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

Silent Celiac Disease With No Antibodies?

aria

Recommended Posts

aria Newbie
aria
Posted

My twin sister was diagnosed with a severe form of celiac disease so I got tested an year ago showing no symptoms at all!My antibodies were totally negative (contrary to my sis who showed highly elevated antibodies) but my endoscopy showed patchy villous atrophy!I was told to go gluten free so I did for 7 months, nothing changed in my health so now once in a while I eat gluten (even a beer) and I show no problem. Is it possible I was misdiagnosed?Can a silent celiac become more sensitive on a strict gluten free diet?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

My twin sister was diagnosed with a severe form of celiac disease so I got tested an year ago showing no symptoms at all!My antibodies were totally negative (contrary to my sis who showed highly elevated antibodies) but my endoscopy showed patchy villous atrophy!I was told to go gluten free so I did for 7 months, nothing changed in my health so now once in a while I eat gluten (even a beer) and I show no problem. Is it possible I was misdiagnosed?Can a silent celiac become more sensitive on a strict gluten free diet?

 

 

 

Open Original Shared Link

 

 

"Is it possible to have a negative blood test, but a positive biopsy?

While rare, it is possible to have a negative blood test and still have celiac disease. tTG sensitivity is approximately 98%, which means that 2% of all celiacs may have a normal tTG level. Sometimes tTG antibodies are not produced enough to show up in the blood stream and can only be detected in the intestinal mucosa by special means.

IgA deficiency is a reason why you might have a negative blood test, but a positive biopsy.

Further medical evaluation is important for anyone still experiencing symptoms in order to establish the diagnosis or to rule out celiac disease as a part of establishing another diagnosis. In some cases, celiac disease is the wrong diagnosis as such conditions as Crohn’s Disease and food protein allergy Open Original Shared Link."

cyclinglady Grand Master
cyclinglady
Posted

Hummm.....my only symptom was anemia that had been occurring on and off for years. I just went in for a routine colonoscopy (ya get those when you are over 50) and the doctor suspected celiac disease because of the anemia which other doctors attributed to heavy periods all my life. At the time I was tested, my antibodies were barely positive but I had severe damage to my villi.

No biggie, I thought. Then I got two fractures in my back DOING NOTHING three months after my diagnosis. Osteopenia and osteoporosis!

Not all symptoms are visible like bad bones.

So, keep drinking beer, and you never know what problem you might develop later on....bone damage, cancer, another autoimmune disorder like diabetes, lupus, the list goes on!

If you really think it is not gluten, then you need to find out what is damaging your intestines because that is not normal! But based on the fact your twin sister has celiac disease.......

Seeking2012 Contributor
Seeking2012
Posted

My twin sister was diagnosed with a severe form of celiac disease so I got tested an year ago showing no symptoms at all!My antibodies were totally negative (contrary to my sis who showed highly elevated antibodies) but my endoscopy showed patchy villous atrophy!I was told to go gluten free so I did for 7 months, nothing changed in my health so now once in a while I eat gluten (even a beer) and I show no problem. Is it possible I was misdiagnosed?Can a silent celiac become more sensitive on a strict gluten free diet?

 

What do you mean by "patchy" exactly?

nvsmom Community Regular
nvsmom
Posted

What do you mean by "patchy" exactly?

Celiac damage is generally no uniform (meaning the same all over). Generally there are patches of damage, some are more damaged than others, and there can be a lot of undamaged areas.  The surface area of the small intestine is roughly the size of a tennis court, so you can imagine that it is not hard to miss the villi damage during an endoscopic biopsy.

BlessedMommy Rising Star
BlessedMommy
Posted

OP, I noticed that you mentioned in your signature that your symptoms were chronic fatigue and decreased cognitive function. I know those may be more subjective than other symptoms, but have you noticed improvement in those areas since going gluten free?

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. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    2. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    3. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    4. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
    5. cristiana
      - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott. Have manufacturers ever said why that should be the case?
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,440
    • Most Online (within 30 mins)
      7,748
    Lillian Steele
    Newest Member
    Lillian Steele
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.