Mast Cell Activation Syndrome – What it Is and Isn’t, 2020, Hamilton & Scarlata

[Dolphin]

Free full text:
https://med.virginia.edu/ginutritio...6/Mast-Cell-Activation-Syndrome-June-2020.pdf

Carol Rees Parrish, MS, RDN, Series Editor
26 PRACTICAL GASTROENTEROLOGY • JUNE 2020
NUTRITION ISSUES IN GASTROENTEROLOGY, SERIES #199
Mast Cell Activation Syndrome –
What it Is and Isn’t

Mast cell activation syndrome is a multi-organ, multi-symptom disorder characterized by
clinical features and responses to medications that block mast cells. While some laboratory
testing can be used to support the diagnosis, there are no diagnostic biomarkers for clinical use,
which has hampered clinical care and research. Furthermore, lay literature and social media
are outpacing the science, which has led to controversy with regards to diagnostic criteria and
treatments. In this review, we will help to explain what mast cell activation syndrome is, and is
not, with an emphasis on gastrointestinal manifestations and the therapeutic role of nutrition.

I haven't read this and have no idea whether it is good or not; it simply came up in a Google Scholar search result update I get for "chronic Fatigue syndrome"

 

[rvallee]

Furthermore, lay literature and social media are outpacing the science

It's not exactly hard to outpace people walking in circles.

But the therapeutic role of nutrition is not encouraging. If there's another thing that is fraught with ambiguous and unclear science it's nutrition. And very hard for a person to do on their own, even though it's the only way.

 

[Midnattsol]

It's not exactly hard to outpace people walking in circles.

But the therapeutic role of nutrition is not encouraging. If there's another thing that is fraught with ambiguous and unclear science it's nutrition. And very hard for a person to do on their own, even though it's the only way.

Are you telling me it's not true that if I eat x hazelnuts a day I can expect to live x years longer (up to sixteen years)?! Nutritional studies are super clear that this is the case! Just don't ask too many questions or think too much about how those results came to be

Okay, so I don't remember the hazelnut example exactly, but it's something to that effect. I agree, there are lots of ambiguous and unclear science in nutrition.

 

[wigglethemouse]

This is a document targeted for GI specialists and covers where MCAS can cause food intolerance and could be a cause of IBS

I haven't read this and have no idea whether it is good or not; it simply came up in a Google Scholar search result update I get for "chronic Fatigue syndrome"

It's a start. It focuses on food intolerance testing, nutritional health, and histamine. It really misses the chance to expand on the use of Cromolyn Sodium to control IBS in the GI system caused by idiopathic MCAS which would be beneficial to many GI specialists.

Here is the context for Chronic Fatigue Syndrome

Other Systemic Conditions that are Not MCAS
There is often a substantial delay in the diagnosis of i-MCAS and patients may experience symptoms for many years and undergo many tests and specialty consultations resulting in multiple diagnoses.

Chronic symptom disorders that may be confused with i-MCAS include chronic pain syndromes, chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity syndrome, and chronic symptom syndromes following infections or other exposures such as the chronic Lyme disease syndrome. Various auto-immune diseases, endocrinopathies, and psychiatric conditions should also be in the differential for i-MCAS, and if present, may better explain the patient’s presentation.

Though I don't see why you can't have both i-MCAS and one of the others. Too little is known about why MCAS develops.

I did the food intolerance testing described in this document years ago and reacted to more than 1/3 of food types at the time. Everyone I showed the results to shrugged their shoulders and didn't really know what to do except the usual "nutritional" diets which did nothing.

 

[Sly Saint]

Cromolyn Sodium

 

[Tia]

I have used cromolyn sodium as an inhaler for ME/CFS symptoms. This was before I knew it was ME/CFS (I had gradual onset). The GP prescribed it for the tight chest and breathlessness I was experiencing. It made no difference.

I take sodium chromoglycate tablets when I get a stomach flare up and they work (prescribed by Dr Bansal).

 

[OverTheHills]

I use the inhaler and find it makes a definite difference to my functionality during winter time (I've started and stopped it a few times to check, though obviously this is not 'science') . With the inhaler I have much less PEM and a little more time active/out of bed and no discomfort in my chest. I'm not so sure about the tablets for me.

I have always had a really strong seasonal pattern to my symptoms, which baffles immunologists and ME specialists alike. So as of recently I have presumed MCAS along with MCS, IBS, POTS, conventional allergies and migraines, and ME. Which really amounts to a lot of doctors saying,"yes, you do have something wrong with you, but we have very little idea what it is" as far as I can see.

I am very concerned about my access to this medication in future with the inhaler being discontinued in NZ as well. Any advice or tips welcome ( I plan to make my 3rd attempt to move back to England next year)

 

[wigglethemouse]

I have always had a really strong seasonal pattern to my symptoms, which baffles immunologists and ME specialists alike.

I too have a very strong seasonal pattern. Around early March at the same time as the first leaves come on trees I crash bad, five years in a row. This year the crash lasted two months. I also have a shorter crash when leaves start coming off the trees in the Autumn.

Can you describe your seasonal pattern @OverTheHills ?

I am very concerned about my access to this medication in future with the inhaler being discontinued in NZ as well. Any advice or tips welcome ( I plan to make my 3rd attempt to move back to England next year)

I've read in the MCAS groups on Facebook that some folks use a Nebulizer together with a vial of cromolyn sodium.

I tried Nasalcrom which is a solution you squirt up your nose and it seemed to help but my dizziness got worse. Is that available in NZ?