Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten Free Since 2010 And Still Suffering.

Celiacsuffer09

By Celiacsuffer09
in Coping with Celiac Disease

Recommended Posts

Celiacsuffer09 Newbie
Celiacsuffer09
Posted

Hello everyone. I'm new to the forums and I'm here looking for some support. I was diagnosed at the age of 29 in February of 2009 with Celiac disease. The diagnoses was by blood work alone and I started the gluten-free diet right away. In May of that year I become really ill and was sent in for a scope procedure. The biopse came back negative for Celiac disease so I started eating gluten again, but the smytoms was still there. I was still having frequent bowel movements, diarrhea, sudden urgency to have a bowel movements and so fourth. So I went back and had the scope procedure done again and the biopse showed Celiac disease. I started the diet once again and have been gluten-free since March 2010.

Since being gluten-free I have seen some improvement, but to this day I still have digestive issues. Like today, I have had 7 bowel movements. I'm doing everything to keep gluten out of my diet, I exercise a lot and trying to be healthier. In the past year alone I have had 2 scope procedures done and things come back looking good. No blunting of the villi or any signs of other diseases. Some days I feel so lost and don't really know what to be eating anymore.

The doctor recommended taking a fiber supplement, that didn't help. He recommended 2 different medications for IBS, which I tried both with no affect. I was tested for lactose intolerence which came back negative. I just don't know what to be doing.

I do have other health issues. I have been battling depression since 2010 and I have back issues. I question if these other issues are having a impact on my digestive problems. I was wondering what other health issues my fellow Celiac suffers have? I am also looking for advice and help in regards to my digestive issues. I would like to know if you all are still having issues while being gluten-free? When the GI doc tells you there isn't much more that he can do for you, you feel alone and question if you will ever get better.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


NoWhammies Newbie
NoWhammies
Posted

I'm sorry you're still struggling. Have you ever tried the low-FODMAP plan for IBS? The four-week elimination diet can help you determine if perhaps certain types of carbohydrates are causing some of your symptoms. It's pretty restrictive, but it's only four weeks. Also, do others in your home eat gluten/prepare foods with gluten? I wonder if you are dealing with cross contamination issues.

cyclinglady Grand Master
cyclinglady
Posted

How is your gallbladder? Still functioning? Any other food intolerances?

Dugudugu Rookie
Dugudugu
Posted

I was also tested for lactose intolerance and the test came back negative, just like the gluten, soy but also cats and dog allergies. If I eat a slice of cheese or sleep with a cat beside my pillow, I'll know immidiately. So for me the test has no value and I recomment to go lactose-free afteral for some time and give it a try.

Currently I am having the same issues as you have. My docter has send me in for a colonscopy as he wants to make sure the problem is not there. I still have to find the courage to make the appointment....

ravenwoodglass Mentor
ravenwoodglass
Posted

Are you taking any meds for the other conditions? If so have you checked to be sure that they are gluten free?  Have you tried eliminating all dairy and soy? Some of us have problems with those and casien (milk protein) intolerance wouldn't show up on lactose testing. Be sure to check out the newbie thread at the top of the Coping thread just in case there is something that is CCing you. Considering how much gluten we have to consume to be tested after being gluten free it might be possible that you are being CC'd but not at a high enough level to show up on testing. 

I hope you can get to the bottom of what is going on soon. 

C-Girl Contributor
C-Girl
Posted

Hello everyone. I'm new to the forums and I'm here looking for some support. I was diagnosed at the age of 29 in February of 2009 with Celiac disease. The diagnoses was by blood work alone and I started the gluten-free diet right away. In May of that year I become really ill and was sent in for a scope procedure. The biopse came back negative for Celiac disease so I started eating gluten again, but the smytoms was still there. I was still having frequent bowel movements, diarrhea, sudden urgency to have a bowel movements and so fourth. So I went back and had the scope procedure done again and the biopse showed Celiac disease. I started the diet once again and have been gluten-free since March 2010.

Since being gluten-free I have seen some improvement, but to this day I still have digestive issues. Like today, I have had 7 bowel movements. I'm doing everything to keep gluten out of my diet, I exercise a lot and trying to be healthier. In the past year alone I have had 2 scope procedures done and things come back looking good. No blunting of the villi or any signs of other diseases. Some days I feel so lost and don't really know what to be eating anymore.

The doctor recommended taking a fiber supplement, that didn't help. He recommended 2 different medications for IBS, which I tried both with no affect. I was tested for lactose intolerence which came back negative. I just don't know what to be doing.

I do have other health issues. I have been battling depression since 2010 and I have back issues. I question if these other issues are having a impact on my digestive problems. I was wondering what other health issues my fellow Celiac suffers have? I am also looking for advice and help in regards to my digestive issues. I would like to know if you all are still having issues while being gluten-free? When the GI doc tells you there isn't much more that he can do for you, you feel alone and question if you will ever get better.

 

First: your doctor diagnosed you with celiac, you went gluten free for a few months and the biopsy was negative... and your doctor ignored the blood positive? If I were you, I'd get a new doctor! You ate gluten for almost a year and duh! You have damage to your small intestine. That just doesn't make any sense for a doctor to let you go through that.

 

Rather than your depression causing digestive issues, I would hazard a guess that your digestive issues are causing your depression. There have been Open Original Shared Link that support the idea, although other studies comparing depression rates in the celiac vs. general population didn't detect a difference.

 

I was diagnosed with microscopic colitis half a year after going gluten free, the lingering symptoms were taking a huge toll on my mental health. Once I was treated for the MC, my mental state became immediately better.

 

The MC Open Original Shared Link in the celiac population is 50x that of the regular folks, so it's worth getting checked out. It involves a colonoscopy with numerous biopsies up and down the colon, unfortunately.

 

Best of luck, hope you get some answers.

Celiacsuffer09 Newbie
Celiacsuffer09
Posted
  • Author

I have looked into the Fodmap diet a few months ago. I think I may have to give it a try. I was questioning if I may have been getting cross contaminated by others I have lived with, but right now I'm living on my own and still having the issues. 

I'm sorry you're still struggling. Have you ever tried the low-FODMAP plan for IBS? The four-week elimination diet can help you determine if perhaps certain types of carbohydrates are causing some of your symptoms. It's pretty restrictive, but it's only four weeks. Also, do others in your home eat gluten/prepare foods with gluten? I wonder if you are dealing with cross contamination issues.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Celiacsuffer09 Newbie
Celiacsuffer09
Posted
  • Author

I think the doctor has tested my gallbladder, so I guess it's ok. As for other food intolerances, I have only been tested for lactose intolerance, so I'm unaware of any others.

How is your gallbladder? Still functioning? Any other food intolerances?

Celiacsuffer09 Newbie
Celiacsuffer09
Posted
  • Author

I have reduced my dairy intake dramatically from my diet. I switched to a Soy beverage to replace milk. I have tried eliminating all dairy from my diet before, with no real results.

I was also tested for lactose intolerance and the test came back negative, just like the gluten, soy but also cats and dog allergies. If I eat a slice of cheese or sleep with a cat beside my pillow, I'll know immidiately. So for me the test has no value and I recomment to go lactose-free afteral for some time and give it a try.

Currently I am having the same issues as you have. My docter has send me in for a colonscopy as he wants to make sure the problem is not there. I still have to find the courage to make the appointment....

Celiacsuffer09 Newbie
Celiacsuffer09
Posted
  • Author

I'm taking medications for my depression and hypertension, in which I always check with the pharmacy to ensure they are gluten-free. 

Are you taking any meds for the other conditions? If so have you checked to be sure that they are gluten free?  Have you tried eliminating all dairy and soy? Some of us have problems with those and casien (milk protein) intolerance wouldn't show up on lactose testing. Be sure to check out the newbie thread at the top of the Coping thread just in case there is something that is CCing you. Considering how much gluten we have to consume to be tested after being gluten free it might be possible that you are being CC'd but not at a high enough level to show up on testing. 

I hope you can get to the bottom of what is going on soon. 

Celiacsuffer09 Newbie
Celiacsuffer09
Posted
  • Author

My family doctor had diagnosed me with the blood work, but the GI doctor who took the biopsies basically ignored the blood work. In regards to the depression, I know a lot of that is from my digestive issues, but wonders some days is it the opposite. 

 

In regards to other GI diseases, I have had several scopes up and down and biopsies taken. No other diseases was found. 

First: your doctor diagnosed you with celiac, you went gluten free for a few months and the biopsy was negative... and your doctor ignored the blood positive? If I were you, I'd get a new doctor! You ate gluten for almost a year and duh! You have damage to your small intestine. That just doesn't make any sense for a doctor to let you go through that.

 

Rather than your depression causing digestive issues, I would hazard a guess that your digestive issues are causing your depression. There have been Open Original Shared Link that support the idea, although other studies comparing depression rates in the celiac vs. general population didn't detect a difference.

 

I was diagnosed with microscopic colitis half a year after going gluten free, the lingering symptoms were taking a huge toll on my mental health. Once I was treated for the MC, my mental state became immediately better.

 

The MC Open Original Shared Link in the celiac population is 50x that of the regular folks, so it's worth getting checked out. It involves a colonoscopy with numerous biopsies up and down the colon, unfortunately.

 

Best of luck, hope you get some answers.

beth01 Enthusiast
beth01
Posted

For other food intolerances, you are going to have to keep a food diary. Write down everything you eat and drink and your symptoms when you get them so you can pinpoint the problem foods. Soy makes me feel like gluten does, cut out the soy milk and try an almond milk. Most likely the pharmacy isn't going to tell you about each an every med, you usually have to call the manufacturer, just my experience. Good luck and hope you feel better.

cap6 Enthusiast
cap6
Posted

RE: meds......   If you can get your doctor to write your prescription out with "gluten free" on it the pharmacy will pay attention and be sure that the medication is ok.  If it's part of the prescription then they have to pay attention.  

BoJonJovi Newbie
BoJonJovi
Posted

It is likely that you are still eating out or are taking some medications or supplements that have gluten. Tighten er up partner and eat at home. 

 

It takes 1/200th of a teaspoon of gluten to set off the autoimmune response. If you remember that you can see the issue of eating out. If they have gluten fair it is likely that you are going to get some of it from an inexperienced cook or server. Eating out is a crap shoot at best. Frankly I would rather shoot craps, lose money than be sick. 

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Hi - I'm wondering if you are eating anything that has the ingredients sorbitol  or manitol or inulin.  These give me terrible stomach and intestinal cramping and diarreah and nausea.  They are right at the top of my do not eat list along with gluten.

 

Edited to add - xanthan gum can do it also and unfortunately it's in a lot of gluten-free food as well as non gluten-free food.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,606
    • Most Online (within 30 mins)
      7,748
    LWceliac38
    Newest Member
    LWceliac38
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.