I told you guys in Robin's thread about my correspondence with my doctor, and the fact that he won't look to see if I have Barrett's.
Well, I wrote to him to tell him I am seeing blood in my stool and asked if he thinks it can be an internal hemorrhage or something that needs to be looked at. His answer? I had a "normal" colonoscopy exactly a year ago, so eat more fiber.
I think Kaiser has said I can't have any more scopes because of money, although he hasn't said it. I don't want a colonoscopy, but I DO want to know if I have Barrett's, so that they know the diagnosis and can't deny needs to be watched.
He ordered a mast cell blood draw, which I did a few days ago. I don't have the results yet.
Is the blood test definitive?
I always get a post nasal drip at this time of year. I have "environmental" allergies, although I don't show up as allergic.
If I don't suck on something the pain gets bad, and I get so nauseous. I struggle not to vomit because when I do it hurts SO much!
What do I do now? Go to someone privately?
Breaking down...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Was it a test for tryptase? A tryptase test is an indirect way to measure histamine release, and it should be reliable if it's done at the right time. The tryptase enzyme level will fade away after a day or so, following a reaction.Lesley wrote:Is the blood test definitive?
You're really being kicked around by your doctor and your insurance plan. I don't know what to suggest - a letter to your congressman or senator?
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.
Hi Lesley,
Sorry you're suffering and dealing with a difficult doctor...we can all relate.
Do you have more details about the "mast cell draw" your doctor did? I agree with Tex, it was likely a tryptase test, but that tells one very small part of the mast cell (MC) story. Tryptase is typically very high in those rare patients that have systemic mastocytosis (SM) and have just had a severe flare. (Like anaphylaxis.) Even in those rare patients with SM it can be a hard number to capture in an elevated state, as it fluctuates with MC activity.
If you have concerns you may have MC issues, there are other tests to consider. I have extracted a table from an article written by the MC doctor I see that outlines the proposed criteria for diagnosing MC disorders. If you look at #4 under "Minor Criteria" for "Mast Cell Activation Syndrome" you will see some of the serum/urine tests that are suggested to aid in diagnosis. Here's the link:
http://www.ncbi.nlm.nih.gov/pmc/article ... /table/T2/
Entire article if you are interested: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
Essentially what those tests look for are the mediators that are released by mast cells when they degranulate. IOW, if you have very active MCs (or too many MCs) that are releasing their contents, then that may be evident in your blood/urine. In my case, everything has shown up; tryptase (evident but not high enough to indicate SM), histamine, chromagranin A and heparin. All of that, along with my symptoms, helped seal my diagnosis of a mast cell disorder.
The average doctor doesn't know much about MCs, so if you really want to pursue that issue, then take the table (or entire article) to your doc and see if he would run some of the tests. (BTW, the urine collection for methyhistamine is a 24 hour urine; don't settle for a one time "go in a cup" test. Also it needs to be sent to Mayo for accurate results.)
Hope that helps clarify a little about MC testing.
Sending you good thoughts for better days!
Julie
Sorry you're suffering and dealing with a difficult doctor...we can all relate.
Do you have more details about the "mast cell draw" your doctor did? I agree with Tex, it was likely a tryptase test, but that tells one very small part of the mast cell (MC) story. Tryptase is typically very high in those rare patients that have systemic mastocytosis (SM) and have just had a severe flare. (Like anaphylaxis.) Even in those rare patients with SM it can be a hard number to capture in an elevated state, as it fluctuates with MC activity.
If you have concerns you may have MC issues, there are other tests to consider. I have extracted a table from an article written by the MC doctor I see that outlines the proposed criteria for diagnosing MC disorders. If you look at #4 under "Minor Criteria" for "Mast Cell Activation Syndrome" you will see some of the serum/urine tests that are suggested to aid in diagnosis. Here's the link:
http://www.ncbi.nlm.nih.gov/pmc/article ... /table/T2/
Entire article if you are interested: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
Essentially what those tests look for are the mediators that are released by mast cells when they degranulate. IOW, if you have very active MCs (or too many MCs) that are releasing their contents, then that may be evident in your blood/urine. In my case, everything has shown up; tryptase (evident but not high enough to indicate SM), histamine, chromagranin A and heparin. All of that, along with my symptoms, helped seal my diagnosis of a mast cell disorder.
The average doctor doesn't know much about MCs, so if you really want to pursue that issue, then take the table (or entire article) to your doc and see if he would run some of the tests. (BTW, the urine collection for methyhistamine is a 24 hour urine; don't settle for a one time "go in a cup" test. Also it needs to be sent to Mayo for accurate results.)
Hope that helps clarify a little about MC testing.
Sending you good thoughts for better days!
Julie
I'm pretty sure that's why her doctor agreed to do the test. He expects a negative result, and that will accomplish his goal - to get Lesley off his back.Julie wrote:Tryptase is typically very high in those rare patients that have systemic mastocytosis (SM) and have just had a severe flare. (Like anaphylaxis.) Even in those rare patients with SM it can be a hard number to capture in an elevated state, as it fluctuates with MC activity.
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.
Right now I am concerned with getting a dx for Barrett's so it can be watched. The mast cell issue is important since it may help me feel better, but is a distraction from what I feel is the most important issue for me right now. I feel terrible, but it won't kill me, even though I feel like I am dying.
I am in what passes for a flare right now. I am having BMs, but they are formed, though soft.
But I feel really bad,with gurgling and pain etc.
I agree with Tex - Kaiser is telling them NOT to test to save money, and he is trying to get me off his back.
I am in what passes for a flare right now. I am having BMs, but they are formed, though soft.
But I feel really bad,with gurgling and pain etc.
I agree with Tex - Kaiser is telling them NOT to test to save money, and he is trying to get me off his back.
Lesley,
I remember you saying you had really bad GERD and a fundoplication didn't work. Just curious - did your doctor rule out eosinophilic esophagitis? That's another one of those diagnoses that's frequently missed.
Mary Beth
I remember you saying you had really bad GERD and a fundoplication didn't work. Just curious - did your doctor rule out eosinophilic esophagitis? That's another one of those diagnoses that's frequently missed.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Mary Beth,
I don't think he looked for that. At least he never mentioned it. Come to think of it he didn't mention Barrett's until I did. I can ask him. Not that I think he will give me the time of day.
I am trying top picture the pain with EE. This is burning all the way down. That is exactly Barrett's. Dysphagia caused by a blockage, it seems to me, would cause a different type of pain, wouldn't you think?
BTW - Meg is having trouble finding a phlebotomist to draw my blood. Weird that there are only 2 LEAP certified nutritionists in this area, and NO LABS!
I don't think he looked for that. At least he never mentioned it. Come to think of it he didn't mention Barrett's until I did. I can ask him. Not that I think he will give me the time of day.
I am trying top picture the pain with EE. This is burning all the way down. That is exactly Barrett's. Dysphagia caused by a blockage, it seems to me, would cause a different type of pain, wouldn't you think?
BTW - Meg is having trouble finding a phlebotomist to draw my blood. Weird that there are only 2 LEAP certified nutritionists in this area, and NO LABS!
Hi Lesley,
I feel your pain through the internet! This is All very fustrating! Especially when you dont have anyone in your corner to help you! It sucks! At least i have a great insurance plan! I dont know what to say to you! If you were a millionaire i would tell you to go privately! But that is way to expensive
Fell better,
Robin
I feel your pain through the internet! This is All very fustrating! Especially when you dont have anyone in your corner to help you! It sucks! At least i have a great insurance plan! I dont know what to say to you! If you were a millionaire i would tell you to go privately! But that is way to expensive
Fell better,
Robin
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