A Little History
Since my diagnosis of a mast cell disorder in 2010, I realized how long I have suffered from other allergic issues. I had severe environmental and pollen allergies as a child; got diagnosed with several food allergies in 1993, three years after my daughter was born; and continued to have more and more stomach aches after my son was born in 1996. I got stung by a wasp in 2006, which put my body ‘over the threshold.’
It took 4 years before I got a diagnosis of a Mast Cell Disorder from Dr. Philip Miner, a gastroenterologist with the Oklahoma Foundation for Digestive Research in Oklahoma City, OK. I later found out that Dr. Miner has been researching mast cell disorders since 1988, and only recently has his work been incorporated into medical literature. More and more patients are being diagnosed with mast cell disorders since Dr. Miner has developed the various criteria to review. There are only a few research centers in the USA that have knowledge about mast cell disorders. You can find a listing of these here. Dr. Miner has trained several of these physicians. He is the ultimate researcher, and tells his patients to ‘never give up hope’ that he can help you feel better.
Mast Cell Disorders
You may have heard of systemic mastocytosis or urticaria pigmentosa (also called cutaneous mastocytosis); however Dr. Miner found that there is a spectrum of mast cell disorders that don’t necessarily biopsy in the bone marrow or the skin. One can have a pooling of mast cells in any organ, and my daughter and I have such a pooling in the gut. Those patients diagnosed with systemic mastocytosis or urticaria pigmentosa also frequently have stomach aches, since the high mast cell count is not only in their bone marrow or skin, but also frequently found in their stomach.
I’ve learned that those of us with mast cell issues have a threshold over which we begin to react. This is true with most of the allergic issues. A high pollen day along with a virus can send your child’s immune system over the edge to where they break out in hives for no apparent reason. Yet what’s really going on is an onslaught of mast cell activity that has made it appear that your child can no longer tolerate certain foods, for example. Or it appears they are having inhalant reactions; or suffering from stomach aches during the spring and fall when pollen season is high. Too many mast cells in the body react, and the child goes over a threshold, and begins to react to virtually everything.
The high mast cells in our gut affect the mucosal barrier in our stomach and intestines leading us to ‘leaky gut’ syndrome. This allows even more food proteins to pass into our bloodstream causing more food allergies and more reactive issues. My daughter’s leaky gut was exacerbated (or created) by her celiac disease which she had for 10 years prior to a diagnosis.
The immune system threshold may be reached by a virus, a fragrance, pollen in the air, a drug or a high histamine food. If a patient with a mast cell disorder is skin prick tested or blood tested for an allergy, there may not be a true IgE allergy to the “invader”. The mast cells are just twitchy and ready to react to anything and everything. These reactions can be in the form of hives, stomach aches or life-threatening anaphylaxis.
Patients with mast cell issues may be diagnosed with celiac disease yet find their stomach aches continue even on a gluten-free diet. Or the patient may be diagnosed with Irritable Bowel Syndrome, without any biopsy completed to check for high mast cells in the stomach or intestines. Information about mast cell issues is not in abundance on the Internet. Some information about Mast Cell Disease can be found at www.tmsforacure.org and emergency care can be found here.
Published research can be found here. Most of this information is about the systemic form of the disease.
Mast Cells, Histamines, Drugs and Foods
If you believe that you and/or your child is having some mast cell issues and going ‘over the threshold’ on a regular basis, what can you do? Dr. Miner has stated that there are 7 deadly sins for mast cell patients to eat: beef, pork, onions, tomatoes, wheat, oranges, and chocolate. These foods are all high in histamine and his research has shown that mast cell patients can clear up a lot of stomach issues by ceasing to eat these foods. If your child is suddenly “over their threshold” and seemingly reacting to everything, try removing these foods from their diet and see if their system calms down. (Editor’s. note: In young children, it’s wise to consult a physician before eliminating foods.)
Additionally, bananas hold histamine in the body. You may not have an allergy to them, but can still experience symptoms, like hives, if you eat them.
My daughter and I are currently on a very limited diet of foods to try to calm down our mast cell activity. We eat completely organic currently and it’s working! We never had to go on a feeding tube (which many mast cell patients have to do to give their gut a rest), for which we are very grateful. It’s really hard to eat very few foods every day diligently. But constant stomach aches and hives are no fun, so there’s a lot of willingness that we both have to feel better.
If you remove preservatives, GMOs, food dyes and packaged foods from your child’s diet – even if you don’t go completely organic – you might find that your child begins to feel better.
Next: Mast Cells and Food Allergy Research