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rorenchan

Member Since 03 Oct 2012
Offline Last Active Jun 09 2013 08:40 AM
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Posts I've Made

In Topic: Unsupportive Family Keeps Demanding I Attend Rehearsal Dinner.

30 May 2013 - 11:44 AM

I have that kind of family too (so glad my in-laws are awesome!)...but mine are supportive of my Celiac disease. But still, over the years I've just learned to set my limits with them. Don't let them walk all over you--especially when it comes to your health. I don't lie to my family anymore when they try to be controlling about what I do. I now tell them straight to their faces what I not willing to do and that's that. I say absolutely lie if you have to, but I think it's better to stand up to them and just say no. My family members would have tantrums and make threats if I said no and didn't offer a reason. So I figured, ok, I'll say a straight up no, wait for the tantrum and wait for it to pass. Didn't budge ever, and never will. After a while I said no to them just because I could. It's great having freedom to choose and being healthy. :-D

 

I'm sorry your family is the same.  It's so frustrating.  I'm getting pretty good at saying no, but this one dinner they're just adamant about, and I couldn't find any way to get them to let it go without lying.  It's going to take a while for them to really understand my limits.


In Topic: My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.

29 May 2013 - 12:50 PM

For those asking, we used to live nearby each other and frequently hung out together, but she moved away right before we both were diagnosed, so I don't get to see her in person anymore.  We just talk on facebook these days, where I see her food posts getting more out of control, and since she is so far away now there literally is nothing I can do except watch. :(


In Topic: My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.

28 May 2013 - 05:48 PM

Well, she can do what she wants with her life.  She ought to be aware that other auto immune disease can spring up easily enough in untreated celiac disease.  Some people have gone back on gluten for  acoupe years and developed DH (dermatits herptiformis) from doing it.  Or some other AI condition.  It's nothing to toy around with if you ask me.

 

 

Right? You would think she would know this already since she has Hashimotos and Celiac Disease, not sure which came first since she was diagnosed with both at the same time, and it was her Dr's quick thinking to screen her for both when she went in for the goiter.  I think she has some false hope in her recovery from hashimotos means her celiac disease is also recovered, and yet if she does understand that they are entirely separate diseases and treatments then she's just being downright stupid.  Theres really nothing good that can come from this.  :(

 

 

I understand how you feel. I have a friend who helped me when I was new to this. She is diabetic as well as having celiac, suffers from diabetic retinopathy (she's nearly blind), she has DH, and she just broke her foot and didn't even know it because she couldn't feel it - neuropathy I guess, whether from the celiac or the diabetes, I don't know.

 

She started eating gluten again at Christmastime. Her DH is out of control, she is so bloated she looks pregnant, and I know the gluten is making her diabetes worse too. But she said she just doesn't have the willpower to get back on her diet.

 

There is not a thing I can do except pray for her.

 

 

I'm sorry your friend is suffering.  It's like watching an alcoholic, and from my experience there's nothing we can do to help except hope they come around on their own.  I guess, that's the only thing I can do for my friend as well.


In Topic: My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.

28 May 2013 - 03:16 PM

Thanks again GottaSki!  Good to see you are still here.  I'll check out that thread.  

 

tasha - Thanks, yeah I think I'll just keep and eye out in case she needs me to be there for her if (when) it starts to get bad.  It's a good thing we have the internet to find people we can talk to.  I don't know what I would do without you guys.


In Topic: Surprised This Morning With Celiac Diagnosis, Not Sure What To Do

27 December 2012 - 04:56 PM

It's been almost 3 months!

I'm starting to feel some small but marked improvements! I'm still very tired, bloated, and the pain of digestion usually knocks me out every meal, so I still can't eat with friends just yet, but my mood is better, and my appetite is strong. My hands feel warmer, and I don't clench my jaw when I sleep as much, which helps a lot with my headaches, ear, and neck pain.

As everyone said, going to the nutritionist was a joke. He didn't know what celiac disease was, and all he had were old pamphlets supplied by the celiac disease foundation from like 2004. Then he gave me a diabetes workbook, and told me to just eat as if I'm diabetic, but just substitute the wheat products for gluten free products. I was so mad that I wasted my copay money on that hack.

I've stuck to the gluten free diet without cheating, and I also take the celiact supplements, but I don't know how long I will stay on them because they are kind of expensive for just a 1 month supply. I'm not entirely sure if they're a pyramid scam yet or not, but I do like that it's an all-in-one kind of supplement, but I still need to take more potassium and calcium. I still need to get all my vitamin levels checked, and I hope my pcp can order the tests when I see her on the 10th for the first time since my diagnosis. Hopefully she isn't as clueless as the nutritionist. If she refuses the tests, I'm finding a new doctor.