Posted 24 October 2013 - 01:25 PM
Did your daughter have a complete celiac antibody panel or just the tTG?
Do you have a copy of the pathology report from the procedure? The early stages of celiac have cellular changes that are sometimes noted in the report, but are not conclusive for diagnosis.
How many samples were taken? Many doctors do not take enough as damage can be spotty and can not be seen by the doctor except in the most advanced cases.
It is time to remove ALL gluten for at least three months - if her symptoms improve request a retest of both Celiac Panel and nutrients. If symptoms and serology improve perhaps the doctor will review diagnosis.
I do think that a positive antibody test, low nutrient levels and the doctor's observation of possible minor blunting are reason enough to not completely dismiss Celiac Disease.
For now make sure you have written or electronic copies of all blood work along with both the procedural and pathology reports for the endo.
Hang in there
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!
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