Hello all hope I find you as well as can be expected . I have tested with elavated levels of Tryptase, which kind off may reinforce a finding from my colonoscopy. The doctor is repeating the test as he considers it spurious. As a reminder I have have Crohns like inflammation in small bowel and also have exocrine pancreatic insufficiency and pale stools , steatorrhea etc although not consistent. Could this finding offer an answer ?
Also I don't know if you recall I said my mum has microscopic colitis , well it turns out to be collageneous colitis.
The only glimmer of hope I have other than this Tryptase test is that my gp has agreed to refer me to UCLH HPB department instead of my current wolly brain, which on top of gastroenterology are a centre of excellence in the uk for pancreatic issues. This of course will only happen once my current gastroenterologist has had a final chance to prove himself with a capsule endoscopy which he insists will show the problem. Personally I think he's loading his own gun that I am gonna shoot him with.
Mast Cell Activation and Mastocytosis , A fad or Science
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Hi Jim,
Tryptase (as I assume you are aware) is an indicator of inflammation associated with mast cell degranulation. Normally, even in mastocytosis patients, it's difficult to time a blood draw to coincide with an elevated tryptase level because in most cases, the tryptase level peaks in about 2 hours after an allergic event is triggered, and then the level declines. IOW, elevated tryptase levels are usually a transient event. If a blood draw is made too soon or too late, the results will be negative, making mastocytosis diagnosis rather difficult because of the relatively small window of opportunity.
A positive test result is typically difficult to replicate in most cases because of the transient nature of tryptase-associated events, so don't be surprised if a followup test is negative. If you had a test result showing an elevated tryptase level (even if it occurred in the absence of an allergic reaction accompanied by anaphylaxis), you almost surely have either mastocytosis or a severe case of mast cell activation disorder (MCAD). Please be aware that very, very few physicians (including allergists and other specialists) understand mast cell issues and mastocytosis diagnosis and treatment.
Your test result was almost surely transient, but unlikely to be "spurious" (although virtually any test result can be corrupt due to human error). If you have mastocytosis (or MCAD), the functioning of virtually any organ in the body can be disrupted (including the pancreas).
To reach a valid diagnosis, your doctor needs to verify that mast cells in biopsy samples are present not as individual cells, but aggregated (in clusters, or in "sheets" in the lamina propria). Staining for CD117 (aka KIT) and CD25 will facilitate mast cell analysis. A pathologist may be able to restain and reexamine some of your existing biopsy samples.
Here's some basic information on tryptase. I apologize if you are already familiar with this.
Mast cell tryptase: a review of its physiology and clinical significance.
The article at the following link is based on "IBS" patients (unfortunately), but it explains how to diagnose mastocytosis in the GI tract.
A Clinicopathologic Study of 24 Cases of Systemic Mastocytosis Involving the Gastrointestinal Tract and Assessment of Mucosal Mast Cell Density in Irritable Bowel Syndrome and Asymptomatic Patients
I agree with you that capsule endoscopy is very, very unlikely to provide any useful information. A microscope is the tool of choice for diagnosing or ruling out mastocytosis.
Tex
Tryptase (as I assume you are aware) is an indicator of inflammation associated with mast cell degranulation. Normally, even in mastocytosis patients, it's difficult to time a blood draw to coincide with an elevated tryptase level because in most cases, the tryptase level peaks in about 2 hours after an allergic event is triggered, and then the level declines. IOW, elevated tryptase levels are usually a transient event. If a blood draw is made too soon or too late, the results will be negative, making mastocytosis diagnosis rather difficult because of the relatively small window of opportunity.
A positive test result is typically difficult to replicate in most cases because of the transient nature of tryptase-associated events, so don't be surprised if a followup test is negative. If you had a test result showing an elevated tryptase level (even if it occurred in the absence of an allergic reaction accompanied by anaphylaxis), you almost surely have either mastocytosis or a severe case of mast cell activation disorder (MCAD). Please be aware that very, very few physicians (including allergists and other specialists) understand mast cell issues and mastocytosis diagnosis and treatment.
Your test result was almost surely transient, but unlikely to be "spurious" (although virtually any test result can be corrupt due to human error). If you have mastocytosis (or MCAD), the functioning of virtually any organ in the body can be disrupted (including the pancreas).
To reach a valid diagnosis, your doctor needs to verify that mast cells in biopsy samples are present not as individual cells, but aggregated (in clusters, or in "sheets" in the lamina propria). Staining for CD117 (aka KIT) and CD25 will facilitate mast cell analysis. A pathologist may be able to restain and reexamine some of your existing biopsy samples.
Here's some basic information on tryptase. I apologize if you are already familiar with this.
Mast cell tryptase: a review of its physiology and clinical significance.
The article at the following link is based on "IBS" patients (unfortunately), but it explains how to diagnose mastocytosis in the GI tract.
A Clinicopathologic Study of 24 Cases of Systemic Mastocytosis Involving the Gastrointestinal Tract and Assessment of Mucosal Mast Cell Density in Irritable Bowel Syndrome and Asymptomatic Patients
I agree with you that capsule endoscopy is very, very unlikely to provide any useful information. A microscope is the tool of choice for diagnosing or ruling out mastocytosis.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.