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zus888

Member Since 10 Feb 2011
Offline Last Active Jan 30 2012 05:25 AM
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#761752 I Had Hoped To Never Return To This Place

Posted by zus888 on 02 January 2012 - 06:59 PM

I was thinking more about your post. When I was first diagnosed I was so mad. I felt like my body had betrayed me, again. While I had come to accept that I suffered from depression and ptsd, I had accepted that my mental health was screwed up. But accepting that my physical body was damaged and had something wrong with it was a hard thing to accept. I was so angry with my body. I hated it. I wanted to punish it for what it had brought me to. That I would have to change my life because it couldn't keep itself healthy. It couldn't do it's simple job of being able to move me around and make it so I could do things. If it couldn't do those basic things, why should I care about it? It took me time to be able to forgive it, and myself for the new challenges I was going to have to face. I was wondering if you were feeling anything similar with your liver problems and possible celiac. When I was able to realize this it was easier to deal with. It was still hard, but easier.


Funny you mention this. Right after my diagnosis of celiac, I wrote hate mail to my body. On facebook. I won't write what I posted on here because there's a lot of "colorful" language.

And, I feel terrible for airing my trials when I KNOW so many of you here have been through a much more nasty hell than I've ever experienced. But...it's my journey, I suppose. And I can only draw from my own experiences and, hopefully, learn from others.

I cannot tell you how much I appreciate all who have responded. I've been in a mentally dark place, and I don't wish to go back. I'm not fully out of it, but at least, I'm now in a place where I can hear what people are telling me without having it fall on deaf ears (which was the state I was in last week).

Thank you, again, everyone, for caring and taking the time to write.
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#761683 I Had Hoped To Never Return To This Place

Posted by zus888 on 02 January 2012 - 02:31 PM

I have to admit that I'm surprised that many of the responses are not what I expected to hear. So, I have been proven wrong in assuming I knew what all of you would say.

I've been given a lot of food for thought. Not just from you all, but also from friends.

I'm just trying to make some sense of my feelings. I know, rationally, what the correct thing to do is. I also know what I would tell my children. I know I need a new perspective, and, really, that's what it all boils down to. I am capable of doing the diet and sticking to it stringently. It's a matter of having the will to do it. It makes no sense that I'm doing so much to try to temper the one disease I have absolutely no control over and give in to the one I have full control over. It's not logical in the least.

I talked to a friend today who cried about her frustration and sadness about two people in her life that are making choices that only hurt them in the long run. And I could see my husband in her tears. She wasn't even talking about me. But the theme was the same nonetheless. I'm not one to believe in signs or fate or the intervention from a God. But I found it uncanny the running theme of our discussion. I felt horrible for her pain, yet could not come up with a way to make her feel better since I was that person she was describing. I am the one making a choice to cause harm to myself in the long run.

I just need this to be a choice I make for myself, I guess. I need to look at the food, not at something that I can't have, but as something I don't want. There is a difference between the two. And, yes, it's a matter of perspective. It's going to take me a while to get there. Months, maybe. But I'm feeling more hopeful that I can be in a mental place to make a healthy choice for my body.

I truly appreciate all the responses because it has really helped me to think through this.
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#731386 Always Feeling Cold

Posted by zus888 on 17 September 2011 - 08:25 AM

I'm always cold. Been that way for years. Even after gluten-free, I'm still cold. The only thing that seems to change my cold tolerance is increasing my thyroid med dose.
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#730684 A Tattoo To Symbolize The New Me

Posted by zus888 on 15 September 2011 - 09:18 AM

Love the idea. I just got my first tatt last year for my 40th birthday. I LOVE it. It's on the inside of my forearm. It's a very meaningful tattoo to me. I'm planning on getting another very soon.

As for the old and wrinkly. If we're lucky, we'll all get to that point. I had given up hope in ever reaching a point of getting old and wrinkly, so if it happens, then I'll be grateful, and how my tatt looks will be the last thing on my mind. As one person put it: I'll be as old and wrinkly as you, but I'll just be more interesting to look at! LOL! I like that perspective, even if I don't have a lot of tattoos.
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#729223 I'm So Bitter And Sick Of It

Posted by zus888 on 10 September 2011 - 05:48 PM

And... I'll probably need to be reminded of it again. Maybe I should print it out and post it in my kitchen.
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#729222 I'm So Bitter And Sick Of It

Posted by zus888 on 10 September 2011 - 05:45 PM

Appreciate the food that you eat for what it is - not for what it's trying to mimic.


THIS might be the best thing you could have said. I know it sounds really obvious, but I never really thought of it this way.
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#727917 No Negs Just Pos

Posted by zus888 on 05 September 2011 - 12:30 PM

Have you had your thyroid checked? How about your blood tests? Are you lacking in any vitamins or nutrients? Wondering if there is some other underlying cause/disease/condition.

Sorry I can't help you further. I have not had your symptoms and cannot give you any first-hand experience.
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#727791 More Confused Than Ever

Posted by zus888 on 04 September 2011 - 05:26 PM

Truth? I don't know. And I can't say that anyone truly knows. The tests aren't perfect - no test is. You *could* have celiac and have biopsy results showing absolutely nothing.

My story:
All tests negative except the IgG gliadin, which was just one point above negative. This was done AFTER I had a positive biopsy. And, guess what, I could, technically, not have celiac. There ARE other reasons to have blunted villi: soy or dairy intolerance, crohns, intestinal cancer, lymphoma, and a few other things. I had no symptoms when diagnosed. Nothing besides fatigue, but, really, that hasn't improved much after the diet. And my fatigue isn't really in the realm of abnormal when you consider the fact that I have 3 kids: 7, 4, and 2 years old. So, yes, I have my sights on the possibility that I, in fact, may not have celiac disease.

Statistically speaking, the chances are quite high that it IS celiac. First, I have a number of other autoimmune diseases and they seem to travel in packs. Second, the likelihood of this being something else with both the IgG gliadin and the biopsy coming back as positive is pretty slim. That doesn't mean it's impossible though.

So, the PROBABILITY of you and me having celiac is high, but the true test is going on the diet. I will be vigilant for a year and get retested (both endoscopy and blood). If my results are unchanged, I'll be insisting on other tests to rule out the worst of the possible culprits.

I probably haven't helped you at all. What it boils down to is the science hasn't caught up yet. We're still on the learning curve with celiac and gluten intolerance. What we DO know is that the treatment for both is EXACTLY the same. We also know that both involve the activation of the immune system, with a different pathogenesis. Additionally, BOTH are very serious and are associated with all the other awful symptoms, risks, associated diseases, etc.

Going on the diet is possibly the best test we have now. And, even that isn't perfect because there ARE a select few people out there who are silent celiacs. Though rare, they do exist.

Sorry I can't answer your question.
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#726178 How Did Your Doctor Tell You?

Posted by zus888 on 28 August 2011 - 06:01 PM

Wow. I'm so sad to hear all these stories. My doc was wonderful. He's been following my care for a couple years, and my endo was part of the monitoring of my crohns disease. It just so happened that he found the blunted villi (via biopsy). I can't remember how I was told (over the phone or at the office). My memory is no good even though I was only diagnosed this February! What I do remember is the office visit where he talked to me about my biopsy results at length. Told me MANY times that he strongly recommended that I go on a gluten-free diet. Talked to me at length about the disease, where I can find information, and gave me websites and the web address of a recent conference. He gave me information about a local gluten-free bakery and insisted I talk to the dietician. I was unconvinced, so he gave me an Rx for the blood tests (since I insisted).

The dietician was full of information and gave me so many things to take home (booklet, copies of local restaurant menus and coupons, etc.). Everyone was compassionate, but also adamant about the seriousness of the disease.

I didn't realize how lucky I am to live in the Pittsburgh area. They seem to have really awesome docs here.
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#721465 Glutened?

Posted by zus888 on 08 August 2011 - 04:23 AM

If it's any consolation, you might be nearing the end of your episode. From what I've read on here, most people's reactions last 4-5 days, though some are shorter and some can be a lot longer. Also, what you describe is similar to what I have read here from others. I don't get digestive responses, so I can't relate from experience, but I do know that your experience sounds very much like many others on this board who have been accidentally glutened.

Hope you start feeling better soon!!
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#720785 You Know You're Gluten Free If......

Posted by zus888 on 04 August 2011 - 11:50 AM

I had to throw 3 slices away because I wasn't thinking and put it in the wrong toaster! ACK!

also know you're gluten free when you start having nightmares about eating something with gluten.
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#720547 Have You Ever Gone All The Way Once You Realize You've Been Glutened?

Posted by zus888 on 03 August 2011 - 11:59 AM

Well, one craving is gone. I just ate half a package of Kinni-Toos (gluten-free oreos). I feel a bit better now. And, really, I could eat the rest of the package. Nevertheless, I sure would like to sink my teeth into some gluten-filled stuff!
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#695827 Does Celiac "define" Who I Am?

Posted by zus888 on 29 April 2011 - 04:32 PM

I think celiac "defines" you only if you let it. But I think there is a difference in being overwhelmed and sometimes consumed by it and being DEFINED by it. I'm definitely consumed by my diagnosis and still feeling my way around. And I'm not sure I'll be able to go out to eat or any social event involving food without fear or that feeling of "living without."

I have a number of diseases that are worrisome, but NONE of them DEFINE me. I refuse to let them define me. However, none of them affect my daily life the way celiac does. Celiac makes my social life uncomfortable - and, as it stands now, pretty much nonexistent. I find myself turning down things I used to do because it's torture watching people eat things I wish I could eat. No amount of eating beforehand makes this easier or better for me. I hope in a year or two, I won't be bothered by this, but who knows. Despite all of this, it doesn't define who I am. I define who I am by how I choose to deal with it. Right now, it's a thorn in my side, but eventually, I hope it will become just something I do.
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#694638 "glutened" Symptoms - When Did They Start?

Posted by zus888 on 24 April 2011 - 05:09 PM

I asked this same question not so long ago and the answers were various. Much of it depends on when you got glutened. For one person, it may have taken 6 months before an accidental glutening occurred. For another, it may be 3 months. I accidentally glutened myself after 3 weeks of being on a gluten-free diet, and I reacted. I didn't have any digestive issues (but I never did), but I did have an intense amount of fatigue and depression.
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#688499 Need To Vent, Shoulder To Cry On And Everybody

Posted by zus888 on 31 March 2011 - 11:10 AM

He can be so sweet and gentle and then the next he can be very controlling. Every time we get into an argument it's my fault. If I would just follow along and go his way we'd be fine and the one saying he has that really irritates the heck out of me is i'm doing this to myself. If I would just go along and keep my mouth shut and do what he wants I would be just fine. AAaarrrrhhhhhh!



Do you have ANY idea how alarming that sounds? This is the CLASSIC foundation of abuse. You may not recognize it now, but I'd be surprised if there was even one person on here that doesn't hear the alarm bells ringing.

This sounds like a toxic relationship and honestly, I don't know why you'd give him another chance to treat you that way. Because that's really what you are doing. NO ONE should be treated that way. It seems obvious to me that he has no respect for you. I know it's hard, but you need to have enough RESPECT FOR YOURSELF to walk away.
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