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2 Years Later And Still Dealing With Major Symptoms...


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30 replies to this topic

#1 luvrdeo

 
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Posted 23 April 2014 - 10:05 AM

I've been gluten-free for a good 2 years now since being diagnosed with celiac, and I still have major major symptoms - everything runs through me like water.  My doc has tried numerous pills on me to help (mostly for the colitis) and nothing has worked.  I went strict paleo about 6 months ago hoping that would help...but no.  I feel like this has all gotten worse since my diagnosis, rather than making progress.  Is this the case with anyone else?  <_< It's very frustrating!


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lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

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#2 pr40

 
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Posted 23 April 2014 - 03:22 PM

have you tried probiotics? combination of  culturelle, bifidus, acidophilus, and align infantis helped me a lot.


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#3 luvrdeo

 
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Posted 23 April 2014 - 04:49 PM

have you tried probiotics? combination of  culturelle, bifidus, acidophilus, and align infantis helped me a lot.

yep, tried them all with no luck :(  hadn't tried a combo of them all though, maybe I'll give that a shot!


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lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#4 nvsmom

 
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Posted 23 April 2014 - 04:56 PM

I'm sorry to hear you are still not well.  :(  

 

I had the opposite problem as you, and it really only improved until my hypothyroidism was being treated properly - about 10 months gluten-free I think.  Could it be other issues other than the celiac disease (I'm assuming you are strictly gluten-free)?  some other related problem?

 

I hope you find answers.  :(


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#5 luvrdeo

 
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Posted 24 April 2014 - 05:34 AM

I'm sorry to hear you are still not well.   :(

 

I had the opposite problem as you, and it really only improved until my hypothyroidism was being treated properly - about 10 months gluten-free I think.  Could it be other issues other than the celiac disease (I'm assuming you are strictly gluten-free)?  some other related problem?

 

I hope you find answers.   :(

I eat strict paleo, so yes - I am beyond strict when it comes to being gluten-free.  The slightest CC can put me in a tailspin for a good 2 weeks, I think I'm overly sensitive now.  I am a total freak about it to be honest (aren't we all)!  Everything has just gotten so much worse since going gluten-free, which seems so backwards.  My rheumy has tested me for all kinds of other things (had several positive ANA tests) but nothing has come up.  I'm going back in a few weeks to see my gastro doc because at this point, I'm worried that I'm destroying my insides, and that longterm, this could be bad.  Who knows - I was so happy when I got diagnosed with celiac, finally had some answers...and yet I still keep going the wrong direction.  No fun!


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lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#6 nvsmom

 
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Posted 24 April 2014 - 07:01 AM

Definitely not fair. :(
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#7 HavaneseMom

 
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Posted 24 April 2014 - 09:16 AM

Hi luvrdeo,

Sorry to hear you are having major issues after this long. It sounds like you are doing everything right to treat your celiac. It must be very frustrating and exhausting to be sick all the time like that, and for so long. Hopefully your gastro doctor can figure out what's going on and get you the proper treatment.

I saw in your signature that you noted lymphocytic colitis. My mom had colitis that resolved after a while and thankfully hasn't come back in over 20 years, but it was a horrible thing for her to go through. Did your colitis ever resolve? I wasn't familiar with your type of colitis, and when I looked it up it said it's main symptom is persistent watery diarrhea, which you mentioned is a problem for you. Since you are so strict with your gluten free diet, I wonder if the colitis could be causing you so much trouble?

I hope you find your answer and will feel better soon.


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Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#8 luvrdeo

 
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Posted 24 April 2014 - 10:06 AM

Hi luvrdeo,

Sorry to hear you are having major issues after this long. It sounds like you are doing everything right to treat your celiac. It must be very frustrating and exhausting to be sick all the time like that, and for so long. Hopefully your gastro doctor can figure out what's going on and get you the proper treatment.

I saw in your signature that you noted lymphocytic colitis. My mom had colitis that resolved after a while and thankfully hasn't come back in over 20 years, but it was a horrible thing for her to go through. Did your colitis ever resolve? I wasn't familiar with your type of colitis, and when I looked it up it said it's main symptom is persistent watery diarrhea, which you mentioned is a problem for you. Since you are so strict with your gluten free diet, I wonder if the colitis could be causing you so much trouble?

I hope you find your answer and will feel better soon.

Thank you first off for the kind words!!  It's definitely the colitis I think.  My doc put me on some high-power pills for ulcerative colitis to try and get some healing done, but as soon as I go off of them I go right back to where I was.  I guess you can't stay on the pills long term - it's more for when it flares up.  They told me my last resort is some other med that I have to sign a release on, because it can be highly dangerous.  That's not really something I want to be involved with!  I was really hoping I could find a natural way to get this under control - diet, essential oils, things like that...rather than have to try all of these different pills.  What did your mom do to put hers into remission?


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lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#9 pr40

 
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Posted 24 April 2014 - 11:49 AM

on probiotics: align may be the one you want to try first. read about infantis and you will see the logic. then, slowly you can introduce others.

i assume that your dr put you on a steroid. steroids have serious side effects and some of your symptoms may be attributed to them.


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#10 luvrdeo

 
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Posted 25 April 2014 - 10:28 AM

on probiotics: align may be the one you want to try first. read about infantis and you will see the logic. then, slowly you can introduce others.

i assume that your dr put you on a steroid. steroids have serious side effects and some of your symptoms may be attributed to them.

I'll give align a second shot - and go from there.  As for the meds...I've been off them for a good 2 months, could something still be lingering in my system?  The problems I have now, I had before they tried this latest drug...so there's no telling.  Thank you for the great suggestion!


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lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12

#11 HavaneseMom

 
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Posted 25 April 2014 - 10:53 AM

Thank you first off for the kind words!!  It's definitely the colitis I think.  My doc put me on some high-power pills for ulcerative colitis to try and get some healing done, but as soon as I go off of them I go right back to where I was.  I guess you can't stay on the pills long term - it's more for when it flares up.  They told me my last resort is some other med that I have to sign a release on, because it can be highly dangerous.  That's not really something I want to be involved with!  I was really hoping I could find a natural way to get this under control - diet, essential oils, things like that...rather than have to try all of these different pills.  What did your mom do to put hers into remission?


Hello, Since it was so long ago that my mom had the major colitis problem, I'm not really sure what her treatment was. This was in the early 90's before we had the Internet to research everything ourselves, so I am guessing she probably took whatever pills were prescribed and at that time. I do know she was on anti-D pills for quite a while. I was thinking about it a little more, and she does have random bouts of unexplained D to this day, so maybe she does still have small flares, although very mild and short lived compared to what you are experiencing. I really hope you can find a way to get your colitis under control without having to take the dangerous pills you mentioned. I'm sure it's hard to decide what to do about that when you want to get better, but aren't sure about taking those pills.
Hope you feel better soon :-)
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#12 MGR

 
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Posted 27 April 2014 - 11:29 AM

Hi there, I have UC with watery D and blood-and after 20 years of visiting my GI for regular check ups I have found out accidentally that that gluten is one of my major triggers for it. I am supposed to take a medicine called Pentasa all the time to keep it under control, but I refuse to do so because one of its main side effects is that it damages the kidney. I have always kept it at bay with my diet- and have doing a FODMP type of diet- now I still do it, but don't have grains to avoid gluten- and although I always have a tendency for D, it is much better. However, I am extremely sensitive and the slightest particle sets me off. My main challenge is to avoid it greeting so bad that the D comes with blood.

I really feel for you! Big hugs xxxxx
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#13 come dance with me

 
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Posted 28 April 2014 - 04:25 AM

Might not be this, but my step mum is coeliac but also suffers malabsorption of fructans, which are present in onion, shallots, leek, garlic, chives, basically anything from the onion family, and also in dried fruit and dessicated coconut.  She can't eat any of those things, on top of not being able to eat gluten.  Might be worth looking outside of grains.


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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#14 dilettantesteph

 
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Posted 28 April 2014 - 08:52 AM

I had that problem and noticed that it was worsened by high fat and protein.  Digestive enzymes cleared it right up.  The doctor thinks it was pancreatic insufficiency.  That is common with celiacs.

 

http://www.celiac.co... +insufficiency


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#15 luvrdeo

 
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Posted 29 April 2014 - 08:22 AM

I had that problem and noticed that it was worsened by high fat and protein.  Digestive enzymes cleared it right up.  The doctor thinks it was pancreatic insufficiency.  That is common with celiacs.

 

http://www.celiac.co... +insufficiency

Living on a paleo diet, high fat and protein are the bulk of my diet!  I'll look into this - very interesting for sure.  I hadn't heard of pancreatic insuffiency before!


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lymphocytic colitis 8/1/12
diagnosed w/celiacs 8/14/12
gluten-free 8/14/12
dairy free, grain free, corn free 10/9/12




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