"Well I'm allergic to [insert item here]"
According to the internet (...) 30% of adults claim to have one or multiple allergies to foods when really they do not.
In this installment I want to share my journey with food allergies. There are parts that are vague on purpose...because 30% of adults who claim to have allergies that they don't do not need to know the "right" things to say to be convincing.
Just like eating disorders, food allergies seem to be "en vogue". If I do say so myself: it isn't cool. It's terrifying. These people are the reason that those with actual diagnosed by a real doctor conditions still come under stigma.
The goal of this series is to help others take food allergies seriously. They can worsen over time and I don't care how many conditions may be in style, anaphylaxis will never, ever be cool.
I was diagnosed with Celiac disease in 2006. In 2006, no one even understood what gluten is. Gluten free bread would stick to the roof of one's mouth and would leave anyone fuming in aisles of health food stores: "My cereal is going to cost $7?! WHAT?!"
I've been sick on one capacity or another most of my life. I seemed to have a fragile GI system and hunger that could not be satiated. It was overwhelming and embarrassing.
Between not being able to evacuate (ask my mom. She'll be able to relate some pretty maddening years at the pediatrician's office where the only advise given was to give my Citrucel and suppossitories) and forceful vomiting I just preferred not to eat at all many times. In children, this isn't normal or Ok.
However, back then, if you didn't have an anaphylactic reaction to a food then it wasn't an allergy. In fact even now, many clinicians will say this.
My mom did have the foresight to cut lactose from my diet at an early age. So from being gluten free for seven years and lactose free for most of my twenty-six things should have gotten better.
Suffice to say, I was given a surgical tube in 2007. Peristalsis had left the building which left me nauseated, in unreal pain, and plain miserable.
But I wasn't improving. In fact, several formulas later and even down to a "hypoallergenic" formula for infants through my tube left me sicker than ever.
This past March there was so much testing for the "what" and "why" that I was completely overwhelmed. As it turns out, I do not just have Celiac disease and an intolerance to lactose (the sugar chain in dairy products). I am, in fact, allergic to more foods than I am not allergic to.
This means even theough tube feedings and TPN, I was being given items that I am allergic to. And very well could be a huge culprit it the sliding of my condition to dangerous proportions.
When I found out I was furious...and not because this deteriorating health could maybe not have been so quick and frightening. It was because I would have to give up all of my favorite foods. HOW would I EVER be able to go back to an oral diet being allergic to one of my all time favorite foods and several others I would normally consume on a regular basis.
How would I ever afford what I needed on a shoestring budget with so many medical bills?
So I did what anyone else would: ignore it. Why does it matter?
In May through mid June this year, after being the victor over septic shock, I went on an oral diet with overnight feeds. Eventually, foods I am allergic to were weeded out, things eventually started getting better...
Every night I woke up vomiting buckets. But in turning the pump off and taking a break I started to feel better and eventually able to eat breakfast.
That isn't normal. We were sure this was all dysmotility. Maybe I wasn't tolerating oral intake? So we pulled from oral intake.
When we did it was like going back in time: I got worse. My weight crashed. I felt terrible and the decline took no time, scaring the hell out of everyone.
Eventually I was admitted after a less than happy complication to a surgery. My ID doc reinstated oral diet and we avoided all allergic foods. The dots weren't connecting yet, but aside from fullness and swallowing issues I was, again, feeling better.
When I was discharged, my PCP assured me in the absence of anaphylaxis it was really ok to just eat what I enjoyed. Don't worry about the rest.
I normally am a good judge of unsound advice. But when it comes to my food? Not so much.
Are yoy seeing a pattern yet? Can you guess what has happened since being home? I couldn't until I started logging on my laptop re actions to foods, meds, feeds, etc.
This time my reactions to offending foods were more severe. No latent response. Large, swollen hives, rash on my scalp, wheezing...
Wednesday I got a call from my ID doc. Panicking. Said my white cells.were almost off chart, and what the hell was going on?
I told him and I thought he would blow a gasket. Immunology later told me it was a really good thing I was still eating more plain foods that didn't have multiple ingredients and he only real offending foods were the few I love. And that I was vomiting a lot.
It may have saved my life.
He said that these scary symptoms a precursor to actual anaphylaxis.
In absence of anaphylaxis...
...I felt like an idiot. But ask most: I am not an expert on food allergies. And it took awhile to grasp that the reason Neocate won't ever provide relief is that the carbohydrate source is corn based. In fact, its base is not well broken down. But in absence of the protein in this grain, it did not trigger anaphylaxis. It just made me really sick.
Food allergies are serious medical conditions. This was not something I understood at all, embarrassingly enough. But now I understand claiming a food allergy when they really aren't is just as bad as claiming to have lupus or another serious illness when they, in fact, do not.
Intolerance is not allergy. But even with a food intolerance it is best not to eat offending foods...but allergy? Might as well play a good ol' fashioned game of Russian roulette.
Within two day's time I look and feel much better. I've got hope on my sode again. I actually have better energy and i feelm alive. Yesterday I finished edging myself off of formula and now use a Tetra Pak shelf stable serving of coconut milk and blend it with a smooth rice protein powder for overnight feeds.
Slow motility, reflux, discomfort, etc continue to be problematic. But I have faith it will improve...no idea as to how long.
I'm not in a rush.
For one entry of this series I am asking for other stories of how you or a loved one were diagnosed with real food allergies. Please message me via Facebook as my e-mail is hard to check for the rest of this month. E-mail communication should be back up in September. You may include your first name or remain anonymous.
Next post will be more in depth as to allergy vs. intolerance, and the hype behind "allergy testing" that is expensive and inaccurate.
DISCLAIMER: THIS POST AS WELL AS THE BLOG IS BASED ONLY ON MY EXPERIENCE AND MY OWN CONDITION. DO NOT MAKE ANY DECISIONS REGARDING "SIMILAR" CONDITIONS OR TREATMENTS WITHOUT APPROVAL FROM YOUR PHYSICIAN. DO NOT E-MAIL ME FOR ADVICE REGARDING SERIOUS, LIFE THREATENING SITUATIONS. CALL 911 OR TAKE PATIENT TO THE NEAREST LOCAL EMERGENCY ROOM.