Gochujang is a Korean condiment. A mixture of hot pepper, sweetener, and fermented soy paste (doenjang). I had been avoiding these for some time after going gluten-free as most commercial versions contain wheat and/ or barley. I finally found some products made the traditional way that were gluten-free. I made a bowl of bibimbap (rice, egg, and sauteed veggies) and added a dollop of the gochujang. But a short while later I ended up vomiting and sweating profusely. I had been episode free for over a year. I am pretty sure this gochujang was the culprit because I ate everything at home that day, made myself, and everything else were items I knew to be safe. When a reaction is this painful and I’m pretty sure about the culprit, I don’t want to test it again for the sake of knowing with absolute certainty. This incident finally got me thinking about that allergy I had to mold and especially to aspergillus mix. Traditionally fermented soy paste can include many varieties of molds but the main one is aspergillus oryzae. Unlike most commercial versions, the product was also unpasteurized, which meant the cultures were alive, and may have been the critical reason why this was the first clear acute reaction I had to a fermented soy product.
I got the notion somewhere that since FPIES is not a classic IgE mediated allergy, the sensitivity threshold is likely to be higher. As in, I don’t need to worry about cross contamination, or cooking fumes, and perhaps could even get away with small quantities. This notion hurt me quite a few times.
I don’t know if there is research on such sensitivity levels generally, but my guess is that it is highly individual. Even some lucky(?) people with IgE mediated allergy can have high thresholds approaching almost a serving of the offending food.
For me, the provocation dose seems low enough that practically speaking I need to avoid my triggers strictly to avoid symptoms. But I can afford to take small risks with cross contamination as trace amounts are unlikely to cause the full blown reaction. It can still make things pretty miserable with multiple trips to the bathroom, etc.
My issue with shrimp perhaps shows an example of the sensitivity level possible with FPIES. If I actually eat a piece of shrimp, pain starts after about a half hour and the most severe symptoms of shock and vomiting occur in about two hours. About a teaspoon of fermented shrimp in soup caused similar reactions that were just a tad milder and delayed and peaking in about four hours. In another incident I had trace amounts of shrimp in broth for dinner and became increasingly uncomfortable during the night with extreme abdominal distension. I could barely sleep and by morning I couldn’t get into my clothes and looked perhaps 6~7 months pregnant. Finally at mid morning diarrhea started and I spent the next hour taking ten plus trips to the restroom. For the next couple of days I had tiny bumps all over my skin. But on the bright side, I didn’t have to fear death with the shock or vomiting.
The pattern I’ve noticed is that the smaller the quantity the more delayed the symptoms. And while they are a tad milder they can still be pretty severe. So it seems for all intents and purposes any and all form of shrimp must be avoided.
My FPIES reaction pain, which I’ve experienced too many times in life due to not knowing the cause, turns out was a lot worse than my unmedicated labor and birth. Actually my labor pains were also similar or milder than my severe menstrual cramps before going gluten free.
Granted, the recovery after birth lasted much longer and was not trivial at all.
My FPIES reaction might leave me weak for a day or so but I would usually bounce back to my normal state pretty quickly. Not so with birth. Might be my relatively advanced age, and sleepless nights, etc. But it was nearly two months before I felt more like myself.
Writing this I realize this might be heartbreaking for parents of young children with severe FPIES to hear. Hopefully this brings just a little light to the possible level of pain that these infants or younger children might be experiencing, who cannot accurately express what they themselves are feeling.
Can adults grow out of it?
What is the course of treatment In cases of atypical FPIES featuring shock and IgE allergy (my milk problem)? Are IV fluids enough or should EpiPen also be used?
Seems there are still many unknowns with need for further research.
Following are some info I found helpful from other sites with links:
FPIES (Food protein-induced enterocolitis syndrome)
A rare type of food allergy that affects the gastrointestinal tract. Classic FPIES reactions typically occur two or more hours after ingesting the “trigger” food and typically involve profuse vomiting, diarrhea, and can progress to shock. Reactions can be severe and require immediate medical attention.
Supposedly usually an infant/ childhood problem although adult cases have been reported.
It is not completely understood why FPIES reactions sometimes lead to low blood pressure. One theory suggests that fluids leak into the gut, resulting in less fluid in the blood vessels.
The primary treatment for hypotension and shock during a serious FPIES reaction is intravenous fluids. This treatment adds to the blood volume and improves the circulation.
Epinephrine given by autoinjector for typical allergic anaphylaxis has not been studied for hypotension/shock in FPIES. Because this medication works by strengthening the heart beat and blood vessels, but does not replace the missing fluids, experts do not feel that epinephrine should be depended upon as a treatment for FPIES reactions.
In chronic FPIES, symptoms resolve within a few days and up to 2 weeks after elimination of the offending food protein from the diet. Subsequent ingestions of the offending food after a period of elimination will result in an acute FPIES episode.
Although IgE-mediated disease is not normally associated with FPIES, some affected individuals have developed a food specific IgE as is seen with classic food allergies. These children tend to have a more prolonged course of the disorder. These cases are termed “atypical FPIES”.
Baked milk for cow’s milk FPIES
Many children with immunoglobulin E (IgE)-mediated cow’s milk allergy can tolerate milk in baked goods. However, this approach has not been studied in FPIES. The concern is that baking does not alter sequential epitopes that would continue to be recognized by T cells, presumed to be the effector cells of allergic inflammation in FPIES. Thus, we suggest that patients with FPIES triggered by cow’s milk avoid all forms of cow’s milk/dairy, including products with advisory labeling for milk.