The fact that you took Benadryl and could breathe means that and H1 antihistamine makes your symptoms better. And that is one of the criteria for MCAS—if you respond positively to antihistamine treatment then you should continue on that treatment regimen. I’m on high doses of H1 and H2 antihistamines and xolair but I still need steroids and inhalers to control the breathing issues. Even in the research protocols it includes that additional complications need to be addressed. I’m glad that Benadryl gives you some
relief!!!! That’s hope. So continue being hopeful — that’s what life is about. I will pray that you get answers and treatment soon.

Most doctors say the labs are normal because they aren’t actually taking the Right labs. Some then assume it is anxiety. And some of the chemicals mast cells control in our bodies do cause anxiety and or depression as well as hundreds of other chemicals that effect various systems all over our bodies, so it’s understandable that doctors would be confused.

Did they test your prostaglandin levels? Most doctors dont. They need to take labs both when you are at your least symptomatic (for a baseline) and within one to four hours after a reaction. Tests they should order include prostaglandins (pgd2 and pfd2 I believe) as well as tryptase(which is often the only one most doctors test for but that is incorrect), N METHYL hystamine levels and whether your symptoms improve when treated. Some of these tests need to be kept chilled during storage, transport and delivery including the 24 hour urine or a preservative can be placed in the urinalysis collection jugs before use. It can also be helpful to know your leukotirine levels, even tho to isn’t a diagnostic criteria for any mast cell disorders, because if it isn’t high certain medications might help you more such as Singulair/montuklast or Zyflo/Zileuton ER.

Caution when trying new foods and treatment, it’s best to change one thing at a time. It helps to determine what our triggers are and the best Advice I was given when I first was seeking diagnosis, was to keep a symptom and trigger journal. I like the app called “MySymptoms” for that because it allows you to print your tracking or graphs of your symptoms to share with doctors.

Treatment includes identifying and avoiding triggers, certain medication, and treatment of symptoms. Improving on Benadryl, an h1 blocker, fulfills one of the criteria of diagnosis. 1st tier h1 and h2 blocking medications would include things like Allegra, Zyrtec or the like, and Zantac or Pepcid. Many also find Atarax or Hydroxyzine helpful, and Benadryl, an epi Injector and steroids are common rescue medications. Most also are put on singulair or it’s generic or something similar like Zyflo. Some find the shot called xolair useful, although a side effect of xolair can Be anaphylaxis, most mcas patients do well on it.

Many of us react to excipients like preservatives or fillers in the over the counter versions, but respond well to the pure ingredients, and some of us react even to certain medications in their pure form. So it’s been best to try one at a time, and always have your rescue medication so on hand just in case. Doctors often say a medication is safe or “no one reacts to that” but mast cell patients can react to tiny amounts of their triggers, which can be practically anything. Check out thr blogger mastattck.org for a lot more helpful info like testing and treatment and an emergency protocol and the like. I hope you find answers soon.