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So Long For Now

1desperateladysaved

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1desperateladysaved Proficient
1desperateladysaved
Posted

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

See ya.

Diana

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JNBunnie1 Community Regular
JNBunnie1
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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

kareng Grand Master
kareng
Posted

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.

squirmingitch Veteran
squirmingitch
Posted

(((HUGS))) Diana

modiddly16 Enthusiast
modiddly16
Posted

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.

VydorScope Proficient
VydorScope
Posted

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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IrishHeart Veteran
IrishHeart
Posted

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!

Diane-in-FL Explorer
Diane-in-FL
Posted

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. :(

kareng Grand Master
kareng
Posted

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.

IrishHeart Veteran
IrishHeart
Posted

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!

GFinDC Veteran
GFinDC
Posted

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.

love2travel Mentor
love2travel
Posted

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! :)

  • 1 month later...
1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

"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?

jerseyangel Proficient
jerseyangel
Posted

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:)

squirmingitch Veteran
squirmingitch
Posted

Welcome back!

GFinDC Veteran
GFinDC
Posted

"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.

RonSchon Explorer
RonSchon
Posted

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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    • knitty kitty
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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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