Hidden Stories: Celiac & MTHFRPF Anderson, October 31, 2013for Investing in Abilities Week,
Invisible Disabilities
Sunday, May 4, 14
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.pngSunday, May 4, 14
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
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
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
• “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
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
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
meniere's disease/balance disorder
migrainesmild obesity
morton's neuromamouth sores mouth ulcers
ovarian cancerpneumoniaprediabetic
rosaceasciatica
severe chronic idiopathic anemia
acneallergiesamnesia
atrial fibrillationbad hips
bad kneesbrain cancerdepression
ear infectionsgeographic tongue GERD/acid reflux
hearing lossheart murmur
hypotensionidiopathic anaphylaxis
longterm carbon monoxide poisoning
severe osteoporosis
sinus infectionsskin infectionslow clottingstrep carrier
stress ventricular tachycardiavitamin &
mineral deficiencies - Ca/
D/Fe/Zn/Mg/Eweight gain weight loss
HYPOTHESES
PLUS SURGERIESSunday, May 4, 14
My Meds, Then & Now
(And the one on the right is for an injury, not a condition.)
Sunday, May 4, 14
FAQ: What happens if ...
• Cognitive losses
• Fatigue
• Pain
• Hives
• DigestiveMemory: 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=ZKLnhuzh9uYSunday, May 4, 14
Where does it hurt?
• All joints. AND ...
http://commons.wikimedia.org/wiki/File:SpirellaHOW_TO_ADJUST_-_08_.jpg
Sunday, May 4, 14
Where does it hurt, pt. 2• Pain
• Swelling
• Bleeding
• Ulcers
• Burning
• Dryness
• Thirst
http://commons.wikimedia.org/wiki/File:Anatomie_bouche.jpghttp://commons.wikimedia.org/wiki/
File:Leonardo_da_vinci,_Study_on_the_proportions_of_head_and_eyes.jpg
Sunday, May 4, 14
“Tell me where it hurts”
• “Everywhere, Doc!”
http://commons.wikimedia.org/wiki/File:Whites%E2%80%99_Physiological_manikin..JPGSunday, May 4, 14
This really happened
Hiya, Mom!
Excuse me, what’s
your name?
Sunday, May 4, 14
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
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