How Do I Know If I'm Ok?

[grey]

I'm at almost 2 years since dx; a lot of things have gotten better, but I think I might still have some issues.

I'm not sure. I had symptoms of celiac for at least 8 years pre-dx, and possibly another four years before that. I don't know what's it like to be an adult without health problems, even if my general health isn't dreadful now and wasn't always dreadful then.

What, for example, is a normal energy level? Normal GI function? How do I know if I have more bowel movement than normal or if they're normal? If something is celiac-related or just the fact that the last time I was truly healthy I was in my early 20s, and now I'm in my mid-30s, and maybe I just have less energy because, well, I'm not in my early 20s any more.

Is my insomnia celiac-related? My migraines?

Is it weird that I'm tempted to eat a fresh-baked loaf of bread, not because I actually want it, but because I would kind of just like to watch myself as a science experiment to see what would happen?

My blood tests came back good, that I was compliant with the diet and I'm extremely careful - I live alone so it makes it relatively easy to be pretty careful. But I find it hard to believe that eating out, etc., that I've never been glutened. But I'm not sure ... I don't know how it'd feel. And, while I have bouts of D or fatigue, I can't tell if they're just regular or brought on by something. I mean, shouldn't I be having a really dramatic reaction?

I'm not sure what I'm asking, I guess I'm just having some trouble coping. I usually cope pretty well, but I think I was hoping on some level to have more energy and health than I do once I got better. Like I've been holding my breath, waiting, and now I just feel like, well, is this all there is? Is this as good as it gets? I've had a little distance from when I was really sick, in the hospital and all, and it just doesn't seem that different. I KNOW it is, but it doesn't *feel* that way emotionally, and sometimes I wonder why I'm doing this.

I guess I'm just looking for someone to listen; so thanks...

[mushroom]

I'm at almost 2 years since dx; a lot of things have gotten better, but I think I might still have some issues.

I'm not sure. I had symptoms of celiac for at least 8 years pre-dx, and possibly another four years before that. I don't know what's it like to be an adult without health problems, even if my general health isn't dreadful now and wasn't always dreadful then.

What, for example, is a normal energy level? Normal GI function? How do I know if I have more bowel movement than normal or if they're normal? If something is celiac-related or just the fact that the last time I was truly healthy I was in my early 20s, and now I'm in my mid-30s, and maybe I just have less energy because, well, I'm not in my early 20s any more.

Is my insomnia celiac-related? My migraines?

Is it weird that I'm tempted to eat a fresh-baked loaf of bread, not because I actually want it, but because I would kind of just like to watch myself as a science experiment to see what would happen?

My blood tests came back good, that I was compliant with the diet and I'm extremely careful - I live alone so it makes it relatively easy to be pretty careful. But I find it hard to believe that eating out, etc., that I've never been glutened. But I'm not sure ... I don't know how it'd feel. And, while I have bouts of D or fatigue, I can't tell if they're just regular or brought on by something. I mean, shouldn't I be having a really dramatic reaction?

I'm not sure what I'm asking, I guess I'm just having some trouble coping. I usually cope pretty well, but I think I was hoping on some level to have more energy and health than I do once I got better. Like I've been holding my breath, waiting, and now I just feel like, well, is this all there is? Is this as good as it gets? I've had a little distance from when I was really sick, in the hospital and all, and it just doesn't seem that different. I KNOW it is, but it doesn't *feel* that way emotionally, and sometimes I wonder why I'm doing this.

I guess I'm just looking for someone to listen; so thanks...

I'm listening and I hear you. I think this is probably a pretty common feeling. How do we know when we are as good as we are ever going to get? If you have been feeling bad for so long, is it possible to recognize wellness, to know what it feels like? And with celiac we have so many symptoms and so many deficiencies and so many related problems to work on that we don't know when we have reached the summit. Should I continue to climb higher? Is that elusive pinnacle just over the next ridge? Will one more supplement make a difference? Should I try these herbal remedies? How do we know when to quit??

I'm afraid I don't have the answer, I am in the same boat myself. I know I am better than I was last year because everybody tells me that I look better, but could I be better next year if I did something further?? I don't know. Right now I just take it day to day because I have other stuff I am dealing with and this takes energy too. And I am in my (very) late sixties, so I don't know what to expect; I know I won't be like I was in my forties but I have never been well in my sixties so don't know what to expect.

It is all a conundrum.

[mattathayde]

i second mushroom.

i got Dx lat april, quazi gluten-free until july/aug, thought i was gluten-free (accidently was using a couple things with gluten in them) until about january-march and AFAIK gluten free except for a glutening from eating out.

i would get gi issues that i couldnt track, and other little stuff. the last few days ive felt foggy like as if i was glutened but i havent had the GI issues that usually alert me first (but i have been kind of stressed).

i have just kind of accepted that i will never have as normal of a GI track as others and never have the excessive energy that some people have, but at the same time the energy levels vary a whole lot between people.

if you are not taking a multi vitamin or one with a lot of B in it try that, once i started taking my multi vitamin i have been doing better over all, less GI issues ( i think the iron is helping there) better sleep and dont have to sleep as long (the Bs doing that) and generally feeling better.

normal is relative, if you feel your GI issues need to be addressed then have them addressed, you might not get a good result from modern medicine and may need to look towards an alternative medicine (thats how i even found out about my celiac disease)

-matt

[ang1e0251]

I felt a lot like you the first year in but I kept pushing it the more I read on this site. The energy was good but took a whole new turn when I followed the advice here about sublingual B12. It made a huge difference in my energy level and sense of well-being. I also read about magnesium levels and realized I was way low. That helped my digestion, better bm's (sorry). But my sleep has improved and my always stiff shoulders and neck.

It's true you wonder if this new normal is normal. Is this it or should I be doing something else? I've been feeling terrific since I started dieting on a low carb, high dietary fat program. I mean the best I have in years. Last week, my mom brought her lunch in to visit with me in my shop. She was really proud that she had brought me a Diet Coke. She knew I had stopped eating sugar. I told her I don't usually drink those as the sweeteners don't sit well with me. She looked so crushed I said well this once shouldn't be a problem. I drank about an inch out of the cup. I was so sick and in pain the next day...that was a reminder that I used to live like that every day.

So, though I don't wish you a relapse, mine should be a reminder of how far you've come. And I would try to supplement to help with your surviving symptoms. Oh, and your migraines, my assistant's son has had a serious problem for two years with them. He lost most of this year in school because of it. The book on magnesium had a section on them. We increased his magnesium like the book said and put him back on Migraleaf, a natural supplement for migraines that helped my daughter. Also he is eliminating dairy as this seems to be a trigger for him. He's going into his third week of controlling his headaches. Another thing that is helping him is an herbal nasal spray with capscacian and feverfew. I've been impressed with his progress.

There are things you can try. I wish you luck as you listen to what your body needs.

[caramckelvey]

You may be intollerant to other things besides being Celiac. When I moved to Rome almost 2 years ago, suddenly all my previous Celiac symptoms came back but I was really careful about what I ate. Then I got blood tests done and found out I had a significant number of intollerances, including eggs, which I was eating very often. It already sucks to have Celiac and then sucks even more to have additional intollerances or complications but your health is worth the sacrifice and careful attention!! I also have periods where I suffer from Insomnia, I think it's a common Celiac complaint (correct me if I'm wrong) as well as migranes. Now, after all this time of thinking I was very careful, I've been suffering from terrible insomnia (sleeping pills not helping), allergies (allergy medicine not absorbed) and horrible pain in my abdomen, all Celiac related and I just can't figure out where it happened but it did and now I feel like I have to start all over again. So, it's always gonna be a fight I figure but I advise exercise at least 3 times a week, get a good gastroenterologist, take vitamins and start eliminating certain foods (dairy or corn are common)from diet to see if you feel better. Good luck and remember we're all in this together!

[nutralady2001]

I understand.............. undiagnosed for nearly 50 years so have permanent damage.Sometimes I wonder if this is as good as it's going to get............ it cost me my marriage ( ex-husband didn't believe I was sick, was making it up to get out of looking after the family) and early retirement from work .

BUT being gluten-free is sooo much better.I was c/c'd last night by accident when out first time in months I've been glutened and am now sitting here in the aftermath of the " pit stops" with horrible cramps so am remembering just how bad it used to be

I try to be kind to myself and remind myself of the things I CAN do not the things I can't