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My son's tryptase is only 20, but he has mast cell deposits in his skin, respiratory system and especially his GI system.  The only two anaphylactic reactions he's had have been from plant contact, not foods.  He's allergic to wheat, barley, peanuts, apples, egg whites, CORN, milk, soy, chocolate, and red meat.  He's fructose and lactose intolerant.  With him, it's always a guessing game as to how much he can ingest before he reacts, but fructose, corn, corn syrup, and chocolate cause the worst reactions.  4-7 days of BMs that cause horrible burns on his butt, rashes with oozy ant-bite looking sores, and reflux.  When his reflux is bad enough, he aspirates it and ends up with a lung infection.
  He was born with tachypnea, and after months ruling out life-threatening causes, we spent the next year battling chronic infections, ER visits, hospitalizations, immune deficiencies, specialists, etc.  A reaction when he was 25 months old gave the doctors the clue they needed, and he was finally diagnosed with masto.  He is now 31 months old.

  Sorry for the length, I'm still learning how to handle all the meds and diet and keep him healthy.  Nice to have someone who knows what it's like.

My son has Mast cell activation disorder...no increased mast cells in his bone marrow but systemic symptoms.  He has cutaneous spots and has had multiple anaphylactic reactions to unknown triggers. He is on a very limited diet, and is supplemented with Neocate Splash.   A food journal is helpful to figure out triggers but the thing with masto is that triggers are more than just food; environment, stress, heat/cold, pressure, scents, chemicals, insect venom, and medicine can trigger reactions.  So a journal in general may be more helpful...include anything you think he may be reacting to.  How old is your son?  How was he diagnosed with Systemic Masto?  What is his tryptase? 

Sorry for all the questions..check out the mastocytosis board under the Anaphylaxis forum.      

Welcome!

 

Denise-  mango, insect venom  

Dh- penicillin

A -  (2003) Asthma, suspected Ehlers Danlos hypermobility type 3

R - ( 2005) EGE, GERD,Mastocytosis ( TMEP/MPCM), Asthma, Chiari Malformation I -   Zantac, Reactine, Ketotifen, oral sodium cromolyn,  Spiriva, Symbicort, ventolin, benadryl, EPI      Allergic to penicillin, Singulair, levofloxacin.    Low histamine diet, Decompression with laminectomy of C1/C2 and duraplasty  August 2017.

O ( 2008) adopted  NKA

A - (2008)adopted NKA

B- (2014)   Dairy allergy,  Mastocytosis ( TMEP/MPCM),  Reactine, oral sodium cromolyn,  Zantac, Benadryl,  Pulmicort respules, EPI   low histamine diet

Not sure how to answer that.  The diagnosis is somewhat new, the reactions are ongoing and the reactions to unknown triggers are on going as well.  I just wanted to show a few pics of what his flushing and hives look like.

 

Denise-  mango, insect venom  

Dh- penicillin

A -  (2003) Asthma, suspected Ehlers Danlos hypermobility type 3

R - ( 2005) EGE, GERD,Mastocytosis ( TMEP/MPCM), Asthma, Chiari Malformation I -   Zantac, Reactine, Ketotifen, oral sodium cromolyn,  Spiriva, Symbicort, ventolin, benadryl, EPI      Allergic to penicillin, Singulair, levofloxacin.    Low histamine diet, Decompression with laminectomy of C1/C2 and duraplasty  August 2017.

O ( 2008) adopted  NKA

A - (2008)adopted NKA

B- (2014)   Dairy allergy,  Mastocytosis ( TMEP/MPCM),  Reactine, oral sodium cromolyn,  Zantac, Benadryl,  Pulmicort respules, EPI   low histamine diet

  Eventually diagnosed with Mast Cell Activation disorder

Denise-  mango, insect venom  

Dh- penicillin

A -  (2003) Asthma, suspected Ehlers Danlos hypermobility type 3

R - ( 2005) EGE, GERD,Mastocytosis ( TMEP/MPCM), Asthma, Chiari Malformation I -   Zantac, Reactine, Ketotifen, oral sodium cromolyn,  Spiriva, Symbicort, ventolin, benadryl, EPI      Allergic to penicillin, Singulair, levofloxacin.    Low histamine diet, Decompression with laminectomy of C1/C2 and duraplasty  August 2017.

O ( 2008) adopted  NKA

A - (2008)adopted NKA

B- (2014)   Dairy allergy,  Mastocytosis ( TMEP/MPCM),  Reactine, oral sodium cromolyn,  Zantac, Benadryl,  Pulmicort respules, EPI   low histamine diet

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Kids With Food Allergies
A Division of the Asthma and Allergy Foundation of America
1235 South Clark Street Suite 305, Arlington, VA 22202
Phone: 1-800-7-ASTHMA (1.800.727.8462)
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