Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Still Feeling Sick


  • Please log in to reply

28 replies to this topic

#1 Maria B.

 
Maria B.

    New Community Member

  • Advanced Members
  • Pip
  • 13 posts
 

Posted 04 June 2014 - 05:27 PM

I was diagnosed in January of this year with Celiac, it's really bad, my lining is completely flat.  I recently had routine blood work to see where are my blood levels now compared to my first diagnose.  Needless to say, it's the same (nothings changed).  I have changed my diet to a Gluten Free diet (or so I thought), however I've been feeling really bloated and a lot of inflammation in my body, even though I eat gluten free ( can someone tell me why?)  Also, I just read that someone with Celiac should NOT eat soy!  could this be the reason? some of the things that I have bought that are gluten-free contains soy.

 

Please help!!! 


  • 0

Celiac.com Sponsor:

#2 kareng

 
kareng

    Be Royal

  • Moderators
  • PipPipPipPipPipPip
  • 14,122 posts
 

Posted 04 June 2014 - 06:00 PM

If your blood tests were super high, they can be more than they can measure. For instance, one of mine was >100. It could be 102 or 1002. So mine didn't seem like it went down very far after a few months because , who knows how high it was. Also, it can take a long time to get to normal.

Soy bothers some people with Celiac or without. Soy if fine for anyone it doesn't bother. I have no issues with it. Even if you can't tolerate soy, it wouldn't cause Celiac damage. Only gluten can do that.

Check out the newbie thread and see if anything there is new to you.

http://www.celiac.co...ewbie-info-101/
  • 0

LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
Celiac.com - Celiac Disease Board Moderator
 

 


#3 NatureChick

 
NatureChick

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 183 posts
 

Posted 04 June 2014 - 06:11 PM

There are a few other things that can cause damage to villii though this is not my bailiwick.

Here are some old threads of people asking the same question that might help.

http://www.celiac.co...amage-to-villi/

http://www.celiac.co...-damaged-villi/


  • 0

#4 Maria B.

 
Maria B.

    New Community Member

  • Advanced Members
  • Pip
  • 13 posts
 

Posted 05 June 2014 - 03:30 AM

If your blood tests were super high, they can be more than they can measure. For instance, one of mine was >100. It could be 102 or 1002. So mine didn't seem like it went down very far after a few months because , who knows how high it was. Also, it can take a long time to get to normal.

Soy bothers some people with Celiac or without. Soy if fine for anyone it doesn't bother. I have no issues with it. Even if you can't tolerate soy, it wouldn't cause Celiac damage. Only gluten can do that.

Check out the newbie thread and see if anything there is new to you.

http://www.celiac.co...ewbie-info-101/

Thanks, I'll check out the link.  My normal weight it 145-148, since all this inflammation I am weighing 153.  It might not be much of a difference for some, but now I can't get into my cloths and I wake up with so much pain, it's so upsetting.  (not the weight so much, but inflammation).  I get pain on jaw, neck, shoulder, wrist and fingers.  


  • 0

#5 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,550 posts
 

Posted 05 June 2014 - 04:23 AM

I would not automatically assume that your villi are still flat because of some "other medical condition" just yet.

 

You are still healing. Any number of things can cause bloating. Do you eat dairy foods for example? how much processed G F foods are you eating?

maybe it's too much for you right now. 

 

Try just one week with no grains or dairy and see what happens?.

 

As Karen pointed out, not every celiac has a problem with soy or dairy or corn for that matter. 

 

Have you had your sed rate, C-reactive protein levels checked? Those show levels of inflammation in the body. These could rule out arthritis and joint issues.


  • 0

"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


#6 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 05 June 2014 - 04:23 AM

You may be eating gluten accidentally.  An experienced celiac dietician could help you with that.  It's a good idea to check your numbers as Kareng said.  If those two things are ruled out then you can consider that a small fraction of celiacs react to lower levels of gluten and were found to do better on a special diet as in this study: http://www.biomedcen...1471-230X/13/40

Another possibility is that around 10% of celiacs have their immune response initiated by oats.  I don't think that would show up in an antiglianin antibody blood test though. 

 

I hope you feel better soon.


  • 0

#7 littleliffy

 
littleliffy

    New Community Member

  • Advanced Members
  • Pip
  • 8 posts
 

Posted 08 June 2014 - 05:53 AM

I got diagnosed at the end of April and I'm still feeling sick as well. Mostly nauseous and very exhausted. I can not do normal things and I feel like I'm going to collapse. I cut my work day in half and even that is challenging. How long does it take to get better???
  • 0

#8 cyclinglady

 
cyclinglady

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 1,701 posts
 

Posted 08 June 2014 - 07:22 AM

The problem is that everyone is different, so you can not put a time on healing. (I think you know that already.) My main symptom was anemia, but between my blood test and biopsy, I ate a loaf of bread a day (plus other goodies) as a final farewell gesture. Then I got the tummy symptoms. Took me about six weeks to feel an improvement. Took me over six months to a year to really feel good (heal fractures, eliminate anemia, etc.). And I had the benefit already knowing the gluten-free drill since my husband has been gluten-free for 13 years. So, the learning curve for this new diet was very short for me!

I would stress whole foods. At the beginning, I was baking gluten-free goodies and buying processed gluten-free stuff for both me and my husband, except he was healed and could handle that junk and I could not. At the end of a year, I was feeling pretty good (enough to get back on my bike, run and swim).

So, be patient. Take care of yourself. I gave up most of my volunteer work, etc. for the year. Hubby has taken all the work load off me. I am only now getting into it again (we are self-employed).

Hang in there! You are not alone!

Oh, be sure to read the newbie section located under coping!
  • 0
Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




Celiac.com - Celiac Disease Board Moderator

#9 beth01

 
beth01

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 397 posts
 

Posted 08 June 2014 - 09:01 AM

I know no matter how many times people tell me to stick to whole foods right now while I heal, I have a hard time doing it every day.  After years of misdiagnosis, most of us are so sick it takes a long time to heal.  I know if I have too many different foods right now, I get sick.  If I have too much sugar, I get sick.  Can't have too many raw veggies, if any at all some days.

 

It seems like I am blowing smoke right now since I can't even follow my own advise. But it is so hard after all we have to give up so many foods and  to not even be able to have the gluten-free version because it is processed and our guts just can't handle that.  I was also wondering if you are eating a different variety of foods that are tested down to 20ppm, are you actually getting a significant amount from eating too many in one day? 


  • 0
Diagnosed April 7th 2014

#10 notme!

 
notme!

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 2,061 posts
 

Posted 08 June 2014 - 10:26 AM

I know no matter how many times people tell me to stick to whole foods right now while I heal, I have a hard time doing it every day.  After years of misdiagnosis, most of us are so sick it takes a long time to heal.  I know if I have too many different foods right now, I get sick.  If I have too much sugar, I get sick.  Can't have too many raw veggies, if any at all some days.

try keeping a food journal and make notes on how certain foods are being digested/agreeing with your gut and which are giving you trouble.  it's easier to find the 'culprit' and then just skip it for awhile.  i couldn't eat (ie) peppers for a long while but have been able to add them back in.  i am one of the ones who have trouble with soy (nothing to do with being celiac, but the celiac 'disguised' my intolerance) so, i try to avoid it.  (now, my gelato has soy in it, so i trade off now and again lolz) if i make a whole meal, and i have indigestion, i'll try each item separately and figure out what is bugging me.  as you heal, you will more than likely get to add foods back in.  give your gut a minute to get healing :)  if you have significant villi damage, your body isn't producing the enzyme that digests dairy products.  it is produced on the tips of your villi, so, if they're damaged, you won't be able to eat/drink dairy for awhile.  i think i skipped dairy for 6 months.  i have it back, now, no problem.

 

also, using probiotics and digestive enzymes has helped a lot for me.  the enzymes are especially helpful (STILL) to help digest raw stuff like salads and veggies.  i played around with different combinations and here's what works for me:  culturelle at night, enzymes before meals, and i have a probiotic/enzyme combination i take with lunch or big snack in the afternoon.  


  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#11 Maria B.

 
Maria B.

    New Community Member

  • Advanced Members
  • Pip
  • 13 posts
 

Posted 09 June 2014 - 10:57 AM

You may be eating gluten accidentally.  An experienced celiac dietician could help you with that.  It's a good idea to check your numbers as Kareng said.  If those two things are ruled out then you can consider that a small fraction of celiacs react to lower levels of gluten and were found to do better on a special diet as in this study: http://www.biomedcen...1471-230X/13/40

Another possibility is that around 10% of celiacs have their immune response initiated by oats.  I don't think that would show up in an antiglianin antibody blood test though. 

 

I hope you feel better soon.

This is all new to me and no matter how much I try to not eating anything thats not gluten-free, I still feel pain and discomfort.  I also read that a Celiac's, should not eat soy! I just recently stopped eating that.  I do not eat processed gluten-free food, I have everything grilled (meats and veggies), I eat all plant based food, so I'm hoping that my problem was with soy, I have been soy free for 1 week now.  I will be meeting with a certified Celiac Nutritionist in 2 weeks, I think this will help me a lot. 


  • 0

#12 Maria B.

 
Maria B.

    New Community Member

  • Advanced Members
  • Pip
  • 13 posts
 

Posted 09 June 2014 - 11:00 AM

I got diagnosed at the end of April and I'm still feeling sick as well. Mostly nauseous and very exhausted. I can not do normal things and I feel like I'm going to collapse. I cut my work day in half and even that is challenging. How long does it take to get better???

are you anemic? I was very Anemic and had to have 3 sessions of IV infusions.  It help me to get back to my normal life, however 1 month later I was diagnosed with Celiac.   


  • 0

#13 Maria B.

 
Maria B.

    New Community Member

  • Advanced Members
  • Pip
  • 13 posts
 

Posted 09 June 2014 - 11:06 AM

try keeping a food journal and make notes on how certain foods are being digested/agreeing with your gut and which are giving you trouble.  it's easier to find the 'culprit' and then just skip it for awhile.  i couldn't eat (ie) peppers for a long while but have been able to add them back in.  i am one of the ones who have trouble with soy (nothing to do with being celiac, but the celiac 'disguised' my intolerance) so, i try to avoid it.  (now, my gelato has soy in it, so i trade off now and again lolz) if i make a whole meal, and i have indigestion, i'll try each item separately and figure out what is bugging me.  as you heal, you will more than likely get to add foods back in.  give your gut a minute to get healing :)  if you have significant villi damage, your body isn't producing the enzyme that digests dairy products.  it is produced on the tips of your villi, so, if they're damaged, you won't be able to eat/drink dairy for awhile.  i think i skipped dairy for 6 months.  i have it back, now, no problem.

 

also, using probiotics and digestive enzymes has helped a lot for me.  the enzymes are especially helpful (STILL) to help digest raw stuff like salads and veggies.  i played around with different combinations and here's what works for me:  culturelle at night, enzymes before meals, and i have a probiotic/enzyme combination i take with lunch or big snack in the afternoon.  

I just recently found out that I can't have soy!!!! everything I ate had soy  :angry:, I'll be going to see a nutritionist soon, god willing I'll get some good advice and I would be able to live a happy gluten-free life  :D


  • 0

#14 Maria B.

 
Maria B.

    New Community Member

  • Advanced Members
  • Pip
  • 13 posts
 

Posted 09 June 2014 - 11:15 AM

I know no matter how many times people tell me to stick to whole foods right now while I heal, I have a hard time doing it every day.  After years of misdiagnosis, most of us are so sick it takes a long time to heal.  I know if I have too many different foods right now, I get sick.  If I have too much sugar, I get sick.  Can't have too many raw veggies, if any at all some days.

 

It seems like I am blowing smoke right now since I can't even follow my own advise. But it is so hard after all we have to give up so many foods and  to not even be able to have the gluten-free version because it is processed and our guts just can't handle that.  I was also wondering if you are eating a different variety of foods that are tested down to 20ppm, are you actually getting a significant amount from eating too many in one day? 

I saw on a website that Celiac's should not have SOY! I've been still sick since finding out that I was Celiac and living gluten-free, nothings changed, however since finding out about soy and removing from my diet i have been feeling a little better.  I still have joint pain and inflammation, however my stomach feels better.  I used to drink, Green Tea with lemon and honey and when I scanned the bar code (an app for my iPhone called shopwell) it came up that it has soy  :o, so now I drink just plain ole Green Tea.  I am also upset because I am a huge fan of Nutella and rice cakes....Nutella has SOY!  :rolleyes: I'll be seeing a Celiac Certified Nutritionist in 2 weeks, I'll be more than happy to share with everyone what she say.


  • 0

#15 kareng

 
kareng

    Be Royal

  • Moderators
  • PipPipPipPipPipPip
  • 14,122 posts
 

Posted 09 June 2014 - 11:17 AM

I saw on a website that Celiac's should not have SOY! I've been still sick since finding out that I was Celiac and living gluten-free, nothings changed, however since finding out about soy and removing from my diet i have been feeling a little better.  I still have joint pain and inflammation, however my stomach feels better.  I used to drink, Green Tea with lemon and honey and when I scanned the bar code (an app for my iPhone called shopwell) it came up that it has soy  :o, so now I drink just plain ole Green Tea.  I am also upset because I am a huge fan of Nutella and rice cakes....Nutella has SOY!  :rolleyes: I'll be seeing a Celiac Certified Nutritionist in 2 weeks, I'll be more than happy to share with everyone what she say.

 

 

There are no reputable Celiac centers or associations that I  am aware of that say that   Celiacs cannot have soy.  If you have a legitimate source, please post it.  

 

Like I said before, there are people, Celiac or not Celiac, who have issues with soy.  


  • 0

LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
Celiac.com - Celiac Disease Board Moderator
 

 





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: