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

Help, Please!


neylonas

Recommended Posts

neylonas Rookie

I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!


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



Celiac.com Sponsor (A8-M):



elligal Newbie

Why is Dr. being dismissive? That's not a good quality in a doctor. Sometimes you have to be persistant.

Eriella Explorer

These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

cookie22 Newbie

it sounds to me like you're in the right place. Have you been tested for crohn's and or colitis?

EmmaQ Rookie

Have you ever heard of the Carbohydrate Specific Diet?

I would start there.

The gut needs to be healed to be well.

The Maker's Diet is an interesting read, not sure if I buy it all, but it is good if you have the disipline to give up everything and try dirt to feel well. I think it worked for him, may or may not work for someone else.

ElenaDragon Explorer
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Wow, you just described my symptoms almost exactly! I am 28, female, and was diagnosed with IBS last year. I have been following the Eating for IBS diet on Open Original Shared Link, but my symptoms seem to have only been getting worse. I too have horrible bloating and gas. I am constipated during the day, but after the gas gets through, every morning I have diarrhea as soon as I wake up. For the past month or so I have also been having abdominal pain on both sides (more on the left than the right). My doctor gave me Bentyl for the IBS, and my celiac blood panel came back normal. I've tried Gas-X, and it doesn't do much for me, but I have only taken one at a time.

Gluten being the problem for me seems to make sense. I have already cut out dairy and soy, but gluten has been pretty constant in my diet (although not heavy). I am going to call my doctor's office to find out the details of my blood test results (numbers), and I decided to go ahead and try going gluten free for a while to see if I notice a difference. I've tried so many other things that it's worth a shot! Today is my first day, and so far I feel fine. Not much to go on yet though. :)

Mally-bug Apprentice
I am turning to you all for any assistance you can offer. I am a 30 year old female who has been diagnosed with IBS (about 1 year ago). My symptoms include excessive bloating, gas...constipation followed by diarrhea, extreme discomfort, etc. The dr. ordered bloodwork initially and all came back negative for celiac. I have completely cut out dairy and am currently on Amitiza for the IBS, but things are bad. I consume about 4-8 Gas-X pills a day because that is the only thing that makes me feel somewhat better. the doctor has beena bit dismissive when I suggested the posibility of Celiac.... Had an endoscopy and they determined that I have a hiatal hernia...no biopsy was done though...

Here are my questions:

Do these symptoms sound familiar to anyone?

Any suggestions about what to do next?

Books, resources, etc???

Any info would be greatly appreciated. I am so sick of feeling sick!

Have you tried the gluten free diet? That's what we did - without a dx. We are going through enterolab, but have had really great results with the diet. Give it a try - what can you lose but your symptoms? :rolleyes:


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



Celiac.com Sponsor (A8-M):



Mally-bug Apprentice
These sound very familiar... Because your blood work came back negative, it means a couple of things: you do not have a problem with gluten, your body doesn't produce antibodies to the gluten, but absolutely can't have it (me); or the test was wrong. The easiest way to find out is to go 100% gluten free for 60+ days to see how you feel. There is no risk of harm going on a gluten free diet without a diagnosis. When I went gluten-free, I felt better after 24 hours and my symptoms started going away after 10 days, but some people get no improvement for a month.

If you do go gluten free, keep a food journal of everything that goes in or on your body so you can tell if you have hidden gluten (shampoo, lotion, pesky food companies that changed their ingredients). If you feel better off of gluten, and have been better for at least a month, you can ask your doctor of a diagnosis of gluten intolerance based off of a positive dietary response. It isn't quite a celiac diagnosis because there is both a non-celiac and celiac form of gluten intolerance, but it is a way to classify yourself and to get a medical note if you need one

As far as books-- I don't have time to read them, but people recommend Dr. Greene's book and Gluten Free for Dummies. As far as resources-- this site has more information than anywhere else. For a basic how to start guide, see Open Original Shared Link

I am totally new to all of this...have only been on the gluten-free diet for less than a week. So you are saying that there are you can be a non-celiac but still have a gluten intolerance? I am going to try to research it but if you could give me a little insight on that, it would be great. I have also had a very positive dietary response already, but have not had the actual diagnosis yet, so any information you can give is great. thanks...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,565
    • Most Online (within 30 mins)
      7,748

    Gma Marsh
    Newest Member
    Gma Marsh
    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

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.