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


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18 replies to this topic

#1 rorenchan

 
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Posted 28 May 2013 - 11:49 AM

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.  


  • 1
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

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#2 GottaSki

 
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    "The past is the past...I've got places to be."

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Posted 28 May 2013 - 12:45 PM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 GottaSki

 
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Posted 28 May 2013 - 12:47 PM

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

 

http://www.celiac.co...402#entry871141


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 tasha71577

 
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Posted 28 May 2013 - 02:19 PM

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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#5 powerofpositivethinking

 
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Posted 28 May 2013 - 03:15 PM

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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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#6 rorenchan

 
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Posted 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.


  • 1
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

#7 GFinDC

 
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Posted 28 May 2013 - 03:19 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.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 bartfull

 
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Posted 28 May 2013 - 03:23 PM

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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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#9 rorenchan

 
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Posted 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.


  • 1
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.

#10 Deaminated Marcus

 
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Posted 28 May 2013 - 06:36 PM

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


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#11 eers03

 
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Posted 28 May 2013 - 06:38 PM

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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Diagnosis 11/2012

#12 nvsmom

 
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Posted 29 May 2013 - 07:39 AM

:( 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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#13 gatita

 
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Posted 29 May 2013 - 07:58 AM

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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Diagnosed with wheat hates me 4/13


#14 Pegleg84

 
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Posted 29 May 2013 - 08:29 AM

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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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#15 rorenchan

 
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Posted 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. :(


  • 1
Oct 2, 2012 Celiac Disease Comprehensive Panel: Positive:
(tTG) Ab, IgA: >100
Endomysial Ab IgA: Positive
Enodmysial Ab Titer: 1:160
IgA, Serum: 286
Endoscopy on 10/31: Positive, marsh stage 3

Officially diagnosed celiac by both blood and biopsy.
Gluten free as of October 2012.




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