Thanks for sharing your experiences and knowledge about this rare disease . My daughter 13 yrs age was diagnosed with similar condition with only complain of asympomatic iron deficiency anemia /Hashimoto Thyroiditis 9 months back . Her haemoglobin was 6 with low Ferritin level in the blood which was not responding adequately with oral iron supplement . Strangely The non specific marker for coeliac disease (Anti Gliadin AB ) was positive but specifc markers ( Anti endomysial /Anti TTG ) were negative . Am not seeing anyone commenting on such findings . Any idea where I can get more information about this . Appreciate if you can share the doctor in Mayo clinic e mail ID that I can discuss the findings with .
Best wishes and pray for your recovery .