Thursday, May 29, 2014

Mayo Clinic Trip: Diagnosis Edition

I went out on a limb. I prayed for answers. And God delivered.

After years of bewildering symptoms, I was given a name.

A name is such a gift. Your insides never feel quite settled when you don't know how to identify a thing. A name says, "You're not crazy. You are not alone." These are comforting truths when the disease is isolating and causes you to question your own sanity.

I once had an allergist who was as perplexed by my symptoms as I was. Though I began to react to the allergy shots with increasing violence, he continued administering them along with steroids and epinephrine because he didn't know what else to do. After becoming tired of weekly anaphylaxsis, I ended the treatment. Recently, I encountered another allergist who refused to believe me, concluding I must be crazy because my symptoms did not fit with what he knew. Never have I had a doctor who both believed me and knew what was happening to me until Dr. Park of Mayo Clinic.

God bless this man.

After almost ten years of suffering and an earnest, two-year-long quest for diagnosis, Dr. Park told me on May 27, 2014, I have Mast Cell Activation Disease (MCAD).

Within a few minutes of my initial consultation, he suspected a disease involving the mast cells as opposed to a true allergic disease. Mast cells are found in the body's tissues, and promote immunity in a healthy person's immune system. Modern medicine tells us mast cells are disrupted by IgE antibodies. These antibodies are what allergists are looking for when they perform routine skin and blood tests. When the antibodies attach to a specific antigen such as ragweed pollen, they sensitize the mast cells and crosslink. The mast cells then break apart and dump certain chemicals like histamine, leukotrienes, and other nasties. The difference between true allergies and mast cell disease is the catalyst which angers the cells. With IgE allergies, the trigger is specific. With mast cell disease, the triggers are diverse and numerous.

In my experience, triggers are either debilitating or dangerous. Though the differentiation between debilitating and dangerous triggers varies from patient to patient, there are some commonalities. Common life-threatening triggers are fire ant, wasp, and bee stings. Typical debilitating triggers include high histamine or histamine releasing foods (fermented foods, alcohol, cheese, processed or left-over meats, yeast, many fruits, coffee, chocolate, tomatoes, fish, shellfish, wheat, nuts, soy, dairy, etc.), latex, chemicals, pesticides, fragrances, heat, cold, friction, injury, NSAIDS (Advil, naproxen), pollen, acute illness, and emotional stress. (Insect stings, peanuts/tree nuts, and latex are my most dangerous triggers.)

As you can probably guess, a person has difficulty avoiding this many triggers over the course of even one day, so the mast cells are continually releasing their contents, causing inflammation in all systems of the body. The chronic, widespread inflammation leads to quite a range of seemingly unrelated symptoms. The most common symptoms are flushing, itching, hives, chronic constipation and/or diarrhea, nausea, intestinal cramping, chronic fatigue, headache, wheezing, cough, dizziness, low blood pressure, fainting, fibromyalgia, arthritis, neuropathy, and shock. I have experienced all of these, most on a daily basis.

Because Dr. Park is knowledgeable and well-read, he immediately thought of mast cell disease of which there are several subtypes. Some types are worse than others. There are also a couple of altogether different diseases with similar symptoms. Dr. Park ordered specific blood and urine tests to exclude the possibility of systemic mastocytosis, mast cell leukemia, pheochromocytoma, and carcinoid syndrome. All labs came back normal which indicate MCAD.

According to The Journal of Allergy and Clinical Immunology, the criteria for a diagnosis of MCAD are:

1) Symptoms consistent with mast cell mediator release affecting two or more organ systems.


2) Other diseases with crossover symptoms ruled out.


3) A positive response to antihistamines and mast cell stabilizers.

Expected. Dr. Park is confident my symptoms will improve with the help of these drugs.

Basically, MCAD is diagnosed based upon clinical evidence and the exclusion of all other explanations. There is no cure for mast cell disease at this time. Not much is known about the disease other than it is real and it can be managed with a strict diet, lifestyle modifications, and relatively tame medications.

My life is unlikely to ever be "normal," but I'm okay with that. I'm not normal, so why should my life be? I have high hopes that the medications along with the continuation of nutritional therapy with Jennifer, regular treatments with Dr. Yakaboski, and regular chiropractic work with Dr. Frieden will eventually lead to a better quality of life. Insect stings will always be dangerous, I will likely continue to make my own deodorant and toothpaste, and I will usually use essential oils before medication. I have no reason to return to the Standard American Diet (SAD). But maybe I will be able to attend church again. Maybe I will be able to go to a movie with my husband. Maybe I can leave my home without a mask. Maybe I won't feel miserable every time I eat or end up in bed flat on my back with every virus which crosses the threshold.

I have no reason not to hope. God's love has made me bold. My recent encounter with His faithfulness has freed me from fear. I am resting in His Word--

"And whatever you ask in My name, that I will do,
 that the Father may be glorified in the Son.
 If you ask anything in My name, I will do it."
--Jesus, John 14:13-14

Obviously, this verse isn't a blanket promise. God doesn't always do what we ask. But when we abide in Christ, we know better what to ask for. And if we knew everything He knows, we would do things in the exact manner He does things.

I never asked Him for a diagnosis before last Sunday because I never felt compelled by the Spirit until then. I asked with a kind of desperation I had not previously experienced. It was a "do or die" kind of prayer. On Tuesday, God answered my request. While studying Jeremiah 17, I came across this verse:

"Heal me, O Lord, and I shall be healed;
Save me, and I shall be saved,
for You are my praise."
--Jeremiah 17:14

It has become my new prayer. I don't know when God will heal me, but I believe healing is coming. I don't know to what extent I will be healed, but I am comfortable leaving that decision in the ever capable hands of my wise and loving Father. For now, I will enjoy His goodness I have experienced here in Minnesota, and focus on getting back home to my Superman and red-headed loves. 

May God bless you all for praying me through this experience. I am so humbled and thankful to be a vessel of God's love and power. I am glad you were able to witness it! If you don't know Him, oh how I wish you would! There is no one more worth knowing! If you want to talk, I always have time and energy for conversations about the Savior.

Grace and peace. 


Jessica Johnson said...

Wow. Melissa, I am seadly crying as I read over this post. I am so thankful you finally have some answers. Your life is such an encouragement and continually brings glory to God.

lymric o'flood said...

I struggle every day as to where is God in all this? I don't understand why the powers and principalities of this world seem to win. I know in the end who wins and so glad to be a part of that team. Thank you for your post today. I am having a bad day and as of yet no diagnosis of anything from anyone. We have discussed going to Mayo and maybe it's time. I am dealing with bacteria in my gut that is causing all kinds of issues including histamine. I tried the Atarax and Cromolyn and had adverse reactions to both so they aren't an option to me so that's very scary if MCAD were to be my diagnosis. Anyway, thank you for sharing your love of our Lord so openly and lovingly even in your time of struggle. Blessings.

lymric o'flood said...

Thank you for sharing your story. I have yet to find any form of diagnosis and continue to struggle. I am having histamine issues and tried the atarax and cromolyn only to have adverse reactions to those. I struggle with wondering where God is in all this even though he is the love of my life. Why do the powers and principalities of this world seem to be so strong and over powering? I know whose team wins in the end and Praise God for that. Thank you for sharing your love, the verses and the thought of asking for a diagnosis not just healing. Blessings.

Pam H. said...

Glad you got your diagnosis! Just knowing is worth so much. I remind myself there is a reason for everything and I also ask God for Healing, if not complete, just enough to be able to leave my house without having a huge reaction. Or just enough to be able to eat a healthy diet (Im very salicylate sensitive, so most fruits and veggies are out) I am thankful for the improvements that the meds have made, but praying for more.

Shauna said...

I imagine you will understand when I say congratulations and sympathy, at the same time. I was just diagnosed with the same disease in October, after about 20 years of being ill,'s a trip, yeah? SO much to learn.

I was lucky, in some ways, that I am what's called a 'leaker' rather than a 'shocker,' - my mast cells rarely if ever cause me to go into shock. They leak their contents much more slowly, so the chronic problems are more common, but the more obvious symptoms like hives, flushing, and anaphylaxis, are rare or only associated with a few major triggers.

I wanted to share something that I know is gratuitous, but I'm just going to put it out there because I wish someone had told me the day I was diagnosed. If you haven't done a trigger journal, I would so recommend it.

I just took a couple days to write down how every body part felt, maybe every 15-30 minutes. This turned out to be crucial, because being sick for so long, there was a lot of pain and problems that I had pretty much tuned out. I didn't notice when it got a little worse or a little better; it was normal.

But once I started to notice all the symptoms, I took the next few days and every time one of these symptoms altered, I wrote down everything that had changed in my environment or I'd contacted. Weather changes, food, temperature changes, emotions, substances I touched (from bedsheets to cold floors), anything different.

It has made SO much difference. There were so many small things I never considered that have turned out to trigger my mast cells. Avoiding a lot of these triggers has really brought about a lot of improvement to my day to day life

Some were things strong wind in the face (seriously, who knew?), sudden heat from opening the oven, cold floors on my feet, getting startled by my alarm in the morning.

These were never BIG triggers, but they would add up all day long, you know? And taking care of them, or finding work-arounds, has helped SO much.

I hope that you have as much improvement with your quality of life as I've had, now that you know what you have to work with! ^_^

Dawn said...

Thank you for posting this. It's a relief to know I'm not alone in this. From your post to the replies...every brave word written has eased some of my concerns. Yes, it's now February 2016 and I pray all of you are doing much better!

MelissaKeaster said...

Dawn, I'm actually doing MUCH better. The Lord is in the process of healing me completely. Here are links detailing that story: