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Second Guessing Diagnosis


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#1 Jrg

 
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Posted 15 August 2013 - 06:15 AM

A week ago my Dr called me in for my blood work results. I was severely low on vitamin D, iron & b12. Plus I had a celiacs blood panel done and I came back positive for only 1 of the 4 tests (the deamiated gliadin iga). So off I went to the specialist to schedule my endoscopy. (Also I should note that I have hypothyroidism and have been dealing with that for almost 20 yrs, I'm 26).


Anyways, my normal Dr had me feeling quite confident that I had celiacs, I had all the deficiencies, the other autoimmune disease, most of the physical symptoms, but my specialist Dr left me second guessing if I really do have it just because only 1 of my blood tests came back positive. He seemed to think that unless the ttg tests came back positive, then it probably was a lab error, getting my one positive.


I'm doing the endoscopy in a week & I know that will make it official either way, but I'm feeling pretty defeated. I honestly was hoping for an end all "cure" (aka just go gluten free, etc) to my situation, but now I'm convinced my biopsy will come back negative. Anybody else go through this?
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#2 GottaSki

 
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Posted 15 August 2013 - 08:58 AM

Was this a gasterenterologist that specializes in Celiac Disease? - sadly not all do.

With deficiencies, AI symptoms and a positive DGP I would remove all gluten after the biopsies...regardless of results - then retest the celiac antibodies and nutrients at six months and a year. Sometimes AI symptoms take longer than digestive symptoms to resolve so the blood can show if you are no longer producing antibodies and are absorbing nutrients better.

Hang in there...either way give living completely gluten-free the opportunity to improve your health.

Ps...we do have members that were diagnosed by biopsy with ALL negative antibodies...not everyone produces them and you do produce one very specific to gluten already...I wouldn't wait for the others to become positive.
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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 bartfull

 
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Posted 15 August 2013 - 11:30 AM

Also, make sure they do at least EIGHT samples when they do your biopsy. Some "Doctors" only do two or three, and as the damage is often spotty, they miss the damaged parts.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 nvsmom

 
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Posted 15 August 2013 - 12:13 PM

There are quite a few people around here who were diagnosed using the DGP tests, it seems to catch many celiacs that the tTG misses - the tTG IgA misses up to 25% of celiacs.

 

There are also many who were diagnosed using only the IgG version of tests rather than the Iga versions... doctors seem to doubt those too for some reason.

 

From what I have seen, many doctors want all the stars and moons to align before they will give out a definitive diagnosis... I have no idea why.  :rolleyes:  If the doctor thought your DGP lab result was a fluke, did he order a repeat test? If not, I'm guessing he is one of those reluctant to diagnose doctors.

 

Good luck with the endoscopy.  Keep eating gluten until your testing is done.


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#5 Jrg

 
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Posted 15 August 2013 - 03:01 PM

Thank you everyone! Yes, I'll definitely be chowing down on gluten before my intestinal check! Now that I look back at my labs, my Ttg levels were very low, in the .7-1 so perhaps I just didn't have much gluten in my system? Either way, I feel more at ease with my blood work and will just try and be patient during this last testing phase.


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#6 AlwaysLearning

 
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Posted 15 August 2013 - 03:34 PM

Even if your endoscopy/biopsy comes back negative, I say go gluten free anyway and let your body tell you if gluten is a problem for you. If you do have a problem with it, more than likely, when you go gluten-free, you'll notice lots of other changes in your body that you may not have even realize were troubling you before. I'd trust personal experience more than any test or doctor out there. But great that you're doing things in the proper order!


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