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Mast Cell Activation Disorder - Diagnosis Finally

Location
Texas
Well it has been awhile since I have talked on the forum. I have just been totally exhausted with being sick with no quality of life to speak of.

After pushing my GI - she sent me to an Immunologist - I really like her. After a lot of blood tests and 3 -24HR Urine Collection. I'm happy to have a diagnosis but I still have all of the other conditions going on (which hopefully will get better). I found out a month ago and am on in addition to my regular meds:

Zantac - 2x day
Claritin - 2x day
Flonase - 1x day
QVAR Inhaler 1x day
Singular - 1x day
Pro Air - as needed

Some of these may need to be changed as I am not improving at all yet. In all honestly, I have been extremely overwhelmed at the amount of foods, etc that I may be reacting to. I'm keeping a food journal and continuing my daily journal of how I feel etc. I'm extremely stressed out so my Dr wants me to take a Klonipin daily to keep my stress down as I know this is a known Trigger for me. I thought I was overwhelmed with Crohn's/LC - but the Mast Cell has sent me to a realm that I never knew existed.

The amount of items including hot/cold and histamine rich/histamine releasors. It could even be my soft/bed - the amount of items are overwhelming. My GI spent 45 minutes with me making a plan - step by step - day by day. I am starting to see Triggers which I had thought was just the GI problems - this does make me a little happier - she says a minimum of 6 months to figure some of this out. Just the amount of items are crazy.

I had my worse experience last night - my granddaughter said "you are turning red" at 8:30 last night. Today I woke up at 6am severely sick for 50 minutes in the bathroom and could not get out of bed until 2pm. I'm severely fatigued just as a normal process of my diseases before.

I bought 2 books to try and understand what happens (especially explaining this to others - way above our heads). I'm feeling more informed now so I hope I can bring my stress level under control.

I have not had the Bone Marrow Test yet - it terrifies me. I'm just going to try and learn and keep positive and watch Comedies. I hope to be able to give Yoga a go again on YouTube if I can get some improvement on the fatigue.

If anyone has any suggestions - I'm all ears!! :ywow:
 
Oh my you have a lot going on. I'm so sorry. I'm just weighing in on the bone marrow biopsy. I had one about ten years ago and it really wasn't at all painful. It was done in an exam room, and the friend who was driving me actually stayed in the room. My hematologist numbed the area very thoroughly, and I felt nothing. My lower right back was sore afterwards, but I actually went to Whole Foods on the way home. It was a very simple procedure for me, I hope that description helps.
 
Location
UK
I have mast cell problems and they are such a pain!!!! I'm on ranitidine, fexofenadine and nalcrom for my mast cell problems but I still get rashes and GI pain. Hope things improve
 

my little penguin

Moderator
Staff member
Most who have mcas take cromolyn or ketiferen(sp?)
Here is a paper explaining mcas

http://www.mastocytosis.ca/2011 MSC Medical Lecture with Slides.pdf


And this
http://williams.medicine.wisc.edu/mast_cell_activation_2011.pdf

Do you see a mast cell specialist ?
There are only a few in the US

Some use elemental formula to calm the gut and mast cells in addition to meds
Adding one food at a time (easier to identify triggers that way )
Ds was suspected to have mcas
They aren't convinced he doesn't have it
But not enough evidence yet to rule in or out
He has been taking the new meds you added for years
Only dymista (which has an additional antihistamine in it ) Flonase does not
He takes Zyrtec (more effective for him than Claritin )
Zantac
Flovent
Singular
Dymista
Patanol
Albuterol as needed

He has not started cromolyn since that is specfic to mcas


He does drink neocate jr (elemental formula ) while he added things back to his diet and now has 50/50 (formula and food )

Good luck
 
Location
Texas
My Immunologist trained at the Mayo Clinic and works with Dr. Mariana Castells - Boston/Harvard so I feel she knows her stuff. Thank you for the information - obviously it is overwhelming and any additional info is helpful. I may need to change to Zyrtec and Dymista.

Thanks for the links - I'll check them out!
 
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