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Medical Mystery?


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#1 New Community Member

 
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Posted 12 September 2012 - 02:29 PM

Hi there!

Yesterday I found out the strangest 'news' I had ever heard, concerning the disease plaguing my body - celiac. Long story short...

-diagnosed a year ago with celiac, went gluten free
-still same GI symptoms 8 months later
-endoscopy showed gastritis (medicine didn't help)
-same GI symptoms
-August pill cam results came out...

The pill cam that took 60,000 pictures of my GI system apparently showed all results to be "negative." Apparently, there was no evidence for any type of digestive disease- celiac (due to being on a strict gluten-free diet), ulcers, IBD, and even inflammation!

No inflammation? Does that mean that the intestines have completely healed on the gluten free diet? The symptoms say otherwise - it just doesn't match up.

I'm dumbfounded and don't know what's going on. It just doesn't seem to make sense to me.

Thank you for hearing me out. Any insight or suggestions is greatly appreciated.

Have a nice day. I hope you are well on your way to healing your gut :) , and if you are, I hope to catch up with you soon!
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#2 IrishHeart

 
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Posted 12 September 2012 - 05:24 PM

Not a mystery at all. You are healing!! Hooray!!

My doc says celiacs can still have inflammation and "issues" well beyond a year. More like 2 or 3 or 5 years. Healing takes time. And the issues go beyond just the gut.

Try to be patient. Looks like you are on the right path. You got a good report yesterday.

I just had my 22- month checkup today and even though I am "not there" yet, my GI doc told me...."look how far you've come! you were dying when we met. Now, you are healing. This is a slow and steady process. "

Am I perfect? nope. Am I better? yes!

This is what I hang my hope on. Full healing--in time.

Edited by IrishHeart, 12 September 2012 - 05:26 PM.

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 New Community Member

 
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Posted 12 September 2012 - 07:13 PM

Not a mystery at all. You are healing!! Hooray!!

My doc says celiacs can still have inflammation and "issues" well beyond a year. More like 2 or 3 or 5 years. Healing takes time. And the issues go beyond just the gut.

Try to be patient. Looks like you are on the right path. You got a good report yesterday.

I just had my 22- month checkup today and even though I am "not there" yet, my GI doc told me...."look how far you've come! you were dying when we met. Now, you are healing. This is a slow and steady process. "

Am I perfect? nope. Am I better? yes!

This is what I hang my hope on. Full healing--in time.



Thanks for that reminder that it does take time! I forget that. Everyone heals at different speeds. Congrats to you! It's a long, hard process, but it should be worth it in the end.
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#4 shadowicewolf

 
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Posted 12 September 2012 - 07:31 PM

when i was first dx'd i couldn't keep anything down or stop the ever present 'D'. After i went gluten free, both stopped. I had no "clear" evidence in my small intestent but that was done 4 weeks after i went gluten free (to the day i believe).

I rarely ever have stomach issues anymore, this includes the 'D" i used to have at least once a week.

Now if i can get over this stomach bug i'll be back to 100% again.

Congrats :) that is good news :)
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#5 mommida

 
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Posted 13 September 2012 - 12:16 PM

You are showing healing! :D
You might consider taking a multivitamin. Stay on track will your dietary needs so you can really start feeling better.
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#6 nvsmom

 
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Posted 13 September 2012 - 08:54 PM

I'm glad your tests came back so good. That's great. :)

Has your doctor looked into other autoimmune diseases like pernicious anemia or infection of Helicobacter pylori? There could be something else, although I certainly hope it's still just your body healing up.

Best wishes. I hope you feel well soon.
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#7 New Community Member

 
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Posted 14 September 2012 - 11:25 AM

Thank you! :) I guess I am healing. Perhaps I do need some additional supplements. I haven't been consistent in taking my vitamins. Maybe some probiotics could help, too. Who knows. This celiac just seems like a hard puzzle to figure out!
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#8 IrishHeart

 
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Posted 14 September 2012 - 11:36 AM

Thank you! :) I guess I am healing. Perhaps I do need some additional supplements. I haven't been consistent in taking my vitamins. Maybe some probiotics could help, too. Who knows. This celiac just seems like a hard puzzle to figure out!



I am the "probiotics Pusher" on here :lol: ---so yes, I say take them! A good gluten-free, DF one.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 New Community Member

 
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Posted 14 September 2012 - 02:00 PM

I am the "probiotics Pusher" on here :lol: ---so yes, I say take them! A good gluten-free, DF one.



Great!! Which one would you recommend?? Silly question probably, but what is DF?
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#10 mommida

 
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Posted 14 September 2012 - 02:11 PM

dairy free also CF is casein free (casein is the protein chain of dairy)

I like to use chewy candy like probiotics. I can't say I have a favorite brand to suggest though.
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#11 IrishHeart

 
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Posted 14 September 2012 - 02:34 PM

Great!! Which one would you recommend?? Silly question probably, but what is DF?



I use Custom Probiotics and switch up and use DF Culturelle sometimes. Both good (IMHO)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 cavernio

 
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Posted 16 September 2012 - 10:02 AM

Since you were dx'd as a celiac I take it you had a positive biopsy at the start? What did you small intestine look like then?
My understanding is that celiac disease doesn't have to have a visual in order for it to not exist. That's why the biopsies exist and why we all don't get pill cams instead. (well I also think pill cams are expensive)
It really does sound like your intestines are getting better though.

Unfortunately lots of people have GI symptoms and only end up with a dx of IBS. I got a dx of IBS when I got the celiac diagnosis, but it really seems to me like the two, in myself at least, are very closely related.

Do you still have symptoms beyond just gut ones? Fatigue, general pain, etc.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#13 New Community Member

 
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Posted 19 September 2012 - 07:42 PM

Since you were dx'd as a celiac I take it you had a positive biopsy at the start? What did you small intestine look like then?
My understanding is that celiac disease doesn't have to have a visual in order for it to not exist. That's why the biopsies exist and why we all don't get pill cams instead. (well I also think pill cams are expensive)
It really does sound like your intestines are getting better though.

Unfortunately lots of people have GI symptoms and only end up with a dx of IBS. I got a dx of IBS when I got the celiac diagnosis, but it really seems to me like the two, in myself at least, are very closely related.

Do you still have symptoms beyond just gut ones? Fatigue, general pain, etc.


Yes, I did have a positive biopsy - taken last September. The villi were blunted, but apparently they are not now, I guess. I have mainly GI symptoms, fatigue, and probably some anxiety (related to the annoying symptoms). It's so strange how so many people are affected in different ways.
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#14 New Community Member

 
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Posted 19 September 2012 - 07:43 PM

I use Custom Probiotics and switch up and use DF Culturelle sometimes. Both good (IMHO)


Thank you for the suggestion! I ended up getting the DF/gluten-free Culturelle probiotic. Hope to see results!
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