A Case of Adult FPIES

This is a description of my most severe reactions.

Typically after about thirty minutes or so eating the offending food (for sure, milk and shrimp, and two other episodes, for which my best guess is hazelnut and live aspergillus mold), severe abdominal cramping starts, for the next fourty five minutes or so I start yawning a lot, get progressively paler (blue or gray lips), start sweating profusely, and apparently go into some kind of shock. My vision goes completely dark and I can’t see anything unless I place my head really low, lying down or crawling. I feel like I’m struggling mightily just to stay conscious. At this point urgent and forceful vomiting and diarrhea starts. Unfortunately they all want to come out at the same time. And I am in severe pain the whole time and cannot lift my head for fear of completely blacking out.

After emptying everything I can possibly empty out, even through my pores, I am finally over the worst and my blood pressure starts coming back. By this time, I’m usually soaked, including everything I’m wearing and anything I sat or lay down on before or in between trips to the toilet.

I experienced this many times in my life and before the past four years just didn’t have a clue that it was tied to specific foods. I never wanted to experience it again but I had no choice as it seemed to happen randomly.

I got so familiar with this whole pattern and consistent time frame that each time it happened, through the near black outs and the extreme pain, I would tell myself to hang on just a little longer as it will all pass soon. Of course in the back of my mind there is always the niggling fear that what if this time it’s just a little more severe and I don’t make it through?

Our best guess self-diagnosis, or lack of it, changed with time. As a youngster, adults around me thought this was some kind of acute indigestion and that I had a really odd and severe version. So the treatment was usually some digestion aids and home remedies like massaging my limbs, punching down my back, and pricking tips of fingers with a needle. As a young adult for some time I took pepto-bismol when this happened. I did have my doubts about this being some kind of indigestion. Aside from these episodes I had no digestive problems and even right after the episode I didn’t seem to have any problem digesting anything.

But then while looking up some health related stuff on the internet (oh thank you internet and everyone who shared their troubles) I came across the concept of abdominal migraine and cyclic vomiting syndrome. They seemed to describe something similar to what was going on. One of the characteristics mentioned was that the length of each episode was fairly consistent for the individual and that it would resolve on its own. This was what I had suspected all along. All those digestive aids and home remedies and medicine were not really doing anything. Since then I didn’t use any of these and the course was exactly the same.

Now I knew the pattern inside and out but it was only after we went gluten free and tried elimination diets that I found it was actually a reaction to a few specific foods.

Once I recognized it was an allergic type reaction, I finally found an as of now best match description to my reactions in severe FPIES (Food protein-induced enterocolitis syndrome). I also learned that I probably had the chronic form before I tried elimination diets, since my main problem food milk was eaten most days of my life.

The shocking thing is, even with such severe reactions, I truly believed that I did not have any food issues.

My speculation is that either there is something special about gluten/ wheat in that it really dulled the nervous system and/or my multiple issues were covering each other up when everything was eaten fairly regularly.

In the past, the only cause that I could find was that it was more likely to happen when it was cold and on or around my period or during exercise.

I have a suspicion that my body may have “learned” this pattern after I had a drug anaphylaxis reaction when I was 15. I tended toward diarrhea all my life with occasional bloody or tarry stools but the severe reactions with additional vomiting and shock started in my teens.

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