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#1 troykm

 
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Posted 19 September 2012 - 01:17 PM

This is just a thought i have been mulling over. Its not scientific by any means but would like opinions.

I have celiac, positive biopsy - negative antibody test. One of my sisters since tested positive to anti body test. My other sister and my mother have both tested negative to antibody test BUT both have the same gene i do (DQ8) and the same symptom profile i do. They are both going to have a biopsy to confirm but it looks like they both have it too.

Now, why would 3 out of 4 test negative to the antibody test? I tried to think what do the 3 of us have in common. Then i realised, all three of us have had our tonsils removed. I know that the tonsils are an integral part of the immune system. Is it possible that not having them can alter the antibody test or affect the immune response?

How many of you have had your tonsils out and then, down the track, tested negative to antibodies for celiac but then had a positive biopsy?

We all had chronic tonsillitis as children that antibiotics did not seem to help and my specialist said there is a link there to celiac.

Thoughts???

Thanks

Troy
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#2 GottaSki

 
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Posted 19 September 2012 - 01:43 PM

Hi Troy!

Tonsils out here. I did have positive antibody tests, BUT they were only weakly or moderately positive when diagnosed while I had severe to total villous atrophy.

My antibody tests were low when compared with damage - did having my tonsils out at age 7 effect the amount of antibodies produced? No idea -- I did learn with hindsight that my inner ear/hearing problems that caused them to remove my tonsils remained until my hearing magically improved at over a year gluten-free.

Interesting thought.

Oh wait...I've got kids with negative antibodies. One with positive biopsy, others that just improved gluten-free without dx -- they all still have their tonsils.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 troykm

 
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Posted 19 September 2012 - 01:55 PM

Hi Troy!

Tonsils out here. I did have positive antibody tests, BUT they were only weakly or moderately positive when diagnosed while I had severe to total villous atrophy.

My antibody tests were low when compared with damage - did having my tonsils out at age 7 effect the amount of antibodies produced? No idea -- I did learn with hindsight that my inner ear/hearing problems that caused them to remove my tonsils remained until my hearing magically improved at over a year gluten-free.

Interesting thought.

Oh wait...I've got kids with negative antibodies. One with positive biopsy, others that just improved gluten-free without dx -- they all still have their tonsils.


Ok maybe my theory was a stretch lol but i want to know why my test was negative but the biopsy was clearly positive. I'm only asking because my specialist wont say 100% its celiac because of the negative test, but is at a loss to explain the positive biopsy and i have the HLA-DQ8 gene. Also, i am responding to the diet so thats a good sign. But after so many years of misdiagnosis i cant get rid of that "what if they have missed something" thought in my head. The specialist said there could be lactose or fructose intolerance at play but freely admitted that both, while causing symptoms, nether cause intestinal damage.
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#4 GottaSki

 
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Posted 19 September 2012 - 02:18 PM

Positive Celiac Biopsy = Celiac Disease.

Glad you are improving gluten-free! Stick with it.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 cavernio

 
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Posted 19 September 2012 - 02:44 PM

An interesting hypothesis. Have you read about other antibodies being reduced due to tonsils being out, either in conjunction with any other illness or just in general? I have my tonsils, and my antibodies were pretty high. I have no idea what my genetics are.
If you are responding to a gluten free diet, you are likely a celiac. If your next endo shows your intestines healing, that's pretty hard evidence you have it.

fwit, when I grilled my gastroenterologist (and then talked to my friend who's in internal medicine), they both said that there's still no proof that the antibodies were reacting to the gluten. It could theoretically be any food.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




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