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Mast Cell Staining / Lab Recommendations

Dakota15

Dakota15

Senior Member
Messages
321
Location
Midwest, USA
Hey PR, I just wanted to ask the group - I recently had a colonoscopy / upper endoscopy ordered by my CFS/ME doctor (the wonderful Dr. Chheda). The reason being that I developed 6 ulcers after taking Celebrex / antibiotics (we're unsure which one(s) caused these).

From her suggestion, the administering GI doctor took biopsies from the duodenum and terminal ileum, since those are some of the highest yield areas for MCAS. The problem then became that the local lab couldn't stain for mast cells & Mayo Clinic Lab wouldn't collaborate with as anticipated (I live in Minneapolis).

Has anyone else navigated this situation or run into the lab portion not being able to be completed for mast cell staining biopsies? Or if anyone knows of a credible outside lab that has a reliable process for mast cell staining biopsies, considering the facility just has my biopsies sitting there? Dr. Chheda was hopeful mast cell staining the biopsies could help answer the pathology for my profile and could possibly steer treatment, as there certainly seems to be something off with my gut - she said it was very rare for her patients to develop ulcers from her treatment modalities.

Thanks for any help or insight PR! - Dakota
 
J

joanierav

Messages
64
hi so sorry you are having problems finding a lab. dr. chia should know of a lab, wouldnt you think? how long is is good for your biopsies to sit there?
good luck, joanie
 
crypt0cu1t

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Dakota15 said:
Hey PR, I just wanted to ask the group - I recently had a colonoscopy / upper endoscopy ordered by my CFS/ME doctor (the wonderful Dr. Chheda). The reason being that I developed 6 ulcers after taking Celebrex / antibiotics (we're unsure which one(s) caused these).

From her suggestion, the administering GI doctor took biopsies from the duodenum and terminal ileum, since those are some of the highest yield areas for MCAS. The problem then became that the local lab couldn't stain for mast cells & Mayo Clinic Lab wouldn't collaborate with as anticipated (I live in Minneapolis).

Has anyone else navigated this situation or run into the lab portion not being able to be completed for mast cell staining biopsies? Or if anyone knows of a credible outside lab that has a reliable process for mast cell staining biopsies, considering the facility just has my biopsies sitting there? Dr. Chheda was hopeful mast cell staining the biopsies could help answer the pathology for my profile and could possibly steer treatment, as there certainly seems to be something off with my gut - she said it was very rare for her patients to develop ulcers from her treatment modalities.

Thanks for any help or insight PR! - Dakota
Click to expand...
I actually devloped ulcers from high dose IVIG prescribed by Chheda which is completely unheard of.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
I just saw this thread and the hospital where I had my colonoscopy in late August took biopsies that were stained for mast cells in addition to removing two benign polyps.

I can PM you the name of the hospital @Dakota15 if you still need it but I’m not sure if they would perform labs on a sample that was not taken by their hospital (but I could be wrong).
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Dakota15 said:
@Gingergrrl did you (or Dr. Kaufman/Chheda) find the staining helpful?
Click to expand...

Dr. K is my main doctor but he is not the one who ordered the colonoscopy or mast cell biopsies/staining. I had the colonoscopy as a precaution because my mom passed away from Stage 4 Metastatic Colon Cancer in 2018. I had no GI symptoms but we wanted to get a baseline colonoscopy (even though I am under 50) since I am now high risk for colon cancer.

I did the colonoscopy with a GI doctor that my mast cell specialist referred me to and she took the biopsies b/c he asked her to so he could have them stained for mast cells. She also found two benign polyps that she removed. I only saw the GI doctor once (at the consult) prior to the colonoscopy and she said that I don't need to do another one for seven years.

I can find the results with the exact numbers (re: the mast cell staining) if it would be helpful and I also wrote about it on PR in a (very long!) thread about my colonoscopy. My results of the biopsies/staining showed that my MCAS was very well controlled and in remission (but not zero or gone).

But if I was not doing the colonoscopy as a screening for colon cancer, I would not have done it just for the mast cell biopsies b/c my MCAS has been in remission since end of 2016. But since I was already doing the colonoscopy, my mast cell specialist asked for the biopsies.
 
W

wigglethemouse

Senior Member
Messages
776
Most likely cause for ulcers was Celebrex
https://www.rxlist.com/celebrex-drug.htm
WARNING
...
Gastrointestinal Bleeding, Ulceration, and Perforation

  • NSAIDs cause an increased risk of serious gastrointestinal (GI) adverse events including bleeding, ulceration, andperforation of the stomach or intestines, which can be fatal. These events can occur at any time during use and without warning symptoms. Elderly patients and patients with a prior history of peptic ulcer disease and/or GI bleeding are at greater risk for serious (GI) events. [see WARNINGS AND PRECAUTIONS]
Click to expand...
 
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