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Still Sick

hez

By hez
in Coping with Celiac Disease

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hez Enthusiast
hez
Posted

Hi I am fairly new to the board and was looking for support. I was diagnosed in April with celiac disease through blood work and endoscopy. I have been gluten-free since April and still not feeling 100% better. The gi doc thought this was not unusual since I have extensive damage. The doc looked at 10 inches of my small intestine and not a vili in sight! Just wondering if anyone else had similar damage? How long did it take you to feel better?

Hez in CO

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higgins Newbie
higgins
Posted

hez: Mine was a rather late diagnosis; I had lost over 90 lbs. and almost had to be hospitalized. Since diagnosis, any exposure to gluten will make me sick for about 3 weeks.

It may take time to get rid of the gluten in your diet - the stuff shows up in the craziest places. I was diagnosed 2 years ago, and still have problems with exposure, especially the airborne stuff.

In my case, other things may also cause similar (and therefore misleading) symptoms. I will get celiac disease-like symptoms (weight loss, diarrhea and cramps, etc.) if I'm exposed to lactose, or if I am dehydrated - easy to happen. Keep track of what you eat; you might be getting gluten from some obscure, easy-to-overlook source.

Also, it was reported on this website recently that celiac disease may be accompanied by any number of other intolerances (lactose, citrus, etc.) so it may be advisable to look into those issues as well. I know that whenever I get a rumbling in the stomach, or cramps, my first impulse is to drive myself crazy trying to recall if I could have taken any gluten; however, the symptoms may actually be from a lactose reaction, or other non-celiac disease intolerance.

Richard

lovegrov Collaborator
lovegrov
Posted

My villi were flat. Iwas hospitalized and missed 10 weeks of work. Four months after starting the diet I was working but doing little more. It was about 10 months before I felt "normal" again.

richard

KaitiUSA Enthusiast
KaitiUSA
Posted

Took me about 8 months to feel normal but I felt quite a bit better after the 3rd month. If you feel some better then that should be encouraging. If it has gone years and years with accumulating damage then for some people it can take a few years to really get back to normal.

hez Enthusiast
hez
Posted
  • Author

I am just happy to know that I am not the only one! I have good days and bad. This just happens to be a bad day. Feeling sorry for myself and depressed. Thank you.

PicturePerfect Explorer
PicturePerfect
Posted
I am just happy to know that I am not the only one! 

<{POST_SNAPBACK}>

Although I was diagnosed a month after you, I barely had any damage - in fact, the doctor could not tell if I had Celiac or not, so they had to take a sample. Anyway, I am feeling a little better, but not 100% as well.

Hope you feel better soon!

Lisa

SueC Explorer
SueC
Posted

Hi hez,

I was also diagnosed in April and am not nearly ready to say I am 100%!! I am definately alot better than I was and I am encouraged by that, but still have alot of things that have not gone away completely. I guess it just takes time for our bodies to heal....Hopefully they will soon :) Hang in there!

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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