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My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.
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I have blood and biopsy diagnosed celiac disease.  The only other celiac I know is my friend who was blood diagnosed the same year as me, but she didn't have an endoscopy because she had a hashimotos goiter complicating the procedure, and the doctors never followed up with it after her surgery.  After she recovered from hashimotos, she started eating gluten again, and is now blatantly ignoring the gluten free diet.  She's not doing it in preparation for testing either, she's just decided to not care.  

 

I am afraid to ask her about it, because I know she probably feels like it's nobody's business what she eats, but I can't help but feel upset by her decision.  I'm upset because she's ignoring her health, and I'm worried she'll get sick again.  I'm upset because she tells people she has celiac disease but still eats gluten, which just adds to the public confusion on how to properly handle gluten free dining.  I'm upset, because I feel alone, she is the only person I know with celiac, and now she's pretending like her diagnosis never happened. 

 

Is this because she never got an endoscopy, so she isn't taking it seriously? Should I be offended?  I don't want to be offended, but I can't seem to shake this.  6 months ago we were swapping recipes and food finds, and now all she talks about is the food she eats, the pastries, pizzas, wheat beers, etc.  I suddenly feel really alone.  I have other friends who eat partly gluten free as a personal choice, but it's really not the same.  

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Welcome Back!!!

 

Very sorry to hear your friend is dismissing the positive blood tests -- my guess is she will regret returning to eating gluten -- hope it is sooner rather than before irreparable damage happens.

 

My advice for you is continue living your own gluten-free life -- take care of yourself -- maybe hang out here as there are many of us that were the only celiacs we knew before we were diagnosed.

 

Great to see you here again :)

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ps...here is a great thread to hang out and chit-chat and find some yummy things to eat:

 

http://www.celiac.com/gluten-free/topic/75238-the-whats-for-dinner-tonight-chat/page-402#entry871141

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you can only be responsible for yourself. If your friend has made this choice, she will have to deal with the consequenses. If she is a good friend, be their to support her as necessary. I know how you feel about being alone as I don't know anyone else that has to be gluten free.

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so as part of work, we've been following the Leader in Me training module, which comes with the book The 7 Habits of Happy Kids to share with our classes.  tasha, your comment reminded me of the first habit:  

 

Habit 1-Be Proactive.  You're in charge.  

 

rorenchan-I'm so sorry your friend is not taking her health seriously, but in the end you can only listen and help when asked, and as hard as it is, the only person you are in charge of is yourself  :unsure: I have a hard time dealing with this one, but it's the cold hard truth :P

 

lead by example, and hopefully your friend will come around  :)

 

sending positive thoughts, and please know that you are not alone!

 

 

 

you can only be responsible for yourself. If your friend has made this choice, she will have to deal with the consequenses. If she is a good friend, be their to support her as necessary. I know how you feel about being alone as I don't know anyone else that has to be gluten free.

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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.

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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.

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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.

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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.

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I hope that by chance you get to meet a new bona-fide gluten free pal :)

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Don't totally give up.  You may be the only person that has the ability to call her on what she's doing.  The right time will present itself and hopefully you'll be there to gently remind her that her quality of life really hinges on being gluten-free as a celiac.  I have no friends locally that have celiac disease.  I think its why I am so grateful for this forum.

 

Anyhow, you're not alone.  Hang in there and maybe your friend will come around again eventually and when she does you'll be there to help lift her up if you feel so inclined.

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:( Ah geez. I too hope your friend comes around sooner rather than later - before she gets too sick.

 

What popped into my head reading this post was if your friend was still hanging around you? I can imagine that she knows she is not acting smart and may try to avoid you so she is not reminded of what she should be doing.  She might be a bit ashamed...KWIM?

 

Good luck, and welcome back.  :)

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I agree with eers, don't give up, just be there. Maybe she'll come around after she sees you're gluten-free and surviving... I get frustrated with my own brother who has severe ataxia, but because his celiac blood test was negative, he doesn't even want to try going gluten-free. Aggghhhh...

 

I don't know anyone else who is gluten-free either, that's why I live on these boards! I hope you feel a little less alone here, too. :)

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I have a few friends who are Celiac, and several of my family are as well. Mostly I worry about my sister who isn't as strict with the diet as she should be. It's her choice, and her health, but I'm afraid of the long term impact. I think she's trying harder right now, but she definitely cheats.

 

You can't make your friend's decisions for her, but you can be a good example and show her that you're sticking to it and doing good. Hopefully she'll come around before too much damage is done.

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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. :(

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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. :(

I suggest the political election season approach: hide her posts from your feed or choose "important ones", or whatever they call it.

It helps.

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So I feel I have to chime in because I sympathize completely. When my Doctor realized I am a Celiac (I'm not legally diagnosed) he was treating my mother,  my older brother and I. It suddenly hit him when I came in for my annual check up and told him my migraines had increased to 131 days of the past year that it could be from Celiac disease. All of my mother, brother and my symptoms are in the lists of possible symptoms of Celiac Disease. The Doctor told me to go gluten-free for a month. It was amazing. I had one slip up at a family dinner because I didn't know Turkey's are sometimes injected with gluten. I was sick in well under an hour, really sick. The least bit of cross contamination makes me sick for at least 5 days. I will have been gluten-free three years November 2nd. My mother and brother refuse to try gluten-free or get tested. My brother became type 1 diabetic at age 29 (49 now). An illness which has never occurred in my family before. My 76 year old mother is getting weaker and weaker. She is also compensating for my not being able to eat gluten by eating all my favorite gluten filled foods and lots of it. She lives with me and though she knows cross contamination is bad she still gets me at least once every other month. I actually found a shell macaroni noodle in the middle of my bowl of beans. (I cook a large pot and store a big bowl in the fridge at all times) She is constantly complaining to me that she is getting weaker and weaker and the Dr's aren't finding the cause. Still she doesn't get the blood test.

 

Anyway all this to say I understand how it is to see another Celiac poisoning themselves. And I too know no one else in person on the gluten-free diet.

 

PS we no longer go to the Dr who figured out I was Celiac. He took my mother off her diabetes meds (type 2) and she had a stroke. No she didn't sue either.

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I'm certain my mother and brother have Celiac I believe my Aunt (mothers side) has it as well as their brother that passed away two years ago in his 40s. My mother is diagnosed with MS. My brother has sick migraines and nose bleeds and gets D. I wish I could get them to see what they are doing to themselves. They won't listen to me because in my search to get better and before I found Celiac I went vegan which they find rediculous. Because of the arguments we've had about food they won't listen to me. The only other individual in my life gluten-free is my son. My youngest shows no signs and is thriving without the GFD so it's just me and my oldest son. He is 7 so it's more like more responsibly, not so much like having an adult friend but I do enjoy having someone to share snackes and dinner with :)

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I don't think you should be offended by her choice , but maby very concerned! It is really just to bad she is making a bad food choice! Thats one reason why I think being diagnosed is a good thing for alot of people. So they KNOW!! So sorry about your friend. Maby just talking to her you can change her mind. ???

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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