Jump to content





   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

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


  • Please log in to reply

30 replies to this topic

#16 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 29 April 2014 - 08:33 AM

Me neither until recently.  I wish that I had known long ago.


  • 0

Celiac.com Sponsor:

#17 luvrdeo

 
luvrdeo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 109 posts
 

Posted 01 May 2014 - 08:26 AM

Makes for interesting reading!  I went a saw a new doctor today, and as a result am having a colonoscopy and endoscopy next week to try and figure out what might be still giving me such issues.  Hoping for anwers!


  • 0
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

#18 lucky28

 
lucky28

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 105 posts
 

Posted 01 May 2014 - 12:19 PM

I'm also having problems; it will be 3 yrs in August that I'm gluten-free (strict) and still having symptoms. I signed up for a clinical study after my doc was no help and they did a biopsy today. Will be a week or so for results but damage (flattened mucosa) was still visible in my small intestine. Very frustrating! Just wanted to let you know you're not alone. Hang in there, hopefully we both can find some answers and relief!
  • 0
"They're my villi, and I need them NOW!"


Positive Biopsy- 08/11
Slightly positive tTG only- 06/11
Negative blood panel- 11/05
Diagnosed with IBS- 1981

#19 luvrdeo

 
luvrdeo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 109 posts
 

Posted 01 May 2014 - 12:25 PM

I'm also having problems; it will be 3 yrs in August that I'm gluten-free (strict) and still having symptoms. I signed up for a clinical study after my doc was no help and they did a biopsy today. Will be a week or so for results but damage (flattened mucosa) was still visible in my small intestine. Very frustrating! Just wanted to let you know you're not alone. Hang in there, hopefully we both can find some answers and relief!

Though I am not happy to see this - I am happy to see this!  I saw someone new at my doctors office today, and he was very aggressive which was nice.  He said I have 3 options for what the problem could (possibly) be: 1) some celiacs just don't heal by eating gluten-free, ever; 2) the colitis is just giving me fits; and 3) I have Crohns.  I explained to him that my issues have actually gotten worse (the chronic D) since going gluten-free, and that I am concerned with the long term effects of this??  Anyway, he seemed genually worried, and I'm hoping for more answers.  It is very frustrating, I feel like we've all been through enough already with having to give up gluten, and to not get better is defeating.  Keep me posted, my "procedure" is on Tuesday, and I'll do the same!  I'm glad I'm not TOTALLY alone here!


  • 0
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

#20 nvsmom

 
nvsmom

    Moderator

  • Moderators
  • PipPipPipPipPipPip
  • 3,347 posts
 

Posted 01 May 2014 - 06:44 PM

Good luck on Tuesday!


  • 0
Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

Celiac.com - Celiac Disease Board Moderator

#21 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 02 May 2014 - 05:50 AM

I'm also having problems; it will be 3 yrs in August that I'm gluten-free (strict) and still having symptoms. I signed up for a clinical study after my doc was no help and they did a biopsy today. Will be a week or so for results but damage (flattened mucosa) was still visible in my small intestine. Very frustrating! Just wanted to let you know you're not alone. Hang in there, hopefully we both can find some answers and relief!

 

Since you still have flattened villi, I think that you need an even more strict gluten-free diet.  Have you seen this study?: http://www.biomedcen...1471-230X/13/40

That's what I have to do, plus a little more strict.


  • 1

#22 NatureChick

 
NatureChick

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 183 posts
 

Posted 02 May 2014 - 11:32 PM

If you have that much D, you likely also have vitamin deficiencies, and if they are related to the UC, you could be caught in a vicious cycle. But I'd get tested for them anyway, figure out what you're up against. And finding out if you have vitamin deficiencies could be vital to overcoming any organ-function deficiencies, pancreatic or another.

Before I even read the other comments about it, I also thought additional food intolerances. Fructans / fructose would be high on the suspect list to research further, which is likely to lead you to FODMAP and to glycemic indexes. Lactose? Night shades? Alliums? I'm trying to think of what else I've seen others mention for additional food intolerances.

Also, if you have tried an elimination diet and it is too difficult for you to stick to, look up rotation diet. Works in four-day intervals while keeping a food diary to help find connections.

The only other thing that crosses my mind is to see if eating as non-toxic a diet as you can for a few weeks would help. So organic foods, meats that aren't treated with preservatives, nitrates or nitrites, no artificial colors or flavors - that sort of thing. I have no idea if this would have an effect on UC, but giving it a try could help you figure out if yellow#5 was the cause of your problems. Intolerances to food colorings are incredibly common and they have been linked to gastrointestinal damage.




 


  • 0

#23 powerofpositivethinking

 
powerofpositivethinking

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 631 posts
 

Posted 03 May 2014 - 04:30 AM

take a look at page 20-21 of this report: http://www.worldgast..._long_FINAL.pdf

 

it does list the following as reasons for persistent symptoms despite following a gluten-free diet:

 

 

Inadvertent gluten ingestion (this is the most common reason)

Wrong diagnosis

Lactose or fructose intolerance

Other food intolerances

Pancreatic insufficiency

Microscopic colitis

Bacterial overgrowth

Collagenous colitis or collagenous sprue

Irritable bowel syndrome

Ulcerative jejunitis

Enteropathy-associated T-cell lymphoma

Refractory celiac disease

The last three can be regarded as complications of long-lasting celiac disease.

 

I had been following a strict gluten-free diet for a year, but despite massive supplementation, my vitamin D and K levels would only climb a small amount.  I went back to the GI and was tested for fat malabsorption, and then was tested for pancreatic insufficiency and got diagnosed with both.  Now I'm taking Creon in the hopes to jump-start my pancreas.

 

Good luck!


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#24 FruitEnthusiast

 
FruitEnthusiast

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 336 posts
 

Posted 03 May 2014 - 09:33 PM

I have also been gluten-free for 2 years, but I'm not better yet. For me other food intolerances have been as big an issue as gluten. I think someone mentioned that they are grain free. I could not tolerate any grains or processed foods from the start. I know there are others who have had the same problem.

 

I don't know if a Naturopathic Dr. or someone like that could help you, by looking at your situation from a more holistic, natural perspective? Mine has been very helpful with taking the right vitamins and supplements, and balancing my diet. I never realized before how serious vitamin deficiencies can be.

 

I know how frustrating it is to keep working at it to try to figure it out. It's like a puzzle and it takes a long time through trial and error to figure out which pieces fit. Just when I think I'm going to lose my mind, I find another piece that fits and it teaches me to never give up in my search to solve this mystery. I believe there are always answers to be found if you keep looking :)


  • 1

Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#25 pr40

 
pr40

    New Community Member

  • Advanced Members
  • Pip
  • 11 posts
 

Posted 04 May 2014 - 04:38 AM

several posters report that even after going gluten free they are not recovering. I assume you tried many things and want to mention only two just in case you don't know about them. Align is a different kind of probiotic and is frequnetly recommended for rebuilding gut flora for people with IBS. Aparently Aligh has bacteria that resemble flora of newborns, the idea is to start from scretch. During my last flare up, I took it for a few weeks only, until the package run out and saw improvement within a week.

L-Glutamine pills are another thing recommended for the same purpose. I took them for a few weeks as well. I did not see any immediate effects but overall the recovery with them was much faster than recovery when I did not use them.


  • 0

#26 1desperateladysaved

 
1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,171 posts
 

Posted 04 May 2014 - 04:49 AM

Two years in and I feel like I am still in transition.  I had to make many changes.  I cut out many foods that I didn't tolerate.  I am currently doing the Specific Carbohydrate Diet.  That is grain free.  I picked up some new foods.  I am contacting food producers before I buy.  Don't give up.  It can be very complicated, but there is hope.

 

Dee


  • 0

#27 luvrdeo

 
luvrdeo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 109 posts
 

Posted 06 May 2014 - 02:16 PM

Blood tests came back showing that I do, in fact, adhere to a very strict gluten-free diet (which I knew)...doctor did some biopsies from the endo/colonoscopy, but said it's obvious that being gluten-free is not healing anything internally. 

 

In response to some of the above posts, I have tried Align, but got no relief :/  I've definitely considered going to a naturopathic doctor, and depending on what my biopsies show, that might be the route I take.  All my vitamin levels have always come back ok, which surprises me considering food literally goes through me like water.  Definitely not lactose intolerant, gave that up for 6 months and slowly reintroduced with no reaction.  Could it be a fructan issue?  Maybe.  Before being diagnosed with celiac I had looked heavily into the FODMAP diet, might be something I go back to.  Hopefully I'll have more results in a few days, and can start to move forward!


  • 0
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

#28 HavaneseMom

 
HavaneseMom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 170 posts
 

Posted 06 May 2014 - 07:13 PM

Hi luvrdeo,

I'm glad to hear your blood test came back fine, but sorry to hear your endoscopy didn't turn out as well.

I just wanted to mention that I tried the low FODMAP diet for a couple of weeks after my GI Dr. suggested it and it really helped my system to calm down. I think my symptoms are different from yours, but I was struggling to feel better and it made a difference for me. I would guess that you would know if it helps you within a couple of weeks on the diet. I really 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

#29 luvrdeo

 
luvrdeo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 109 posts
 

Posted 08 May 2014 - 06:04 AM

Hi luvrdeo,

I'm glad to hear your blood test came back fine, but sorry to hear your endoscopy didn't turn out as well.

I just wanted to mention that I tried the low FODMAP diet for a couple of weeks after my GI Dr. suggested it and it really helped my system to calm down. I think my symptoms are different from yours, but I was struggling to feel better and it made a difference for me. I would guess that you would know if it helps you within a couple of weeks on the diet. I really hope you feel better soon.

Going to the store today with a list of foods that are FODMAP safe - minor changes (have to swap some fruits and veggies) since I am paleo anyway - but it's worth a shot.  I'm beyond anxious to get my biopsies back, simply because I don't like what I read about the damage that is still happening inside.  It's flat out scary!  I'm pretty sure I'll end up back on steroids and immunosuppressants, that's always fun!


  • 0
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

#30 luvrdeo

 
luvrdeo

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 109 posts
 

Posted 08 May 2014 - 11:31 AM

Looks like it's just the colitis giving me hell...non-stop - and no matter what I eat it makes me sick.  They want me on steroids again, and I said no - didn't work the first time, and that was an awful experience.  So then they suggested Uceris, which I just got done with 60 days of...it helped some when I was on it, but the day I stopped everything fell apart again.  This has to be the most frustrating thing ever!  Sorry, needed to vent...


  • 0
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




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: