Update: FPIES Pain Level (Comparison with Unmedicated Birth)

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.

Additional Info on FPIES

Following are some info I found helpful from other sites with links:

FPIES (Food protein-induced enterocolitis syndrome)

What is it?

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.

Treatment for FPIES with shock

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.

Variants

Chronic fpies

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.

Atypical fpies

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.

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.

Salicylate Sensitivity and Allergy

At first, my tolerance level was roughly one piece of fruit a day. Obviously a shorthand as there are many foods with salicylates and the total amount is what actually matters but for the most part fruit tended to be the single highest salicylates source in our diet. But sometime in the middle of going through our elimination diet I realized I tolerated a lot more salicylates than before. It seemed to coincide to the point I entirely eliminated dairy, including clarified butter and ghee, but I cannot say with absolute certainty whether that was the key. Nowadays, I don’t worry about the amount of salicylates in our diet.

I wonder if there is a connection between salicylate sensitivity and food allergies but have not been able to find studies on this yet. Although there is a connection the other way around in that as with exercise, aspirin and NSAIDs can amplify food allergy reactions.

More on Biogenic Amines and Histamine Intolerance

As we continued to track our food, we eventually found…

My partner has a problem but is it amines? Histamine? Mold? For example banana is not a problem. In practice the only problem seems to be too much fermented foods.

In my partner’s case, it may not be general amines, but could be a histamine intolerance, or a reaction to mold. My partner’s cluster of symptoms ending with body aches and fever has been repeated a few times. The common factors seem to be an increase in fermented foods, dusty environments, and alcohol. He has dust mite allergy, so it just might be histamine overload from multiple factors. But in day to day life he does not have to eat “low amine” to avoid these symptoms.

For suspected amine sensitivity it seems especially useful to figure out in more detail which foods actually cause symptoms as there are many different types of biogenic amines and one may only be sensitive to certain kinds. It is also helpful to get a sense of tolerance threshold so that one doesn’t have to unnecessarily restrict and make things difficult.

White Chocolate

What about white chocolate? As it is made from just the fat (cocoa butter) pressed out of fermented cacao it has very little of cacao’s proteins or chemicals (caffeine, theobromine, etc.). Seems unlikely to have significant traces of insects or mold either. Probably depends on what exactly you are reacting to and your personal tolerance level. There is a good chance you might do much better with white chocolate. But as I have issues with milk and nuts and to a lesser degree soy, it’s very difficult to find products that won’t have cross contamination issues with these ingredients anyway. Besides, with more important food groups to worry about, I haven’t gotten to the luxury yet of testing personally if I might tolerate cocoa butter.

Here someone has thought a lot more and written about the benefits of white chocolate.

http://perfecthealthdiet.com/2014/03/white-chocolate/

According to this study, white chocolate was found not to have mold toxins, unlike chocolate.

https://www.ncbi.nlm.nih.gov/pubmed/23564311?dopt=AbstractPlus

Update: So… We tried raw cocoa butter.

Me: unlike regular chocolate did not experience instant rumbling, but a mild headache gradually came on, followed by slight messy stool the next day.

Partner: more immediate moderate headache, softer bulkier stool next day.

Since this product was raw, as a test, I also baked white chocolate brownies (blondies?) with the cocoa butter and the symptoms mostly disappeared. Whatever was causing our issue, it seemed baking mostly neutralized it.

Chocolate

Sometimes conventional knowledge doesn’t help. “Cocoa allergy is extremely rare, possibly non existent. Most likely it is whatever else is added to chocolate, milk, nuts, or soy, that causes problems for people.” This is reasonable advice and may apply to most but it is not the only possibility.

I really did not want to give up chocolate. I think most of us in the developed world would understand. (Apparently in the cacao growing regions of Africa, many workers have never tasted chocolate, and toil without knowing what the fruits of their labor are for.) It was my drug of choice. Tending to self-medicate with it when I felt low. Or was it the chocolate that was making me feel low? I needed to exhaust all such possibilities. So of course I spent way too long suffering for each experimentation.

I noticed fairly early on that even just a few dark chocolate chips would cause instant rumbling. And when I started to keep my eye on this, I recognized some patterns. If I had more than a few it actually did seem to affect my mood, as in I really didn’t want to move, and cause softer messy bowel movements.

Naturally I looked it up, found the general advice I noted in the beginning, and since at first I didn’t believe I could be “that sensitive” about most things I started with the darkest chocolates, which didn’t agree, then went on to allergy free chocolates, which alarmingly still didn’t agree.

Da google turned up an alternative explanation from some allergy doctor, which had been in the news some time ago. namely that some people who have allergy symptoms to chocolate may be reacting to cockroach(!). Since the allergen in this case is tropomyosin, folks who have dust mite or shellfish allergies may have cross reactions. 

This was when I learned more than I would like to know about how chocolate is made. Whatever the ingredient labels may indicate, chocolate is not just cacao, sugar, and sometimes milk, etc. It begins its life lying for long periods on the ground fermenting to develop its characteristic flavor. So it has insects, which apparently even the highest quality chocolates can’t guarantee not to have, and later, I realized, mold. FDA guidelines about allowed impurities in food is certainly an entertaining read. And due to the manufacturing process of chocolate and its gooey sticky nature, it is one of the worst offenders regarding cross contamination. Some estimates say upwards of 70% of dark chocolates have traces of milk and nuts. So, the conventional knowledge is, again, reasonable, but just may not be the only explanation.

At this point I had a consultation with an allergist and asked her opinion. Somewhat disappointingly she just repeated the same general knowledge I knew at the beginning even though I told her I had also tested “allergy free” chocolate. She also didn’t know the products I was talking about. (Somehow I expected she would know. Wouldn’t she be fielding lots of questions from parents, kids… chocolate chip cookies for all those milk, nut, and soy allergic kids?) I did come away with confirmation and new knowledge of mold allergies, specifically to aspergillus, which might be an explanation in my case.

Without much guidance to turn to, I tried cocoa powder, still not good. And started to wonder what would reasonably be the purest product that I could test? I sure can’t start growing my own cacao, so what would be the next best thing? As minimally processed as I can find? That’s when I remembered cacao nibs that had started to turn up in health sections. I’m not sure what I was thinking. Would I make my own chocolate if it agreed with me? Anyway, I bought a pouch. I nibbled on one, then just started the next when I could feel the familiar rumbling in my stomach with a vengeance. That was it for me. Whatever the exact cause, if I wanted peace in my system, there was no chocolate product that agreed.

Now as to why this might be? Cockroaches? Perhaps, though highly doubtful it was in any meaningful amount in the nibs and I still have the same reaction. I am more inclined to two other guesses. It might be a reaction to mold, which due to the fermentation process, there always must be some traces of, even in the least processed cacao nibs. Or some kind of mainly gastro intestinal sensitivity to seeds. Cacao is the seed of a fruit that looks somewhat similar to papaya. Perhaps others might have problems with tropical fruits and that is the cause. I don’t know if some with natural rubber latex allergies might have cross reactivity issues. (A quick search turns up latex being used as adhesive on some chocolate bars. Yet another possibility for some. The more you know!)

I did get a bit upset when I found, unlike “true allergy” information, which kept repeating cacao allergy is likely non-existent, apparently for irritable bowel syndrome (IBS) chocolate is among the top three triggers. Well then, allergy docs, couldn’t you at least point to such possibilities? That people are not imagining things. It may not be “true allergy” in its narrowest definition but there are other mechanisms, that no one fully understands, that may be causing the distress. Non-IgE or cell mediated immune reactions, gastrointestinal inflammation, chemical intolerance (cacao has plenty of these as well… phenols, amines, theobromine…) and perhaps even things yet unknown.

So, with much tears, goodbye to chocolate and all its heavenly derivatives. At least for now, or for this life, I cannot know for sure, but I did savor you while it lasted.

Our Current Diet

Strictly avoid: milk, tree nuts, shrimp

Avoid: Gluten, soy, live yeast, fermented soy, chocolate, buckwheat

I no longer need to watch my salicylates intake.

Caution with anything that might have mold, especially when eaten raw: sauerkraut, kimchi, grapes, berries…

My partner does not have to avoid anything strictly but does seem to have problems with milk, alcohol (especially beer), live yeast, chocolate, and fermented or aged/ cured foods. Gluten? Unclear.