Posted 29 November 2004 - 03:38 PM
I know everyone, including myself, is new with this, but I really felt a few times like it was just too much bother for everyone to watch out for me. They would stir a pot with "gluten something or other" in it and then stir my gluten free food. The turkey was stuffed and on Thanksgiving I ate meat from the outside of the bird but after that they tossed it all into one big tupperware thing and there was stuffing that was stuck on some of the turkey mixed in, so I could eat turkey after that.
Everyone kept telling me, "oh its just this one time" or "it can't hurt you on just one trip"... blah blah blah. No matter how many times I told them it never sunk in. At one point, again this is new to me so I was asked a lot of questions about being Celiac... and I told them 1 in about every 133 people have some sort of wheat/gluten intolerance and everyone at the table came down on me. No way, I'm wrong, they have never heard of it. Twice I was told I was a pain in the ass (by the same person). I got the distinct feeling they all thought I was making it up. Most of my life I've been very healthy and yet I was called a hypocondriac a few times. I never get sick, I never read about something and then "get it" I've never been close to being a hypocondriac!! I was really hurt and I'm not that easily offended.
And of course along with all this I've got the runs back and all my stomach problems, I know I was glutened every single day to various degrees. I'm home now and so so glad. Its my family so I'll give them another chance but it won't be for a while, this was waaaaay to much for me to handle.
Sorry for the whine....
Posted 29 November 2004 - 04:42 PM
Long Island, NY
Double DQ1, subtype 6
We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!
Posted 29 November 2004 - 07:13 PM
So maybe in your Christmas letter to your relatives you can include a celiac article from a "reliable" source (since YOU obviously aren't one - according to them anyway).
Here's one: Newsweek article
Here's a list of articles:
list of news articles
Or there was another magazine article that come out in June or July I think that mentioned the 1 in 133 statistic and the average time to diagnosis as 20 years that was in Time or another major magazine like that but I can't find it.
There was also an article in the Reader's Digest this past summer about 10 diseases that doctors miss, and celiac was one of them.
Or maybe you can just have the article on hand next time you see them and if they try to tell you that just a little bit won't hurt you, you can give them the article.
Posted 29 November 2004 - 07:26 PM
We are nitpicky about this because our bodies are giant chemical vats, and chemistry is nitpicky. What anyone else thinks is irrelevant to the choices of what you put in your mouth once you have decided that you are doing the right thing. It's great that you'll be giving your family forgiveness, but I hope we can help give you some steel rods in that spine! ;-) :-D
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 29 November 2004 - 07:58 PM
I could complain about them for hours.
This is my body and now I know how to keep myself healthy. No one will put my health at risk. My family is not allowed to touch my food. I will bring my own where ever I go.
Posted 30 November 2004 - 02:55 AM
Eating in my family is.... well its how we socialize, it always has been, I know most of your families are probably the same but mine takes it to a different level for sure. Other then Turkey day we ate out every single evening (leftovers were for lunch) and as you all know its hard in restaurants.... no one in my family would even consider going to Outback or PF Changs, I'd guess they have never been in one and they wouldn't go. All meals are eaten in small very nice, very expensive restaurants (however I honestly felt more concern about my condition in the restaurants then at my brothers house), with wine flowing, appitizers, bread, many courses, dessert, coffee, after dinner liquores... food is what we do... we have a number of food reviewers (journalists) in the family.... anyhow, in truth I just don't fit in like I use too.
Any how thanks for the kind words... I can't wait for my symptoms to go away!
Posted 30 November 2004 - 06:14 AM
I just wanted to offer a few words of support! At least you have this forum backing you! I know its tough, with a family of "food lovers". Personally I come from a family of bread/carb loving fanatics. We all grew up with a mother who had a loaf of fresh homemade bread in the oven almost every morning! Now that I've expressed to many family members my possible issues with gluten I've heard many respond "Oh I could never live without bread!!" So I know it can be tough getting them to accept your disease.
My other suggestion would be to explain to them how awfully ill it makes you, in significant detail. Not everyone wants to talk to freely about their symptoms or reactions to gluten, but its seemed to work well for my family! Once they've heard some of the "gorey" reactions I've had to ingesting it they seem to understand that I'd rather live without that misery and survive without the luxury of bread.
I wish you luck in their ability to grow and understand your situation and what you can and can't have. It can be tough, but the relief you receive should be worth the agony they may put you through in the process of their learning. They can only refuse to understand it for so long.. Its just the time in between may be tough!
gluten-free since Nov. 18, 2004.
Always learning along with the rest of everyone else... a never ending process.
Posted 30 November 2004 - 10:20 AM
First of all, it is hard. You probably did exactly what I would have done in your situation! Actually, we gathered at my mom's house for thanksgiving for breakfast. She made a huge breakfast and tried to cook me plenty of gluten-free things Unfortunately, she made a breakfast "buffet" and placed all the food together like a long salad-bar for our family to serve themselves (there was about 20 of us). Cross-contamination was everywhere!
However, she had tried so hard, that I HAD to eat. (She was so proud of herself for working to make gluten-free food...it was so sweet). So, I ate. (I did explain about the spoon cross-contamination thing for next time). But like you, I know I was glutened (I felt it).
My point is...sometimes you feel you gotta do what you gotta do. I understand your "need" to eat something...even though you knew it was going to make you sick. I just hate it for you that your family was soooo rude (I hope that doesn't offend you)...but they were acting like as*holes to you!
I'm sending you hugs and hoping the next holiday is better for you. Why not pack a little something in your purse/suitcase as a "stand-by" for the nights that they all go out to eat?
Much hugs. -Julie
Posted 30 November 2004 - 10:58 AM
It's great that we have places like this where people understand! I don't know how I'd be starting out on this long journey without it.
Posted 30 November 2004 - 02:11 PM
There were times where my family was a bit rude but I think some of it (not all for sure) was just due to the fact they have never even heard of Celiac before, I guess it all takes some getting use too. But I have told my mom that I'm thinking of doing Thanksgiving at home next year.
Eating other meals at my brothers house won't be as difficult, he is a fabulous chef but at home they often eat very simply, grilled fish, veggies and rice... I will say the nicest person was my brothers girlfriend (of 7 years, girlfriend sounds so insignificant) she was very careful with the other meals and told me all the ingredients of their marinades and such, so that was very nice.
Thanksgiving is such a gluten heavy meal.... Oh well, thanks for your support!!
Posted 30 November 2004 - 06:18 PM
Luckily my mom understands and tried very hard during my visit. I have been gluten-free for a couple of months now. Good luck. Something we will have to live with for a very lond time
Posted 01 December 2004 - 06:10 AM
Posted 01 December 2004 - 07:30 AM
There are two types of insensitive people:
1. Those who are simply uneducated and ignorant to a problem
2. Those who are educated and choose to be rude
The good news is that there is HOPE for those who are uneducated and willing to learn
The bad news is that those who are educated and choose to be rude have made a decision to remain that way.
My point??? Some people/relatives are uneducated about celiac disease and ignorant to the problems and complications that it creates. For those people, we must be patient and educate them to the best of our ability.
Now, some relatives will take this new knowledge and work to incorporate it, others will go through a period of denial, and still others will choose to ignore the issue completely.
I try to remember that, in a way, my relatives are going through the same stages I did when diagnosed. First I was curious and wanted to know more information, then I was a little relieved and scared, then I wanted to cheat "just a little," then I got irritatated that this dang diet is such a pain in the butt, and now...I'm gradually learning to work with it and actually enjoy the learning and the results (feeling better)!
I send hugs to you all. -Julie
Posted 01 December 2004 - 08:09 AM
What a great perspective to take. Thanks for posting that. I think I'll utilize that in my strategy to dealing with relatives and friends regarding my new gluten-free lifestyle. I know I have a few ignorant friends who just won't understand, and well so be it.
gluten-free since Nov. 18, 2004.
Always learning along with the rest of everyone else... a never ending process.
Posted 01 December 2004 - 11:19 PM
Well, I've been gluten-free for just one day, having received the results of my biopsy and blood workd two days ago.[SIZE=7] which confirmed why I have had pain and problems since I was a baby. I'm now 48! So, it's a final relief....(well, at least I know now).
With Christmas coming up, there's going to be get-togethers with family and friends. Some of them are great, and understand about coeliac disease and gluten intolerance. While others we will be having a meal with are totally ignorant, but sweet people. I'm hoping there will be food there which is ok for me.
This forum is awesome. I've already found a lot of information which is helping me understand celiac disease more, and the diet.
Are there many of you who have an intollerance to rice as well as all the other things? I'm finding it hard to find a breakfast cerial here. I guess I could make myself a baked custard or something else, but I'm often really tired...I also have chronic fatitue so I usually want something quick and easy first thing in the morning with my cuppa.
Hope I haven't raved on too much. Good luck to you all.
Working towards wellness.
gluten-free (or trying to be) since December 1st 2004
positive blood test - Oct. 2004
positive biopsy -Nov. 2004
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users