Is my EDS fatigue linked to alpha-gal syndrome and diet?

With a better control over AGS triggers, a columnist is less fatigued

Karen Del Vecchio avatar

by Karen Del Vecchio |

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I’ve said many times that chronic fatigue is one of the toughest parts of living with Ehlers-Danlos syndrome (EDS). It’s so tough to wake up just as exhausted as I was when I went to sleep. I’ve noticed recently, though, that my fatigue is a little bit better, which got me thinking about the timing of it.

I’ve dealt with exhaustion my entire life. Getting up in the morning has always been difficult, and I could easily hit snooze on my alarm over and over.

In high school, my mom would have to come into my room and watch me get out of bed or I would immediately fall back asleep and be late to school. While I learned how to get up on my own over the years, the feeling of exhaustion didn’t change much.

Last year, I was tested for alpha-gal syndrome (AGS), an allergy to red meat and other products made from mammals. But while eating any mammalian-derived products gave me terrible gastrointestinal symptoms, technically I didn’t have AGS because I didn’t have anaphylactic reactions. New information, however, has shown that there’s actually a subset of people who are reactive to the alpha-gal protein in the same way that I am — solely digestive problems. I’m now “official” in my diagnosis!

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While some items like dairy or meat cause me severe symptoms, others cause much less intense ones. Those seem to be more removed from their original state, such as products derived from mammalian meat. That made some of the products harder for me to identify when I was having an issue.

In the last couple of months, I’ve noticed that while I’m still tired, it’s a bit easier to get up in the morning. When I calculated when this change started, I realized that it was a few weeks after I learned about a few more ingredients that can cause me mild AGS reactions. For example, I learned that vitamin D3 is usually derived from sheep lanolin, meaning that anything I ate that was fortified with D3 — such as many cereals — would mildly upset my stomach.

I suspect the low-grade inflammation was impacting my whole body. Now that (I think) I’ve learned all of the unusual things that can cause me a problem — with the help of the dietary app Fig — I haven’t had any episodes of upset stomach in quite a while. As a result, I’ve noticed my sleep and ability to wake up improving. It’s amazing that such small changes can make a noticeable difference in my day-to-day well-being.

My various diagnoses interact in so many ways. Physical pain and emotional stress are linked to my anxiety; exhaustion can lead to pain flares; and AGS and inflammation can lead to pain flares and exacerbate my EDS fatigue. Sometimes managing everything can be stressful, but when I can get it right, I definitely feel the difference.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


Valerie Dunkle avatar

Valerie Dunkle

Syndrome yes, diet no. I’ve been vegan since 2015 and have less fatigue than before that time. It may be only anecdotal, but it’s been the experience of other family members too.


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