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An Update

zus888

By zus888
in Coping with Celiac Disease

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zus888 Contributor
zus888
Posted

I talked my doc into giving me another endoscopy. He wishes that I had some level of better health as a result of the diet, and thinks there's a possibility of it being refractory celiac sprue. We spent a lot of time discussing my mental and emotional issues pertaining to this lifestyle, and barring any overwhelming evidence to the contrary, I'm planning to go off the diet. He is aware of my decision and feels bad that I haven't seen any benefits from it. My quality of life has decreased so much as a result of this, and I don't want to continue living like this. I hate that I've had to resort to taking Prozac in order to cope. Unfortunately, it didn't work. Instead of making me feel better, it killed any positive emotions that remained. I felt like an emotional zombie. I lost any desire to care about pretty much anything and motivation was at an all time low. I'm off of it now, and feel LOTS better, but the thorn in my side remains. The holidays don't help in any way, shape, or form.

I remain unconvinced that I even HAVE celiac disease. No one has been able to rule out any other possibility for the blunted villi. Additionally, I just read something that said that elevated IgG gliadin can be found in people without celiac, but with inflammatory bowel disease.

My endoscopy is December 21st. I should know results within 72 hours. If the villi are the same or worse, I think it's safe to assume that the gluten-free diet does nothing for me. If they are better.... well, I'll just have to cross that bridge when I get to it. I can't say that I'll remain on the diet or not. My heart isn't in it.

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lynnelise Apprentice
lynnelise
Posted

It's a personal decision and only you know if the risk are worth the benefits. At least your doctor is aware so he can keep an eye on you and monitor for issues. I know how miserable you've been and I do wish you luck whatever you decide!

mamaw Community Regular
mamaw
Posted

Sorry to hear you haven't got relief.. I hope you find answers soon so you can get back to living & enjoying life..Prayers to you... Please keep us posted...

Skylark Collaborator
Skylark
Posted

I'm sorry to hear you're not feeling better. Yes, do keep us posted. If it's inflammatory bowel disease I hope you find something that works for it!

zus888 Contributor
zus888
Posted
  • Author

Well, I was diagnosed with crohns in 1994. They treated me with prednisone and I have been getting healthier since. In fact, there are no signs of crohns in my colon any more. Though the blunted villi could be a sign of that.

I was diagnosed with celiac at a time in my life when I would consider myself probably the healthiest I've ever been. My biggest complaint would be fatigue, but it's not so bad that I cannot get through the day. I just fall asleep if I slow down at all. The gluten-free diet has done nothing to help that. I feel no more energized and no more healthy. Perhaps I'll notice more of a difference if/when I decide to eat gluten again. Perhaps I'll suffer consequences that will make me WANT to stay on the diet because the repercussions just aren't worth it. And, then, perhaps there will be no difference whatsoever. Throughout this whole process, all I've been dealing with is the limitations with no benefits to speak of. I know many have the wherewithal to be silent celiacs and be accepting of their new lifestyle. I am definitely not one of those people. My mental health has taken a nosedive. I had hoped that I would persevere, but I just cannot handle a life of being constantly reminded of my crappy health. I have a number of other health issues, one which will likely shorten my life. I prefer to live my life in denial that my liver will eventually fail. But this diet is a constant reminder that my health is precarious at best, and I hate living my life in constant fear of my future. I'm reminded every day that my health will limit me and that it HAS ALREADY STARTED. It's not how I want to live. Not the healthy years, at least. I want to live a vibrant life while I have a vibrant life to live. I want to live in such a way that I enjoy each day for what it holds for me. And it's just not happening on this diet. Something has to give.

saintmaybe Collaborator
saintmaybe
Posted

Well, I was diagnosed with crohns in 1994. They treated me with prednisone and I have been getting healthier since. In fact, there are no signs of crohns in my colon any more. Though the blunted villi could be a sign of that.

I was diagnosed with celiac at a time in my life when I would consider myself probably the healthiest I've ever been. My biggest complaint would be fatigue, but it's not so bad that I cannot get through the day. I just fall asleep if I slow down at all. The gluten-free diet has done nothing to help that. I feel no more energized and no more healthy. Perhaps I'll notice more of a difference if/when I decide to eat gluten again. Perhaps I'll suffer consequences that will make me WANT to stay on the diet because the repercussions just aren't worth it. And, then, perhaps there will be no difference whatsoever. Throughout this whole process, all I've been dealing with is the limitations with no benefits to speak of. I know many have the wherewithal to be silent celiacs and be accepting of their new lifestyle. I am definitely not one of those people. My mental health has taken a nosedive. I had hoped that I would persevere, but I just cannot handle a life of being constantly reminded of my crappy health. I have a number of other health issues, one which will likely shorten my life. I prefer to live my life in denial that my liver will eventually fail. But this diet is a constant reminder that my health is precarious at best, and I hate living my life in constant fear of my future. I'm reminded every day that my health will limit me and that it HAS ALREADY STARTED. It's not how I want to live. Not the healthy years, at least. I want to live a vibrant life while I have a vibrant life to live. I want to live in such a way that I enjoy each day for what it holds for me. And it's just not happening on this diet. Something has to give.

I think many of us are so happy to be feeling drastically better, losing out on gluten has not felt limiting, but freeing. That said, I saw enormous immediate benefits from going on the diet and have immediate dire consequences if I go off. It would be much more difficult if I was a silent celiac, or had refractory sprue. My health has finally started improving to the point where I can function again, so I would say that I don't feel like I'm not living vibrantly at all. I feel like I'm just waking up from a coma.

Nevertheless, you know your own body, and what's working and what isn't. I wish you the best and hope you find something that makes you feel better.

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