Celiac: Hidden Stories, Invisible Disabilities

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Presented at Investing in Abilities Week, October 31, 2013. My personal story of struggling to find a diagnosis, that turned out to be a combination of two conditions.

Presented at Investing in Abilities Week, October 31, 2013. My personal story of struggling to find a diagnosis, that turned out to be a combination of two conditions.

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  • 1. Hidden Stories: Celiac & MTHFR PF Anderson, October 31, 2013 for Investing in Abilities Week, Invisible Disabilities Sunday, May 4, 14
  • 2. Celiac Disease Means ... • Wikipedia: “an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward.” http://commons.wikimedia.org/wiki/File:NSRW_Rye_and_other_Grains.png Sunday, May 4, 14
  • 3. MTHFR Deficiency means ... • "Mutations in the MTHFR gene lead to impaired function ... of methylenetetrahydrofolate reductase. Deficiency of this enzyme can cause moderately elevated levels of homocysteine in the plasma... Raised homocysteine levels may be associated with an increased risk of premature heart disease, thromboembolic disease, preeclampsia and stroke. " (NCBI, Laura Dean, 2012) Sunday, May 4, 14
  • 4. Celiac Symptoms • How many are listed here? 84. • How many of them did I have? ~60 • ... but not all at the same time. http://glutendude.com/celiac/celiac-disease-symptoms/ Sunday, May 4, 14
  • 5. Diagnosis Timeline • 35 years: Warning signs • 20 years: Ill (Celiac), but not diagnosed • 2 years: Trying to be gluten free • 1 year: Celiac diagnosis, sort of, and MTHFR!! Sunday, May 4, 14
  • 6. • “You know what the average time is for a celiac diagnosis? 10 years. 10 friggin’ years.” • http://glutendude.com/doctor- horror-stories/ Sunday, May 4, 14
  • 7. How did diagnosis happen? • Celiac: • Social media, friends, acquaintances • MTHFR deficiency: • Subject in a personalized genomics study • Volunteered to verify celiac risk Sunday, May 4, 14
  • 8. Warning Signs • anorexia • bone breaks / chips / cracks • chronic fatigue • different diets • easy bruising • infantile epilepsy • mild anxiety • mild depression • miscarriages • "phytate bloat" • slow healing • weak immune system (catch every little thing that comes by!) Sunday, May 4, 14
  • 9. meniere's disease/ balance disorder migraines mild obesity morton's neuroma mouth sores mouth ulcers ovarian cancer pneumonia prediabetic rosacea sciatica severe chronic idiopathic anemia acne allergies amnesia atrial fibrillation bad hips bad knees brain cancer depression ear infections geographic tongue GERD/acid reflux hearing loss heart murmur hypotension idiopathic anaphylaxis longterm carbon monoxide poisoning severe osteoporosis sinus infections skin infection slow clotting strep carrier stress ventricular tachycardia vitamin & mineral deficiencies - Ca/ D/Fe/Zn/Mg/E weight gain weight loss HYPOTHESES PLUS SURGERIES Sunday, May 4, 14
  • 10. My Meds, Then & Now (And the one on the right is for an injury, not a condition.) Sunday, May 4, 14
  • 11. FAQ: What happens if ... • Cognitive losses • Fatigue • Pain • Hives • Digestive Memory: http://www.flickr.com/photos/runran/2462799975/ Posture: http://commons.wikimedia.org/wiki/File:%22How_Does_Your_POSTURE_Line_Up%22_-_NARA_-_514534.jpg Tell me where it hurts: http://www.flickr.com/photos/bbluesman/4387732214/ Girls Don’t Poop PooPourri.com: http://www.youtube.com/watch?v=ZKLnhuzh9uY Sunday, May 4, 14
  • 12. Where does it hurt? • All joints. AND ... http://commons.wikimedia.org/wiki/ File:SpirellaHOW_TO_ADJUST_-_08_.jpg Sunday, May 4, 14
  • 13. Where does it hurt, pt. 2 • Pain • Swelling • Bleeding • Ulcers • Burning • Dryness • Thirst http://commons.wikimedia.org/wiki/File:Anatomie_bouche.jpg http://commons.wikimedia.org/wiki/ File:Leonardo_da_vinci,_Study_on_the_proportions_of_head_and_eyes.jpg Sunday, May 4, 14
  • 14. “Tell me where it hurts” • “Everywhere, Doc!” http://commons.wikimedia.org/wiki/File:Whites%E2%80%99_Physiological_manikin..JPG Sunday, May 4, 14
  • 15. This really happened Hiya, Mom! Excuse me, what’s your name? Sunday, May 4, 14
  • 16. Things I can’t do • No doggie kisses?! (Finding gluten-free generic meds is painful, too.) Church is kind of different now Sunday, May 4, 14
  • 17. Things I can do now that I couldn’t before • Remember • Walk fast • Run up stairs • Can up a storm • Go to concerts • Party • Explore the neighborhood Sunday, May 4, 14
  • 18. PF Anderson, pfa@umich.edu Sunday, May 4, 14