Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

So Long For Now
0

20 posts in this topic

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

See ya.

Diana

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

(((HUGS))) Diana

1

Share this post


Link to post
Share on other sites




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.

1

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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!

2

Share this post


Link to post
Share on other sites

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. :(

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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!

2

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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! :)

2

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

"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?

0

Share this post


Link to post
Share on other sites

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:)

0

Share this post


Link to post
Share on other sites

Welcome back!

0

Share this post


Link to post
Share on other sites

"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.

2

Share this post


Link to post
Share on other sites

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

2

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined