Category Archives: celiac disease

The Ramblings of an Advocating Grumbler

(FYI–As I wrote and revised this, I was yelling in my mind the entire time. You may want to yell it out in your mind as you read it too.)

I am officially in a blogging funk. This is the reason I refused to start a blog in the first place. I am walking a fine line between advocate and grumbler. And I don’t want to be the grumbler. I have 7 partially finished pieces that are going nowhere because I feel like a whiner!!

Yes, I have celiac disease. Yes, I have vestibular neuritis. Yes, I have “the dreaded” cervical dystonia. Yes, I have battled chronic depression since I was a teenager. And let me tell you, none of the above conditions makes managing depression any easier. (Especially since my neurologist and I have an ongoing battle about why he says I can’t take any anti-depressants!!!!)

Crap.

I’m doing it again.

Look, here’s what I want people to know. During my worst times, I was positive I could not live my life for another day. And yet I did. Each and every flippin’ day I dragged myself out of bed. Do you want to know why? Because I am the most stubborn person I know! Very, very stubborn. So, stinkingly, unbelievably stubborn. Also a little combative. While those traits got me into mountains of trouble growing up, today they are the force that drives me forward.

Thinking back to when I was at my worst,  I remember the physical and mental war that raged within me every morning. I remember the doubt that taunted me. I remember thinking, “Can I do this again today?” The answer was always a “YES.” I always got out of bed.  No matter what, there wasn’t one day I stayed in bed.

Ever.

There was no way I would let any disease, disorder, or whatever define me! Especially not cervical dystonia. I became extremely proactive. My husband and I closely monitored the movements I made, every single day, day after day, month after month after month. And we discovered something amazing. We discovered that movements played a huge factor in triggering my dystonia episodes. We changed my life, my husband’s life, and our children’s lives to avoid these triggers as much as possible. And despite my neurologist shaking his head and saying it couldn’t be done, we did it.

Yep, we did it.

I am living proof that how your body is at this very second is NOT necessarily a life sentence. Do I still have rough days, absolutely! Do I have incredibly good days, yes! I AM IN SUCH AN AMAZING PLACE. Do I expect to always be in this place? Not a chance! (Ha, got ya there!) Look, I still have cervical dystonia and it’s not going anywhere. There’s no cure. And it’s starting to affect other areas beyond just my neck and shoulders. But I’m prepared. I’m still stubborn, and I know that I can take anything that is thrown at me.

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I. Just. Ate. Gluten.

For all of my gluten-free friends out there, do you ever have a dream in which you accidentally eat gluten? I have one of these dreams every few months. In the dream, I realize a split second too late that I have  mistakenly swallowed something containing gluten.  Then comes the dread of knowing that I will soon be very sick.

Well, this dream became my reality last month. It only happens to me on rare occasions now. I’m an old pro at the gluten-free thing. And 99.9% of the time, it comes from cross contamination so I get to play the: “What did I eat that could have made me sick?” game. I would prefer this game any day over realizing that I just ate gluten. Anticipation is worse than wondering.

My husband, who loathes celery (Seriously, it is way more than just a dislike.) left a few pieces of celery in his salad bowl at dinner. Without thinking, I swiped a piece of celery and ate it. It was coated with a dressing that contained wheat starch. Crap.

Crap. Crap. Stinking crap. I can’t believe I just did such an incredibly stupid thing! CRAP.

I knew the second I ate it that the dressing wasn’t GF. What in the world was I thinking? Now, all you people whose bodies don’t despise gluten are thinking, “Come on, just a tiny piece of celery with a tiny bit of salad dressing, what harm could that do?” Oh, so much harm!!!!

I knew that I was going to get sick, but I didn’t know how sick. Would I be head in a trashcan sick? Or stuck on the toilet sick? Or both? Would it happen quickly? Would it take awhile? For me, the reaction is either immediate or around 9 hours after the fact. Turns out, my time came at 3 AM. To spare you all the super fun details,  let’s just say I was up for most of the night.

I would love to say this won’t happen again, but it will. That’s just a fact of life for us Celiacs.  Live and continue to learn.

Moral of my story: Don’t put celery in your husband’s salad. 

 

dessert

One of these things is not like the others…it’s gluten-free!  Thank you Matt the Miller’s Tavern!!  Best gluten-free dessert ever. 

 

 

 

 

Link

 

Tomorrow is one of my favorite days, Easter! We celebrate the Resurrection of Jesus and His glorious promise of eternal life.  As I celebrate this day with family, I am grateful for the warm weather.  It will make my body happy and way more agreeable.  

I want to share something that I have not told many.  Reason being, if you don’t live with, or love someone, in chronic pain this will be hard to understand.  As an adult, my darkest point was when I spent 7 months in an episode of dizziness that I never thought would end.  My neurologist wasn’t sure of the cause. I was dizzy all day, every day.  Every single day. I recall the day about 5 months in when I  understood why a person living in chronic pain would choose to take his life.  Now, please don’t misunderstand me. I don’t condone suicide. I do not believe that is a choice.   My life is a cherished gift from God. All life is a gift from God.  But during that 7 month period, and at occasional times since then, God’s eternal promise is the only thing that gets me through.  Knowing that one day through eternal life,  I will no longer be bound to this Earthly body.  One day there will be no pain. That’s just enough to get me through. I do hope that day is far from now, though.

As I fumble through this journey with chronic pain and dizziness, I have asked: “Why me?” on more than one occasion.  But I never remember a time when I asked: “Why me, God?”  I  don’t blame God for my chronic pain.  Quite the opposite actually.  I thank God every single day.  I thank God for my health.  I thank Him for the health of my family.  And when my days are not so good, I thank God for getting me through the day. Truth be told, my life is wonderful.  

I have found much hope and relief from reading the Bible.  I have verses placed throughout my home, in my purse, on my desk at work, and reading these are therapeutic for me.  I have a verse for every character trait that I struggle with. I have a verse for strength, a verse for healing, a verse for letting go,  a verse for anxiety.  When my husband quit his job to pursue a different career, he put a verse near our computer. Several years later, it is still there and I read it nearly every day.

When I am in need of a verse, one is instantly there for me.  The perfect one. Every single time. I will end with one today from the Book of Colossians:

And let the peace of Christ rule in your hearts, to which indeed you were called in one body.  And be thankful. Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of Lord Jesus, giving thanks to God the Father through him.  ~Colossians 3:15-17

Wishing all of you a safe and joyous Easter!

easter

 

© Amber Richilea and slapinthehead, 2016. Unauthorized use and/or duplication of this material without express and written permission from this site’s author is strictly prohibited.

 

 

To Raise Gluten-free or not Gluten-free?

Being a parent is tough. For me, being a parent while struggling with chronic disease and illness is even harder. But wondering if either of my girls will end up living in a body like mine is heart-wrenching. I watch my oldest daughter very closely. At times, I am positive I see cervical dystonia in her. It destroys me to think she could develop such a painful disease from me.

But that’s not what I want to talk about. Today, I want to share why my children are gluten-free.

Having celiac disease and living gluten-free has taught me three things:

  1. Ingesting even the tiniest amount of gluten will make me sicker than anything!
  2. We live in a society where the focal point of many celebrations and holidays is food.
  3. Food is often used as a reward.

Ponder those last two for a minute.

When my first daughter was born, my husband and I struggled with the idea of keeping her gluten-free from birth. The reason? Several factors go into developing celiac disease. Most relevant for us: a person needs to have the DQ2 and/or DQ8 gene, and the person has to ingest gluten regularly. So if we had genetic testing done, and she did not have either gene, she wouldn’t develop celiac disease. End of discussion. If she tested positive for one or both of the genes, well, that was tougher. In that case, what was the reasonable thing to do? Was it fair to eliminate all gluten from her diet to avoid developing celiac disease?  We had good reason to believe she carried at least one gene. Myself, my brother, and my mother all have celiac disease. This was not a decision we took lightly. We spoke with our families. We reached out to the gluten-free community. We spoke to our pediatrician. Ultimately, we made the decision to have our daughter genetically tested. The referral for genetic testing had to come from a gastrologist so we made an appointment with the head of gastrology at a major children’s hospital.

Now the gastrologist was under the impression that we were seeing her because we suspected our daughter had celiac disease. We explained several times that she didn’t have celiac disease but we wanted her to have the genetic testing, so we could prevent her from ever developing celiac disease by keeping her gluten-free. The response we got from the doctor floored us. She asked us why we would want to deprive our child of the joys of a pizza party at school? She wanted to know why we would want to single out our child by not allowing her to have cake at a friend’s birthday party? Her advice: let her eat gluten and if she became symptomatic, bring her in for a colonoscopy. Let’s break that down:  let her enjoy food,  put her through an invasive test if she became sick,  and if the test came back positive for celiac, then she would have developed the disease we were trying to avoid in the first place!?! There are about 300 known symptoms for celiac disease and many of them don’t occur in the digestive system. What if she had no digestive symptoms at all?  Now long would she go undiagnosed with her body attacking itself?

Having celiac disease myself, my perspective may be different from the norm, but food is not the most important part of either of the events the doctor mentioned.  The doctor resisted the idea of genetic testing but we were persistent. It turned out our daughter has both the DQ2 and DQ8 genes. So we have kept her gluten-free. She is on a very limited gluten diet. This meaning, we don’t obsess over making sure every thing she eats is 100% gluten-free the way we do with me. We never purposefully allow her to eat gluten, but we do make sure anyone with her understands she will not get sick if she accidently eats gluten. And on rare occasions, accidents happen. She ingests at most, tiny amounts of gluten.

Family get-togethers as well as events at church, provide lots of gluten-free options. She lives in a gluten-free home. Most of her friends have gluten-free foods when she is with them, and we always make sure to bring gluten-free treats to any event she attends. A gluten-free life is all she has ever known.  Our daughter is almost ten and just within the past year she began to ask questions about being gluten-free. She has also started getting upset when she wants something and can’t eat it. And I totally understand. Eventually, she will get to make the decision as to whether she stays gluten-free, and if she decides to eat gluten we will respect that decision. While this was not an easy decision, years later we still feel we made the right choice.

As a parent, I spend my days making lots of decisions about the well-being of my children. Some are made in a split second and some of them are thoughtfully decided through time and prayer. My husband and I have always tried to do what we think is best for our children. We know that not everyone agrees with our gluten-free decision. Both of our daughters are happy and very healthy. We spend our days making memories that don’t surround food. That’s good enough for us.