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!

So Long For Now


1desperateladysaved

Recommended Posts

1desperateladysaved Proficient

Some day, maybe he will understand and I will be back.'

See ya.

Diana

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular

Some day, maybe he will understand and I will be back.'

See ya.

Diana

Because of the diet, or the time you spend online? Perhaps he should do some reading here.

Link to comment
Share on other sites
ravenwoodglass Mentor

Diana, Sorry to hear your leaving us. Stop in when you can even if it is under another name.

Link to comment
Share on other sites
kareng Grand Master

If you are allowed or can sneak time on a computer and see this-

I'm sorry. That's a very scary way to live. I hope you can get help when you are ready for it.

Link to comment
Share on other sites
squirmingitch Veteran

(((HUGS))) Diana

Link to comment
Share on other sites
modiddly16 Enthusiast

That's pretty upsetting that your husband would have a problem with you writing on a forum to try and better your health. I wish you the best.

Link to comment
Share on other sites
VydorScope Proficient

I wonder if he feels she is revealing to much private info. Some people are not as comfortable with public lives as others. He may be embarrassed even by the medical issues. If that is the case, it is good that she respects him enough to pull out.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

If it is a privacy issue he is upset about, (I assume you are using your real name right now) you can change your user ID--just ask Admin (Scott). He can help you.

Sorry you are leaving. You seemed to be getting valuable information and enjoying contributing as well.

My husband has a different take on the forum. It was one of the

resources that helped save my life. Now, it helps me to help others who are in the same sinking boat.

Sorry to see you go---I wish you well!

Link to comment
Share on other sites
Diane-in-FL Explorer

I agree with kareng. He sounds like a control freak to me. It's so sad when spouses aren't supportive, but this goes beyond that. :(

Link to comment
Share on other sites
kareng Grand Master

For those who have been following Diana, they will have read several times that her husband was not supportive of her doing what she needs to for her health. She can certainly change her name on here.

Link to comment
Share on other sites
IrishHeart Veteran

For those who have been following Diana, they will have read several times that her husband was not supportive of her doing what she needs to for her health. She can certainly change her name on here.

This is important information for anyone reading this thread.

thanks, K!

This community wants Diana to be well.

We will always be here for you, Diana!

Link to comment
Share on other sites
GFinDC Veteran

Well, maybe it is a temporary thing. I hope he comes to realize that celiac disease is not an easy thing to live with as a beginner, and that there is not much of anywhere else to get good advice about adapting to the gluten-free lifestyle. As we all know, most doctors are happy to tell you "guess what you have an autoimmune disease, don't eat gluten, go away". That's about as helpful as saying have a nice day. In Australia the doctors tell their patients to seek out the Australian celiac society for support. There doctor's at least know they are not qualified to help and admit it. I hope your husband comes to understand this is a serious disease, and that you are not going to find the help you need from just any joe-blow doctor or dietician. There are several celiac specialty centers in the USA that can help, but they may not be a convenient drive. Chicago, LA, and Baltimore have the main ones. This forum is a lot more accessible and convenient than driving a few hundred miles and paying for advice you get free here.

Don't forget the advice you got here, and watch out for hucksters selling phony gluten aides on the web. It's lonely being a person with a disease that nobody around you understands, even your own family. And your doctor doesn't help either. With celiac we help each other because we have to, not much of anyone else will do it.

Link to comment
Share on other sites
love2travel Mentor

That's pretty upsetting that your husband would have a problem with you writing on a forum to try and better your health. I wish you the best.

This is how I feel as well. I hope you have another support system in place as you do need one. Please take care of yourself and continue on the gluten-free road to good health. Remember changing your lifestyle is likely saving your life! It is that important. Life is a very precious thing.

Hope to see you back sooner than you think! :)

Link to comment
Share on other sites
  • 1 month later...
1desperateladysaved Proficient

First I would like to say that I have a good marriage. It is going through its hardest test. The test began long ago when my body was making life difficult on me. It's continual demands makes life hard for the whole family. Yes, the struggle has been there all along and now finally, knowing gluten is likely a causing factor, we may be able to quiet this body- atleast what is left of it.

If Only I could see this from my husband's side. He has put much money into supplements which have helped immensly. He has worked a full time job and been dedicated to spending time with all of our children. He sent me back to the doctor that had helped years ago. He has built a home in such a way to protect me from my allergies. There are countless ways that he has supported me in this trial.

What is it that I want? Someone to talk over the situation with and tell me how to cope. I want to be carried/held continually. I want him to trust my judgement when I say I am not up to something. I want some applause for standing up. (I know one doctor that would do this for me). My husband can't do these things. He is not medically inclined. Neither was I. He is busy. It is hard to see past a less-then neat-house and into the heart of a very frustrated lady. He simply cannot relate to constant fatigue. Lately, he told me he does not get fatigued when he works hard. He gets invigorated!

So maybe the forum can fill in some where he fails. Over the past few weeks I have been finding questions to ask and I am going to start posting them. I also discovered that a lady around the block is suffering. As I described my struggles, she said, oh, yeah I have had that same thing. Every subject I brought up. Most everyone on the forum has had them too. I know, because I have read them. I heard my neighbor was suffering (just by chance) when talking to a mutual friend. There are provisions for me put together by God who cares. He is working in the situation and on me.

So, I am back. Just incase my family would prefer it I have withheld my name. Love and health to you all. DT

I was not able to change my name or delete this, but for now we will have to go with it. Funny, I posted this as anonymous, but when I hit post it put my name.

Link to comment
Share on other sites
ravenwoodglass Mentor

Welcome back. I hope things improve for you soon. I agree that many folks that haven't dealt with overwhelming fatigue just don't get it. I don't think they understand that if we do push through it we then pay for it for days afterward. It can take a long time for some of us to heal to the point where we really have energy. Hopefully you will reach that point before too long.

Link to comment
Share on other sites
1desperateladysaved Proficient

"With celiac we help each other because we have to, not much of anyone else will do it."

You mean, You did not volunteer for this position either?

Link to comment
Share on other sites
jerseyangel Proficient

D, you can't change your username yourself but if you PM "admin" he will do it for you. That way you can post away and feel comfortable. Glad you are back:)

Link to comment
Share on other sites
squirmingitch Veteran

Welcome back!

Link to comment
Share on other sites
GFinDC Veteran

"With celiac we help each other because we have to, not much of anyone else will do it."

You mean, You did not volunteer for this position either?

Ha-Ha, I guess I volunteered the same way everyone did. I was born with the right genes and something made them click into gear. But we can help each other by sharing information and ideas about living with celiac, so that is a good thing. This site has helped a lot of people since it was started.

Link to comment
Share on other sites
RonSchon Explorer

Anonymous,

I'm glad you are back. The way you left seemed out of frustration, and I can really relate to that.

My marriage wasn't strong enough to withstand my inability to find a diagnosis for my problems, and I know I diminished my spouses and childs life because of the pains and discomforts and depressions that I was suffering blindly.

I remember back in 2003 that I even took several different prescriptions for depression - I had never been depressed before in my life. I couldn't even explain why I was. I knew I was bloating and sat on the toilet 4 hours a day, had no energy and fitness wiped me out beyond what I could explain, but no resolution ever came. At least not in time to save my marriage.

You are so lucky. You have the opportunity to save your life now, and in that you also have the chance to save your marriage.

I know I am very thankful for this forum, both the historical reference material and the regular chatter's, and am glad you will also be a part of the neighborhood.

Ron

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,496
    • Most Online (within 30 mins)
      7,748

    JamesDavid
    Newest Member
    JamesDavid
    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

    • 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.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...