Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 related bo?

V123

Recommended Posts

V123 Apprentice
V123
Posted

Hi,

I have undergone an endoscopy and was found that I do not have celiac.

However, I had positive marker (IGG) and vitamin d deficiency tests. 

I am wondering if anyone has ever done a 23andme test and if they are a good idea

I really want to cut gluten out of my diet already, since I have many horrible symptoms (including fecal BO) and want to try to relieve them

But I have an appointment with a (sorta) wholistic dietician— not for another 5 weeks (hopefully she is good considering 6 weeks earliest to get an appointment) 

My mom’s friend has ibs problems too, and she is currently going to the same dietician and is on this weird elimination diet (no dairy, gluten, and some enzyme that’s in a lot of foods)

My dermatologist is gluten intolerant and she went to the same dietician and was diagnosed through the elimination diet and hasn’t eaten gluten in 3 years

I do have a lot of things in place to get back to normal health, but I am really impatient 

Has anyone ever done an elimination diet similar to the one I will most likely have to do? It seems like I may have to do it but not positive 

And has anyone had experience with  fecal BO related to gluten?

Still not diagnosis of gluten problems and I am very anxious that the diet won’t releive symptoms and I will have to deal with all of these symptoms for much longer than I want to to get a diagnosis of anything

Any experience with any of the above ?

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Read this about the 23 and Me test:

Open Original Shared Link

About 30 to 40% of the population carries the genes that could develop into celiac disease.  I suppose you could get the genetic test, so that if negative, you will know that you will never get celiac disease ever!  But I would go through my doctor where there is more privacy and insurance will pay.    Even then, some insurance company could deny you health or life insurance because you have celiac genes even if you are healthy.  So, think about it carefully!  

You tested negative for celiac disease via endoscopy.  That is good news!  Consider trialing the gluten free diet as you may have Non-Celiac Gluten Sensitivity.  It can not hurt provided you try to eat healthier versions and not gluten free cookies or chips.  

 

Ennis-TX Grand Master
Ennis-TX
Posted

Fecal BO? Like a fecal like body odor? A odd or off smell from the body is often a sign of a intolerance to something and your body excreting stuff from the pores....If I eat meat with enzymes to help me digest it (without enzymes I can not eat meat) My body starts emitting the smell of something like cat pee and fish....really bad smell to the point I just said no and gave up eating turkey, chicken and lean longhorn. Fish oddly does not trigger the smell....my dietician said it was a sign my body had issues with it. Try keeping a food diary and doing a elimination diet with common foods like gluten, dairy, meats, legumes. for say a week at a time for each one and see if how it changes then reintroduce for 1-2 days and remove again noting changes. Might find links to a intolerance.

knitty kitty Grand Master
knitty kitty
Posted

Open Original Shared Link

Thought this article may help.  It explains some reasons for body odor may be linked to vitamin or mineral deficiencies.  Malabsorption is common with Celiac Disease.  

I recommend the Autoimmune Protocol paleo diet.  Yes, an elimination is scary because one has to change one's mentality towards food...but the elimination of things irritating one's innards and the healing that can then take place is very much worthwhile.  

Hope this helps!

 

Jmg Mentor
Jmg
Posted
14 hours ago, V123 said:

I really want to cut gluten out of my diet already, since I have many horrible symptoms (including fecal BO) and want to try to relieve them

But I have an appointment with a (sorta) wholistic dietician— not for another 5 weeks (hopefully she is good considering 6 weeks earliest to get an appointment) 

My mom’s friend has ibs problems too, and she is currently going to the same dietician and is on this weird elimination diet (no dairy, gluten, and some enzyme that’s in a lot of foods)

My dermatologist is gluten intolerant and she went to the same dietician and was diagnosed through the elimination diet and hasn’t eaten gluten in 3 years

I do have a lot of things in place to get back to normal health, but I am really impatient 

Hi :) 

youve had celiac testing and so I don't think there's any need to wait the 5 weeks to see this new clinician before trialling the gluten-free diet as long as you approach it in a methodical way by keeping a food journal. If you note what you eat and when and how you feel then by the time you have your appt you will already have some useful data for the new dietician to examine.

best of luck :)

matt

  • 4 weeks later...
Fedco11 Newbie
Fedco11
Posted

Hey V123 -  I have a similar BO problem. I've tried a lot of things including going on a gluten-free diet for the last month.  It has helped but it is not the culprit. This week I've started removing rice from my diet. Keeping a journal and recording impressions has to be done consistently because days impressions start to merge with one another. I have eliminated meat, dairy, soy -based products from my diet already with no improvements. A liver supplement based of a milk-thistle flower helped for some time, and still does but at a lower rate. I wish I could be more helpful. But I live in Canada and seeing an specialist for a chronic disease like this takes about 6-7 months !  I have my appointment in August.  it's ridiculous. It's like one needs to get a letter from the Queen to see doctor here. I had done a colonoscopy a year ago in Colombia [i'm colombian] but nothing wrong came up.  Let me know how your appointment goes!  good luck.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,368
    • Most Online (within 30 mins)
      7,748
    Jdhunt
    Newest Member
    Jdhunt
    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
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...