In this part of the summary, we’re going to cover: temporal mandibular joint dysfunction, eosinophilic esophagitis, and lactose intolerance/sensitivity.
I’ve decided to make the explanation and story of my journey with postural orthostatic tachycardia syndrome into its own post.
Temporal Mandibular Joint Dysfunction (TMJ or TMD)
The temporal mandibular joint is the joint where your lower jaw connects to your skull. If you put your hands against your cheeks right up against your ear, and then open and close your mouth, you can feel a joint moving… that’s the temporal mandibular joint. Normally, both sides should move exactly the same. With TMJ, they don’t. For me, my jaw opens such that my chin tends to angle slightly towards my right, causing the left joint to pop out of place. This can be very painful, and will lead to massive headaches if it happens too often in a short time span. My jaw will also make popping and clicking noises, especially when I chew or yawn, and will get sore if I use it too much (eating something that requires excessive hard chewing, talking for over an hour, singing for a while, etc). The severity of these symptoms can vary day to day. My treatment is a night guard (I also grind my teeth, so it does double duty) which helps to retrain the muscles of my jaw. Not sure how well it’s working, but this one is low on my priority list.
Eosinophilic Esophagitis (EoE)
Eosinophilic esophagitis is quite the mouthful, even once you know how to pronounce it (ee-oh-sin-ah-fill-ick eh-sof-ah-gy-tis). Because it is so long and difficult to pronounce, it is often abbreviated as EoE or EE. Now, let’s breakdown the words to get a basic definition of what it is. Eosinophils are white cells that react to allergens. Esophagitis can be broken down into the parts “esophagus” and “itis.” The esophagus is the passage that connects the mouth to the stomach (sometimes referred to as the “food tube”), and “itis” designates any inflammatory condition; so esophagitis means inflammation of the esophagus. Putting all of that together, EoE is inflammation of the esophagus caused by eosinophils. When something triggers the condition, the esophagus swells up making it difficult or impossible to swallow. These flares can sometimes lead to permanent damage. Many patients have specific triggers; however, we have not found any of mine. Luckily, diagnosis for this condition is relatively easy. A gastroenterologist performs an upper endoscopy (they give you general anesthetic and put a tube down your throat, through the stomach and into the very beginning of the intestine) and takes biopsies in several areas along your digestive tract. When examining the biopsied tissue, the presence of excessive eosinophils in the tissue of the esophagus confirms the condition.
I knew to seek help for the condition after I choked on food so badly that I ended up needing to go to the Emergency Room to have my throat relaxed. I’d been getting food caught in my throat sporadically for a few years prior to the diagnosis, but assumed I was eating too quickly and not chewing enough. After diagnosis, I got put onto a very strict elimination diet. For three to four months I had to come off of eggs, soy, wheat, dairy, nuts and shellfish. Luckily, I don’t eat nuts (allergic) or shellfish, so I didn’t have to worry about those. But coming off the others at the same time (one to two months), then taking at least another month to reintroduce them one at a time, was absolute torture! Unfortunately, the elimination diet didn’t yield any results, and we still have not been able to identify any specific triggers. I have noticed that some of the things that also irritate my nose and mouth can irritate it, but not every time. Hopefully, we’ll figure it out soon.
(Discovered I am not lactose intolerant or even sensitive, instead, we discovered I am allergic to all aged cheeses. Discovered this was causing the symptoms about 10/2015.)
Lactose is the naturally occurring sugar found in mammals’ milk. Lactose intolerance means that the body cannot digest lactose at all, whereas sensitivity means that the body struggles with digesting lactose. In individuals with lactose intolerance/sensitivity, their body does not produce enough (or any) of the enzyme lactase to breakdown the lactose into usable materials. Symptoms of lactose problems occur shortly after consumption of products containing lactose (shortly can be a few minutes to a few hours) and include stomach/intestine cramps, nausea, vomiting, bloating, gas, and diarrhea. The symptoms aren’t always present at the same time, which can make the connection tricky. Lactose sensitivities are fairly common in adults, because as we get older our body does not find the need to continue production of lactase (which we need to digest our mothers’ milk). Luckily, taking lactase pills/tablets prior to the consumption of lactose can minimize or eliminate the negative side effects.
We have not been able to determine if I am fully intolerant to lactose, but we noticed when I added dairy back into my diet at the end of the elimination diet. If you don’t consume lactose on a regular basis, your body can suddenly decide you don’t need lactase and stop its production. We’re hoping that I might be able to convince my body to “outgrow” it (not always possible, but one of my friends did so I’m hopeful).
The Rest of the Story
Please check out my Invisible Illnesses board on Pinterest for even more information (and some chuckles) about my conditions.