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Since being diagnosed with celiac disease, I have read so many accounts of non-supportive family and friends. I had never experienced it first hand though. I thought I understood and could sympathize with others in this position. I was wrong! I have two sisters from my father's side of the family. I have seen them maybe 5 times in the past 25 years. Most of our interaction has been over facebook and such things. We really wanted to spend some time building a stronger relationship. We decided to go on vacation. They came my direction from ohio and florida. We made plans for a trip even farther west than where I live to Cali. As we planned I was very clear " I must have a room with a kitchenette." I will bring all my own pots and pans and such things, but I will NEED to cook my meals at the room or have a cooler of things that I can eat with us. I am very sensitive and have not had great success in eating out. My house and car are COMPLETELY gluten-free. " I was trying to be understanding and even said " You two can take my car if you want to eat out. I know that for a lot of people that is a big part of vacation." They seemed all on board and excited about saving money by eating in some etc.. Then came the airport pick-up. We stop for snacks. My sister picks up chex mix with cheez-it and pretzels in it. I was like oh you can't eat that in my car or in my house. I then pointed out the lays and the ruffles and fritos, cheetos etc.... all gluten-free snack options. Oh I love lays chips and fritos etc... But I want these. Ok you can eat them on my porch. REALLY? yes really. . I made Lemon poppy seed muffins and blueberry muffins ( both of which they requested the flavors) that I have served to people not gluten-free that never knew and ate multiple muffins. for the car ride. I even found a completely gluten-free resteraunt in Hollywood for us to try . Only the Absolute ATTITUDE I got about having to go out of the way and WASTE 20 extra minutes to go there was so Overwhelming I allowed myself to be cowed into once again trying to eat out in a reteraunt they wanted to go to. 30 minutes of them picking things like Pizza parlors that I had to say I cannot even attempt to eat there I finally exploded and was like " I told you not to worry about me just pick a place to eat and I will go on my own and find something I can eat!" ( we were walking in an open air market area) They looked at me like I was so crazy and mean for getting upset when they were trying so hard. So they went and got two whole pizzas and I went and found a sushi place. (This was usually a good option for me) After about 45 minutes I got a little nauseous and a lot of GERD ( my first symptoms of being glutened). The next day we ended up at a taping. Again we couldn't bring our own food in so I eneded up eating a snack bag of fritos while they ate burgers, fries and wraps. No biggy. It was noones fault. We didn't know. after the taping I NEEDED food. I wanted to stop at a gas staion to warm up my hamburger ( I had brought pre-cooked burgers and buns) only they were not hunger and just wwanted to get to the next hotel that was 2 hrs away. Now I have to wait 2 more hours. We get tot he hotel I want to get to the grocery and make some food I feel safe eating. Oh no they want to go to the beach. I put my foot down. I am going I need to eat. They go with me. After I get stomping and slammed doors because they missed the sunset on the beach because I " rolled eyes" just had to go to the store right then. I look over and on the table is a crumpled crumby cookie exploded all over the food preparation area. I almost cried. When I finally tried to open a conversation I got "We washed our hands and tried to keep our food away from you. Its our vacation and we are not gluten-free so we should not have to deal with your problems on our vacation!" Really, you cant eat your cookie outside or your pie in the restaurant. Those things were so dang hard so that I could enjoy a pain free healthy vacation. Anyway I decided to come home a lone and they could not have to deal with my illness interfering with their need for cookies and pies. Now they are calling me crazy and told me I don't deserve to breathe because I left them there. I feel somewhat guilty about that, but they were sneaking their crumbly cookies and cheez its in my car. CRUMBS everywhere that I put my groceries! UGHHH. They didn't want to respect my property or my health or make any sacrifice to have me with them. I gave them what they wanted. To bad they now have a new set of issues to deal with like renting a car ( both are capable of for sure) and now finding lodging for the next 7 days. They also have lost any opportunity to have any relationship with me. To those of you that have to deal with this sort of insensitivity and lack of concern on a regular basis..... My prayers and thoughts and love to you all.
So it finally hit me last night. My husband got home from work and was asking about dinner. I didn't feel like eating. He reheated chicken and I just watched him eat. Then the tears came. I've only cried happy tears over my diagnosis (being happy that I finally had a solution), but this was the first time it really hit me. I have Celiac disease. This isn't something I have to deal with for a few months. This is a lifestyle change that I have to continue, forever. I was upset last night because I was tired of eating the same things (I know I need to experiment with cooking). I went to lunch with a friend and I was frustrated that somehow a non-gluten friendly item ended up on my plate. I'm tired of explaining to restaurants how careful they need to be. I'm tired of going places and having to constantly worry about what I can/can't eat. I fear that when I have kids, we'll have to go places that I won't be able to eat. I worry that the next time a friend invites me over, I'll offend them by asking what they are cooking (happened already). I worry that I will eat something wrong accidentally, but by the time I find out, I just have to deal with the symptoms. I'm am pretty much in constant worry. What if? I know that in the long term, I will feel better. I feel better already. But on a daily basis, this is an internal struggle that I am learning to fight. How do you cope? How do you deal?
If there was such as thing as Celiac Rage-- I've got it today. I am still healing my bowel from diagnosis last year. I thought I was making progress when I had a normal stool this morning. But then I had BM after BM after BM. And each one got progressively worse. Can I not be a human cesspool of Poop all the GD time? I just want one normal BM. I want it to be large in diameter, firm but not dry, and not some stupid pinky sized piece of poo pretending to be a normal poo. I know you're not the normal poo I used to have!!! When will I have normal stool? Frustrated and just angry. Not really at my poo ... just angry in general. Trying not to be negative and I have mostly good days but today is just a nasty day!