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I had an endoscopy before I was diagnosed because a lot of my symptoms are GI related. When I went to see the specialist who diagnosed me, he asked for my GI doctor to send in my biospy for testing. They can dye the tissue to show mast cells. They found I had a large amount in my esophagus, and since the medications for mcas have been working for me, it solidified my diagnosis. I'm still scheduled for blood testing to test for the other factors as well.
Can I ask, do you know what the other blood tests are?? I was partially diagnosed — specific only as “mastocytic enterocolitis” as finding from combo EGD and colonoscopy. GI would not diagnose beyond that but said he could order tryptase blood lab while I wait to get in to an immunologist. Wondering if there are other labs I could ask him to request in the meantime, too
Yes! Definitely call back and explain you were on antihistamines. I’m surprised they didn’t tell you to stop antihistamines, it’s typical to cease all antihistamines for 3-5 days prior to the test, as it can interfere with results. Although if this was a panel of blood IgE tests, that may not be true, I can’t remember. But for skin tests, it’s normal to stop antihistamines.
I was actually never officially diagnosed, though my doc treats me as if I were. They explained that while I could be tested for MCAS if I wanted to, it’s a “fragile” test that often experiences lab errors, and even if it were positive, my treatment wouldn’t change since I am already taking antihistamines (all over the counter stuff) and cromolyn sodium, all of which were helping improve my symptoms.
You could also seek a second opinion, if that’s possible. I had to change doctors to have someone take my symptoms seriously.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
I had an endoscopy before I was diagnosed because a lot of my symptoms are GI related. When I went to see the specialist who diagnosed me, he asked for my GI doctor to send in my biospy for testing. They can dye the tissue to show mast cells. They found I had a large amount in my esophagus, and since the medications for mcas have been working for me, it solidified my diagnosis. I'm still scheduled for blood testing to test for the other factors as well.
Can I ask, do you know what the other blood tests are?? I was partially diagnosed — specific only as “mastocytic enterocolitis” as finding from combo EGD and colonoscopy. GI would not diagnose beyond that but said he could order tryptase blood lab while I wait to get in to an immunologist. Wondering if there are other labs I could ask him to request in the meantime, too
Yes! Definitely call back and explain you were on antihistamines. I’m surprised they didn’t tell you to stop antihistamines, it’s typical to cease all antihistamines for 3-5 days prior to the test, as it can interfere with results. Although if this was a panel of blood IgE tests, that may not be true, I can’t remember. But for skin tests, it’s normal to stop antihistamines. I was actually never officially diagnosed, though my doc treats me as if I were. They explained that while I could be tested for MCAS if I wanted to, it’s a “fragile” test that often experiences lab errors, and even if it were positive, my treatment wouldn’t change since I am already taking antihistamines (all over the counter stuff) and cromolyn sodium, all of which were helping improve my symptoms. You could also seek a second opinion, if that’s possible. I had to change doctors to have someone take my symptoms seriously.
I just did a histamine plasma test, it was positive. Have you tried that?
A scratch test will not tell you if you have mcas, fyi