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

PF Anderson, pfa@umich.edu

Sunday, May 4, 14