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rorenchan

Member Since 03 Oct 2012
Offline Last Active Jun 09 2013 08:40 AM
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Topics I've Started

Unsupportive Family Keeps Demanding I Attend Rehearsal Dinner.

30 May 2013 - 10:32 AM

My only brother is getting married next week.  I really don't want to go because it's the first time I'll have to travel with celiac disease, but also because I dislike every one that will be attending the wedding (and they all dislike each other, it's a jerry springer episode in the making).  I'm very lucky I wasn't roped into being a part of the wedding party, and get to be a regular guest.  

 

My survival plan is to drive 3 hours to the hotel, check in, hide in my room with my electric stove and cooler of food, and not leave until the ceremony begins.  Then, after the ceremony and somewhere in the middle of the reception, I'll sneak back to my room and hide, eat dinner, and pass out, before leaving early the next morning to get the heck out of there.  The fewer people I have to socialize with the better.  

 

Unfortunately my dad found out I'm arriving early, and is demanding I attend the rehearsal dinner.  I said no.  Then he said I don't have to go to the rehearsal, just the dinner.  I said, no thanks, I'd rather attend the rehearsal but not the dinner.  So he got mad and stopped talking to me.  My brother asked me to go, and I again said no.  At first I thought they were just trying to be nice and make me feel including by asking and giving me a chance to decline, but now I realize they're just being inconsiderate of my disease.  If the dinner was somewhere in or near the hotel, I might have said yes, but they're going to a mexican restaurant a clear hour away on the other side of town!  It's ridiculous to think I would be ok with that!  So I ended up just lying flat out and telling them I won't be arriving until late, like 11pm, and unfortunately won't be there in time.  

 

I shouldn't have to lie to get out of a family function with unsupportive family members who think their social needs are more important than my health.  


My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.

28 May 2013 - 11:49 AM

I have blood and biopsy diagnosed celiac disease.  The only other celiac I know is my friend who was blood diagnosed the same year as me, but she didn't have an endoscopy because she had a hashimotos goiter complicating the procedure, and the doctors never followed up with it after her surgery.  After she recovered from hashimotos, she started eating gluten again, and is now blatantly ignoring the gluten free diet.  She's not doing it in preparation for testing either, she's just decided to not care.  

 

I am afraid to ask her about it, because I know she probably feels like it's nobody's business what she eats, but I can't help but feel upset by her decision.  I'm upset because she's ignoring her health, and I'm worried she'll get sick again.  I'm upset because she tells people she has celiac disease but still eats gluten, which just adds to the public confusion on how to properly handle gluten free dining.  I'm upset, because I feel alone, she is the only person I know with celiac, and now she's pretending like her diagnosis never happened. 

 

Is this because she never got an endoscopy, so she isn't taking it seriously? Should I be offended?  I don't want to be offended, but I can't seem to shake this.  6 months ago we were swapping recipes and food finds, and now all she talks about is the food she eats, the pastries, pizzas, wheat beers, etc.  I suddenly feel really alone.  I have other friends who eat partly gluten free as a personal choice, but it's really not the same.  


Surprised This Morning With Celiac Diagnosis, Not Sure What To Do

04 October 2012 - 01:11 AM

This morning at the crack of dawn (7:45am to be exact), I was suddenly awoken to my cellphone ringing. When I got off the phone, It took me a minute to realize what just happened. It was my doctor's nursing staff, calling to inform me that my blood tests came back positive for celiac disease, and she scheduled me for a mandatory endoscopy on Halloween, the earliest available appointment they had. She said they would be mailing me information regarding the disease and instructions for the endoscopy.

And that's it. Practically the only thing I knew about celiac disease going to sleep last night was that you can't eat gluten. It's been one of those crash course self study days, as you can imagine. It was unexpected, and to say I was blind sided is putting it mildly. Yesterday I had special k cereal, indulged in a Starbucks pumpkin cream cheese muffin, put soy sauce on my stir fry, and had breading on my chicken. Even my multivitamin and calcium supplements I take every day have wheat (centrum chewables and viactive caramel chews). When I took the blood test last week, I had coffee cake and a turkey pita sandwich maybe 30 minutes before going into the lab. I joked with the allergist reception staff that the market food in the hospital square smelled so good, and they told me to go try the fresh danishes. I vividly remember saying 'Well it's a good thing I haven't been tested for celiac disease yet!' I think I signed my own death warrant in that very moment.

It wasn't actually my allergist who scheduled me for the test. My gastro who I had seen a few weeks earlier thought it was strange my IBS responded to steroids I had taken for nasal inflammation. Simply because I told him this random fact in our appointment, he felt that I should rule out celiac disease. I went home that day without taking the test. It wasn't until my appointment with my allergist, who scheduled me for an allergy lab that day, that I remembered the celiac test was pending on my file. It was on my mind when I was talking to the reception staff about the danishes on my way out. I had my delicious coffee cake, and then had my blood drawn.

At least I was able to have one last pumpkin cream cheese muffin.

Medical history wise, it's a long story how I got here. I am 29, female. The short version is that 2 years ago I became sick with anxiety symptoms, constant panic attacks, food aversions, dizziness. 1.5 years ago I tested positive for mononucleosis after my lymph nodes started protruding on my neck giving me a cancer scare, and then my tonsils blew up, and my liver tested positive for viral hepatitis. Even though my liver rebounded quickly, I never recovered, having been bed ridden ever since. Sure, symptoms have changed over the months, but the constant lethargy, dizziness, and stomach issues remained the same. My gp told me to take a year off and to see a psychiatrist. I took her advice. After a year of waiting, I started aggressively looking for answers. I was having severe rhinitis at the time, and they put me on flonase for 2 months. Then since that didn't work, they put me on a 6 day steroids pak. Since that only kind of worked, they took a ct scan of my sinuses to take a look. They found two mucus retention cysts, and I was given access to see the ENT department. The ENT doctor examined me and said it's allergies, and had his staff refer me to see the allergist. Backing up some, after years of constant stomach and digestive problems, my doctor would not let me see a gastro specialist for just IBS, but once I developed internal hemorrhoids from it, they let me have a consultation. It was during that consultation that I mentioned the steroids and how my stomach felt less inflamed. He told me I can rule out celiac disease, but it's most likely just IBS and prescribed me to eat better and do yoga daily, which is why I didn't take it then. It sounded optional, like getting a flu shot. I guess I'm lucky that he put it on my file, and that I had to go into the lab anyway for my allergist. Or I'd probably never would have known.