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

“Non-celiac disease”

Luna21
 Share

Recommended Posts

Luna21 Rookie
Luna21
Posted

Hey, so I am one of those “non-celiac disease” people and it’s quite frustrating. I first had a blood test done ordered by my GP. (It was because I was losing/had lost a lot of weight over the past few visites.) I had kind of a horrible bumpy ride getting to where I am today. I was also referred to a GI to see if I had anything wrong too, because sometimes I remember after eating something like that I wouldn’t feel good & foggy mind but just thought it was in my head. Basically thinking back now I had the classic celiac type symptoms (I didn’t ever tell them my symptoms because I was so use to them I thought them normal) ie. Diarrhea every night, brain fog, loss of apatite, mood swings fatigue etc.
Ok now, back to the GI office. It was cold, I was scared and kinda excited because I don’t know what to expect. I’m this skinny kid and the GI comes in, he stands there, looks at me and smiles. I’m telling you this is a GREAT doctor, love him. So basically we found out that my blood work was “through the roof” I’m assuming it was celiac markers where it’s supposed to be under 15 something and mine was 115 or 515, can’t remember. Well was ever and he says “don’t freak out but I think you have celiac” Eventually I do an endoscopy and it’s negative. He thinks scene I’ve been avoiding gluten my gut has healed but he didn’t know so he said I have “non-celiac-gluten sensitivity” why ever that means. Seriously. I think when I’m older I’m going to do a gluten challenge and have a mother endoscopy done?

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with CD based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.

Luna21 Rookie
Luna21
Posted
  • Author
8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have them.

Yes, I try to look for the blood test numbers. And I have been gluten-free for a few months now and symptoms are gone. I just really want to know if it’s actually celiac. 

8 hours ago, Scott Adams said:

At this point you should just try out the gluten-free diet for a few months to see if it helps. Are you gluten-free now? If your blood tests were this high, many doctors would have diagnosed you with celiac disease based on this alone, no biopsy necessary. Having a negative biopsy is just confusing at this point, but your blood test results are not confusing, and you should listen to them. Whether it is NCGS, or gluten intolerance, or gluten sensitivity, you need to be gluten-free.

Feel free to share your blood test results if you still have the

Luna21 Rookie
Luna21
Posted
  • Author

I like what you said about how my blood test is not confusing, I think doctors should trust blood work more, because I had been before the endoscopy been eating a low gluten diet.

Scott Adams Grand Master
Scott Adams
Posted

The biopsy should never have been done if you were not eating gluten daily for the weeks leading up to it.

Luna21 Rookie
Luna21
Posted
  • Author
On 10/18/2020 at 12:10 PM, Scott Adams said:

The biopsy should never have been done if you were not eating gluten daily for the weeks leading up to it.

Okay, so I found the number but I don’t know what exactly for but it’s this: 

the normal range is 15 units/ml 

mine; 157 units /ml. 

RMJ Mentor
RMJ
Posted

You could have the blood test repeated - if it has gone down on a low gluten diet and your symptoms have improved that would certainly say that gluten is a problem for you.

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

Celiac.com Sponsor (A8-M):


knitty kitty Grand Master
knitty kitty
Posted

Luna, 

Have you had a DNA test to see if you have any of the genes for Celiac?  If you've got Celiac genes, and you improve on a gluten free diet like RMJ said, plus have such high blood test results, you and your doctors may want to accept all that as a Celiac diagnosis.

Damage to the small intestine is on a sliding scale.  The longer you've been exposed to gluten, the worse the damage is.  It's silly for doctors to tell people to do damage to their bodies so the doctors can be sure they made a diagnosis correctly.  

 

 

Scott Adams Grand Master
Scott Adams
Posted
14 hours ago, Luna21 said:

Okay, so I found the number but I don’t know what exactly for but it’s this: 

the normal range is 15 units/ml 

mine; 157 units /ml. 

Does it say what type of test this was? Was it ttg? Also, is the normal range for this test shown? Knowing these would be helpful.

  • 2 months later...
Luna21 Rookie
Luna21
Posted
  • Author

For some reason we don't have the test results, in paper that is; its on the doctors computer and the doctor sent it to the GI doctor. We don't even know what test it was exactly that was elevated but thats what made the GI doctor think it was Celiac. On my next check up I am going ask for it.

Scott Adams Grand Master
Scott Adams
Posted

I would request that your doctor provide you with the results, as they do have them.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748
    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.