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

Pre Diagnosed, Ibs Diagnoses

mr120

Recommended Posts

mr120 Newbie
mr120
Posted

Hi all,

 

I'm new to these forums but have been a member of IBS forums for a long time.

 

I have suffered with what is diagnosed as IBS for around 7 years.

I resonantly started a FODMAP diet which includes part of a gluten free diet and is the first time I have actually seen a bit of improvement.

 

I did a liver test at home a month ago which indicated I had elevated bilirubin at quite a high level (normal, +, ++, +++) and I sat between ++ & +++, Urobilinogen was elevated too. This test probably means nothing but I have read a lot of doctors who see elevated bilirubin and use it as a good indicator of celiac disease..

Until the FODMAP diet I was always soft small BM's, I now see normal BM's on some days.

 

I guess my question lies within my main trigger/symptom(s):

 

But I really want to ask - My biggest issue is when I have big stresses such as :

 

Leaving the house,

Having somebody come over,

Waiting for postman with parcel,

Waiting for an answer to a question that might define something important etc (like emailing the boss, is my absence gonna get me fired..).. 

 

I will have strong urges to use the toilet, even if I don't really need to go (usually the first visit, I do)

These urges only go away when I have had the event pass by usually.

 

Did anyone else before going full Celiac diet have this problem?

 

 

 

Many thanks!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

If you want to be diagnosed with Celiac Disease, you need to continue eating gluten until testing is completed.  

mr120 Newbie
mr120
Posted
  • Author

I understand that, ATM I'm doing the diet with the idea I have IBS as that is what I was diagnosed with many years ago.

But I was curious if the symptom I mention was one someone with celiac had experienced and remedied by complete removal of gluten products and possibly how long that symptom took to go away.

 

 

Thanks

nvsmom Community Regular
nvsmom
Posted

Liver problems, IBS like symptoms and anxiety are all possible symptoms of celiac disease. I did not experience those, but there are others around here who have.

 

Welcome to the board.

HavaneseMom Explorer
HavaneseMom
Posted

To me it sounds like you are having a stress/anxiety response. I have this too and joke with my husband that I am a "nervous pooper".

I have Celiac and while my anxiety related issues have slightly improved on a gluten free diet, I still do often have this problem in similar situations you described. I am constipated most of the time, so it is a real change in my pattern when this happens. If I know I am going to be really anxious about something and have the urgency problem in a social situation where it would be inconvenient, I will take a little Xanax to calm my nerves and it does help. Otherwise, I just accept the fact that I am a nervous pooper :-)

notme Experienced
notme
Posted

'ibs' ought to be 'i.bs.u' - it's like a catch-all phrase that means 'i don't know what's wrong with you' in doctorspeak.  a symptom of what is really wrong with you.  i was told that for years:  you have irritable bowel syndrome.  sounds fancy, doesn't it?  of course my bowel is irritable!  WHY is it irritable?????????????????   

 

havanesemom, i also take a (quarter dose) of xanax when i am handed upsetting news or i am unusually nervous :/  helps immensely and if i take it at the first sign of "freakout mode" i can usually lessen the number of bathroom trips lolz ^_^

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
      131,370
    • Most Online (within 30 mins)
      7,748
    Redred1
    Newest Member
    Redred1
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • 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...