What does nutrition care look like when you have an autoimmune disease?
By Juliana Tamayo, WH DPG Student Partner
Being chronically ill is a struggle, but having an autoimmune disease makes things much more complicated, especially when it comes to nutrition. I suffer from three different autoimmune diseases: systemic lupus erythematosus, Crohn’s disease, and eosinophilic esophagitis (EoE). All of these affect the way I’m supposed to eat and how my body utilizes nutrients.
However, access to adequate nutrition and dietetic services can be limited, particularly because there is still a large gap in knowledge on nutritional needs for those with autoimmune diseases. This is even more complicated by the fact that there is some evidence that diet can influence risk for certain autoimmune diseases.
What are autoimmune diseases?
According to the National Institutes of Health (NIH), autoimmune diseases are those in which the body’s immune system attacks healthy cells by mistake. The damage done can occur in many parts of the body and result in various symptoms. As of today, there are more than 80 known autoimmune diseases, with some sharing characteristics, which makes them more difficult to diagnose.
Some of the common symptoms across these diseases include fatigue, muscle aches, joint aches, and even fever. There is also redness, swelling, and sensitivity to heat, cold, or light. These illnesses may have periods of remission and flare-ups, in which they tend to get worse and cause a lot of signs of pain[1].
Does diet influence autoimmune diseases?
The answer here is tricky. All my life, I have had to watch what I eat. If I ate too much fiber, my Crohn’s disease would flare-up. If I ate something too crispy, I would have a reaction due to my EoE. Lupus can also make you gain or lose weight depending on the medication you are taking, and with fluid retention, some foods may be out of the question.
But many of us wonder, is there a connection between our diets and the risk of developing an autoimmune illness? According to a study by Manzel, et. al., “It is current knowledge that nutrition, the intestinal microbiota, the gut mucosal immune system, and autoimmune pathology are deeply intertwined[2].” What this means is that ultimately our diets do matter in the long-term, but there is not sufficient data to say whether it is a cause of autoimmune illnesses or just a factor that may precipitate illness onset. We should watch what we eat, nourishing our bodies, and try to prevent the destruction of healthy bacteria in our gut. However, the best diet to achieve these goals can be very different for each of us.
Regardless, there is sufficient evidence to suggest that diet does influence symptoms and treatment. There are many ways that we can get better treatment when we suffer from autoimmune diseases, including lifestyle changes, medication management, and in some cases, physical therapy.
In recent times certain diets have gained popularity in the treatment of autoimmune disorders, such as the anti-inflammatory diet, the ketogenic diet, or the gluten-free diet. While these have proven benefits for some autoimmune diseases, these disorders are so varied and affect everyone in such strikingly different ways, that there is no one size fits all approach. According to the Harvard School of public health, the immune response can be triggered by various factors including antigens, inflammation, infection, stress, lack of sleep, or environmental factors. But does any one diet work to mitigate symptoms? The same report from Harvard found that dietary patterns and lifestyle changes have a better effect on disease processes[3].
How can we get adequate nutrition care as patients?
This is all to say that diets should be individualized, based on individual health assessments and needs. While I would like to say that this is possible for everyone, it is not. Finding a registered dietitian nutritionist (RDN), at https://www.eatright.org/find-an-expert who specializes in your disease may be a good way to focus the nutrition care process on your specific needs, but not everyone knows about your illness.
So, what can I do as a patient who suffers from three autoimmune diseases? I can start by knowing my symptoms, tracking them, looking for triggers, and writing down safe foods. Still, having the ability to do this is a privilege, and not everyone affected by autoimmune diseases like type 1 diabetes mellitus, multiple sclerosis, or rheumatoid arthritis, can micromanage their illness. That is why it is important to invest time in prevention, helping patients find diets that fit their budget and schedule while also promoting healthy lifestyle choices, like sleep schedules, stress management strategies, and support systems.
While there is not an autoimmune specialty for dietitians, there is the ability to specialize in particular diets, such as the gluten-free diet for Celiac disease, or a low-fat diet for someone with autoimmune pancreatitis. Patients can establish a safe and comfortable connection to their dietitians in which they can share what they like or dislike about their nutritional treatments.
The nutrition care process in autoimmune diseases often includes a nutrition focused physical exam, taking anthropometric measurements, recording diet history, and checking lab work and drug history. This is the part of the process in which a dietitian can truly pay attention to things that may look minuscule or insignificant but that in reality affect the autoimmune patient more than others. According to Balmer, “Typical drugs used in treatment, such as analgesics and nonsteroidal anti-inflammatory drugs, corticosteroids, disease-modifying drugs, and biologic response modifiers, may cause side effects such as nausea and vomiting, stomach pains, mouth sores, and decreased appetite.[4]” Not only do medications and treatments cause nutritional abnormalities, but they may also have contraindications with certain nutrients.
Overall, however, patients with autoimmune disorders want to find pain relief and a way to lower inflammation. The nutritional care autoimmune patients receive should also focus on replenishing those nutrients we don’t absorb properly or the ones that our special diets may lack. It is also essential that we find a diet that fits out specific needs and lifestyles while trying to boost our immunity as much as possible.
What can we do as registered dietitian nutritionists (RDN’s)?
Understand that no patient looks the same, is especially true for those with autoimmune diseases, so listening to clients, and adjusting for their needs is key. At the same time, we can offer other support, such as motivational interviewing and counseling, because dealing with these diseases is already challenging as it is. We can also work in collaboration with other health providers, including rheumatologists, primary care physicians, nurse practitioners, psychologists, and social workers.
At the end of the day, these tools allow the client to recognize their symptoms and triggers and hopefully manage these accordingly. To adequately provide nutrition care to autoimmune disease patients, the first step is recognizing what they are going through, and acknowledging that they will know more about their own illness than we do.
[1] https://medlineplus.gov/autoimmunediseases.html
[2] Manzel, A., Muller, D. N., Hafler, D. A., Erdman, S. E., Linker, R. A., & Kleinewietfeld, M. (2014). Role of "Western diet" in inflammatory autoimmune diseases. Current allergy and asthma reports, 14(1), 404. https://doi.org/10.1007/s11882-013-0404-6
[3] Harvard School of Public Health. Nutrition and Immunity. Accessed from: https://www.hsph.harvard.edu/nutritionsource/nutrition-and-immunity/
[4] Palmer, S. Is There a Link Between Nutrition and Autoimmune Disease? Today’s Dietitian. Vol. 13 No. 11 P. 36