Mastocytosis Community
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959034 tn?1253675076

Different types?

How many different types of mastocytosis? How is it diagnosed? How is mcad diagnosed?
4 Responses
Avatar universal
Just moving this up for you as I am interested to
Avatar universal
Anyone have food allergies causing mast cells in stomach ?
My daughter is having problems from eating most food..limited to a few things..has lost more than 15 pounds.
Where we live this is almost unheard of and she must go somewhere else to get answers.
I am so thankful to find this forum...anyone else out there with this problem ?
Help please.
Avatar universal
My 7 year old son has systemic mastocytosis (with associated myeloproliferative disorder) and has a lot of stomach issues.  Many foods cause mast cell degranulation.  Additionally, high histamine foods can cause problems for those with mastocytosis. An all natural, low histamine diet has worked wonders for my son.  Dyes and preservatives have a major effect on his tummy issues.  Additionally, gastrocrom (cromilyn sodium) is a very helpful medication.  He also takes nexium and ranitidine for his stomach daily as well as promethezine to stop vomiting.  

Weight loss has always been a problem for him because his body does not absorb the nutrients in foods the way it should.  We do an extremely high calorie diet (often 4000 calories--and he is only 45 pounds!), and see a nutritionist who makes food recommendations.  My son actually is supposed to eat 7-8 times a day!  Additionally, they are about to start him on a medication that  is supposed to increase his appetite.  (he eats like a pig already!)

You can get quite a bit of information from NIH and might be able to get your daughter into a clinical trial there.  
Avatar universal
   My son is just coming of t.p.n., has masto of the G. I and I dont know what to feed him now. Could you give me a few foods for breakfast, lunch and dinner please.

thank you,

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