Hi Friend,
It is the most frustrating conversation in chronic illness.
You sit in a doctor's office, listing symptoms that are ruining your quality of life: chronic hives, sudden digestive issues, brain fog that feels like sedation, heart palpitations after eating, and fatigue that feels like the flu.
The doctor looks at your standard blood panel and says:
"Good news! Everything looks normal. It’s probably just stress."
But you don’t feel normal. You feel like your body is fighting a war. And deep down, you know it isn't "just stress."
You aren’t crazy. You are likely dealing with the "Testing Gap."
At Mend Clinic, we see this story every single day. Patients with hEDS and signs of Mast Cell Activation Syndrome (MCAS) go undiagnosed for years because standard medicine relies on the wrong data.
Why Standard Medicine Misses MCAS
If you have hEDS or suspect MCAS, a basic CBC (Complete Blood Count) rarely tells the whole story. Here are the three reasons why so many of our patients slip through the cracks of the standard medical system:
1. The "Tryptase Trap"
Most general practitioners only check for Tryptase. While high Tryptase indicates Mastocytosis (a rare condition where you have too many mast cells), it is often completely normal in MCAS. You can have severe, life-altering reactions with a "perfect" Tryptase score.
2. The "Disappearing" Evidence
Mast cell mediators (chemicals like histamine, prostaglandins, and heparin) are incredibly volatile. If the lab doesn't chill the blood immediately—sometimes within minutes of the draw—the chemicals degrade before they are even tested. A "negative" result often just means the sample wasn't handled correctly.
3. The Clinical Picture
MCAS is, first and foremost, a clinical diagnosis. It requires a doctor to look at the pattern of symptoms across multiple body systems (skin, gut, brain, heart), not just a single number on a page.
How We Do It Differently
At mend clinic, we don't treat lab results; we treat people.
We specialise in complex, multisystemic conditions like hEDS and MCAS. We understand that a Zebra's body doesn't play by the standard rules.
Our Approach:
Deep Dive History: We listen to your story about triggers (foods, smells, temperature changes) rather than dismissing them.
Precision Testing: We know exactly which mediators to test for and—crucially—how to handle the samples to ensure accuracy.
Trial & Response: We use safe, guided therapeutic trials of mast cell stabilisers to confirm the diagnosis based on how your body actually responds.
Stop Guessing. Start Healing.
You do not have to live with the fear of your next reaction. You do not have to navigate this alone.
If you are tired of being told you are "fine" when you know you aren't, it is time for a second opinion from a specialist who speaks the language of Mast Cells.
We are currently accepting new patients for comprehensive evaluations.
🦓 The "Flare" Hack: The 24-Hour Recall
While you wait for your appointment, start building your own data.
Standard food diaries often fail because MCAS reactions can be delayed. instead of just tracking what you eat, track "The Bucket."
If you have a reaction at 4:00 PM, look back at the last 24 hours.
Did you sleep poorly? (Histamine rises)
Was it hot outside? (Heat trigger)
Did you wear tight clothes? (Pressure trigger)
Then look at the food.
Bringing this "Total Load" data to your appointment helps us spot the patterns faster.
As Always stay well, if you would like me to cover specific topics in future newseltter’s please reply and let me know
Dr Ahmed
