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

IBS diagnosis....confused!


GlutenedCN

Recommended Posts

GlutenedCN Apprentice

Hey guys! 

Over the past few months, I've identified myself as extremely gluten sensitive (NCGS). I've been getting used to this diagnosis, but lately, I've had a lot of pain when eating random foods as well. 

My doctor diagnosed me with IBS, which I've heard is pretty common. However, looking over the FODMAPS list, I cannot believe how many things are considered restricted. My doctor said that I shouldn't cut out these foods altogether, but I'm just wondering if anybody else who has IBS could tell me what works for you. Which foods do you cut out entirely, and how much can you eat of trigger foods before feeling sick? Is it just trial and error? 

Thanks so much! 

 

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am not a doctor, but IBS is sort of code for "I be stumped".  But your doctor has give you good advice.  Besides  strictly adhering to the gluten-free diet, follow the FODMAP diet for at least six weeks.  Keep a food and symptom diary.  If you improve after six weeks, try adding the restrictive food back into a diet, one food at a time.  You might be able to figure out what is triggering your symptoms.  If it does not help, go back to your doctor.  I hope you figure it out.  

 

  • 1 month later...
mnburis Apprentice

I've been fighting an IBS diagnonis for years despite tests that clearly show its something else. I tried the FODMAP diet. It didnt do squat for me. Personally I'm in the boat of IBS is a trash can diagnosis. 

Feeneyja Collaborator

SIBO (small intestine bacterial overgrowth) needs to be ruled out. The following paper has a ton of great information. Basically, about 50% of folks with IBS actually have SIBO causing their symptoms. It is diagnosed with a breath test.  Treatment with antibiotics (either standard or herbal) is necessary PLUS dietary adjustments.  Of those treated for SIBO, about 50% relapse within 9 months, so often repeat courses of antibiotics are necessary.  A reduction in fermentable carbs is usually necessary to keep SIBO at bay. My daughter has had SIBO that was treated and relapsed and I found that the low Fodmap diet wasn't really effective.  The SIBO Specific Diet has worked well for us (Open Original Shared Link).  Once a month she takes an herbal antibiotic for about a week.  This has also helped.  FYI, the diagnosis, treatment, diet, and management are being done with the help of her doctor and nutritionist at U of C.  

Open Original Shared Link

More info about SIBO:  Open Original Shared Link

SIBO is a piece of the puzzle.  Those with gluten intolerance (celiac or NCGS) are more likely to have SIBO.  If it is SIBO, treatment makes a HUGE difference.  

Edited to add:  Yes, the diet adjustments are difficult. And at first my daughter didn't want to do it so I didn't push it. But after feeling terrible for a year, she asked for it and the restriction of fermentable carbs did the trick. Since starting the herbal antibiotic rotation plus diet adjustment, she is now SIBO free for 3 months. We have been fighting this battle for two years.   

Another useful dietary tool is the Fast Tract Diet. It is basically the SIBO Specific Diet with a means for measuring your fermentable carbs. It helps quantify things and helps you make choices and pinpoint symptom agrivators. Open Original Shared Link

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.