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Lab Results Negative. Everything Else Says Positive. Celiac?

possible celiac lab results

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16 replies to this topic

#16 mushroom

 
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Posted 08 April 2013 - 11:56 AM

.  It's possible to have negative results and have post symptoms but still have antibodies?  

 

There are posters on this board who have returned for a six-month checkup with their doctor and still have positive blood tests for antibodies.  While the numbers have usually markedly declined, they are sometimes accused of not following the diet corrrectly because the antibodies are still active.  Doctors often bully them, tossing the refractory sprue diagnosis at them, but we always tell them, as long as the numbers are continuing to go down not to worry.  Even after a year, in some people whose numbers have been very high, the tests are still in the positive range.  Very few people actually have refractory disease; they just heal slower and sometimes they are the super sensitives to gluten who have to be stricter than the rest of us with the diet.  Some have to eliminate all processed foods altogether because the food  tests for gluten free are not sensitive enough to pick up very low levels (under 5ppm) of gluten.  A member who uses the screen name dillettantesteph is one of these.  These people who still have high antibody levels do still have symptoms.  But if you personally ever had autoimmune antibodies (i.e., celiac and not gluten intolerant) you have shed them already through your dietary elimination of gluten.  Research is still ongoing as to how to test someone who is gluten intolerant but not celiac and therefore does not have these antigliadin antibodies;  i.e., to find a marker which characterizes the condition.   But because of your gluten free status you may not have this marker either by now if there were one.  Just a very long-winded way of saying that healing does not take place immediately :P , whether celiac or not, and that even in the absence of antibodies there is still damage for your body's road crew to work on before you become completely whole again.   I am five years gluten free and still living on the knife edge, hoping my  rheumatoid symptoms stay at bay and that I can ditch my Humira totally (I have used it for only two separate months out of the last 18 or so months, last time in November last year.)  While all my joints have recovered I occasionally get flares of that electrical-type exruciating pain in my fingers and toes, now down to every six months or so or perhaps, we can hope, now gone forever. :rolleyes: My rheumatologist in U.S. does not believe in a dietary connection with RA but is at a loss to understand how I can go without treatment for such long periods.  Certainly it could not be because of my diet :blink:

 

I would be totally supportive of you not further poisoning yourself to satisfy some doctor's craving for certainty, so long as you do not need that certainty for yourself, also.  You must look inside yourself for that answer.


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#17 surviormom

 
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Posted 10 April 2013 - 06:18 AM

My results were much the same after 6 months of gluten-free.  Now I know when I eat something I should not by accident, or am weak and think just one bite.  That is why I am here today.  Good luck you will feel better I know.


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein




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