Saturday, September 13, 2014

Celiac Ignorance

A seemingly innocuous Facebook post, on a friend's page, somehow turned ugly last night. I'm pasting the relevant comments below. 



The Facebook post was about a party I had at my house.  My friend's post, not included herein, was that she was looking forward to game night and tasty treats. Michael wrote the hashtag above without any relevant prompting, which unleashed my comments, and his bullying comments thereafter. 

I've been known to post on Facebook a lot. This isn't the first time it's come up.  I feel that if you are bothered by what I have to say, or the frequency with which I say it, you can easily scroll past me, or unfriend me.   Lately, I've had a lot to share about my experience going gluten-free, since being diagnosed Celiac earlier this year. I even created a Facebook page devoted strictly to gluten-free issues, where I do the majority of my gluten-free related postings.  Not all, but most. 

For those reading this who are not familiar with this condition, Celiac Disease is an auto-immune disease where the ingestion of gluten leads to damage of the small intestine.  It's not a fad diet, and it's not a choice. It's estimated to effect 1 in 100 people. According to reports, there are 2.5 million undiagnosed Americans who are at risk for serious complications. Left untreated, it can include the development of other auto-immune disorders like Type 1 diabetes, multiple sclerosis, anemia, osteoporosis, infertility, epilepsy, migraines, and intestinal cancers. 

I got diagnosed after a 10 year long battle with mysterious ailments. I thank god every day that I was diagnosed and that I can now treat my health issue. The treatment is to avoid gluten consumption entirely. This means no gluten-containing bread, pastries, soy sauce, crackers, pancakes, beer, battered food and many, many, more products.  I have to be careful about cross contamination because the slightest crumb can not only cause gastrointestinal distress by way of a stomach ache, diarrhea, or gas, but vitamin deficiency, weakness, dizziness, or more depending on the amount consumed and the frequency of such accidental "glutenings".  I also have to get tested twice a year for vitamin deficiencies so I can treat those.  

I know this has caused hardships on my friends and family, who no longer know how to cook for me. I can no longer easily eat out at restaurants or at their homes without a serious line of questioning.  I'm not doing these things to be difficult - I do them for medical reasons. I've decided to make my home gluten free. I was told this week that it was a very restrictive rule, that it was unwelcoming to guests, and why should they have to suffer because of my dietary restrictions?    My close friends and family never questioned this request. When I talked to a friend about it, she said "I would never bring something in your house that could hurt you."  It seems like that should be the natural response, but I'm learning that maybe I need to educate on the seriousness of the disease before I get mad at their lack of understanding.  

That's why I post. That's why I flood my Facebook page with articles, anecdotes, and accomplishments. If you see my plight, maybe you'll have a little bit of compassion and empathy.   I don't do it for attention.  If I could remove Celiac Disease from my life with the caveat that I could never post on social media again in my life, I would gladly do so. 

The conversation stream above unleashed in me a tearful and anxiety-ridden breakdown. I was convulsing in tears, entirely shaken up from head to toe. I didn't sleep last night.  It wasn't because of who it was coming from. The man who made these comments is a boyfriend of an old coworker of mine who I've kept in touch with over the years. I've met the guy twice in my life, and both interactions were superficially friendly. He was a seemingly nice guy - we traveled in similar social circles so it was natural to run into him a few times. That's it. We've never had a conversation about my disease. I understand he had a rough week, with what appears to be a death in the family as well as his own health issues, but neither of those things excuse a public bashing, in my opinion.  My best wishes go out to him in his time of loss, but at the same time, I am pained and saddened that I was the outlet for his grief.   

It wasn't that he wrote it, but it was the ignorance with which he said it, which leads me to believe no one really understands what I'm going through, and this is an ongoing battle that I need to confront. 

So, Michael, to answer your questions:  

I, in my right mind, post as much as I do.  I'm glad that you "get it" that I have Celiac disease but I'm not going to apologize for what I have to say in regards to it.  You've since unfriended me, for which I am glad. I urge anyone else who feels so strongly opposed to reading my posts to do the same.  I'm not here to filter my comments to what anyone else feels like reading. If you don't like it, don't read it.  But don't bottle up that annoyance to unleash on me whenever you feel like it. 

Secondly, you're right. I won't die from Celiac Disease in two week's time. It would be a longer, more gradual death.  I'm more likely to suffer a lot in the interim, as I have for the last ten years, with sweat-inducing cramps, dizziness, weakness, lightheadedness, and fatigue. Are these serious in an isolated incident? Not seemingly so, but a weakened immune system over time can lead to a host of other medical conditions that I would rather not acquire.  

Finally, you tell me to "look in the mirror and figure myself out".  

I have.  I look in the mirror and see a strong woman who fights this battle every day of her life.  I see someone who has taken charge of her medical condition, sometimes with anger, but also with determination and focus. 

I see a woman who is willing to educate to raise awareness. I talk to coworkers, or old friends via Facebook, and realize that I am making a difference one person at a time. I'm helping diagnose "strange" symptoms and bringing Celiac Disease into the conversation.  

I am proud of myself when I look in the mirror.  Are you? 

By the way, if you're ever going to criticize me and expect me to take you seriously, don't confuse there and their. 

Please look for me on Facebook at www.facebook.com/controlmaltdelete 

Tuesday, September 2, 2014

Fight Your Own Fight

Just a quick post as a reminder to fight your own fights.  No one will fight for your causes more than you. Here's a story for a bit of perspective:

Husband and I booked a trip to Mexico months before my Celiac diagnosis.  We randomly purchased trip insurance, just because you never know! Well fast forward to March/April - I received a Celiac diagnosis. I remembered we had planned a May trip to Mexico and I was starting to get nervous about what foods would be available on our trip. It was an all-inclusive resort with no kitchen facility in our room.

I contacted the hotel ahead of time who assured me there was food available for me to eat.  I relunctantly, and nervously, decided to go, in the hopes that this hotel would get it right for me.  Plus, what could I do? Stop living my life?  I packed my suitcase with nuts and protein bars as a back-up, and off we went.

The first night there I cried at the dinner table because I didn't know what to eat.  The hotel staff prepared me a special plate of food however, and I relaxed a little.  This would be easy. I can do this. I was to hand them special meal cards at every meal and they would accommodate me. I explained about cross contamination to the best of my abilities, and the card highlighted information about safe prep in the Spanish language. 

However, we arrived back in our hotel that evening and I already had a rumbling tummy and a few hours later, an upset stomach to boot.  I played with the possibility that maybe it was from an earlier meal, not at the resort, and I shrugged it off.

However, the upset stomach persisted every day on the trip, despite the resorts claims that they were safely preparing the meals. I never ate from the buffets; every meal was specially prepared for me that the hotel said was gluten-free. Short of only eating the nuts and bars that I brought, I didn't know what else to do.  So I bedgrudingly left the room every day, nervous of another upset stomach, attack of diarrhea, or whatever else was going to come my way. I ate the food that they prepared. And every day, I didn't feel well.

On the 3rd day there, my husband urged us to buy return tickets home, and we flew home. I didn't want to leave. I felt bad that my husband had to cut his trip short because of my disease. But my body couldn't handle the food anymore and who knew what kind of internal damage it was doing.

We submitted a claim using our trip insurance upon our arrival home. I'm not a huge believer in buyng these policies, but we got lucky this time, especially because we bought it before I even had a diagnosis.   We carefully filled out all the forms and submitted the claim.

It was rejected.  They said I needed to be seen by a doctor while on the trip to validate my illness OR it had to be so disabling an illness that I had no choice to return home. Apparently they didn't think it was disabling, and I didn't see a physician on vacation because I didn't want to pay for him to tell me what I already knew: I was getting poisoned by food my body couldn't handle.

I was mad. My husband was mad. We spent extra money on the flight to return home. Who would do that without a valid reason?  This rejection was another reminder that Celiac isn't taken seriously.

We submitted an appeal on the claim via the insurance board in our state, as instructed in the rejection letter.

Today was got a response. We were getting a refund. A big one, even covering the cost of our extra return flight home.  I almost cried when my husband called to tell me the news.

It was a reminder to me to keep fighting the fight.  No one will stand up for you, but you.  And the refund was validation.  Validation that I have a disease that needs to be taken seriously. And hopefully a wake up call to hotels and other food providers that if you promise, and you don't deliver, there should and will be consequences.

Today, I won a battle. A tiny battle. But it was a huge reminder to never stop fighting.

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