Hello everyone.  I am a newbi to this site.  my son has been recently diagnose with Mastocyctic enterocolitis.  so we are new to this and just looking for some answers and support.

his name is Avery and he's 15 years old.  his primary symptoms are abdominal pain, cramping, severe diarhea, achy joints, headaches, some flushing and mouth sores.  the dr.s here at first thought he was faking and wasn't taking him serious, he had been on all kinds of meds and no relief.  so many dr. visits, er visits, and it was really taking a toll on him and me knowing my son was not faking and not being able to get him some relief.  his blood has been taken so many times. so many tests done and finally our primary physician took us serioulsy, after mom here getting perturbed. lol  

so he researched this disease and when performing my son's colonoscopy ran the special stain and there it was.  the excessive amount of mast cells.  he put him on pepcid, zyrtec, resyzt, and gastrocrom.  what a difference these meds have made.  we have been to the allergy dr and everything is good there and we have been referred to a pediatrician gastroenterologist and he also confirms #1 dr. diagnosis.

so far so good my son is doing.  but we have had a wild ride with drs and then the school system here because they also thought he was faking and then when the dr. put my son homebound for 8 weeks oh thats another story in itself.

but now i wonder since everything seems to be fine, if we are going to do the bone marrow test now.  also in doing my own research, my son gets headaches alot; is this part of the disease? and i had read where they are not suppose to take ibuprofen or tylenol is this true and if so, what is he suppose to take for relief??
 any information will be greatly appreciated

I have learned that this mast cell issue is so individualized. But what does seem to be common is that for many it takes tweaking meds often before finding the right mix to eleviate or lesson symptoms. So Avery is taking Pepcid, Zyrtec, (r something I don't know what you said it was) and gastrocrom. Perhaps you could post his dosage of these and ask the opinion from some of the guru's here what their thoughts are.
I don't know about a 15 yr old but for example I take 10 mg Claritan 3 times daily (H1 blocker), I take 2-10 mg Zyrtec at night (H1 blocker), 150mg Zantac 3 times a day (H2 blocker), Prilosec 40mg (I worked down from 80mg) once daily (PPI), heart meds for tachycardia and Doxepin 200mg at night (antidepressant/mast cell stablizer). I am doing the restricted histamine diet (not 100% but I've eliminated many high histamine foods so far) and this actually helps. The med cocktail still isn't working for me. Many do not find much relif on Claritan but Allegra is one that does work. I have been tweaking meds since Sept last year.
I hope this helped. Please share more with us so maybe someone can help you out.