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WinterSong

Member Since 18 Mar 2011
Offline Last Active Yesterday, 07:24 AM
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#930952 Is A Celiac Dx Necessary?

Posted by WinterSong on 17 September 2014 - 06:57 PM

Besides the insurance issue.....

 

I'm fortunate enough to have a solid diagnosis. I've heard a lot of gluten sensitive people on this board say that they would get too sick doing the gluten challenge and for them it wasn't worth it. They just treat it as seriously as a Celiac would. My mom is also one of those people. 

 

Some people feel like they can cheat if they don't have a Celiac diagnosis. My sister is most likely gluten intolerant or Celiac, but she won't do a thing without positive blood work. 


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#930871 Do You Ever Break Down And Eat Gluten Every Once In A While?

Posted by WinterSong on 16 September 2014 - 06:45 PM

I'm rarely tempted and have never purposefully cheated. I'm afraid that I would be out of commission for days and would be unable to work. I hate feeling sick. It's just not worth it. Plus, I eat the most amazing homemade gluten free foods and have great restaurants all over my city. I'm one happy girl  :)


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#930786 Tea Recommendations

Posted by WinterSong on 15 September 2014 - 05:53 PM

Are we allowed to post links onto other sites? Just in case we cannot, I just bought a sample pack of Teatulia's teas from amazon. Less than $6  total for three containers - green, white, and black tea. Full price is normally $9/container. Worth trying!  :D


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#930643 Tea Recommendations

Posted by WinterSong on 13 September 2014 - 05:19 PM

I love Good Earth. I also recently discovered Teatulia. Their white tea was so good. More expensive than what I currently have, but I may splurge a bit for my birthday  :D


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#909282 Say You Have Celiac Without Dx

Posted by WinterSong on 18 March 2014 - 07:03 AM

Here's my take on it:

 

I am diagnosed via blood work, endoscopy, and positive response to the diet. One of my family members is self-diagnosed and just tells everyone that she has Celiac. We have all of the same symptoms, and we can trace symptoms and complications back through several generations of our family. She didn't have the best health insurance at the time, so she decided to just go on the diet 100%. And she's feeling much better now. Unfortunately, no other members of our family are willing to get tested or try the diet. 

 

The only time when I have a problem with the concept of being self diagnosed (and this happens a lot in my experience) is when I meet someone who is self diagnosed but readily cheats or is just gluten-lite. Those people spread the wrong information and make the people who do have a serious problem look crazy.

 

However, getting an official diagnosis can be difficult, and there are lots of people on this board who couldn't handle the gluten challenge. So I say that as long as you're 100% gluten-free and take the diet seriously, it is not my place to judge. You make a positive change in your life and you're feeling better. That's what matters.  :)  

 

And if you need to say that you have Celiac in order to get people to take you seriously - go ahead! I sometimes tell restaurants that I am super sensitive and will start vomiting if I digest gluten and they for sure take me seriously then. They don't want other customers seeing someone throw up right after eating one of their meals, lol. Luckily I live in New York (which is gluten free mecca) and I have found a lot of restaurants that take Celiac VERY VERY seriously. 


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#900219 Gluten Intolerance Or Celiac Disease?

Posted by WinterSong on 19 December 2013 - 04:57 PM

I agree with the post above, and I'll add my two cents - In my opinion, IBS is the name for a collection of symptoms, and doctors tell you that you have it when they don't know what's wrong. Don't settle for this diagnosis because it doesn't really give you an answer on how to fix the problem. 

 

It sounds like it could be either Celiac or a gluten intolerance. Check that a full Celiac panel was done, and if you can't get further testing try going 100% gluten free and see if it helps (but only after all testing is done). It could also be a different food intolerance or multiple (I know I'm sensitive to eggs and possible soy). Gluten seems to be the culprit much of the time and is a good place to start. 

 

Remember that you are the best advocate for your family, so keep learning and asking questions. I've found that you cannot always depend on doctors to know what is best. 

 

Good luck and keep us posted! :)


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#899955 Am I Accidentally Glutening My Daughter?

Posted by WinterSong on 17 December 2013 - 06:59 AM

I agree with everyone on follow up testing.

 

I'm concerned, as well, with what your doctor said about "not going overboard." It is WAAAAAYYYYYY more than just not eating gluten. Cross contamination is so easy in shared kitchens. Toasters, cooking utensils, pots, pans, cutting boards, plastic Tupperware containers, jars of peanut butter/jelly/condiments, counter tops with crumbs on it - all of these things could easily make your daughter sick. 

 

You might want to look into getting a new doctor.


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#895805 New To gluten-free And Anxious About Going Out

Posted by WinterSong on 14 November 2013 - 05:11 AM

If the banquet is being held at a restaurant again you can call the restaurant and ask for something to be set aside for you.

 

I always carry one or several of these things with me: gluten-free crackers, kind bar/think thin crunch bar/bakery on main bar/simply bar, nuts, gluten-free granola, fruit, bag of sugar snap peas. I'm constantly on the go, so I end up eating at least one meal a day out of my purse. 

 

I personally wouldn't trust bar food. I stick with wine and bring crackers with me. 

 

I went to a wedding recently and mildly glutened myself on some appetizers that the caterers thought were gluten free (I should have been more careful). Couldn't eat anything for the rest of the night and was feeling not so great. I'd say better to have your own snacks if the caterers aren't 100% positive that their food is safe. Just hold onto a glass of wine and take small sips all night. And remember that while food is a factor at social gatherings, the most important part is enjoying good company  :)


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#895453 Amazing Conversations

Posted by WinterSong on 11 November 2013 - 12:23 PM

There's a really wonderful thread on here called "Ridiculous Conversations". This is my attempt at the opposite - a thread for people who surprise us and GET IT. When this happens, I swear I'm so surprised that I want to jump up and down. 
 
I feel like this kind of thread could also serve as a reference to significant others, friends and family members who are visiting this forum and are unsure how to best support their Celiac/gluten-free loved one - to perhaps learn through example and see how easy it is to make our day and lives a little easier.  :) 
 
I'll start (heads up - most of my stories are about my boyfriend).
 
1. When I first started dating my current boyfriend I was worried about telling him about kissing CC because my last boyfriend was awful, called me paranoid, and continuously got me sick. So one night my new boyfriend had a beer, and the following conversation happened:
Boy: I'm so supportive of your gluten free diet. It's great. As long as, ya know, I can't get you sick by kissing you or something....(Pause from me)...wait....Could I get you sick? 
Me: (tentatively/briefly explains the danger of it)
Boy: Well, I don't want you to get sick! And I'm gonna want to kiss you....so I'll just drink cider or wine! Or I'll brush my teeth - that would be okay, right?
Me: (totally shocked) Well, yes, that would be great. The more romantic thing, of course, would be to just eat gluten free with me, and you already do that.
Boy: No problem. I mean I'm gonna want to kiss you!
Me:  :wub:  :wub:  :wub:
A week or so later he bought a new pan and cooking utensils so that we could have some dedicated cookware at his apartment for us.  :D
 
2. I took my boyfriend to a jazz club last night as a surprise birthday present and ordered us a bottle of wine (I told him to plan on going out for drinks rather than food). The waiters were walking by with yummy looking food, and halfway through the show he got hungry. He pointed to a few things on the menu. I told him, "Definitely get something if you're hungry. I just don't know if it's gluten free." He didn't order anything and later said, "I decided against it because I'd rather kiss you."  :wub:  :wub:  :wub:
 
3. Last year I spent Thanksgiving with a friend/her family, and I was prepared to cook my own food. Her mother called me several times the week before, said she read up on Celiac and cross contamination, and explained how she was going to make every dish. When I got there, she had a brand new cutting board and sponge ready for me along with a goodie bag of gluten-free snacks to have throughout the day. She showed me how she prepped the food, and sure enough she did EVERYTHING right! I felt so privileged to be in the presence of such kindness and to have had such a wonderful welcome into her home, especially when I had no where else to go for the holiday.

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#892931 Feel Like A Hypochondriac

Posted by WinterSong on 21 October 2013 - 11:30 AM

It's worth a try. I know a lot of people who feel better when they go gluten free (even without having Celiac). Non-Celiac gluten intolerance is not a rare thing these days. 

 

I went dairy free for the first few months of my Celiac diagnosis. It turns out that I can eat dairy just fine these days. But it didn't hurt to try.

 

Just make sure that if you try it, you do it 100%, otherwise what's the point?

 

Also, people who haven't dealt with constant stomach aches, cramping and bloating for years have no idea what that feels like. My (now ex) boyfriend didn't understand why I was so eager to figure out what was wrong with me. He was in complete denial that I was sick. (Meanwhile, I was thinking, "Well, it's not like I invite you into the bathroom to share that experience..."  :wacko: )


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#892380 Homemade Bagel Recipe?

Posted by WinterSong on 17 October 2013 - 08:24 AM

photo1_zpsdd19a9cd.jpg

 

They taste good AND they're beautiful!! 


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#755678 A Cure For Celiac!

Posted by WinterSong on 11 December 2011 - 06:47 AM

I would be very skeptical about this, and even if it does make it past clinical trials that won't be for years. If it's only your first few days gluten free, remember that even though it seems hard right now it does get easier with time (especially as you really start to feel better).
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#748692 What Are You Cooking For Thanksgiving?

Posted by WinterSong on 18 November 2011 - 08:53 AM

One of my friends is a self diagnosed gluten intolerant, and we went gluten free within the same week of each other. I invited her over for dinner, and we're having our first gluten-free Thanksgiving :)

Pretty simple menu, but I'm excited:

Steamed vegetables
Mashed potatos
Turkey breast
Gluten free sage stuffing

I'm still debating on the dessert. It's either going to be home made chocolate mousse or apple crisp (side note: I tried gluten-free oatmeal for the first time this week and no reaction! I missed oatmeal :) )

It's going to be a nice night B)
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#721584 Technical Question About Healing

Posted by WinterSong on 08 August 2011 - 07:03 PM

Do the villi start growing back once you start a gluten free diet? Or do they grow only begin growing back once antibody levels are normal? Anyone know? I'm just curious. :)
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#714766 Help!

Posted by WinterSong on 06 July 2011 - 07:36 PM

Hi JewelZZZ and welcome! Yes, your son has Celiac, and that would probably account for him being underweight. The problem is that some doctors will not officially give out a diagnosis without both a positive biopsy and blood test. But as txplowgirl said, they may have missed the area. And it is possible to have false negatives. But there are no false positives. Your son definitely needs to go on a 100% gluten free diet. So welcome to the board - hope he continues to feel better!
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