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Silent Celiac Disease With No Antibodies?

aria

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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?

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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?

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