before. Consumers with celiac disease and gluten-related dietary restrictions can look for “gluten-free” claims that operate within an established federal definition. Major food allergens are also subject to specific federal labeling requirements that provide consumers with medically important information.

Those systems are not identical to Alpha-gal, nor do they provide a perfect regulatory blueprint for mammalian-source disclosure. They demonstrate an important principle: when information about a product can have meaningful health consequences, making that information understandable and accessible to consumers has value.

One respondent put the request in much simpler terms:

“Manufactures need to print on their packages, if something contains mammal products, or byproducts. We don't care about their proprietary formula, we just want to be safe, and not have to use a Dictionary to understand the ingredient list.”

The wording may be imperfect, but the request is remarkably clear. Patients are not necessarily asking manufacturers to disclose proprietary formulas or decide what is safe for every person with Alpha-gal. They are asking for enough information to make informed decisions for themselves.

Alpha-gal presents a somewhat different labeling challenge because the issue may not always be the ingredient itself but where that ingredient came from. A perfectly accurate ingredient list can still leave a sourcing question unanswered.

That is why the conversation may need to move beyond simply educating patients to “read every label.” Patients are already reading them. The question is whether those labels contain the information they actually need.

When the Hospital Doesn't End the Investigation

The information gap becomes considerably more consequential when the setting changes from a grocery store to healthcare.

Patients describe concerns about medications, vaccines, ointments, capsules, surgical materials and other products used during treatment. But one comment in the latest data illustrates why this problem cannot simply be solved by telling healthcare professionals to become more educated about Alpha-gal.

The respondent described specialists who were unfamiliar with AGS but actively tried to determine which products might be appropriate:

“They try to research appropriate medications, vaccines, ointments, surgical materials, and are dumbfounded at having to contact the manufacturer with lot number, date of production etc to find if the ingredients are mammal derived or not. I've had to delay taking medications until I can find a safe version.”

These are not healthcare professionals refusing to help. They are trying to find the answer and encountering the same information gap as the patient.

Education can teach a physician what question to ask. It cannot guarantee that the information needed to answer that question is readily available.

A person standing in a supermarket can put a product back while they investigate it. A patient who needs medication, a vaccine, dental treatment or surgery may not have the same luxury. When determining the source of an ingredient requires contacting a manufacturer with a lot number and production date, the problem has moved well beyond whether the patient—or physician—remembered to read the label.

This Isn't a Memory Test

Much of the conversation around Alpha-gal has understandably focused on education. Patients need to understand their triggers. Physicians need greater awareness. Pharmacists need reliable information, and healthcare systems need appropriate protocols.

Education matters, but it has limits. A well-informed patient still cannot read information that isn't on the label. A knowledgeable pharmacist cannot reliably identify the origin of an ingredient if that information isn't available to the pharmacy. A physician cannot account for a manufacturing source they have no practical way to verify.

At some point, repeatedly telling patients to become better educated about an opaque system stops addressing the underlying problem. The information itself needs to become easier to obtain.

A Place in the National Conversation

The Make America Healthy Again initiative has brought renewed national attention to food ingredients, transparency and questions surrounding what Americans consume. Regardless of politics, the broader conversation about giving consumers meaningful information about the products they put into their bodies has direct relevance to people living with Alpha-gal Syndrome.

For this community, ingredient transparency is not an abstract debate over food preferences. Patients may be trying to follow medical advice while discovering that knowing an ingredient's name still does not necessarily tell them what they need to know about its source.

Tick Bite Data has written to the White House and individuals associated with the Make America Healthy Again initiative in an effort to bring greater awareness to Alpha-gal Syndrome and move the conversation beyond its familiar description as a “red meat allergy.”

That outreach reflects what patients continue telling us. For many respondents, the challenges associated with AGS extend beyond avoiding beef and pork and into medications, supplements, processed foods and medical care. Better awareness is important, but awareness without accessible information can still leave patients responsible for solving the problem themselves.

What Would Better Labeling Actually Look Like?

The conversation does not necessarily need to begin with another certification printed on the front of every package. A more useful starting point may be mammalian-source transparency.

If an ingredient is mammalian-derived, that information could be made accessible. If the source can vary depending on supplier or manufacturing process, consumers and healthcare professionals could have a practical mechanism for determining what was used in a particular product. When sourcing changes, that information should remain traceable.

This approach would not require manufacturers to decide whether a product is safe for every person with Alpha-gal. Instead, it would give physicians, pharmacists and patients the information necessary to make decisions based on an individual's sensitivity and medical needs.

Better sourcing information could also benefit research. When a patient reports a reaction to a particular product, knowing whether mammalian-derived components were actually present would make that experience considerably easier to investigate.

The Label Shouldn't Require an Investigation

There will always be some responsibility on the patient after an Alpha-gal diagnosis. People have to understand their individual reactions, make choices appropriate to their sensitivity, ask questions and advocate for themselves.

But there is a significant difference between asking someone to read a label and asking that person to conduct a supply-chain investigation.

Our latest patient-reported data increasingly reflects that distinction. People describe trying to determine whether medications contain mammalian-derived ingredients, whether capsules or supplements are appropriate for them, whether healthcare providers have enough information to advise them and whether manufacturers themselves can provide definitive sourcing information.

When the answer is uncertainty, the problem has moved beyond patient education.

A medical diagnosis should not require an ordinary person to become an expert in pharmaceutical excipients, food manufacturing and ingredient sourcing simply to follow the avoidance advice they have been given. If patients are being advised to avoid mammalian-derived exposures, they need a reasonable way to identify them.

We already ask people with Alpha-gal to pay extraordinary attention to what goes into their bodies. Better transparency would not eliminate the complexity of AGS, but it could remove one unnecessary part of that burden.

If mammalian-derived ingredients matter enough for patients to be told to avoid them, shouldn't they matter enough to disclose?