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What did you guys think about the latest video concerning the new mast cell disorders protocol? Heads up on MCAS mediator (-). I think this one affects many of us (our blood work and urinalysis are normal). Dr. Castells and Akin no longer see patients with MCAS — only pre-diagnosed systemic mastocytosis. Yikes.
Hey Dr. D,
I watched your latest video last week – it was very helpful as we were preparing for Emily’s appt with the allergist this week. The visit didn’t go as well as I had hoped, but I was prepared for this doctor to be clueless about MCAS. She clearly didn’t think gastrocrom was necessary right now and wanted to do blood work before she made any decisions. I have heard really positive things about this doc that make me want to give her a bit more of a chance before I move on to another doctor. And she (personally) called me at home to suggest a couple other things she thought of after we left the office. So, she really is ‘thinking’ and not just shoving Emily aside and that is a start.Anyway, the initial bloodwork was normal (no surprise there). The doc also has ordered a 24 hour urine test to rule out carcinoid and other stuff, which is fine by me. She also wants us to do a serum tryptase immediately following a severe flushing episode, which I think is a great idea. Probably will be normal but is probably our best chance of actually catching something lab-wise. Her other suggestion is to keep a food diary and record when Emily has an episode of abdominal pain, dizziness, flushing, etc. She is again having frequent food reactions so we just have to wait for a severe one. Shouldn’t have to wait long 🙁 Her birthday is this week and she has requested a fruit plate instead of cake, because she knows it will make her sick. How sad is that?
My plan is to keep extensive records of these food reactions, plus pictures of every visible flushing episode my daughter has for the next few weeks. We also will be keeping records of all flushing episodes since it is not only caused by food and any non-food reactions that cause dizziness, etc. I am going to drop off copies of the Driscoll Theory and a couple other articles for the doctor – I had them with me at our appointment but figured it was pointless. Then she called with her additional ideas and I regretted not sharing them with her, because I think she will actually look at them and may even be convinced.
So, here is my question – is there any other testing we need to be doing right now? I sort of feel that the testing is likely to be normal and the symptoms are what we need to be looking at but docs have to do the testing. Very frustrating – the doctor and nurse both seemed to feel that I should be over-the-moon happy because my daughter most likely doesn’t have masto. Ummm, great. But, if she has all of the same symptoms and you won’t treat her and she remains miserable… Well, forgive me for not thinking that is awesome!
Thanks for all of your help, Dr. D – Emily’s life has improved so much since we found your theory. We will head into 2012 with hope, something we really did not have a year ago!
So, here is my question – is there any other testing we need to be doing right now? I sort of feel that the testing is likely to be normal and the symptoms are what we need to be looking at but docs have to do the testing. Very frustrating – the doctor and nurse both seemed to feel that I should be over-the-moon happy because my daughter most likely doesn’t have masto. Ummm, great. But, if she has all of the same symptoms and you won’t treat her and she remains miserable… Well, forgive me for not thinking that is awesome!
Thanks for all of your help, Dr. D – Emily’s life has improved so much since we found your theory. We will head into 2012 with hope, something we really did not have a year ago!
Hi Beth, so sorry I missed this question! Most, but not all allergists are puzzled by mast cell disorders. It doesn’t help that the protocol keeps changing!! In mast cell activation syndrome mediator (-), all of the labwork can come out normal, but it the patient has symptoms (she does) and she responds to treatment (she does), then she should be treated just like a mediator (+) patient. The tests they’ll want to run (you got tryptase, that’s good) is also IgE, prostaglandin D2, and a urine-methyl-histamine — after an episode if possible. A (+) response on any of those will put her in either the mastocytosis category or MCAS mediator (+) category (and she gets a free pass to a mast cell specialist). Dr. Castells says that some of the sickest patients, though, are mediator (-)! They just need to do more research… I hope this helps! 🙂
Hi Guys,
Yet another update — Dr. Castells says she WILL see MCAS patients — her paperwork makes it look like they only see diagnosed mastocytosis, but no. MCAS is still IN!! Yea!
🙂 DianaYay! That is awesome for those who can make it to her! 🙂 Great news! Thanks for updating us!
PS…I am a moderator and STILL can’t figure out how to use smileys, lol!!
And a great moderator you are! I think our smileys “broke”. I hate it when that happens. ha. Will let the web designer know! Thanks so much… 🙂 Diana
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