Hello,
Firstly thank you for all your sharing, the support & compassion you show each other is heart warming.
I have joined to try & get some understanding around mast cell disorders & hopefully get closer to helping my 10 year old daughter.
We live in NZ & my daughter Rose has struggled for 3 years with her skin & other symptoms.  It is getting worse despite a serious dose of antihistamines & nobody seems to be able to figure out what is going on.
Going back to the very begining.  We moved from the city to the country 4 years ago.  It was a hard move for Rose, very stressful but she loves it none the less.  She always had excema as a child which we found was greatly improved if she was kept of wheat & sugar.  Rose is unimmunised as her sister had an impressive reaction so we decided to wait for Rose.
A year into living in the country she woke up one morning & proceeded to get spottier & spottier through the day.  Her lymph nodes were raised.  I took her to the GP who said it was hives.
One month earlier we had started giving her small doses of wheat, no excema & she seemed fine.  We kept her off the sugar as it was bread she craved more than anything.  She also tried raw milk for the first time & had her ears pierced.
We immediately took her back off wheat but the rash continued to gain momentum & a child that was hardly ever at the Dr was there every other day.  It was swollen, angry & intentsly itchy.  Her whole torso, face & scalp were covered.  
It has never really gone away.  We have put her on all sorts of elimination diets, used homeopathy etc anything natural we could source.  We have taken her away from pets etc & brought allergy free bedding.
She is on Telfast in the morning & either loritadine or cetrizine in the evenings.  Combinations of antihistamines last about 4-6 mths.  She continues to have around 30-40 spots(each about 2-5cm, round raised ring with pale flat centre lasting 4-5 days) at any one time & has breakouts where they cluster, swell & become insanely itchy every 2-3 weeks. The outbreaks get closer together as the effectiveness wears off.  
We are getting new symptoms appearing.  2 years ago we found that despite an excellent diet she was getting constipated with the rash.  This is now crazy & the constipation will appear just hrs before a big breakout.  She also now has reflux when the rash is at its worst & food compaction.  Dermagraphia has been present for 3 months.  
They have done 3 skin biopsys which said anthropod bite.  This has been ruled out as the rash is constant despite the seasons, location (we have taken her overseas), pest erradication & the fact nobody else in the family suffers. I have seen spots appearing in front of my eyes & have also seen her be bitten by mozzys & reaction was completely normal.
Four weeks ago she had her first anaphilaxis.  She had an enormous welt covering quarter of her throat during the day, she woke in the evening with difficulty swallowing & it got worse very quickly.  She had two doses of adreniline to stabilise & was put on iv steriods.  She was transfered to a childrens hospital 4 hrs away for further testing.  Her pediatrician felt that the swelling on her throat was swelling internally, closing her throat etc rather than an allergic reaction.  Unfortunately they didnt really get onto looking at her very quickly. They eventually popped her into theatre & put a scope down her throat.  Everything looked normal as after 5 days of iv steriods she looked the best she had in 3 years.  We are awaiting results of biopsys taken in her throat, stomach & upp GI.  Barium meal, chest xrays & ultrasound all normal.
Last week they took a lymph node which has also come back normal ( they were looking for signs of lymphoma).
Her blood tests all seem okay, she has a very high ANA, but the rheumatologists have excluded any autoimmune disease.  She has seen dermatologists, gastrologists & immunologists.  Nobody has any ideas.
After seeing this group I asked her pediatrician about her tryptase levels with the anaphylaxis but they were normal.  They would have been taken after two lots of adreneline so not sure how that would affect results.  I mentioned masto but he said that that had been ruled out with the tryptase levels.
Its been a horrible journey but Rose remains such a happy positive little girl.  It breaks my heart to wake up in the night & find her lying in a bath she has run as she didnt want to wake us & she was in a bad way.  She now carries an epi-pen but I feel so anxious I wonder 'where to next'.  
Thank you if you have managed to stay reading & I hope to really gain some insight as to what could be going on inside her body.
Su-an

Hello Su-an,

I'm very new to this and I'm sure that some of the wonderful, well-educated people on here will be able to give you some great advice. I just wanted to tell you that my tryptase blood serum levels were low too.  My doctor diagnosed me by doing "Tryptase immunhistochemical stains" on tissue samples from my GI tract that had been taken many months before.  

There's a few good videos on youtube about mast cell disorders.  I think that one of them says that the blood serum level can be hit or miss as it fluctuates a lot .  But you did mention that it was during anaphylaxis, so I could be off base here.  

Big hug! And I hope you get some clear answers soon.

http://www.youtube.com/watch?v=w0ORhV9J5xU