Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Visit YaBB today Wink
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Consultations with researchers (Read 2690 times)
Starflower
FORUM ADVISOR
*****
Offline


Not a medical doctor
Posts: 715
Indiana
Consultations with researchers
01/28/12 at 14:10:47
 
Outside of this forum I was having a "discussion" (online) with some friends about my interactions with Dr. Castells.  I wanted to copy it here because I thought it might be useful not just for anyone dealing with her, but for anyone reaching out to a researcher/specialist in another state or another country.

---------------
I've had experience with Dr. Castells in three different phases...

- Before I became her patient

I e-mailed Dr. Castells in the fall of 2009 after a particularly frustrating appointment with my local allergist... the one who diagnosed me with chronic autoimmune urticaria.  I'm still working with him and still respect him because he's willing to learn (a rare quality!), but he's not a researcher and doesn't really understand how to deal with a systemic mast cell disorder.  I'm teaching him Wink  Anyway... at that time I was really struggling with day-to-day symptoms (POTS, nausea, diarrhea, joint pain, fatigue) and he didn't think I needed anything besides antihistamines.  I had never met Dr. Castells, but she very graciously e-mailed me back.  She advised me to get a total IgE, a baseline tryptase, and to try Gastrocrom.  I already had the total IgE... I went to my local GP to beg for the tryptase and Gastrocrom.  God bless him.  The man is 81 years old and doesn't really know anything about mast cell disorders, but he believed me and was willing to help as much as he could... and when I said "cromolyn sodium" he realized, "Oh... this is a very old and safe medication."  Nothing radical.

- When I became her patient

By the time I went to Dr. Castells I already had a mast cell diagnosis and tons of test results.  What I didn't know was how to get my abdominal angioedema under control.  After waiting so long to see her I was kind of surprised at how quick my appointment was (no more than half an hour), but she did photocopy all of the test results I brought and set up an additional GI consult with Dr. Greenberger.  I told her, "I know what an authority you are and I trust you."  I was really surprised when she put me on an elimination diet, but by golly... it worked.  Dr. Greenberger's advice was spot on too.  I had a longer and more supportive appointment with him.  Sweet guy.  Dr. Castells did not remember that we had been in touch by e-mail.

- After leaving Boston

Since my appointment I've had three "phone consultations" with Dr. Castells.  These have been VERY short (no more than five minutes).  Since the elimination diet worked we haven't needed to do any more tests or adjust my medications.  She did ask me if I thought my current prescriptions and doses were doing enough and I said "yes," so at least she was open to the idea of making adjustments if I was still suffering.

Dr. Castells can't order any tests or prescriptions for someone she hasn't seen in person... I had to go through my local doctor for that.  Looking back, I had been going through relatively mild episodes of anaphylaxis for four years before "the big one" hit in February 2009.  The first part of my diagnosis came in August 2009 (chronic autoimmune urticaria), the second in January 2010 (systemic, autoimmune mast cell disorder), and the third in 2011 (allergies to shrimp, ragweed, and latex, plus acquired abdominal angioedema).  In each case, I didn't make any progress with doctors until I personally educated myself... for newbies, that is by far the most important piece of advice I can give.  Educate yourself.  If you're not educated, how are going to understand your doctors and whether their advice is good or not?  
----------------------

Hugs to everyone out there going through the difficult journey to better understanding and better health!

Heather
Back to top
 

We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
IP Logged
 
Anaphylaxing
Guru
*****
Offline


Hang in there! You can
do it!
Posts: 836

Re: Consultations with researchers
Reply #1 - 01/28/12 at 17:41:24
 
Great information, thank you SO much for sharing it Heather.  So glad that you are doing better also. Hope that is still the case. Undecided
Back to top
 
 
IP Logged
 
Mousse
Tutor
**
Offline


I Love YaBB 2!
Posts: 88
Georgia
Re: Consultations with researchers
Reply #2 - 01/29/12 at 01:14:34
 
Point taken. Thanks, Cindy
Back to top
 
 
IP Logged
 
Starflower
FORUM ADVISOR
*****
Offline


Not a medical doctor
Posts: 715
Indiana
Re: Consultations with researchers
Reply #3 - 01/29/12 at 02:56:56
 
I'm happy to say that I am still doing well! Smiley  I can tell the mast cell disorder has not gone away (I don't expect it to), but I'm living a pretty normal life.

Heather
Back to top
 

We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
IP Logged
 
missybean
Mentor
****
Offline


I Love YaBB 2!
Posts: 439
Washington
Re: Consultations with researchers
Reply #4 - 01/31/12 at 12:34:57
 
Thank Heather!
Back to top
 
 
IP Logged
 
mommy2seanp
Tutor
**
Offline



Posts: 94

Re: Consultations with researchers
Reply #5 - 02/16/12 at 12:55:32
 
Hi Heather,

I have an appointment with Dr. Castells and Dr. Fried (Boston Children's) set for May 1st for my 4 yr old son.

Would you mind sharing what type of an elimination diet she put you on?  What foods can you eat?  My son is already on a restricted diet of 6-8 due to his numerous allergies, EE, etc.  I can get him to a solid baseline but have not been able to expand his diet.  Now that you've been on the ED, have you been able to successfully reintroduce any new foods?  

Glad you're continuing to do well. Thank you!
Tina
Back to top
 
 
IP Logged
 
Starflower
FORUM ADVISOR
*****
Offline


Not a medical doctor
Posts: 715
Indiana
Re: Consultations with researchers
Reply #6 - 02/17/12 at 03:25:10
 
Hi Tina,

Everybody is a bit different... and from what I understand, EE makes it even more difficult to find foods you can tolerate.  After four weeks of a very strict elimination diet I was able to quickly reintroduce quite a lot of foods.  Here's what I'm still avoiding:

Due to the high levels of histamine:
- Shellfish
- Leftover meat
- Aged cheese (a tiny bit is OK)
- Foods that have been aged or fermented

Due to my own allergies/triggers:
- Shrimp
- Raw tomatoes
- Bananas
- Avocado
- Kiwi
- Melon
- Chamomile
- Gluten
- Blood thinners like turmeric

For religious reasons:
- Alcohol
- Pork products

Otherwise, I eat whatever I want Smiley  My friends tell me I eat "very healthy."  I suppose I do... a lot of "normal" foods are not safe for me!  As much as possible I eat organic produce and organic, grass-fed meat and dairy products, which minimizes my exposure to GMOs, chemicals, antibiotics, and synthetic hormones.

Heather
Back to top
 

We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print