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Newly Diagnosed And A Wedding This Weekend
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13 posts in this topic

It has only been 10 days since being diagnosed, I think I am handling the new lifestyle pretty well, I am very lucky to have such an understanding husband and daughters. We have already made the kitchen and pantry safe for me, but I am still very paranoid about CC. My niece's wedding is this weekend, I have already decided to take my own food, I dont want to risk the chance of getting sick and missing out on the reception and dance. I have had a few extended family members make light of my situation, I have pleaded with them to read the information on Celiac's so they understand that yes even a small amount of gluten will make me sick. Does anyone else ever feel that people think that this disease is not real, has anyone else ever dealt with this and how do I make them understand the implications to my health if I do not stick to my diet. :unsure:

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Hi Bonnie Blue,

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! :-)

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I am also newly diagnosed and, yes, I have dealt with my friends and a couple of family members who have made light of the situation. It hurts a bit when it comes from family members. I am in college, which makes eating gluten-free extremely difficult, especially when my friends have seen me eat gluten a million times in the past. They don't understand why suddenly I can't. They think I am a hypochondriac, despite the fact that my headaches, GI upset, hip pain, swelling all have gone away since being gluten-free for a couple of months. Basically, I asked one of my closest friends to read some information on it, and after reading it, she essentially became an advocate for me when my friends are pressuring me. Same things with my boyfriend..when I went to visit my brother, his wife started making comments and my boyfriend said politely that he has seen how sick it makes me and he would prefer if I wasn't pressured into eating things that make me that sick. Also, my mother read Elizabeth Hasselbecks book about going gluten-free and she is also now a big advocate for me. So, I am only a few months out, but basically I always seem to be surrounded by at least one person who says "Ive seen her get sick and she will get sick if she eats that" and then everyone drops it. I am getting better at advocating for myself, but it has taken some time. Hope this helps!

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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.

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Thank you all for your kind words and encouragement, this site is wonderful!!! It is like finding a new family who understands you when no one else will. :D

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ya, it's just such a complicated disease to understand- even for those of us who are educated-> because it effects everyone so differently.

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 :)

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Call the hall and ask if they have a gluten free meal available.

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.

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When you bring your own food, bring something you really like. I love dark chocolate Sunbutter Cups. I don't get them often cause I don't need them. I took them so when my kids are eating big choc chip cookies or French fries or something yummy, I had a special treat, too. That way you don't feel as left out. Sometimes people say they wish they had my food.

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I think you are being very wise to bring your own food, and I congratulate you for making the commitment to take care of yourself! I have not been as wise as you, and early on I got sick more than I should have from accidentally eating gluten. It really sucks to get sick when you could have avoided it.

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. :)

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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.

Just sayin'...

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Every wedding I have gone to, I have just walked back to the kitchen and found either the chef, the catering manager, or the wedding planner--sometimes they have a headset on. They will make you food on site. Once they brought me a plate of my own appetizers at cocktail hour!

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!

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I am newly diagnosed as well and I have a wedding in November. I plan to call the place and ask them about special diet and then once I get there I am going to talk to someone in charge to ask for a plain meal. I'd rather do that than have to bring my own stuff personally.

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I wanted to say that taking care of your needs must be a priority in your life from now on. I was diagnosed in Dec. 08. This past August I had a colonoscopy and a biopsy showed I had no sign of celiac in my small intestines. Great news I have been doing something right. BUT a biopsy in my colon showed Non Hodgkin Lymphoma. It took 30 years of tests and docs to get my celiac diagnosed and treated so severe damage had already been done. Keep yourself healthy by taking care of your celiacs. Nobody has to endure the results of this disease but us. Good luck and remember the wedding is just another day in the rest of your life.

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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