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Family Says I'm Paranoid And Should Go Back To Eating Gluten


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#46 IrishHeart

 
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Posted 24 March 2012 - 03:44 PM

I wanted to pick up on just this part of your answer to the original question.

I have a friend who IS woken up by D in the middle of the night. Can you expand on your comment a bit more? I've posted here, trying to get suggestions. My friend does think (as do her drs) that it is IBS.

Thanks.
Plumbago



Perhaps it may yield you more answers to post this question about IBS symptoms as a separate thread?

Also, since it is an entirely different topic than the OP's original post, we should try to get back to the subject at hand (in all fairness to her) :)

Thanks!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#47 llama3

 
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Posted 25 March 2012 - 06:08 AM

A reallllly important point that the leader of my celiac support group pointed out to me - feeling super depressed, frustrated, and hopeless are total red flags that you've been glutened. When I joined the support group it was because I was feeling all of those things and very scared. Turned out I was definitely being cross contaminated. Even the most minute amounts affect me. I am sorry your family isn't very supportive :/ In my experience it is best to focus on you and getting yourself healthy and happy and with time they will see the improvement in you. If you are celiac and and not 100% avoiding all gluten and cross contamination then it is very likely for you to still feel cruddy. Do you live in a gluten-free household? This is very important. I had to kick my roommate out because he just couldn't follow the guidelines to keep me safe. Also, do you check any shampoos, lotions, makeups, etc.? I read a poorly misinformed book when I first was diagnosed that said if you're not eating it, that it doesn't matter - BS! I have gotten sick from mascara that had wheat in it, shampoo, even hairpsray. You ingest small amounts of those products and they build up and you react. Not everybody reacts to the small amounts but it sounds like you probably do.

It can feel so frustrating to be surrounded by people that don't understand. I highly recommend joining a local support group. If found mine through the Celiac Sprue Association website. I have learned so much from them and through the group have even found a few amazing restuarants that I can eat out at! We share recipes, stories, and rants about family and friends that just don't "get it". I also got into some inexpensive counseling so that I have somewhere to go each week and talk about me and my experiences and frustrations. I highly recommend that.

Stick to your guns and give your family some time. My dad is the most old - school skeptical man on earth. He thought this was some fad diet or made up thing. It has taken me 10 months of being gluten free and him seing HUGE changes in my life, heatlh and behavior. I could NOT believe it when he actually accepted a celiac brochure from me a couple of weeks ago and was even more in dismay when I received a call from him that he is now being tested for celiac :) Never give up hope!

You WILL be okay. It will be hard. And it will be easy. It will get frustrating, then you will find hope. You will find an amazing restuarant you can eat at then you will cross contaminate yourself on accident. Its a learning experience but it does get easier all the time. Its a roller coaster! The best advice I was given was to really focus on getting myself as healthy as possible so that if I DO happen to get glutened, my body is super strong and healthy to fight it. Best wishes to you and keep your chin up :)


Thank you. :) I have tried to make my house gluten-free ... replaced pots, pans, cutting boards, etc. I didn't replace things like plates or silverware. I checked all my personal care products and just realized last week that my cat's food - which I thought was gluten-free - actually isn't (which is a problem because he likes to rub himself on my face ...) so I'm in the process now of changing his food.

Most people do seem to think it's a fad diet. I have a relative who's now asked a couple of times, "So when someone stops eating gluten and then eats it again, they get sick?" And I have to explain again, "ONLY if they are already gluten-intolerant!" Why would I just eliminate all of my favorite foods for no reason so that when I eat them in the future, I would get sick? :huh: I guess part of the confusion is that I didn't seem sick, and if you're young and you look healthy, people assume you are.

But, you'll all be happy to know that I've patched things up with my mom and hopefully things will be uphill from here ...
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#48 IrishHeart

 
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Posted 25 March 2012 - 06:47 AM

But, you'll all be happy to know that I've patched things up with my mom and hopefully things will be uphill from here ...


That's great, honey--having emotional support from loved ones is crucial! :) Best wishes to you!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#49 Skylark

 
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Posted 25 March 2012 - 07:22 AM

Thank you. :) I have tried to make my house gluten-free ... replaced pots, pans, cutting boards, etc. I didn't replace things like plates or silverware. I checked all my personal care products and just realized last week that my cat's food - which I thought was gluten-free - actually isn't (which is a problem because he likes to rub himself on my face ...) so I'm in the process now of changing his food.

Most people do seem to think it's a fad diet. I have a relative who's now asked a couple of times, "So when someone stops eating gluten and then eats it again, they get sick?" And I have to explain again, "ONLY if they are already gluten-intolerant!" Why would I just eliminate all of my favorite foods for no reason so that when I eat them in the future, I would get sick? :huh: I guess part of the confusion is that I didn't seem sick, and if you're young and you look healthy, people assume you are.

But, you'll all be happy to know that I've patched things up with my mom and hopefully things will be uphill from here ...

That's great. I'm glad you sorted things out with your mom and got all the gluten out of your house. Hopefully you'll be able to avoid any more bad glutenings for a long while. :)

Right now gluten-free IS a fad diet. Unlike Atkins or the other fads, when Hollywood moves on to another diet, as many as 6% of Americans may be permanently gluten-free from celiac or gluten intolerance.
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#50 llama3

 
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Posted 15 May 2012 - 05:01 PM

Hi, I haven't been on this forum for over a month, but I thought I should give an update just in case someone remembered or came across the thread and wanted to know what happened. I've now been twice to a holistic doctor who has approved my diet (I'm basically doing the GAPS diet), accepts my self-diagnosis by elimination diet and agrees that with my various health issues I should not be eating gluten. I am feeling so much better digestion-wise though still having other problems. My family is being much more accepting and I was able to stay on the diet while visiting my parents for several weeks, with only one tense moment. :)

Thanks again for being so supportive, everyone.
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#51 Greyhound

 
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Posted 16 May 2012 - 12:39 AM

Some people on here have mentioned getting tested for coeliac disease but please remember that if you test negative for coeliac disease:
- it could be a false negative
- you could still have non-coeliac gluten sensitivity (so if the diet is working for you, STAY on it!)

I sometimes feel randomly suicidal for a day or two too. I did last week. I don't think I was glutened, though - I think it's part of the withdrawal.

I hope you're feeling better now. It's horrible when even your family doesn't understand. You're not being paranoid, though, and you know what's best for yourself x
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Blood test results normal. I refuse to eat gluten for a biopsy. Gluten-free since 15th April. Things slowly improving :-)




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