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 & Still Having Gi Troubles


BrookeT

Recommended Posts

BrookeT Apprentice

Hello,

I was diagnosed with celiac 5 months ago and have been strictly gluten free and eliminated dairy as well, although I have it occasionally in processed foods. (I don't drink milk or eat cheese but I sometimes eat a lactose free organic plain yogurt.) All my supplements say they are gluten free on the bottles and I am careful about toothpaste, shampoo, lotion, lipstick, etc. Do I have to worry about cooking oils such as olive oil & canola oils being cross-contaminated? Oils & spices are the only things I can come up with as question marks. I had Marsh 3 severe damage so I know my healing will probably take longer than most. I have had some improvements with my anxiety, bloating, pain & fatigue, but I still have diarrhea/loose stools & constant stomach noises (rumbling, gurgling, etc.) which I've had since before diagnosis and it has not subsided. It gets worse right before my period. I have not lost any weight, which is amazing to me. Has anyone else with celiac experienced ongoing diarrhea after being gluten free? I feel like I will never have a normal b.m. again. Is it just going to take more time?

Any insight would be appreciated.


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



Celiac.com Sponsor (A8-M):



Holly4 Rookie

Hello,

I was diagnosed with celiac 5 months ago and have been strictly gluten free and eliminated dairy as well, although I have it occasionally in processed foods. (I don't drink milk or eat cheese but I sometimes eat a lactose free organic plain yogurt.) All my supplements say they are gluten free on the bottles and I am careful about toothpaste, shampoo, lotion, lipstick, etc. Do I have to worry about cooking oils such as olive oil & canola oils being cross-contaminated? Oils & spices are the only things I can come up with as question marks. I had Marsh 3 severe damage so I know my healing will probably take longer than most. I have had some improvements with my anxiety, bloating, pain & fatigue, but I still have diarrhea/loose stools & constant stomach noises (rumbling, gurgling, etc.) which I've had since before diagnosis and it has not subsided. It gets worse right before my period. I have not lost any weight, which is amazing to me. Has anyone else with celiac experienced ongoing diarrhea after being gluten free? I feel like I will never have a normal b.m. again. Is it just going to take more time?

Any insight would be appreciated.

I just learned about Candida and wonder if you may have a yeast problem?

willabec Contributor

Hello,

I was diagnosed with celiac 5 months ago and have been strictly gluten free and eliminated dairy as well, although I have it occasionally in processed foods. (I don't drink milk or eat cheese but I sometimes eat a lactose free organic plain yogurt.) All my supplements say they are gluten free on the bottles and I am careful about toothpaste, shampoo, lotion, lipstick, etc. Do I have to worry about cooking oils such as olive oil & canola oils being cross-contaminated? Oils & spices are the only things I can come up with as question marks. I had Marsh 3 severe damage so I know my healing will probably take longer than most. I have had some improvements with my anxiety, bloating, pain & fatigue, but I still have diarrhea/loose stools & constant stomach noises (rumbling, gurgling, etc.) which I've had since before diagnosis and it has not subsided. It gets worse right before my period. I have not lost any weight, which is amazing to me. Has anyone else with celiac experienced ongoing diarrhea after being gluten free? I feel like I will never have a normal b.m. again. Is it just going to take more time?

Any insight would be appreciated.

i have been gluten-free for 9 years and recently just got diagnosed with microscopic colitis b/c of ongoing bowel issues for the past 1-2 years. i can't remember that far back and how long it took me to get back to normal after going gluten free. i have just been focused on the past 2 years and my issues now. so, maybe it may take your body a little longer to get back to how it was before or see if microscopic colitis could be your culprit.

ravenwoodglass Mentor

You may want to try dropping the dairy and the processed for a bit and seeing if that helps. Go with whole naturally gluten free foods. Do you take any meds at all? If you do check with the maker to be sure they are safe. You mention that your supplements say gluten free on the bottle, do be sure to read all the ingredients as some will say gluten free but still have barley or wheat grass in them. Be strict about cross contamination and if you have a signifiacant other and they eat gluten make sure they brush their teeth well before you kiss.

I hope your feeling better soon and do have your doctor check for other issues that may be going on. A repeat of your diagnostic blood work may be helpful in telling you if you have gluten sneaking in somewhere. It may not be down to normal levels yet but the antibodies should be down at least a bit if you don't have gluten sneaking in.

Gemini Experienced

i have been gluten-free for 9 years and recently just got diagnosed with microscopic colitis b/c of ongoing bowel issues for the past 1-2 years. i can't remember that far back and how long it took me to get back to normal after going gluten free. i have just been focused on the past 2 years and my issues now. so, maybe it may take your body a little longer to get back to how it was before or see if microscopic colitis could be your culprit.

This is very good advice. Many Celiacs are being diagnosed with microscopic colitis when their symptoms fail to respond to the gluten-free diet. It isn't always about gluten.

I also had severe damage.....all the villi were pretty much gone. I did respond really well to a strict gluten-free diet yet I don't screen for topical products other than lipstick. If you are following a strict gluten-free diet, then you should heal enough that the diarrhea should stop fairly quickly. If it doesn't, then I agree that you should be tested for colitis because it's becoming increasingly common, like Celiac.

BrookeT Apprentice

I have just figured that one out, as you mentioned, that some companies say their product is gluten free but they have wheat grass or barley in them. I definitely pay close attention to labels now!

I am pretty strict about avoiding cross-contamination in my house.

I am not taking any meds. The only things in my diet that I question are cooking oils and spices. Do I need to be concerned with the possibility of cross-contamination with those?

I probably should have a followup blood panel run to see if my #'s came down.

Thanks for the advice!

You may want to try dropping the dairy and the processed for a bit and seeing if that helps. Go with whole naturally gluten free foods. Do you take any meds at all? If you do check with the maker to be sure they are safe. You mention that your supplements say gluten free on the bottle, do be sure to read all the ingredients as some will say gluten free but still have barley or wheat grass in them. Be strict about cross contamination and if you have a signifiacant other and they eat gluten make sure they brush their teeth well before you kiss.

I hope your feeling better soon and do have your doctor check for other issues that may be going on. A repeat of your diagnostic blood work may be helpful in telling you if you have gluten sneaking in somewhere. It may not be down to normal levels yet but the antibodies should be down at least a bit if you don't have gluten sneaking in.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,208
    • Most Online (within 30 mins)
      7,748

    Gail Brown
    Newest Member
    Gail Brown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.