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No One Thinks It's A Big Deal....


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7 replies to this topic

#1 Pandoranitemare

 
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Posted 15 April 2012 - 12:37 PM

People in my life don't seem to think that the prospect of my having to go gluten free is any sort of a big deal...It's like they think it will be as simple as deciding not to, I don't know...drink tea for a week. I don't think they get just how huge the change would be, how gluten pervades so many things and what a learning curve it is, and why I am so worried about the fact I have been recalled following the blood test. I only have some understanding from being on this forum, so I feel a little better informed.
I won't have a definite answer until see my doctor (who has been on holiday, so it is taking forever!), and I am worried sick since I have been called back I am prepared for the the test results to be positive (as I was told they would not call me if they were clear). However, everyone just has this attitude that it is no big deal if it's positive.

Am I just being over sensitive? I just want to get my results so I know what is going on, but I am worried that if it is positive that people are going to carry on treating it like it is 'nothing' and not get exactly what going gluten free means...
Has anyone else had this sort of reaction?
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#2 melikamaui

 
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Posted 15 April 2012 - 03:01 PM

I'm sorry. Yeah, that happened to me too. I had a friend tell me that going gluten-free was no big deal and that she "gave up stuff for Lent all the time". Ummmmm, not the same thing. Not. At. All. On top of that she mocked me and called me "lame" for not wanting to attend her Cookie Party (!) which would, of course, not contain any gluten-free cookies. She really doesn't understand why this can be so difficult (though honestly now, a year and a half in, it's getting much easier for me) and our friendship is basically ruined because of it.

I feel for you. I really do. And I hope that you have some people in your life who understand just how hard this diagnosis and lifestyle can be.
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#3 Marilyn R

 
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Posted 15 April 2012 - 04:15 PM

If your experience is anything like mine has been, you're going to have responses that are all over the gamut. Some people will freak out and say "OMG, you poor thing! What in the world will you eat?" Others act like it's a figment of your imagination. It has helped me to research and become knowledgable, so even if I get supremely annoyed at certain responses, I use it as an opportunity to spread awareness. I really liked Dr. Peter Green's "celiac disease, The Hidden Epidemic". My local library had it.

You found a great place by joining this forum. The University of Chicago has a good site too.

The first couple of months are very tough, no doubt about it. You have to read labels and plan and give up habits, make changes. Grocery shopping is rough at first.

Life just stuck a major fork in your road, but it's not necessarily a bad thing. At least you know what you're facing, and so many people go undiagnosed for so many years, ending up with even more autoimmune diseases.

You'll find out who your true friends are. Fair weather friends may fly away. That bummed me out at first, but in a way it's a blessing to find out now. (Funny, it seems like the formerly neediest friends bailed on me.) Luckily, by getting on an even keel with your diet some of the former anxiety about things in general seems to fade away.

Wish you well, take it one step at a time and try to focus on what is most important first. (Your health always comes first.)
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 Darn210

 
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Posted 15 April 2012 - 04:51 PM

Yes it is a big deal. It's a lifetime committment.

Some people will see the light once they see what it takes to be gluten free. Most people don't understand until they see it/live it how many things gluten is in and what it takes to protect yourself from cross contamination.

Some people won't get it and you'll have to learn to let their comments roll of your back or leave them behind as you move forward.

We've been fortunate. Our family and friends have really tried to understand what we need to do to keep our daughter gluten free. If they thought we were over the top, then they've done a good job of keeping their mouths shut.

On a family trip, we stayed with some friends who did an outstanding job. We planned the menu and for the most part (with the exception of stuff like hot dog buns and morning toast) both families ate gluten free. There were meals of meat/potatos/veggies but also (gluten-free) pasta and pancakes. Afterwards, my friend asked her daughters what they thought of the experience and they responded that it wasn't as hard to eat gluten free as they thought it would be. She reminded them that they only had to do it for a week and my daughter has to do it for the rest of her life . . . that really brought the message home. I think that's the part that most people can't grasp. You can do anything for a few days . . . it's the "rest of your life" part that makes it a big deal.

That being said . . . it does get much much easier. You get your routines down, your favorite recipes converted, and your safe eating options when you are out of the house. My daughter was diagnosed over 5 years ago. The changes in quality and availability of food has improved significantly in that time. I expect it will only get better.
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Janet

Experience is what you get when you didn't get what you wanted.


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#5 Skylark

 
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Posted 15 April 2012 - 05:41 PM

Some people "get it". Others are utterly hopeless. I hope you are lucky enough to find some friends who do understand it's a big deal and can support you. If not, we're here for you. :)
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#6 Pandoranitemare

 
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Posted 15 April 2012 - 11:54 PM

Thanks so much for the supportive replies :) It really helps to know that others have faced the same sort of thing.

I have finally got a cancellation appointment, so will be getting my test results tomorrow! I would be lying if I said I was not very worried about what the day may bring, but I do feel a bit more positive about the fact that I have support here, if nothing else....so thank you all for that, you have no idea how much it means to me :)
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#7 Type1CDE

 
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Posted 16 April 2012 - 05:26 AM

): I feel so much the same!! I am definitely mourning the change....
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#8 mamajchis

 
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Posted 16 April 2012 - 10:11 AM

Most people don't understand Celiac Disease. Heck I had never even heaard of it until just a few years ago when I started searching for answers to why I had this maddening itching that just would not go away. Itching that lasted for days with no let up but did get better at times. Someone on another forum suggested it might be Celiac disease or at leas gluten sensitiviy. I quit eating wheat and guess what? The itching went away. Later I felt I was okay, and began eating wheat again which was a big mistake. Symptoms kept getting worse. A lot of the symptoms of Celiac disease are the exact same symptoms/compalints that I have had for years. In fact I have almost every symptom related to the disease.I quit eating wheat for good on March 19 2012 and I feel so much better than I did before.Within one day, the mental confusion which had been really bad,s so improved. The fatigue that had control over my body was so mcu better. I find that eating mostly natural foods, nothing processed is the way for me to go. This way you know what you are eating. Some things have hidden wheat and if you don't read the labels carefully you may be putting the poison back into your body. I don't miss the wheat. I know the damage it did to my body and I will not allow myself to go down that path again. Yes it is a big deal, but you can live with it and be happy and healthy doing so. I know a friend that has been gluten free about 6 weeks and has lost a lot of weight by just cutting wheat out of her diet! Good luck to you.
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