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
      104,132
    • Total Posts
      919,528
  • Topics

  • Posts

    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,168
    • Most Online
      1,763

    Newest Member
    Natalie1980!
    Joined