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

Is It Celiac Or Something Else?


melibig

Recommended Posts

melibig Newbie

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

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

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

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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,351
    • Most Online (within 30 mins)
      7,748

    giuseppe gamerra
    Newest Member
    giuseppe gamerra
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • 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.