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
- - - - -

Long Time Gluten Free Still Having Pain


  • Please log in to reply

9 replies to this topic

#1 ArriettyPC

 
ArriettyPC

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 03 May 2013 - 09:25 PM

I've been gluten free for nearly 5 years now and I'm still having a lot of trouble with pain in my lower abdomen. I freaked out really bad once, because it was in the same place as when my step-dad's appendix burst, spent 4 hours in the hospital and a very expensive MRI to have the doctors say they couldn't find any reason for it to hurt.

I try to be very careful, but am I crazy? Am I not being careful enough? Is there anything I can do to make it go away? I've gotten so use to not feeling good, do I need to just stop complaining about it?
  • 0

Celiac.com Sponsor:

#2 Celiac Mindwarp

 
Celiac Mindwarp

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,167 posts
 

Posted 03 May 2013 - 11:39 PM

Hi there
Sounds like something going on still. Have a look at the newbie101 thread in the coping with section. Many of us spot places we could be getting cross contamination.

One other possibility is that you could (also??) have developed food intolerances, which many of us seem to do.

Read around and ask questions, we will do our best to help you get to the bottom of it :+

Welcome to the board!
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#3 flowerqueen

 
flowerqueen

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 223 posts
 

Posted 04 May 2013 - 12:59 AM

I agree with the above comment. I have had similar issues and am intolerant to dairy and have had difficulty getting enough fibre in my diet (until recently) since becoming gluten free - being a sufferer of IBS for 30 years. Keep a food journal to see if anything shows up there.
  • 0
Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#4 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,135 posts
 

Posted 04 May 2013 - 05:08 PM

Hi ArriettyPC,

 

5 years should be more than enough time to heal your gut from celiac damage.  But, as others said, there are other possible food intolerances that can cause problems also.  Some celiacs have an immune reaction to oats like they do to wheat, rye and barley.  There are  great number of other food intolerances that can cause symptoms.  Nightshades, soy, dairy, eggs, nuts, corn, the list goes on and on.  Finding out if you have any additional food intolerances is kind of a detective game for each person.  Since each of us can develop our own reactions.  A good first step would be to make 100% sure there is no gluten or cc sneaking into your diet.  After that you could try an elimination diet.  There are many threads about elimination diets on the forum.


  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 Deaminated Marcus

 
Deaminated Marcus

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 191 posts
 

Posted 05 May 2013 - 11:20 AM

I did a food intolerance test and some of it concordanced  with the foods I had listed prior to the test like Kidney beans.

The test pointed out many others like peas, oats, etc.

 

 

You could talk to your doctor if he-she thinks you should be getting a colonoscopy for your abdominal pains.


  • 0

#6 Em314

 
Em314

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 112 posts
 

Posted 05 May 2013 - 12:16 PM

ArriettyPC- have you had your blood levels of gluten antibodies checked?  That might be a relatively quick and non-invasive way to get an inkling of whether it's gluten hiding in your diet, or something else.  5 years of being gluten-free without relief from pain doesn't sound normal, expectable or something you should accept.


  • 0
Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

#7 frieze

 
frieze

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,086 posts
 

Posted 05 May 2013 - 09:47 PM

GYN issues ruled out?


  • 0

#8 cyclinglady

 
cyclinglady

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 1,714 posts
 

Posted 06 May 2013 - 09:28 AM

I've been gluten free for nearly 5 years now and I'm still having a lot of trouble with pain in my lower abdomen. I freaked out really bad once, because it was in the same place as when my step-dad's appendix burst, spent 4 hours in the hospital and a very expensive MRI to have the doctors say they couldn't find any reason for it to hurt.

I try to be very careful, but am I crazy? Am I not being careful enough? Is there anything I can do to make it go away? I've gotten so use to not feeling good, do I need to just stop complaining about it?

I have a strong family history of non-functioning gallbladders.  No stones (they'd show up on an MRI or Ultrasound), just lower abdominal pain (not near my gallbladder).  The pain was severe enough for me to pass out!  A HIDA scan confirmed the diagnosis and surgery cured the problem (gallbladder was infected/rotting) by then. I've read there's a strong correlation between non-functioning gallbladders, pancreatic issues and celiac disease.  

 

As other suggested, food allergies/intolerances can develop at anytime and symptoms can be immediate or delayed (up to 48 hours).  


  • 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 ArriettyPC

 
ArriettyPC

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 06 May 2013 - 09:47 AM

I haven't had my blood checked, but I think contamination might be the problem. I live with people who..."don't see the big deal" with gluten intolerance or my other food allergies. I try to be very careful, but I'm guessing I'm not being careful enough. Thank you for all the help. I feel kind of silly, I've done the food journals and all and thought I was done with it years ago. Thanks again.
  • 0

#10 cavernio

 
cavernio

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 428 posts
 

Posted 06 May 2013 - 10:41 AM

If it's cc from your house or work or someplace else besides the food product itself, journals will miss it because it's intermittent and not related to the food itself, but other things like who ate right before you in the kitchen, etc.


  • 0
diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: