Disordered Mast Cells, and the Clues to Food Allergy
Mast Cells and Drugs
There are certain drugs that also increase mast cell degranulation. They are:
NSAIDs (Ibuprofen, Motrin, Aleve)
d-tubocurarine (used in anesthesia)
polymixins (in over the counter bacitracin)
alcohol (if it makes symptoms worse)
Taking even one Ibuprofen pill can affect my stomach, so I’ve learned a lot of other ways to get pain relief for muscle aches.
Mast Cell Drug Regimen
There is a drug regimen that is necessary to stabilize the mast cell. Zyrtec (Reactine in Canada) and Zantac are used for H1 and H2 histamine blockers. Additionally, to stabilize the mast cell, Gastrocrom (Cromolyn Sodium) is often prescribed, but neither my daughter nor I could tolerate this. Instead, we are on Ketotifen in pill form, which we obtain from a compounding pharmacy since it isn’t formally FDA-approved. Patients may also benefit from Budesonide, a corticosteroid, especially if eosinophilic esophagitis is also diagnosed.
In order for mast cell patients to get better, their food, drugs and environment all need to be managed. If a patient is constantly “bumping up” to his or her threshold, the immune system is constantly firing. And likely the person is miserable with stomach aches, nausea, hives, nasal congestion, etc. Eating a low histamine diet, taking all prescribed medications, and watching for individual triggers are necessary to begin the long road to feeling better.
Mast cell disorders are a chronic disorder, and one that will not be outgrown. A patient can go into remission, but it’s very difficult to get to that point if you have been suffering for years with a high mast cell count. It can take months and even years for mast cells in the gut to normalize.
Food Allergy Research & Mast Cells
I have read a lot about the research on Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) in the hunt for a cure to food allergies. These desensitization protocols concern me greatly because of the mast cell involvement with food allergies. I’ve yet to see one research study wherein patients are first put through a biopsy of their esophagus, stomach and intestines to get a baseline of their mast cell count at the onset of the study. In my mind, this would give researchers a better idea of which patients are more likely to go over their threshold if their gut mast cell count is already high.
Ingesting small amounts of allergens is certain to increase the mast cell count in the gut, and the result could be mast cell issues in years to come. We just don’t have enough research to know what is going to happen to these study participants 10 or 20 years down the road. I say this because of the history of what has happened to me. A child with multiple food allergies may not be able to eat four or five foods. An adult with a mast cell disorder may only be able to eat four or five foods!
I receive dozens of e-mails from families whose children have been diagnosed with EoE, yet most have never heard of a possible mast cell involvement with their child’s condition. Some GI doctors are doing biopsies for mast cells in addition to eosinophils, yet they aren’t using the Alcian Blue 3 stain which, according to Dr. Miner, is the only staining that effectively picks up the true level of mast cells. In some cases, the GI doc isn’t getting the correct information to properly diagnose the problem.
I’ve also had many discussions with parents who believe that their children have an inhalant allergy to a food. They tell me these stories that are heart wrenching about their children suddenly reacting to peanuts on someone’s breath or something similar. The reactions are frequently quite severe. Inevitably, years down the road I hear from the parent that the child has been diagnosed with EoE. This makes sense in light of the mast cell involvement. If a child has a diagnosed food allergy to peanuts, for example, that may be only part of the story. The child may also have a high mast cell count that manifests into a diagnosis of EoE. Wouldn’t it be nice if the allergist who hears a story of a child having inhalant food reactions could/would send the child to a GI doc for a mast cell disorder check-up?
To conclude, I have three wishes as we move forward:
– I wish there was more shared research on these various disorders so that children wouldn’t have to suffer without a proper diagnosis. There is still so much to learn, but I hope that my diagnosis with a mast cell disorder might help others who are suffering recognize some similar symptoms and get help.
– I wish that we knew more about the workings of the immune system so that not only could we find a cure for food allergies, but also one for EoE, mast cell disorders, autism – the list goes on and on.
– I wish that the research of all these conditions was more easily shared with all the various specialists (allergists, pediatricians, GI doctors) so that patients didn’t suffer for years before getting a diagnosis.
In the meantime, our family is going to be cautious about what we eat – and ensure that we do our part to cease adding diagnoses to our long list.
See more of allergy advocate Nicole Smith’s work at AllergicChild.com.