Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Signup for free on our forum and benefit from new features!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Malabsorption and Whipples Disease (Read 4438 times)
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Malabsorption and Whipples Disease
11/13/14 at 07:50:25
 
Anyone else have vitamin deficiencies?  I have low B6, K, D, A, magnesium.  High B2, high homocysteine.  Normal B12.

I'm diagnosed autoimmune chronic urticaria, but my symptoms are mast cell/lupus like.  

I have been having internal tremors for several years and this past summer went to an functional doctor to help with MTHFR gene defects.

He found I had a parasite Blastocystis Hominis.  I went to gastrointerologist and begged him to treat this (Medical community doesn't know if this is really a bad bacteria).  I took Flagyl for 10 and was feeling so good after about 4 days.  4 or 5 days after I finished Flagyl I started getting the tremor feeling in my gut again.  

So I'm going back to gastro. tonight to pursue Tropical Sprue and Whipples Disease.  Anyone know anything about Whipples?  

He did endoscopy/colonoscopy 2 1/2 years ago, when I was pursuing Mast Cell Disease and he said everything was normal.  Is the problem that he didn't stain the samples with the right stain?  Can this be done 2+ years later?

The experts say if you're diagnosed with Autoimmune Chronic Urticaria then that's your diagnosis.  I don't even have urticaria anymore, now I am so sick in my gut and blood and bones.

I am going to Dr. Anne Maitland in Westchester NY on Jan. 6.  She studied at Brigham Women's Hospital.  I just don't know if I should pursue mast cell disease or something more heinous.

Can you have cutaneous mastocytosis with a tryptase of 6 and then 3 (2 1/2 years later) or must you have a tryptase of 20+.
Back to top
 
 
IP Logged
 
sarahkay1111
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 136

Re: Malabsorption and Whipples Disease
Reply #1 - 11/13/14 at 10:42:22
 
Hi PJP,

Tryptase levels fluctuate frequently (mast cell doc told me this).  Mine have ranged from 7 to 10.6.  (It was 10.6 with no reaction, and 7 with a major flare).  My doctors don't seem to care what it is if it's in the normal range.  I got diagnosed with MCAS per Dr. Afrin.  I have high blood histamine, and high prostaglandins.  Have you had 24-hour urines done, and other blood work related to mast cells?

I had 3 endoscopies at Mayo and they didn't stain any.  I asked my doctor if they should, but he said no, since they know I have MCAS anyway. They freeze the biopsies, so should be able to stain them if necessary.   I would ask Dr. Maitland when you see her.

I have had very low Vit D, anemia, and low iron.  I have lost 1/2 of my hair (scary) in the last 2 years, I think due to vitamin deficiencies.  My diet is so limited.  I found Vit D drops I can tolerate, so just started that, and an iron-water supplement, since I can't eat meat.  My B12 is normal, and I don't know about the rest.  

If you think you have Mast Cell problems, you probably do (just my opinion), but it is nice to rule everything else out.  Good luck to you!  --Sarah
Back to top
 
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: Malabsorption and Whipples Disease
Reply #2 - 11/13/14 at 14:45:48
 
Thanks Sarah for your insight.

I always thought it was Mast Cell because the symptoms fit, I have Dysautonomia and genetic marker for Ehler Danlos TNXB.  So there's the trio a lot of us have.

I'm just a little put off that the authorities call Autoimmune Chronic Urticaria a Secondary Mast Cell Disease.  Somehow it doesn't relay the enormity of my illness (in my view).  

I still haven't done the 24 hr. urine (they lost it the 1st time I did it).  I have to find a lab that can do the proper testing.
Back to top
 
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print