Newly Diagnosed And A Wedding This Weekend
Posted 03 October 2010 - 04:08 AM
Posted 03 October 2010 - 05:26 AM
Welcome to the Club and you are so very fortunate to find this site - it will become a great source of information and comfort; a great place to share and vent. The people here are wonderful. I think everyone here has run across or knows someone that doesn't understand the disease totally. Have you heard the expression, "You can lead a horse to water but you can't make him drink"? Same goes in your situation: you can give people literature, doctor's reports, talk till your blue in the face, but you can't always make them understand. When I was diagnosed with Cancer there was no questions about what my needs were going to be, so many rallied around and came to my aid. When the diagnosis was changed a month later to Celiac so many had no clue and thought it would be so much easier than dealing with chemo. And yes, Celiac is better than cancer, but there are so many emotional and mental hurdles as well as physical that is similar to cancer treatment. Most don't get that though. They think it is easy and simple. There is nothing simple about it! People don't know enough about Celiac to understand everything. Hey, I'm still learning everyday. But I think given time and positive news media, more and more people will accept it for what it is. And I find it helps to say, "I have an auto immune disease called Celiac". For some reason it helps denote the seriousness of it. And I always have a factoid ready about how many parts per million causes damage to the intestinal lining of the small bowel.
Good luck and the wedding and have a good time. Oh, and glad you are taking your own food. But take your own cupcake or sweet to have when cake time rolls around! :-)
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)
Posted 03 October 2010 - 06:13 AM
Posted 03 October 2010 - 06:24 AM
Posted 03 October 2010 - 08:56 AM
Posted 03 October 2010 - 09:56 AM
im not one of those celiacs who ends up running to the bathroom with "D" when cross contaminated- but i still have to understand it can do that to others AND i still have to be vigilant for myself anyways- because even tho im not getting immediate "D"- i have to remember that its damaging me.
its just difficult for us- especially in america- people dont know about celiac at all really, and they just think its the "new trend".
im trying to get my family to get tested, but they're annoyed with me bringing it up- and i think, deep down they dont wanna know. and then u read SOME recent studies that for some celiacs- remaining undiagnosed may have no effect on their life span at all... but i know for some undiagnosed celiacs it can be disasterous. i have had relatives on both sides die prematurely from heart disease.. an aunt with "Crohns", dementia & ataxia on one side and stomach cancer...
but i digress, lol.... have fun at the wedding
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx
Posted 04 October 2010 - 02:38 PM
They will tell you if they can provide a gluten free meal and who will be your room host.
You may have to make another call the day of the event and remind them about the gluten free meal.
When you get to the hall, go directly to the room host and let them know you are the gluten free person and where you are sitting. (This also reminds them to get the gluten-free meal together if they forgot)
ALWAYS have a safe meal on hand for you to eat just in case. You may not feel comfortable with the way your server handled the food or they may have not prepared your meal at all. Or worse yet, the food could just be plain and boring and not worth the risk to eat.
Posted 04 October 2010 - 03:19 PM
Posted 04 October 2010 - 03:27 PM
I'm on a really restricted diet now, but I have discovered that it's still really nice to have a bit of wine with friends, even if I can't eat the meal.
Posted 04 October 2010 - 07:14 PM
I had a friend tell me to stop whining yesterday when I was worried about eating in a restaurant. He said that he was saying it "with love". He thinks he understands because he's a vegetarian.
Ugh, that is awful. Tell him to get diarrhea for a week and a headache and a sinus infection and be unable to get out of bed for at least 3 days in a row and to have an ugly rash on his face, oh yea, and not to absorb vitamins, and see if he whines. I'll bet he does.
Posted 04 October 2010 - 07:19 PM
Make sure you find the people in charge, though. The servers do not always know what is in the dishes.
Most caterers are even more conscious of celiac disease than restaurants. This has worked for me every time. Two out of three times, I have had the server come up to me and say, "You are the gluten girl, right?" or if I start to explain, they say, "Oh, are you Christine? You have celiac disease right?"
These guys are very well trained. They aim to please. Don't be afraid to talk to them!
Posted 05 October 2010 - 05:48 AM
Endoscopy confirmed 8/31/10
Started gluten-free diet 9/1/10
Posted 05 October 2010 - 06:42 AM
Gluten free since Dec. 2008
New food sensitivities rear their ugly heads as time goes on.
Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010
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