Celiac.com Sponsor (A1):

Join eNewsletter

Celiac.com Sponsor (A1-m):

Join eNewsletter


This topic is now archived and is closed to further replies.


Should I Still Be Sick After 2 Years ?

Recommended Posts

Hi. I was (sort of) diagnosed with celiac two years ago. I delt with one doc for eleven months. By that time i was in some much pain and misery all i could think about was jumping off of a building. The second doc said he was 99% sure it was celiac. I stopped eating gluten that day.

Things slowly got better since then. I slowly began to fell better and regained my sanity. The thing is I still get sick 75 % of the time after I eat. Its not nearly as bad as it was before but it still hurts and I'm sick of it. :(

I have tried eating smaller portions and different things but it doesn't help. I can't begin to tell you how intrusive this is with day to day living. I am thinking that since it took a year to get diagnosed I may have done irreparable damage to my intestines. Any help would be greatly appreciated.

Share this post

Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

Have you tried the elimination diet?

Eliminate all foods except a few (rice, chicken, apple/pear and a veggie). After 3 weeks reintroduce one thing a week and make sure to keep a food journal to note any possible reactions. They can take anywhere from a few hours to couple days.

I don't really have any ideas but I invite you over to the OMG thread. It's turned into a thread for those that haven't had symptoms resolved going gluten free.


Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)

The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post

Link to post
Share on other sites

A rotation diet is a good idea. If it's a food sensitivity causing your ongoing problems, you will pick it up.

For some of us, gluten intolerance is only once piece of the puzzle. Gluten makes me sick, and I'm doing a lot better off it, yet I'm still sick. I'm in the process of finding out what else is wrong. In some cases, a person has celiac, they get off gluten and get better. In other cases, there are other problems that go along with it.

As Andrea has said, we talk a lot about related issues on the OMG thread. DON'T try to read the whole thread!!! :o Just jump in and introduce yourself. Some of us are being tested for Lyme Disease, some for Eos, some are having heavy metal toxicity ... you can get ideas of other avenues to research.

gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post

Link to post
Share on other sites

I would still be 100 % sick if I had not gone on the elimination diet too. I react to soy, dairy, corn and eggs. And anything fried.

It takes time to heal, but if you are still having symptoms, chances are you are sensitive to one of the other foods listed above and won't feel better until those are gone.

In order to fully take advantage of the elimination diet, you have to get your digestive system to calm down so that you can really tell what food is upsetting it.

Papaya, mango and pineapples contain natural digestive enzymes and are a good thing to add right away.

I still have problems from time to time, but I am also adding in new foods regularly now.

Hope this helps ... marcia

Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

Share this post

Link to post
Share on other sites

I would suggest that you keep a food diary. Just get a notebook with loose leaf paper and write down every thing that you eat. Document how you feel after eating the things that you wrote down and the time of reaction. There may be a pattern here that you may not be aware of.

I hope that you feel better soon and feel always free to ask here.


Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post

Link to post
Share on other sites

Edit: I just reread your post and I think my suggestion is off-track!


Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

Share this post

Link to post
Share on other sites