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).

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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

 

 

 

Case study: woman who suffered from MCAS, POTS, and SIBO for years finally found right medications

https://www.prohealth.com/library/winning-lottery-novel-treatments-return-severely-ill-pots-patient-near-health-87040

After 10 IVIG treatments, a tilt table test found that her POTS was completely gone.  She needs to stay on the IVIG: without an infusion at least every five weeks, she starts to decline. The doctors aren’t done with her yet.  At the time of the publication, they stated that they plan to continue the LDN and IVIG and add new mast cell treatments in the future.

The patient reported:

I feel like I won the lottery last year by discovering LDN, IVIG and SIBO treatment. LDN made me feel noticeably happier, more energetic, in less pain and with better digestion (and these things got better with each dose increase). IVIG was an absolute miracle and within a week gave me a life back, with a huge improvement of numerous symptoms, most importantly fainting, nerve pain and delayed pressure angioedema.

But I still had daily crippling stomach aches and more gas than a field of Holsteins until I took the rifaximin. I can’t believe I went decades feeling so bad when I only needed 2 weeks of antibiotics and a low-sulfur diet!

Now I’m back to standing, eating, sleeping, working, living and feeling exceptionally lucky.

The doctors believe that mast cell activation – not autoimmunity – was most likely driving her hyperadrenergic POTS. They proposed that mast cells activating near autonomic nerves were tweaking her sympathetic nervous system – a similar idea to Van Elzakker’s proposal that localized infections or inflammation near the vagus nerve is driving ME/CFS patients’ symptoms. It’s also not far from Dr. Pridgen’s hypothesis that a herpes simplex virus infection in multiple parts of the body is doing the same.

The authors reported that their case report established a number of firsts:

  • the first time IVIG has been shown to lead to significant and sustained improvements in mast cell activation syndrome (MCAS).
  • the first reported case of LDN improving POTS and MCAS symptoms.

They hypothesized that the sustained sympathetic activity caused by mast cell activation suppressed the peristalsis in her gut – the wave-like activity that pushes the contents of the gut canal forward. That “dead gut” then led to bacterial overgrowth, SIBO and leaky gut. The leaky gut then further tweaked her mast cells.

They believe the elimination of her SIBO and thus her leaky gut probably helped reduce her mast cell activation. In fact, they held out the possibility that her SIBO and the subsequent leakage of gut materials into her blood stream may have sparked the mast cell activation in the first place.

 

For more, check out the rest of the article!