Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Own Research
0

5 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Positive Celiac Biopsy = Celiac Disease.

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,549
  • Topics

  • Posts

    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined