Scientific Minded

Medical science is not complete. There are a lot of gray areas, which we need to navigate the best we can, considering what is known but also what may still be unknown or unexplained. These days, partly because we perceive our scientific knowledge to be quite advanced, we can be slow in acknowledging that there really might be something going on when it doesn’t fit neatly into what is already known. It is too easy to dismiss, too easy to suggest that perhaps it is all in your head. That happens too much. We can keep that as one of many options of what might be going on. Besides such condemnation doesn’t actually help even if someone is ‘mental’.

While I think the scientific method is still the best we have so far, we must remember there are many things still to be uncovered. Unproven does not necessarily mean it does not exist. Reality is much more complicated.

If you are directly affected, you can’t just wait around until someone proves with certainty. Even if something is fringe/ niche/ experimental, if it works for you, it may be the best option for now. Hopefully further studies will prove it for larger populations.

Delayed Allergies and Chronic Illness

My understanding is that our understanding of the delayed type allergies are still very limited. And there is no clear medical test for it. Even gluten sensitivity that is not celiac doesn’t have a test. Unfortunately when there is no test and no medication for something it seems it almost doesn’t exist to the medical community. This is where western medicine falls short. It is superb at acute crisis management and I owe my life multiple times to it. But it has a blind spot to viewing people as a whole system and to the management of chronic ills, chronic fatigue syndrome is one that comes to mind. I suspect we are just starting to understand all the biochemistry that underlies many mysterious chronic illnesses.

What I thought I knew about allergies and how it changed

These might still be true for most but when you are the exception, it is helpful to know of the possible complexity and idiosyncrasies.

You cannot NOT know about your food allergy.
→ You may not know you have food allergies, perhaps because you have multiple or the chronic form.

A true food allergy will cause an instant reaction to tiny amounts of allergen.
→ Some allergies, even IgE mediated, have a delayed reaction. On the other hand some non-IgE mediated allergies have an immediate reaction.
→ Some people have high provocation doses even up to a typical serving size.

Symptoms are usually swelling or hives.
→ Allergies may manifest in less typical ways (GI issues, headaches…).

If you do have food allergies you likely have 1 or 2, anyone with more than a few is suspect.
→ It is possible to have many allergies, there are plenty reported in research.

Food allergies can be detected by skin prick test.
→ Some allergens do not show up well in skin prick tests. Frequent offenders are wheat and sesame.

False negatives are exceedingly rare in allergy testing.
→ Might be rare but it is still possible, and some severe allergies may be non-IgE mediated.

FPIES exists mainly in very young children.
-→ Adults can have it too and it is likely underreported as people simply may not know what they are dealing with.

FPIES Sensitivity Threshold (Provocation Dose)

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.

Shrimp Allergy

I am not sure whether this allergy happened to be newly emerging at the time, as it is quite common for shellfish or other seafood allergies to develop in adulthood. The incidents that made me suspicious were due to small amounts of fermented shrimp paste. It was a strong suspicion before going into allergy testing but when the skin prick test came out negative I made the mistake of eating a few actual plump pieces of shrimp and suffered immensely for it. 

Even after this I made a (turns out mistaken) assumption that since this is not an IgE mediated allergy, I might tolerate small amounts of it. If you can tolerate a tiny amount, or a small amount of fermented shrimp, a lot more options open up especially if you are into Asian foods. Alas, it was not to be.

Later incidents informed us that I react badly to even small amounts of fermented shrimp and undetectable levels (at least by eye and taste) of dried shrimp used to make broth.

Symptoms

FPIES, anaphylaxis
Delayed tiny bumps all over skin

Skin prick test

Negative
Possible connection with dust mite allergy (positive) as a trypomycin cross reactivity issue

Other crustaceans?

With a 75% chance to cross react, I have not taken the risk

More on my Milk Allergy

Arguably my most severe allergy and based on symptoms and testing (positive skin prick test) it is likely an IgE and non-IgE mixed allergy.

Unlike “common sense”, in my case, the IgE component (“true” allergy in its narrow definition) is the mildest symptom (immediate local hives) of the bunch.

After the hives appear, in thirty minutes or so severe abdominal pain, black out, forceful vomiting and diarrhea start and usually resolve in two hours (See “A Case of Adult FPIES”, “FPIES Pain Level”).

I may have had milk issues my whole life, yet didn’t know it, and my body wasn’t given a chance to forget and outgrow the allergy. And things gradually got worse. Starting with supplemental formula, I had milk nearly everyday of my life since birth and so had no chance to know how my body felt without it. Red flags? Always tended toward diarrhea. Urgency after having milk. Addicted to milk.

Possibly a case of undiagonosed/ unresolved chronic FPIES, which got dramatically worse since drug anaphylaxis episode in early teens.

The one time I tried baked milk I had immediate local hives and slight loose stools, but other more severe symptoms (shock, vomiting) did not occur. Later I learned baked milk (along with all other forms or dairy) should be avoided with FPIES.

I had mild ongoing symptoms with butter and homemade clarified butter (ghee), when these were still a fairly regular part of the diet. I don’t know if now that I completely avoid all dairy I might have acute symptoms even with these. But anything more like ice cream, yogurt, and of course straight up milk cause severe symptoms.

Due to severe (I might die!) symptoms, I am not keen on testing tolerance or sensitivity level in any more detail.

Premature Expansion of Diet

After weeks of prepping from scratch everything we put into our mouths we couldn’t wait to expand our diet. Not to mention social outings that were put on hold. Other than gluten and dairy and watching high salicylates for me and high amines for my partner everything else was rushed back in. Our groceries included processed foods again and eating out was back whenever we met people. The trouble was I started to have reactions nearly constantly ranging from mild to occasionally severe. At first, I thought I was being “glutened” by small amounts hidden in the food somewhere or even cross contamination. Luckily we were still recording our symptoms and everything we ate and looking back at it helped us realize that there were other factors. And now that I knew how much better I could feel with the right diet, I was willing to forego some convenience to figure it all out for sure.

Dairy Challenge

I was in denial for awhile. All my favorite foods! But finally decided to try cutting it out for a week.

I then tried a glass of milk and didn’t notice anything. The second day, I started having abdominal pain and itchy bumps after half a glass. The third day I had another half glass and within half an hour experienced abdominal pain and itchy bumps again. The pain intensified over the next hour. I became extremely pale, was sweating profusely and nearly blacked out. After forceful vomiting and diarrhea I started to recover in the next 45 minutes or so.

Other symptoms that showed up after this reaction was: dizziness, low mood, feeling spaced out and sluggish, slight feeling of incontinence, gas, whiteheads, raspy voice, mouth sores, bleeding anus, metallic taste, and sinus pain.

One caveat was that we weren’t entirely dairy free. I didn’t remove butter from our diet, for instance, which might explain the delayed reaction, as the body was still somewhat adapted to having dairy all the time. Partly I wasn’t as strict or careful as I truly didn’t expect to have much worse reactions than say some gastrointestinal intolerance. The possibility of an actual food allergy was not on my radar. In hindsight this was extremely dangerous. Now, after being truly dairy free, reaction to a single accidental ingestion is swift and severe. Unless it is a minuscule amount, as in unintended cross contamination, pain starts within half an hour.

I was actually already intimately familiar with that full blown reaction pattern on the third day. I suffered through it many times in my life, sometimes fearing that I might not pull through and die when I black out. If I had a choice I never wanted to experience it again but there was nothing I could do as it always seemed random without a clear culprit. Within the next year I found a few other foods that cause a similar reaction and since avoiding them have finally been free of these episodes for the last few of years.

My partner got smelly watery bowel movements with milk and when he had a second glass within a day would get abdominal pain. Our first guess was lactose intolerance, but turns out he has the exact same pattern with lactose free milk. So our current guess is that he probably has a milk protein intolerance. Along with gastrointestinal symptoms he gets headaches. Other suspected symptoms are bruxism (nighttime teeth grinding), dizziness, sneezing, and spacing out.

Two Week Gluten Challenge

After about a week I felt noticeably higher energy levels and clarity in my thinking. When we started eating it again after two weeks these symptoms immediately returned: irritability, bloating, hungry less than two hours after eating, brain stuck, can’t make decisions, routine tasks are stressful, low energy and motivation, slight constipation. Other symptoms that we highly suspect are related to gluten are: dizziness, headache, pain behind eyes, joint pain, itchy skin, needing to clear throat, shoulder pain, eyelid fluttering, fatigue, lack of focus.

We did not notice any immediate or obvious change in my partner other than a great reduction in gas when gluten free.

I felt such a huge difference in my body and mental state that the previously unthinkable happened. I never wanted to eat wheat again despite my love for pasta, pastries, and breads. So immediately I went back on a gluten free diet.

After 1.5 months I noticed that my PMS (premenstrual syndrome) symptoms (swelling, bloating, fatigue, etc.) disappeared and for the first time in my life I didn’t need pain killers for severe menstrual cramps. Also in recent years I started to have spotting around day 21 of my cycle, perhaps due to a slightly low level of progesterone, and even that disappeared.

After realizing I have multiple allergic tendencies I realized our gluten free diet trial was more accurately a wheat challenge. We didn’t actually eat barley or rye with any regularity so pretty much everything we eliminated and tried eating again were wheat products. But in all practicality, wheat free and gluten free are most of the time one and the same. It is very rare to eat only barley or rye and I became even less keen to try them separately after having a positive skin prick test to both.

Brief Timeline of Food Experiments (First Three Years)

Phase 1. Gluten free diet trial

We went gluten free for two weeks then reintroduced it for one day. Shocked by how different I felt I went right back to the gluten free diet.

Phase 2. Dairy challenge and mold allergies

This was entirely unplanned. Once we had cut out gluten for a week or so, I started noticing abdominal pain after having dairy products. Around the same time I realized I had reactions to mold as well. It was odd to suddenly be able to sense these patterns.

Many of my favorite foods are dairy based but I couldn’t stay in denial much longer and finally did a dairy challenge.

Phase 3. Food chemical intolerance trials (salicylates, amines, free glutamate)

As I still suspected there was something that was bothering my partner we decided to look into this after tracking our diet and symptoms for a month and finding a suspected correlation.

Phase 4. Premature attempt at a less restricted diet

We thought we knew our problems and rushed back everything else only to have near constant reactions sending us back to the drawing board.

Phase 5. Series of eliminations and allergy testing

The more severe, sensitive, and immediate the reactions were, the more obvious they were to catch early on, once I recognized the possibility that I might be allergic or sensitive to things other than gluten.

Allergy testing partly confirmed what I already knew and illuminated a few that I had missed. But for a couple that I suspected but tested negative, I trusted this too much and ended up having dangerous reactions. A reminder that the ultimate test for food reactions is if you actually react when something is eaten, which may or may not correlate to skin test results.

Once the culprits were removed for good, the worst reactions were behind me. Also my tolerance level of salicylates improved to the point that I no longer have to think about it.

Phase 6. Finding the sneaky problem foods

There was still something causing headaches and diarrhea. It took more than a year of tracking food on and off until we finally nabbed soy and understood more about mold in food.

Phase 7. A new normal and gradual expansion of diet

Feeling healthier than ever with much fewer surprise reactions, I am now gradually expanding the diet again and enjoying foods that turned out to have been needlessly eliminated.