mast cell at any age?

[Loulou]

Hi, just want to vent.  My husband was just diagnosed with Mast Cell Activation. But I feel he was only tested for it because he was covered head to toe with urticaria for the past 7 months.  But for many years he had abdominal pain and diarrhea, he was checked for IBS and other stomach and bowel issues, but never for mast Cell.  Has anyone here gone through the same abdominal issues before you were actually diagnosed and what is your worst symptoms.  I have POTS and IST myself so I was already here in the group. And find that the mast cell peeps may be able to help me make his day to day issues a little better.  Any advice or things that has helped you mast cell peeps feel better please let me know.  My husband has always been the healthiest person I knew and it is hard to see him dealing with this.He is in the early stages of diagnoses, so I am just wondering if all these years these stomach issue were mast cell.  His second serum tryptase came back high again and his C-Kit came back negative so thankfully they say this means it is not mastocytosis.  He has always been wide open, never slowing down even with the stomach pain and diarrhea.  He was active duty military for over 20 years. Exercised everyday while active duty and now with the job he is in, he works so much over time he does not have time for any type exercise.  So could that cause him to just begin to have severe uticaria?  And is Mast cell something that can happen at any age? He is 46 and had never had urticaria until 7 months ago.  Right now, he is coughing and weak, always tired.  The stomach pain and diarrhea comes and goes. The uticaria is finally under control after a month on tons of antihistamines and steroids. He will be seeing a hematologist soon who will verify the diagnosis is mast cell and not mastocytosis. Zyrtec has helped him the most so far. Just hope it stays under control.  I am in need of words of wisdom. How can I help him.

[DizzyGirls]

My daughter (21) has MCAD, too.  She was tested back in 2011 by her PCP.  Why?  I'm not sure at that time.  But, her level was 17 back then.  She was recently tested for about the third time and it came back at 11.  She's on a lot of H1 blockers and so it should have been a lot lower, but she couldn't go off of them and I'm glad she didn't because I know that she still needs her h1 and h2 blockers.  We use Benedryl and Zantac the most.  She used to always feel like she was itching.  She never had diarrhea, quite the opposite.  But, she has always had stomach issues.  She has EDS, also.  She had a bone marrow biopsy about 3 years ago because of her levels, and her hematologist just wanted to make absolutely certain that she didn't have mastocytosis.  It wasn't, thank goodness.  We haven't tried Zyrtec for her because of all of the other medicines that she has to take, unfortunately.  But, I use Zyrtec every night.  I swear by it!  I used to save it for my rescue meds only, but I started developing vertigo and I decided to try the Zyrtec.  Worked very well.  Does your husband take an h2 blocker also?  I've also heard people taking Singulair and having success. 

Btw, thank you for your service!

[Loulou]

DizzyGirls, 

Hi. thanks for the info.  He was on Claritin, pepcid, Singulair, the prednisone taper, and he is having no milk or milk products, plus Benedryl when his lips or face began to swell. He was close to anaphylaxis for weeks there, two emergency room visit for epi shots and finally we got it under control and he is keeping it at bay right just on the Zyrtec and pepcid.  He did try to zantac but it cause him a different kind of stomach pain and then change over to the pepcid. We ran out of pepcid so he has only been taking the zyrtec the last couple days.  So I have to pick up more today. They cost so much to take it all two times a day even after all the tapering down of the different meds.  I am starting him a food diary to try to find his triggers, but really unsure how to start.  The crazy thing is that my POTS dr thought I had mast cell and tested and began treating me for it last year some time, my serum triptase was up two times and then back to normal, so we just monitor mine and then my husband is covered head to toe. My husbands serum triptase was 14 the first time and this last time 13. He is waiting for an appointment with a hematologist and of course for our ins to authorize it. So does your daughter have the (adolescent mcad)?  I have been reading everything I can to learn more. 

[DizzyGirls]

Her hematologist didn't even really call it MCAD, so I asked her if it was safe to say that her mast cells were overactive and she said "yes".  I find that sometimes doctors don't give things an official "name" like we do, they just tell you what your body is doing.  Because my daughter wasn't having too many problems with it, she just said to take some Benedryl and Zantac and see if that helps.  It worked well.  I did notice after I had read your first post, though, that she is developing this rash on her chest.  It looks like uticaria to me.  Her other hematologist had thought she had had it once before and but changed his mind.  So now, though, think this might be.  She was taking high doses of Benedryl and, because some doctors were rather taken aback by this high dose, I've lowered it to 25 mgs 4 times a day.  I'm wondering if the new lower dose isn't enough.  I hesitate to give my daughter Zyrtec (even though I take it every night!) because she's on a lot of other meds (recovering from spinal fusion surgery-9 vertebrae).  You might try looking at Costco or Walmart for cheaper versions of  Zyrtec and Zantac.  It's super cheap at Costco if you have one where you live.  Also, there is a paper by Dr. Afrin on Mast Cell Activation Disorder that is probably the best around.  I'm not so good at putting links in, so just Google MCAD and Dr. Afrin, you'll see it.