I have been asked several times about so-called “Leaky Gut Syndrome”. Back in April I wrote a post about whether or not I thought it might be at the root of my MCAS and I promised to do more research, so I did, and what I found is very interesting!
First, what is “leaky gut syndrome”?
According to Wikipedia:
Leaky gut syndrome is a hypothetical, medically unrecognized condition. While mainstream science recognizes the phenomemon of increased intestinal permeability (“leaky gut”), claims for the existence of “leaky gut syndrome” as a distinct medical condition come mostly from nutritionists and from practitioners of alternative medicine. Proponents claim that a “leaky gut” causes chronic inflammation throughout the body that results in a wide range of conditions, including chronic fatigue syndrome, rheumatoid arthritis, lupus, migraines, multiple sclerosis, and autism.
What exactly is “intestinal permeability“?
The opening of intercellular tight junctions (increased intestinal permeability) can allow passage of microbes, microbial products, and foreign antigens into the mucosa and the body proper. This can result in activation of the immune system and secretion of inflammatory mediators.
Increased intestinal permeability is a factor in several diseases, such as Crohn’s disease, celiac disease, type 1 diabetes, type 2 diabetes, rheumatoid arthritis, spondyloarthropathies, inflammatory bowel disease, irritable bowel syndrome, schizophrenia, certain types of cancer, obesity, fatty liver, atopy and allergic diseases, among others.
As you can see, these two conditions or “syndromes” are remarkably similar and practically interchangeable and while they may not cause MCAS, they can have a very serious impact on our immune function.
How does “leaky gut syndrome” or intestinal permeability affect those of us with MCAS?
Many, if not most, of us with mast cell activation disease have intestinal symptoms. These can include bloating, cramping, stabbing pain and difficulties with elimination. Often times our food “allergies” will be delayed and not start to cause a reaction until they reach our intestines a few hours later. These are not true allergies in most cases, but rather food “triggers”, or non-IgE. I have many such triggers, including dairy (all forms), corn and soy.
This creates a nightmare scenario when it comes to my diet, of course. I’m not alone, either. Many, if not most, of us with MCAS are on extremely restricted diets for good reason. Food triggers mast cell degranulation which causes a cascade of symptoms that can be painfully debilitating, if not fatal:
In very severe cases of degranulation, the chemical soup generated by degranulating mast cells may lead to flushing of the body and the face, swelling of the eyes, nose and throat (angioedema), choking responses in the throat and loss of consciousness (anaphylaxis).
Moreover, because erupting (degranulating) mast cells dump high levels of histamines, prostaglandins, heparin, neutral proteases, acid hydrolases, chemokines, cytokines, etc. into the interstitial areas between cells, the body also experiences a form of toxic shock (Hermine et al., 2008). In some cases, the toxic shock is fatal.
It can take hours or days or even weeks to recover, just from eating one food trigger!
Understanding the complex relationship between our guts and our immune system, specifically our mast cells, is important. According to the experts:
The function of mast cells in allergic inflammatory reactions is well documented in the literature. Mast cells also play an important role in the regulation of gastrointestinal visceral sensitivity and vascular permeability. Several studies have noted an increased number of mast cells in the mucosa of patients with gastrointestinal diseases such as irritable bowel syndrome, mastocytic enterocolitis, and systemic mastocytosis.
According to these same experts, stress can be a major trigger, too:
The mast cell–enteric nerve association provides a physiologic means for bidirectional communication between the central nervous system and intestinal tract through which stress may influence gastrointestinal function. As stress has been shown to induce mast-cell activation, mediators released secondary to an external stressor may affect motility, visceral sensitivity, and gut barrier function.
They acknowledge that food can trigger a reaction, as well:
Mast cells are important in food allergies. Sensitivity to glycoproteins in food is caused by a series of interactions among T cells, B cells, antigen-presenting cells, and mast cells. Infection or inflammatory processes in the gastrointestinal tract can lead to increased intestinal permeability, which causes antigens to bypass the normal route of presentation to columnar intestinal epithelial cells and allows for allergic sensitization as antigens reach IgE antibodies bound to mast cells. These reactions lead to symptoms such as shock, rash, angioedema, pruritus, vomiting, and diarrhea.
Non IgE-mediated foods can also trigger a cascade of symptoms. This is also found in the research:
Specific IgE antibodies were commonly found in patients with insect venom allergy, but not to drugs and foods. Foods were implicated in the onset of an anaphylactic episode by some patients with mastocytosis, but this was not confirmed following clinical evaluation. Specific IgE to relevant foods is seldom found.
Again, we do not have to test positive for food allergies to have severe, potentially fatal reactions!
So naturally the question is, what can we do about it? How do we fix our “leaky gut”?
In this article I found at the National Institute of Health’s website here, the researchers are saying this:
Treatment with mast cell stabilizing agent cromolyn sodium blocks intestinal permeability and protects against antigen sensitization.
I personally found that once I got on the oral cromolyn sodium (aka Gastrocrom) a good majority of my intestinal symptoms resolved themselves, even the worst ones. I am finally “normal” for the first time in my life down there, which is a miracle! No more stabbing pain, cramping, diarrhea, constipation, bloody mucus, or bloating. As long as I am not triggered by food, that is.
The problem is, I am still triggered by my “unsafe” foods and still have to be on a very strict diet, which I really, really dislike. So I looked into whether there’s something else I can do to fix my “leaky gut” so I’m not as reactive to these foods.
That’s when I found Ketotifen. According to Wikipedia:
Oral ketotifen has been used in patients with asthma, allergic rhinitis, allergic conjunctivitis, atopic dermatitis, chronic urticaria, cold-induced urticaria, cholinergic urticaria, exercise-induced urticaria, [systemic mast cell disease including mastocytosis, MCAS, allergic and nonallergic anaphylaxis, angioedema], and food allergy in Canada, Europe, and Mexico.” Now available via prescription at US compounding pharmacies.
I have been having very good luck with the compounded version I use so far. I am still hesitant to try my trigger foods this early one, but in time I will challenge myself to see if I can have them without reacting. Of course I will share my results here.
As always, these are just my own experiences of living with mcas but hopefully this information will help you, too. Fixing our “leaky guts” may be key in finding long term, sustainable relief from our symptoms. Not to mention the ability to eat things like cheesecake again (for me). Wouldn’t that be a dream come true? It would be for me!
Good luck and won’t you please share this post on social media using the buttons below? Help me bring more #mastcelldiseaseawareness to the world!