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So Long For Now
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20 posts in this topic

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

See ya.

Diana

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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.

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

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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.

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(((HUGS))) Diana

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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.

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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.

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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!

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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. :(

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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.

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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!

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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.

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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! :)

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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.

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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.

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"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?

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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:)

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Welcome back!

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"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.

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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

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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