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

Still having diarrhea


CeliacMan2112

Recommended Posts

CeliacMan2112 Rookie

Hey, I was diagnosed with celiac like six months ago. I have been gluten free now since being diagnosed. The problem is I'm still having diarrhea. I was having it every single day like 6 times a day until recently I was put on Budesonide. That has slowed down or stopped the diarrhea, the problem is as soon as I stop taking the pills I start having diarrhea the very next day. I don't want to have to take the steroids for the rest of my life since they have side effects too. Any advice on this or please provide your perspective.

Thanks


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
1 hour ago, CeliacMan2112 said:

Hey, I was diagnosed with celiac like six months ago. I have been gluten free now since being diagnosed. The problem is I'm still having diarrhea. I was having it every single day like 6 times a day until recently I was put on Budesonide. That has slowed down or stopped the diarrhea, the problem is as soon as I stop taking the pills I start having diarrhea the very next day. I don't want to have to take the steroids for the rest of my life since they have side effects too. Any advice on this or please provide your perspective.

Thanks

Are you 100% your gluten free? Like not eating outside of your house, not eating processed foods? Please read up on teh newbie 101 section for anything you might have missed like scratched dishes, crumbs in condiment jars, etc. Try removing all dairy, soy, and oats as these are common culprits that we develop issues with. https://www.celiac.com/forums/topic/91878-newbie-info-101/

Next up, keep a food diary, it is not uncommon to develop other food sensitives or intolerance issues. Limit your daily foods to just 3-5 ingredients a meal and record reactions and bowel habits and timing. Try to remove certain foods and eat the same foods for 3-5 days at a time rotating one in one out then trying them again. Point is to find patterns and foods that might make it worse, IE coffee, a spice, night shades, carbs, sugars. I found I work best on a no carb diet with a keto/paleo base but everyone is different.
Open Original Shared Link
Next looking into digestive enzymes, If your not getting enough to digest your foods it can cause all kinds of issues.https://www.celiac.com/forums/topic/119919-digestive-enzymes/
 

I deal with mine and help by consuming 3000mg of potassium daily, and consuming foods with coconut flour like coconut flour porridge, baked goods etc. it tends to thicken up and give bulk to stool.

 

cyclinglady Grand Master

What exactly do you eat?  Do you ever eat out?  Do you eat oats?  Have you tried the Fasano diet?  

Learn here:

Open Original Shared Link

You joined in January.  Did you get an endoscopy?  Assuming you had one, other AI issues, like Ulcerative Colitis been ruled out?   If you never got that endoscopy and you are dietary compliant, consider getting one.  It might not just be celiac disease.  

Going on a steroid without a dietitian reviewing your diet or  attempting the Fasano diet seems pretty drastic.  

I am not sure I understand your situation or your whole story.  

 

  • 4 weeks later...
Ashish1988 Newbie

Try having probiotic..

knitty kitty Grand Master

I hope you are feeling better.  I experienced diarrhea for a long time.  It resulted in nutritional deficiencies.  My doctors overlooked simple vitamin deficiencies in favor of writing numerous, expensive prescriptions that never improved the symptoms.  

Deficiencies in certain vitamins, like Vitamin D, B12, thiamine and niacin, will actually cause diarrhea. 

Here's a list of vitamin deficiencies and their symptoms.

Open Original Shared Link

Hope this helps.

On 4/15/2018 at 6:57 PM, CeliacMan2112 said:

Hey, I was diagnosed with celiac like six months ago. I have been gluten free now since being diagnosed. The problem is I'm still having diarrhea. I was having it every single day like 6 times a day until recently I was put on Budesonide. That has slowed down or stopped the diarrhea, the problem is as soon as I stop taking the pills I start having diarrhea the very next day. I don't want to have to take the steroids for the rest of my life since they have side effects too. Any advice on this or please provide your perspective.

Thanks

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.