Second Guessing Diagnosis
Posted 15 August 2013 - 06:15 AM
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?
Posted 15 August 2013 - 08:58 AM
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.
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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
10/25/13 - MCAS - symptoms plus positive Prostaglandin/N-Methylhistamine - trialing combos of H1, H2 and Mast Cell Stabilizers
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
Celiac.com - Celiac Disease Board Moderator
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.
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!
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. 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.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
Celiac.com - Celiac Disease Board Moderator
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.
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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