Case study from Brigham and Women’s: successful treatment of female patient with MCAS/GI symptoms

This article explains a bit about their work at the hospital in general.  An interesting tidbit:

“Dr. Hamilton is exploring novel treatments for mast cell patients with persistent or refractory symptoms. The primary treatment for the symptoms of mast cell activation remains the blockade of the mast cell mediators with antihistamines, mast cell stabilizers, and prostaglandin and leukotriene inhibitors

The regimen is maximized to therapeutic effect and tailored to address gastrointestinal symptoms. Additional medications with direct action on the gastrointestinal tract such as budesonide are considered based on the clinical presentation.

The use of probiotics and fecal microbiota transplantation are being evaluated as novel treatment modalities in these patients. Finally, dietary intervention including the low histamine diet and FODMAPs diet are offered to patients with particular subsets of gastrointestinal symptoms.”

The article then describes a case study:

“The patient was diagnosed with mast cell activation syndrome and was treated with loratidine, ranitidine, singulair, and cromolyn.

FOLLOW UP

At follow-up evaluations while on treatment, the patient has noted no diarrhea and minimal flushing, sweats, and abdominal pain. Her forgetfulness is also greatly reduced and she is back to her job.”

https://www.brighamandwomens.org/medicine/gastroenterology-hepatology-and-endoscopy/advances-newsletters/reducing-gastrointestinal-symptoms-using-mast-cell-disorder-identification-and-treatment

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Dr. Castells’ dietary recommendations

I’m really fortunate that I managed to get an appointment with Dr. Castells, a world-renowned expert on mast cell disease.   I know that not everyone is so fortunate as to have someone like Dr. Castells practicing near them, so part of the purpose of my blog will be to pass on the things I learned from her.

So:

Here are the list of food triggers Dr. Castells recommend that I avoid.  These are foods that either contain high amounts of histamine, or encourage the body to release histamine:

  • alcohol
  • caffeine
  • cured meat or fish (I think this means super-aged stuff like salami)
  • chocolate
  • aged/moldy cheese
  • hot & spicy foods

I thought it was interesting that she didn’t specifically recommend a particular diet, such as a low-histamine diet, beyond that.

She told me that she recommended things like “grains, fresh fruits, fresh vegetables,” and also mentioned white fish (which, I believe is referring to lower fat fish).

She explained that mast cells like fat– I don’t know exactly what this means, but she suggested that I avoid too much fat in my diet.

She also said that she tells all her patients to “lose a few pounds,” as it also helps to “keep your mast cells in check.”  (I personally am a little bit overweight for my height right now, so her suggestion seemed reasonable).

Dr. Castells interview with Yasmina, Part 2: Stress and Mast Cells

Yasmina:

How does stress, or our ability to successfully deal with it, impact our prognosis, or the intensity of symptoms we experience? Essentially, what’s our role in this this condition – are we really helpless bystanders at the mercy of our mast cells?

Dr Castells:

“I think really when the patient realises that, and in having a positive attitude about the disease, the impact is tremendous. But not everybody is prepared, not everybody wants to do that. So the recipe is to tell the patient: your disease can actually be treated or it can be managed in a way that you could have an almost normal life – it depends greatly on you, if you have an attitude towards that, to be convinced about this, and then to have less triggers in your life, whether physical, emotional stress, whether the impact of your job.”

 

 

 

 

https://healinghistamine.com/dr-castells-interview-the-role-of-stress-in-mast-cell-disorders-2/

Dr. Castells interview with Yasmina, Part 1 (“Lifestyle Changes DO Work”).

“My recipe, not as a physician, but as someone who has followed patients with mastocytosis over about 20 something years, and seeing it’s kind of evidence based, not published, but evidence based, the patients in which I have been most successful in treating are patients who make changes in exercise and diet, and need a few medications here and there. They’ll need protection with an epi pen, in case of anaphylactic events, they may still have days in which things are different, but the need for medications is lowered, the quality of life is dramatically increased and overall the disease in the great majority of patients is very stable,” she said. 

https://healinghistamine.com/dr-castells-interview-lifestyle-changes-do-work-for-mast-cellhistamine-disorders/

Dr. Anne Maitland: Living with Mast Cell Activation Syndrome

I really love Dr. Anne Maitland’s talks.  The first time I watched this lecture marked the very first time I felt hopeful about anything at all.

Some notes/quotes:

“The mast cell has come to the forefront (of research) in the past 10 years… which means the rest of the medical community will get it in about 10 years.”

“If your mast cells are improperly mediated, it’s kind of like calling the police and the SWAT team in when there’s a cat in a tree.”

International shortage of allergy/immunology specialists

Out of 77 training programs, in the US, only THREE focus on mast cell(?).

co-morbid psychiatric illness: part of disease itself, part of lack of response of medical community

 

work with doctor

get best working diagnosis

maintain normal function as much as possible, prevent exacerbations

interventions: chiropractor, functional neurologist, acupuncture, medical cannibis… role for all of these treatments depending on what’s causing mast cells to overreact

 

Type of trigger and type of mediator released determines what symptoms will be

Treatments going after the factors that get elucidated when mast cells triggered

 

mast cells are not blood borne

only found in tissue

This is why you really need a biopsy, blood tests can’t detect

 

mast cells don’t only release histamine

in fact sometimes they don’t release it at all and only reduce other mediators

 

throat symptoms can be post-nasal drip or laryngopharyngeal reflux

 

when you meet a doctor, describe all the “little things” you could ignore, because they paint part of picture

better to prevent future complications