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:
    Help Celiac.com:
    eNewsletter
    Donate

Silent Celiac Disease With No Antibodies?


aria

Recommended Posts

aria Newbie

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?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kareng Grand Master

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."

Link to comment
Share on other sites
cyclinglady Grand Master

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.......

Link to comment
Share on other sites
Seeking2012 Contributor

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?

Link to comment
Share on other sites
nvsmom Community Regular

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.

Link to comment
Share on other sites
BlessedMommy Rising Star

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?

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,466
    • Most Online (within 30 mins)
      7,748

    Tlbaked13
    Newest Member
    Tlbaked13
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Tlbaked13! Have you been officially diagnosed with celiac disease? It is well-known that celiac disease can result in peripheral neuropathy but so can diabetes. 
    • shadycharacter
      Lactic acid bacteria start to develop as soon as flour and water are mixed, so I assumed that in a yeast dough with long proofing time there could be some effect of fermentation and gluten break down. 
    • Tlbaked13
      I am COMPLETELY new to this celiac disease however I have had the same feelings and then some with my feet for years now and been diagnosed with peripheral neuropathy myself but they blamed and attempted to treat due from my type 1 diabetes and none of the treatment has helped at all so far so possible from celiac disease? Just sharing MY thoughts on this I've had zero confirmation 
    • Hannah24
      I've not heard of the DNA test I will definitely look into that. And I did not know that the neuropathy was symptoms of vitamin deficiency. I have been trying to get on a good vitamin regimen. Thank you!  
    • Hannah24
      My GI Doctor took blood work and said my Iron levels were actually high. But they took my blood a couple weeks after my infusion so I'm thinking that's why they were showing so high, but they knew I had the infusions. The infusions did help greatly but I am also on an Iron pill that I can instantly notice if I have not taken it for a few days.  Yes, I have read up on that! Thank you so much! I sure that will be fun! Hahaha
×
×
  • Create New...