*Since I have a lot of people asking for a lot of updates – regarding my ongoing health issues – rather than writing a million different emails, I decided to answer all of your questions in this here blog post.*
Once Upon A Time – there was a girl named, Meleah. And when she was 27 years old, she had her very first allergic reaction. Except she really didn’t know what was happening, because it never happened before. Luckily, her co-workers called 911 and Meleah was rushed to the hospital for life saving measures.
Afterward, Meleah was referred to a specialist who determined that she was allergic to three things: Mustard. Strawberries. Peanuts. So, Meleah simply decided to avoid those three things.
And then she carried on with the rest of her life.
But with each passing year, things kept getting worse.
First she got sick.
And then she got sicker.
And then everything went to hell.
And then one day, in July of 2011, Meleah almost died, again.
Luckily, her son called 911, and she was rushed to the hospital for life saving measures, again.
At that time, Meleah’s allergist ran a gamut of tests. First, he administered a skin scratch test. And then he ran an Antinuclear Antibody ANA test – proving she had an undetermined and underlying autoimmune condition.
However, convinced the skin scratch test results were totally implausible, he ordered blood tests for confirmation.
Sadly, that’s when Meleah was informed she was allergic to everything on this list.
So, Meleah has avoided all of the foods on that very list, ever since August 2011, mostly.
Except things kept on getting even more worse.
By the year 2013, Meleah was diagnosed with: Crohn’s Disease, Rheumatoid Arthritis, and Sjogren’s Syndrome, along with severe Food Allergies. And then, something new and disturbing, started happening to her body.
In addition to having multiple anaphylaxis allergic reactions, Meleah suddenly started waking up in the morning with a mangled face – for no apparent reason whatsoever – every seven to fourteen days. And because the mangled face situation is impervious to Benadryl, Meleah has to go to her primary care doctors office, in order to receive emergency prednisone injections, followed by a seven-day cycle of high dose steroids.
Desperately seeking answers, Meleah went back and forth to a billion different doctor appointments.
Her allergist suggested the puffy lip was a rheumatological problem. But her rheumatologist suggested the puffy lip was an allergy problem. The one thing all of her doctors could agree on is that too much prednisone – all of the time – is very, very, very bad.
Except that since no one can figure out what’s causing her fat, puffy, swollen lip, or her random anaphylaxis attacks – no one can figure out a different treatment plan, and no one can figure out a prevention plan.
And this went on for entire year.
Exhausted and ready to give up altogether, Meleah demanded a second opinion from a brand new allergist.
And here’s how that worked out.
During the initial visit, the new allergist told Meleah that blood tests for food allergies can sometimes result in ‘false positives’ and that skin scratch tests are far more reliable.
She further explained that because Meleah’s ANA tests are positive there could be some other underlying condition making her body think food is the enemy. Antibodies are made by white blood cells and they recognize and combat infectious organisms in the body. Sometimes these antibodies make a mistake – identifying normal occurring proteins in our bodies as being foreign and dangerous – starting the cascade of inflammation causing the body to attack itself.
Then she instructed Meleah to stop all medications, and placed her on a clear liquid diet, for three days in a row, in order to obtain ‘clean’ skin scratch testing results.
One week later – Meleah went to Lab Corp for some blood work, followed by her second visit to the new allergist.
Accompanied by her best friend, Meleah felt more than hopeful.
She actually felt excited.
And then Meleah silently prayed these test results would be different this time.
Once situated in the exam room, the new allergist explained the different foods they would be testing. And then she marked Meleah’s arm with pen to coincide with the list of foods they were testing.
Next, the new allergist asked Meleah to think of any foods she would like to try eating while undergoing an oral food challenge (OFC). Meaning, whatever foods come back negative on the skin scratch test, Meleah could eat that food in the office, and then stay two hours afterwards, for observation, just in case.
And for the first time in three years, Meleah imagined eating an apple. And how crisp and juicy it would taste. And for the first time in three years, Meleah truly believed things could get better.
Then the new allergist poked Meleah, with tiny needles filled with food samples, on each side of the pen marks.
And then Meleah had to wait.
But Meleah immediately knew these test results wouldn’t be any different this time, because her arms were on fire – burning, itching, stinging, and throbbing – filling with histamine.
So Meleah wasn’t really surprised when the allergist came back into the room to look at the results.
But the new allergist was surprised.
In fact, she was completely shocked.
Meleah continued to baffle the medical community, when her allergist realized that Meleah is NOT allergic to: wheat, dairy products, or shellfish – which is the complete opposite from most people who suffer from food allergies.
But Meleah IS allergic to: soy, chocolate, apple, rice, pear, tomato, barley, oat, rye, peanut, almond, cashew, hazelnut, pecan, malt, hops, sesame seed, garlic, onion, ginger, mustard, apricot, cantaloupe, carrot, celery, cucumber, grape, lemon, orange, potato, blueberries, and strawberries.
And that’s when the allergist told Meleah, “You shouldn’t be testing positive for things like cucumber, and celery, and rice. That doesn’t make any sense. Something is very wrong, here.”
Only, Meleah has known that something is very wrong, for years.
The allergist looked at Meleah’s arm again and then she said, “I can’t give you any food challenges in the office, because with these kind of results, it’s way too dangerous.”
And just like that, Meleah’s hopes and dreams of finally eating an apple were totally crushed.
Before leaving the office, Meleah was given one last chance to cling to a tiny shred of hope.
The new allergist wasn’t completely ready to give up, because she firmly believes there really is another underlying condition causing these reactions, and she is determined to figure out what it is.
“Before we go any further,” The new allergist suggested, “Let’s wait for the blood test results. If those reveal specific inflammation markers, such as tryptase, that would explain why you’re testing positive to so many foods, and then we can derive a plan of action.”
And that’s precisely when Meleah fell in love with her new allergist and her can-do attitude.
Meleah was all kinds of exited, and all kinds of jazzed – because just maybe someone was finally looking in the right place, and just maybe someone could finally help Meleah get a better handle on this situation.
But then Meleah had to wait.
And wait some more.
During that time, Meleah felt more scared than ever. Mostly because she was terrified to eat anything. If her allergist wouldn’t let Meleah eat any food under medical supervision, then what the heck was Meleah supposed to eat without medical supervision?
And since Meleah still doesn’t know exactly what’s going to set off the next attack, or how bad the next attack will be, or how long the next attack will last, or who will be available to drive her to the Emergency Room when the next attack becomes life threatening, she walked around in a perpetual state of panic.
Two very long weeks later – the test results arrived and Meleah went to see the new allergist for the third time.
Unfortunately, the blood work did not reveal any inflammation markers the allergist expected to find. Thus making Meleah’s hypersensitivity to food all the more confusing.
And that’s when Meleah was glad she brought her mother to this appointment, instead of bringing hope, mostly because sometimes hope can be harmful – especially when you just end up feeling even more hopeless, time and time again.
Nevertheless, the new allergist had one more trick up her sleeve.
And quickly referred Meleah to a specialized program at Penn Medicine specifically for: food allergies, anaphlyaxis and angioedema. Because maybe they will be more equipped to analyze what’s happening to her body.
* Meleah is scheduled for her first appointment with Penn Medicine on March 31st. *
In the meantime, Meleah has to keep a food journal – tracking what she eats, when she eats it, and what kind of reactions she has afterward. And Meleah remains stuck in a holding pattern, with no idea WHY she keeps having these reactions, or HOW to prevent them. Because even when she IS totally-super-careful, and even when she avoids all things she’s allergic to, she still winds up in the hospital from an anaphlyaxis allergic reaction, or, she wakes up with a fat, puffy, lip.