Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

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


rorenchan

Recommended Posts

rorenchan Newbie

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.  

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

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 :)

Link to comment
Share on other sites
GottaSki Mentor

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

Link to comment
Share on other sites
tasha71577 Newbie

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.

Link to comment
Share on other sites
powerofpositivethinking Community Regular

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.

Link to comment
Share on other sites
rorenchan Newbie

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.

Link to comment
Share on other sites
GFinDC Veteran

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



bartfull Rising Star

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.

Link to comment
Share on other sites
rorenchan Newbie

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.

Link to comment
Share on other sites
Deaminated Marcus Apprentice

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

Link to comment
Share on other sites
eers03 Explorer

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.

Link to comment
Share on other sites
nvsmom Community Regular

:( 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.  :)

Link to comment
Share on other sites
gatita Enthusiast

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. :)

Link to comment
Share on other sites
Pegleg84 Collaborator

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.

Link to comment
Share on other sites
rorenchan Newbie

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. :(

Link to comment
Share on other sites
pricklypear1971 Community Regular

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.

Link to comment
Share on other sites
Fire Fairy Enthusiast

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.

Link to comment
Share on other sites
Brandiwine Contributor

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 :)

Link to comment
Share on other sites
w8in4dave Community Regular

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. ???

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,503
    • Most Online (within 30 mins)
      7,748

    PBunny39
    Newest Member
    PBunny39
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...