Exercise Woes in the Past

All throughout my teens and twenties jogging caused abdominal pain. I could feel my intestines painfully juggling inside me quite frequently leading to diarrhea. If I jogged everyday, it seemed my body adapted the best it could so this problem would reduce. But, if I even skipped a couple of days the pain would come right back.

Occasionally this led to nearly passing out and vomiting. Understandably some companions were spooked and never asked me to work out together again.

Any exercise with enough intensity to cause me to sweat would make me itch all over.

Uphill hiking, moderate to intense, more than an hour long, would cause additional problems. I would become swollen, pale, and nauseated. At first I thought I was weak and didn’t have endurance, but the odd thing was that I wasn’t out of breath and I was entirely fine the next day when others who seemed fine on the mountain might be suffering from muscle aches and fatigue.

In the recent past, 1/4 of the time I did not feel well enough to exercise, either due to hormones and/or use of NSAIDs*. Out of the 3/4 of the time I could exercise, 1/3 of the time I suffered severe migraine immediately after and 3/3 itchiness.

All these symptoms became a thing of the past once I became aware of my allergies, which truly brought back the joy in moving my body.

* NSAIDs: NonSteroidal Anti-Inflammatory Drugs such as aspirin, ibuprofen (Advil, Motrin), naproxen (Aleve).

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.

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.