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

Is this really IBS??

Deb24

By Deb24
in Related Issues & Disorders

 Share

Recommended Posts

Deb24 Newbie
Deb24
Posted

I have recently been diagnosed with IBS Pain predominant. I have been struggling for 3 years with symptoms that started suddenly. I lost around 4 stones in a few months, couldn't eat, had diarrhoea at first but then turned into constipation probably due to drugs I was on. Bad pain around left side stomach & back. Feeling depressed, joint pains, fatigue, hives etc etc.  I have had every test possible however when I had an endoscopy I wasn't eating gluten & wasn't told that I should be. Nothing showed up on any of the tests other than a high fit test which was over 400?? Nothing was ever explained about this. I tried cutting out dairy & then gluten. Some of the symptoms have improved giving up gluten, I used to get flare ups where I couldn't get out of bed for 3 days & this has stopped since giving up gluten. I recently started pregablin which is helping with the pain. I still have most of the pain when I wake, sometimes at 3am or if I'm lucky 6am. I have to take Oramorph to ease the pain in the morning. I tried having a small amount of gluten the other day and the symptoms flared again. I get a really bad tight band feeling around my waist. Has anybody else experienced anything similar or have any advise at all to help me please.

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

Celiac.com Sponsor (A8-M):


plumbago Experienced
plumbago
Posted
17 minutes ago, Deb24 said:

I have recently been diagnosed with IBS Pain predominant. I have been struggling for 3 years with symptoms that started suddenly. I lost around 4 stones in a few months, couldn't eat, had diarrhoea at first but then turned into constipation probably due to drugs I was on. Bad pain around left side stomach & back. Feeling depressed, joint pains, fatigue, hives etc etc.  I have had every test possible however when I had an endoscopy I wasn't eating gluten & wasn't told that I should be. Nothing showed up on any of the tests other than a high fit test which was over 400?? Nothing was ever explained about this. I tried cutting out dairy & then gluten. Some of the symptoms have improved giving up gluten, I used to get flare ups where I couldn't get out of bed for 3 days & this has stopped since giving up gluten. I recently started pregablin which is helping with the pain. I still have most of the pain when I wake, sometimes at 3am or if I'm lucky 6am. I have to take Oramorph to ease the pain in the morning. I tried having a small amount of gluten the other day and the symptoms flared again. I get a really bad tight band feeling around my waist. Has anybody else experienced anything similar or have any advise at all to help me please.

Hi, This sounds awful and I'm so sorry you are going through this! What I can say just reading through your comment is: I'm surprised they didn't tell you ahead of your endoscopy to keep eating gluten, that they could not do the test unless they were. (Well, that's what they should have said!). A positive FIT test means there is blood in your stool - commonly, it may be coming from your digestive track, or it could be from a cut or other lesion in your anus or rectum. It is something you absolutely need to follow up on at any rate. Get an appointment to talk about that. Finally, it almost sounds like you have a severe autoimmune condition like Crohn's or indeed Celiac or both. I don't know. None of us who comment on here really knows what to advise based on the limited expertise we have and the limited amount of information we receive. Therefore, please do make a follow up appointment to talk about all of these possibilities. And check back in with us.

Deb24 Newbie
Deb24
Posted
  • Author

Thanks for your reply. The doctors have just told me that it is IBS & are not doing any further tests which is why I thought I might try & figure it out myself. Just thought that there may be people with similar experiences.

plumbago Experienced
plumbago
Posted
1 minute ago, Deb24 said:

Thanks for your reply. The doctors have just told me that it is IBS & are not doing any further tests which is why I thought I might try & figure it out myself. Just thought that there may be people with similar experiences.

Good for you to look for people with similar experiences - give it some time. People may chime in here.

Scott Adams Grand Master
Scott Adams
Posted

I would simply add that "IBS" isn't a real diagnosis, it's a set of symptoms that often has an underlying cause or trigger. To be diagnosed with IBS, in my non-medical opinion, basically having a doctor tell you exactly what you already knew when you went into his/her office...that you have IBS. To recover from IBS you'll need to determine whether or not it's food-related, which it often is, and eliminating the possibility of celiac disease should be a first step. The fact that you've been gluten-free in the past tells me that you suspect gluten.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

    2. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

    3. trents
      - trents replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      33

      What should I do with these test results?

      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high...
    4. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the...
    5. Itsabit
      - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,332
    • Most Online (within 30 mins)
      7,748
    Susan5940
    Newest Member
    Susan5940
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Itsabit
      SkinSafe

      By Itsabit · Posted

    • Itsabit
      SkinSafe

      By Itsabit · Posted

    • trents
      What should I do with these test results?

      By trents · Posted

      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high high.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! 
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed. 
×
×
  • Create New...