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 It Celiac Or Something Else?

melibig

Recommended Posts

melibig Newbie
melibig
Posted

I will try not to ramble so excuse me if I do.

 

Starting from the beginning. 

 

After the birth of my second child Sept 2013, my body just felt tired and achy, I was tired all the time, and my joints hurt. I went to the dr they did blood work, and said that that is just how it is going to be after kids. I didn't believe that for a minute. A few months after that I started getting an upset stomach a few times a week (august 2014). I started seeing a gastrointerologist late October and he suggested a colonoscpoy and endoscopy. With that he said that my stomach lining had similar patterns to that of Celiac. He did blood work after that and told me to try a gluten free diet and see how that helped. 

 

I have been gluten free since November, with a few accidents, and I am feeling better but not 100%. The most improvement has been with my energy levels and joint pain. I am still having an upset stomach and nausea a few times a week. I have a follow up apt scheduled for next week but wanted to know if any of you have experienced this before. I feel like I have been really strict with my diet and if I have gotten gluten it has not been intentional. It is incredibly frustrating to live this lifestyle and it not be better. Don't get me wrong I am incredibly thankful for the energy and my joint pain to be gone, I just would like to know what the deal is with my stomach!! 

 

Thanks in advance for any help or advice!!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Do you actually have Celiac or not?  The doc sounds a bit wishy washy with this "try gluten-free" stuff.  If it isn't Celiac, he should be looking for other issues.

melibig Newbie
melibig
Posted
  • Author

Do you actually have Celiac or not?  The doc sounds a bit wishy washy with this "try gluten-free" stuff.  If it isn't Celiac, he should be looking for other issues.

Now that I have had time to think back on the whole experience he was wishy washy. My blood tests were never discussed with me, he just said the lining looked similar to Celiac. 

 

I am debating on whether or not to eat gluten again and see what happens. I don't want to go full blown because I am feeling more energized I just don't want to be as strict if its not necessary. 

kareng Grand Master
kareng
Posted

Now that I have had time to think back on the whole experience he was wishy washy. My blood tests were never discussed with me, he just said the lining looked similar to Celiac. 

 

I am debating on whether or not to eat gluten again and see what happens. I don't want to go full blown because I am feeling more energized I just don't want to be as strict if its not necessary. 

 

 

I would suggest you get copies of the Celiac blood tests and the biopsy (pathology) report from the endoscopy.  Celiac si not diaganosed by how a stomach lining looks.  A GI doc will take biopsies of the small intestines and then a pathologist will look at them under a microscope.  Sometimes the damage in the small intestine is bad enough that the doc can see it with the scope - but they still take multiple biopsies to be certain.

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. trents
      - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which...
    2. barb simkin
      - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      I had both the genetic genes for celiac. My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report. I also had polyps in 3 places throughout my large...
    3. trents
      - trents replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct? You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity...
    4. pweidema
      - pweidema commented on Scott Adams's article in Autumn 2025 Issue
      1

      The Unexpected Gluten Traps in International Snacks: What Not to Bring Back From Vacation

      Very informative. Thank you!
    5. barb simkin
      - barb simkin replied to barb simkin's topic in Related Issues & Disorders
      8

      celiac, chocolate and alcohol

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,333
    • Most Online (within 30 mins)
      7,748
    BeitAryeh
    Newest Member
    BeitAryeh
    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

    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
×
×
  • Create New...