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. trents
      - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers?
    2. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger...
    3. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide. Both linked to cancers. Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers. A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor. Sourdough...
    4. jenniber
      - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    5. RMJ
      - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means. However, the way the result is presented does look like it is below the limit of what their test can measure, so that is good.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,117
    • Most Online (within 30 mins)
      7,748
    rubyterrapin
    Newest Member
    rubyterrapin
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Blood Test for Celiac wheat type matters?

      By trents · Posted

      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      Celiac support is hard to find

      By jenniber · Posted

      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • 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.