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

rorenchan

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rorenchan Newbie
rorenchan
Posted

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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GottaSki Mentor
GottaSki
Posted

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 :)

GottaSki Mentor
GottaSki
Posted

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

 

https://www.celiac.com/forums/topic/75238-the-whats-for-dinner-tonight-chat/page-402#entry871141

tasha71577 Newbie
tasha71577
Posted

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.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

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.

rorenchan Newbie
rorenchan
Posted
  • Author

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.

GFinDC Veteran
GFinDC
Posted

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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bartfull Rising Star
bartfull
Posted

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.

rorenchan Newbie
rorenchan
Posted
  • Author

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.

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

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

eers03 Explorer
eers03
Posted

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.

nvsmom Community Regular
nvsmom
Posted

:( 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.  :)

gatita Enthusiast
gatita
Posted

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. :)

Pegleg84 Collaborator
Pegleg84
Posted

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.

rorenchan Newbie
rorenchan
Posted
  • Author

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. :(

pricklypear1971 Community Regular
pricklypear1971
Posted

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.

Fire Fairy Enthusiast
Fire Fairy
Posted

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.

Brandiwine Contributor
Brandiwine
Posted

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 :)

w8in4dave Community Regular
w8in4dave
Posted

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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