Psychological Impacts of Living with AGS, by Dr. Paige Freeman
As advocates of holistic care, we think it’s incredibly important to address mental health, especially considering the dramatic impact of living with alpha-gal syndrome or other food allergies. One of our most valuable resources is Dr. Paige Freeman, PhD, PLLC, an alpha-gal informed psychologist with a clinical focus in the treatment of anxiety, including food allergy stressors.
We are excited to share the article below from Dr. Freeman addressing the psychological impacts of living with alpha-gal syndrome as well as additional resources and information.
Psychological Impacts of Living with Alpha-gal (Galactose-alpha-1,3-galactose) Syndrome
by Paige L. Freeman, PhD, PLLC
BACKGROUND:
Galactose-alpha-1,3-galactose (Alpha-gal), syndrome (AGS) is a food allergy to non-primate mammalian meat (hereafter referred to as mammalian meat) and its derivatives. AGS has only recently, in the last 20 years, been identified and the syndrome is occurring worldwide.
Uniquely, the allergy appears to develop following a tick bite. Although the exact mechanism remains unknown, the tick may transfer a sugar molecule (Alpha-gal) into the bloodstream, triggering an immune system response that later produces the allergic reaction to mammalian products. Based on the geographic incidence of the syndrome, the lone star tick appears to be the primary cause of the disease in the U.S.; although other tick species may be implicated and are responsible in countries outside of the U.S. There is no cure, and treatment involves avoidance of all mammalian meat. Some individuals with AGS react to slight traces of mammalian ingredients and must omit other mammalian-derived products and dairy from their diet.
FACTORS INFLUENCING HEIGHTENED STRESS IN AGS PATIENTS
Living with AGS is enormously stressful on several different levels. These stressors can be loosely grouped into several different categories:
Reactions and Anaphylaxis- Reactions to alpha-gal can include, but are not limited to, upset stomach, headache, hives, rashes, swelling, shortness of breath, and anaphylaxis. The actual experience of anaphylaxis, or even any reaction, can be extraordinarily frightening, and in some cases traumatic. AGS reactions can even lead to Acute Stress Disorder or PTSD (Post Traumatic Stress Disorder). At a bare minimum, a food allergy reaction often involves fear, uncertainty, and physical as well as psychological discomfort.
Avoidance of the Allergen- The vigilance involved in avoiding consumption of mammalian products and derivatives can be overwhelming and exhausting. Tasks involved include, but are not limited to, checking food labels, calling food manufacturers, and asking questions of food preparers at events and restaurants. Additionally, mammalian cells and tissue are not limited to only food products but can be found in seemingly innocuous medications (both over the counter and prescription), supplements, surgical products, dental products, medical products such as IV fluids, vaccinations, porcine heart valves, personal care items and more. The sheer breadth of potential allergen exposure obviously adds to the necessary vigilance and the stress involved. Additionally, people with AGS have different reaction thresholds to the above products and the trial and error required to determine that threshold is psychologically demanding.
Financial- There is a financial burden involved in the management of AGS. Physician appointments and testing are expensive and typically involve taking time off work. These visits and diagnostic tests can last years with no answers. People with AGS have the additional expense of epinephrine as well as the increased cost of specialized groceries, personal care and cleaning products. Over-the-counter medications may need to be certified organic, vegan, or otherwise compliant with a mammalian-avoidant diet.
Social- After a diagnosis of AGS, social interactions can change drastically in a very short period of time. Events and restaurants that were once enjoyable are no longer feasible options because of safety concerns. Going over to a friend’s house for dinner becomes more complicated. It is much harder to spontaneously plan or participate in events surrounding food. Almost all social activities involve food in some form or another, which means most all social interaction will be impacted.
Interpersonal- A diagnosis of AGS will have an impact on most people’s relationships in at least some way. Friendships, marital/partner relationships, and even work friendships must make room for the diagnosis and adjust accordingly to the new parameters of living with AGS.
Familial Stressors- The immediate family system will need to grow, change, and flexibly adapt to accommodate an AGS diagnosis. There may be disagreements among family members as to the degree of vigilance necessary to keep the affected family member(s) safe. The rules, roles, rituals and every day family activities will likely need to be adjusted as well. Extended family stressors may include the need to repeatedly explain the nature of AGS to well-meaning family members who simply do not understand the seriousness of AGS. Others may outright refuse to acknowledge or accommodate the allergy.
Delayed Reaction- One of the hallmarks of an AGS food reaction is the length of time it takes to appear. Most other IgE-mediated allergic reactions present within 30 minutes of exposure. AGS reactions can take anywhere from 3-8 hours or longer to present. Additionally, because of the delay in reaction time, AGS reactions have a higher likelihood of occurring when the person is asleep. All the above can increase fear and anxiety.
Lack of Familiarity with AGS in the Medical Community Leads to Delayed Diagnosis- AGS typically takes much longer to diagnose than other IgE- mediated food allergies, in part due to the delayed reaction. It is very difficult to pinpoint what is causing the reaction when the exposure and onset of allergic symptoms are so far apart. Because AGS is a relatively new diagnosis, many physicians and other health care providers are unfamiliar with the presentation, which is in and of itself already a difficult diagnosis to make. These factors also contribute to delayed diagnosis with the possibility of multiple misdiagnoses along the way. In fact, Flaherty et. al (2017) * found that in more than 100 medical visits, the correct diagnosis or appropriate referral for patients with AGS occurred less than 10% of the time. Even more concerning is the finding in this same study that the average time it took to reach a correct AGS diagnosis was 7.1 years for almost 80% of respondents. Unsurprisingly, this results in feelings of frustration, worry, fear, helplessness and hopelessness in AGS patients. Additionally, patients may have to take on the role of educating their physicians, other than their allergists, about AGS. The lack of education and understanding of AGS within the medical community, combined with the other stressors patients must deal with, leads to an enormous psychological impact on those with AGS.
Navigating Conflicting and/or Lack of Information- As with all food allergies, it can be difficult to navigate your allergy given all the conflicting information out there. Different websites, social media groups, and even physicians can have different recommendations on how to treat a reaction and what needs to be avoided. As with other food allergies, patients are sometimes left to determine for themselves what is reliable information and how to manage the condition.
TOLERATING UNCERTAINTY CAN INCREASE RESILIENCE
A pervasive theme of all food allergies, but in particular AGS, is uncertainty. Our brains like to find patterns and organize information in a way that makes sense and that helps us to prepare for the future. When we do not have the resources to do that, anxiety can follow.
On the flip side, learning to tolerate uncertainty can lead to greater resiliency and psychological flexibility which are extraordinarily beneficial not only in stressful situations, but in daily life. If you have AGS, be proud of your resiliency and the flexibility that you have had to utilize to get where you are in your journey. Be kind to yourself when you are overwhelmed, acknowledge the very real stressors you are managing, and remind yourself of your accomplishments.
MENTAL HEALTH RESOURCES
Learning to navigate AGS is challenging in all the ways mentioned above and more. It is not only understandable, but predictable that there is going to be a period of psychological adjustment. Due to the seriousness and chronicity of AGS, some people may need the help of a mental health professional to navigate their new life. If you think you may need some assistance, it will be important to find an AGS or allergy-informed therapist who understands the seriousness of AGS/food allergies and the unique stressors associated with the conditions. These specially trained clinicians are well versed in effective strategies to help you manage the unique stressors to an AGS/food allergy diagnosis.
You can find a list of allergy-informed therapist in your area here: https://www.foodallergycounselor.com/directory.html