Histamine… P.S I HATE YOU!
Histamine is a major issue in my house on all fronts, some days our histamine bucket is overflowing before my kids even step into the kitchen to eat breakfast! I have written about it once before(click here to view it) when I first started my blog, I think it was during fall when my kids tend to go off the deep end along with many other kids with ADHD! Around that time , I had learned about histamine intolerance and many red flags were pointing to a mast cell disorder for my daughter. We had started doing some testing through an immunologist/allergist for her and luckily the winter came and I put her on a low-histamine diet, started probiotics for her stomach and she started to really calm down and level out through the winter. So I packed all my research on Mast Cell issues away along with my endless supply of Benadryl and chalked it up to just being her leaky gut that I was healing. Well, over the last month allergy season has taken over my two kids and myself and every little thing seems to be setting us over the edge. I also became cocky and let the low histamine diet slack and started letting them add in tons of high histamine foods without realizing it…EPIC mom fail!
Today was our second day of school vacation and I decided to take the kids to an indoor children’s museum and my daughter who is my oldest (also the child who was in a good place until 3 weeks ago) just lost it. I couldn’t believe how hyper and out of control, she was acting. It was 10 am and I was already over being an adult, I was that mom standing in the corner pretending she wasn’t mine. Of course, my son with PANS followed in her rampage because hell he is already a mess so any little trigger gets him started so his sister acting like she was possessed was a perfect excuse. I looked down at her hands and noticed her fingertips were bright red, usually, if either of my kids get hyper it is a sign of a food allergy or sensitivity or phenol overload and I can counteract it with Benadryl or activated charcoal, well not today. I posted it online to my amazing mom’s group Recovering Kids on Facebook and sure enough, they all reminded me of her symptoms over the last two weeks being red flags of a Mast Cell Disorder or Masts Cell Activation Syndrome, you know the thing I filed away deep in my cabinet. So while I pulled out my research for my own benefit, I figured maybe I should help some other struggling parents who may be experiencing either of these issues with their child and how to try to avoid reactions and episodes that can mimic ADHD and Anxiety and even Anaphylaxis .
What is a Mast Cell Disorder?
Mast cells are “master regulators” of the immune system. They come from bone marrow and go into all tissues of the body. Each mast cell contains secretory granules (storage sacs), each containing powerful biologically active molecules called mediators. These can be secreted when mast cells are triggered, leading to allergic and inflammatory diseases.
As described by The Mastocytosis Society, there are two main forms of mast cell disorders: Mastocytosis, where the body produces too many mast cells, and Mast Cell Activation Syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, below is a list of just some of the symptoms a person can get.
Some patients experience only a few symptoms, some experience many, some have all of them at various times or persistently. There is no way to fully predict what each patient will experience.
What is a Mast Cell Trigger?
When mast cells degranulate, they dump a host of chemicals at once, triggering the patient’s symptoms. These chemicals include histamine, heparin, prostaglandins, neutral proteases, acid hydrolases, chemokines, and cytokines, just to name a few.Different symptoms may each have a unique trigger, or a cluster of triggers, per patient. In the exhaustive list of potential triggers, as with symptoms, some patients will have only a few triggers, some will have many triggers, some may unfortunately be susceptible to nearly all the known triggers. The best way to identify and remember their symptoms and triggers is for patients to maintain an ongoing record, updating it as needed. Below is a chart of just some of the non-food triggers.
Diagnosing these disorders is too often a long, complicated process involving many areas of specialty medicine. Many patients have suffered declining health for up to 10 years or longer before they were finally diagnosed.Listed below are the initial standard diagnostic tests. Some are less reliable than others, some are used as part of the puzzle of test results to determine the likelihood that a patient has mastocytosis, MCAS or IA, or if it’s something else entirely:-
- Skin biopsy if spots, rash appearance or another skin involvement appears (*Wright-Giemsa Staining of sample is required)
- Bone density test; Bone scintigraphy*(precautions needed for radiographic dyes with patients)
- Serum Tryptase blood test (*especially within 2 hours of anaphylaxis where applicable)
- Bone Marrow aspiration and biopsy for the presence of mast cells and to test tryptase. Also, identify CD25 expression, spindle-shaped mast cells and abnormal morphology (*Wright-Giemsa Staining of sample is required)
- Check for C-kit D816V mutation and/or JAK2 mutation V617F in bone marrow sample
- 24 Hour N-Methylhistamine Urine test
- Allergy tests (Comprehensive and thorough to include foods)
- Prostaglandin D2 (PGD2) and 11 Beta-Prostaglandin F2 Alpha, Urine (BPG2)
If you think you or your child may possibly have a Mast Cell Disorder the best thing to do while you wait for testing is to control the constant allergic reactions. These may not always come off as clear cut anaphylaxis either, so remember to look at the symptom chart and try to gauge you or your child’s symptoms. The main thing to do is avoid triggers and the easiest way to start is to go on a low histamine diet to keep your histamine bucket low. The other thing is a treatment for many Mast Cell Disorders is fairly easy and requires keeping histamine levels low with diet and anti-histamines. Below is some of the medications used to help with symptoms and treatment of mast cell issues.
|First line medical treatments to alleviate symptoms for all patients include:-
Additional medical treatments as symptoms and illness progress:-
Make sure to check out our Pinterest board that has many great articles on Mastocytosis and Mast Cell Activation Syndrome and more. Also, we have some helpful sites under resources and Mast Cell Disorders. As always make sure to check with a doctor if you feel you are showing signs of Histamine Intolerance or any Mast Cell Disease for guidance , but keep in mind Mast Cell issues are not something many doctors have experience with so make sure to look up a doctor in your area who is familiar with these issues. Please feel free to email me anytime with any questions you may have at firstname.lastname@example.org