Fog

I am so tired of the fog in my brain. It makes the pain seem endless and makes me short tempered and unable to focus on what they are all saying to me. I wish I could sleep till it's all over and I am no longer a Celiac. It completely sucks that I am unable to sleep at all during this glutening. How many endless and painful trips to the bathroom will this time take. I get so angry when I am like this. Futile and useless anger. Anger at myself for not being able to keep myself safe. Anger at the Doctors who told my parents when I was born that maybe I would grow out of being a Celiac. I found out at 46 that I had been diagnosed with it at birth. Anger at my parents for deciding that they could make me not be sick by never telling me I had a disease. Anger at my entire family who knew but kept it a deep dark secret from me my whole life. A lifetime I was constantly sick with some pretty major problems... like Rheumatic Fever. I had that four different times. Juvenile Rheumatoid Arthritis. Fun stuff huh? So many many more things and all of them can be laid at the door of untreated Celiac Disease. I know my parents were members of the think yourself well group. Their favorite saying when one of us children got hurt was "Quit your whining candybutt". They tried to make us as tough as possible. Except I was already tough... I was just sick. I am so tired.

SMH

Sheesh... My pregnant daughter had complications due to being glutened and one of the things they had to do was perform a cerclage (stitching the cervix closed) to help the baby stay in till it is time to be born. Another thing is to give her prometrium (a type of progesterone) to help her not go into labor and to accelerate the baby's lungs into being mature enough to be born early. She told all her doctors that she is a Celiac and very sensitive. They assured her that the prometrium was GF and it was, however when I researched it, it turns out that the gelatin capsules are dusted in wheat flour to prevent sticking. You have to fully vet every little piece of everything before trusting it always. She had taken these pills for most of a week before I thought to research them. I feel so guilty now.

Eating Out

Last night my wonderful son (married to my very pregnant daughter) went to Bonefish Grill in Destin Florida to get us all a gluten free meal. We called in advance and then he went in and ordered, making sure as he always does to stress gluten free ... no bread ... no croutons ... no wheat .... He got the meal and brought it home and into the bedroom where my daughter is on bed rest due to complications to her pregnancy related to being glutened. I opened up all the bags and hauled out all the food and opened the last bag and looked inside and didn't recognize what was there. I looked closer, thought to myself sweet potatoes??? We didn't order sweet potatoes, so I stuffed my hand into the bag and grabbed one and pulled it out to look at it more closely ... ackkkkk ... it was a bread roll, a beautiful and HUGE bread roll. I stuffed it back into the bag but it was too late. I must have inhaled when I had my face stuffed into the bag trying to figure out what it was.  I am glutened. I called the restaurant about this and when I explained that I was going to be sick for days at least over it she told me I must be "allergic" so I said ........ yep,  and she told me that next time I ordered to ask for a manager and they would make extra special sure to keep all gluten away from my order. I asked her why bread was included on a GF order anyway. She told me that most people get upset if it isn't included on all orders. I admit the rolls were beautiful but poison for celiacs. Now we won't be ordering from them again. How do I know if they are being extra special safe or not? If I have to phone in a request for this on a gluten free menu item then whose to say if that day they are taking it seriously or not? And its a crying shame because their food is good. I had the Chilean Sea Bass in lemon butter sauce and it was so good. The Creme Brulee is amazing. So now another restaurant I can't trust with my families health. 

One Table

 I have  a dream of everyone being able to eat at one table without worry or fear. Just sharing in the human rituals of sharing food and becoming one people. Being left out of the most important bonding ritual all of us share puts Celiacs at a real disadvantage. Instead of just saying to friends "lets all grab a bite somewhere and then go to the park" we have to think about where we are going to eat and is it safe and what we are going to eat once we get there and what is everyone else having and if they have gluten items are we going to get sick while they eat it and most of all how weird are they going to think we are and are they going to like us anyway even though eating with us is not easy or carefree. Celiacs can be high maintenance friends, not that we want to be at all. It is embarrassing to have to say I'm sorry I can't eat at your house or try that wonderful casserole you made even if you made it especially for me (because I bet you didn't know to check every little ingredient on the label of every item you used to make it with and I can bet there is wheat or gluten somewhere on the list.) Not to mention the wheat flour all over your environment. And when one of us does mention the reasons we cannot accept your  invitation then you look at us as if we are being silly and way to picky. As if we have a choice in this. It truly is our health we are talking about here not a choice. If it were asbestos and not gluten everyone would understand. For Celiacs gluten might as well be asbestos. I live in fear of meeting new people because I would love to have them over for dinner and become fast friends but the day will surely come when they invite me over to their house for dinner and I have to find a way to say no without saying no. A way to explain how it is for my family. And hope that they will understand and still find us worthwhile enough to enter into this imbalanced relationship with us. I am a Chef and a wizard in the kitchen. You probably wont notice the lack of gluten on my table at all. Most don't. Which makes it harder to explain why I can't have your hamburger buns but you can have mine. Worse would be to expect them to eat the gluten free breads available to most people. They mostly taste like cardboard. I don't know how to fix this but with an unborn grandson on the way I have to try. I want the world to be a better place for him. I want there to be no lack of bonding rituals in his life. I want his friends to never even notice that his foods are all gluten free and most of all I want him to be carefree and happy and unashamed of who God made him to be, Celiac or not.