What is EOE & MCAS?
EoE stands for Eosinophilic Esophagitis
While EoE is an immune disease, it is not to be confused with neither autoimmune disease or IgE mediated allergies. EoE is when there is a large number of eosinophils, which is a white blood cell, is present in your esophagus. The presence of eosinophils can cause inflammation, damage, and pain.
EoE is an allergic response from specific food and even environmental triggers. When a person is exposed to a trigger their body sends eosinophils to "attack" the invader. When this occurs the patient may experience vomiting, GERD, difficulty swallowing, food impactions, coughing and throat clearing, abdominal pain, anemia and many other symptoms. Other symptoms for pediatrics is: poor growth and delayed milestones.
The only way to diagnose EoE is through an endoscopy & biopsy which measures the number of eosinphils per sample. 12 eosinphils or greater is EoE.
Treatment includes steroids, PPI, elimination diet, or elemental diet (liquid diet and/or G-tube). Sometimes it includes more then one listed treatments.
For more information please visit Cured Foundation:
https://curedfoundation.4mobilesites.com/
MCAS/D
MCAS stands for Mast cell Activation Syndrome/Disorder
This is another immune disease within the white blood cells, specifically the mast cell. It is characterized by an over-reactive mast cell which releases chemicals such as, but not limited to, histamine.
A common metaphor for MCAS is a bucket. Imagine your mast cells constantly pouring chemicals into this bucket until its over spilling. When the bucket is over spilling we see a patient reacting to everything in their environment repeatedly and intensely. Lets say within a week they have 5 more allergic reactions followed by anaphylaxis. Most people have the inability to drain the bucket on their own, and thus with Atticus for three years we kept his bucket from over spilling but it was still very much full. He was always in a delicate state because the slightest wrong move would cause it from spilling forth again. We lived carefully within his limitations. Mast cell stabilizers alongside with antihistamines are very helpful to finally and fully drain the bucket, allowing the body to absorb new foreign and old exposures of their environment.
Allergic reaction symptoms: Hives, flushing, lethargy, confusion, anxiousness, swelling, rash, dizziness, breathing difficulties, shortness of breath, "crunchy breathing", wheezing, cough, runny nose, low blood pressure, fast heart rate, paleness, vomiting, diarrhea, stomach pain, tight/hoarse voice, body itchiness
Anaphylaxis is any breathing difficulties, any one extreme symptoms OR two or more mild symptoms of anything listed above
Triggers: food, chemicals, fragrance, pollen, pollutants, exercise, temperature changes, extreme temperatures, venom (bug bites), odors, medication, topical friction/irritation
Before I conclude this brief description of MCAS, I want differentiate that MCAS can appear differently then a simple onset of common allergies. There was a day Atticus was completely listless and fatigued, he just couldn't move, didn't talk much, didn't want to be held, was very, very pale, his personality was "empty." He looked completely miserable. That morning we find him just laying on his bedroom floor staring at the ceiling. He didn't want to talk or move, yet he didn't describe any pain or sensations. There was a big meltdown when I told him that it was time to go downstairs (were we spend our day). There was no rationalizing with him nor was comforting him getting us anywhere. So finally I had to carry him downstairs and placed him on the beanbag. At first I thought it was just a hard morning.. but Atticus didn't move from that spot all day. He then had several accidents in the beanbag because he didn't have the energy to move. Well, after a bowel movement in the beanbag we told him we had to change him, we were surprised at his response as cried because he didn't want to stand up. Real, gutteral tears flowed from my three year old who just could not bear the physical requirements of changing his pants. That was the last straw for me, all my mama alarms were firing. I called his doctor's personal cell phone and she was alarmed at what I reported, but she suggested trying benadryl before we did anything else. 30 minutes after the benadryl, my child returned to himself, he even exclaimed, "I FEEL SO MUCH BETTER NOW!"
Since then, we have seen these episodes a few times and they have always resolved with 3 days of Benadryl. And that's how we learned that MCAS was more then just allergies. We have also learned his warning signs that his bucket is getting full: red rashes (not eczema), flushing episodes, new food allergies, sneezing at every meal, fatigue, and random hives.
MCAS is a complex disorder and has many more variations. This is simply what Atticus's MCAS looks like for him. To read more please visit:
https://www.mastcellaction.org/about-mcas
Below are some helpful images I found, I do not own!