Hidden Stories:
Celiac & MTHFR
PF Anderson, October 31, 2013
for Investing in Abilities Week,
Invisible Disabilities
Sunda...
Celiac Disease Means ...
• Wikipedia: “an
autoimmune
disorder of the
small intestine that
occurs in genetically
predispose...
MTHFR Deficiency
means ...
• "Mutations in the MTHFR gene lead to impaired
function ... of methylenetetrahydrofolate reduct...
Celiac
Symptoms
• How many are listed
here? 84.
• How many of them
did I have? ~60
• ... but not all at the
same time.
htt...
Diagnosis Timeline
• 35 years: Warning signs
• 20 years: Ill (Celiac),
but not diagnosed
• 2 years: Trying to be
gluten fr...
• “You know what the average time is
for a celiac diagnosis? 10 years. 10
friggin’ years.”
• http://glutendude.com/doctor-...
How did diagnosis
happen?
• Celiac:
• Social media, friends, acquaintances
• MTHFR deficiency:
• Subject in a personalized ...
Warning Signs
• anorexia
• bone breaks /
chips / cracks
• chronic fatigue
• different diets
• easy bruising
• infantile ep...
meniere's disease/
balance disorder
migraines
mild obesity
morton's neuroma
mouth sores
mouth ulcers
ovarian cancer
pneumo...
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
• Digestive
Memory: http://www.flickr.com/photos/runra...
Where does it hurt?
• All joints. AND ...
http://commons.wikimedia.org/wiki/
File:SpirellaHOW_TO_ADJUST_-_08_.jpg
Sunday, ...
Where does it hurt, pt. 2
• Pain
• Swelling
• Bleeding
• Ulcers
• Burning
• Dryness
• Thirst
http://commons.wikimedia.org/...
“Tell me where it hurts”
• “Everywhere, Doc!”
http://commons.wikimedia.org/wiki/File:Whites%E2%80%99_Physiological_manikin...
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...
Things I can do now that
I couldn’t before
• Remember
• Walk fast
• Run up stairs
• Can up a storm
• Go to concerts
• Part...
PF Anderson,
pfa@umich.edu
Sunday, May 4, 14
Upcoming SlideShare
Loading in …5
×

Celiac: Hidden Stories, Invisible Disabilities

1,228 views

Published on

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.

Published in: Health & Medicine
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
1,228
On SlideShare
0
From Embeds
0
Number of Embeds
41
Actions
Shares
0
Downloads
3
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

Celiac: Hidden Stories, Invisible Disabilities

  1. 1. Hidden Stories: Celiac & MTHFR PF Anderson, October 31, 2013 for Investing in Abilities Week, Invisible Disabilities Sunday, May 4, 14
  2. 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. 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. 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. 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. 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. 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. 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. 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. 10. My Meds, Then & Now (And the one on the right is for an injury, not a condition.) Sunday, May 4, 14
  11. 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. 12. Where does it hurt? • All joints. AND ... http://commons.wikimedia.org/wiki/ File:SpirellaHOW_TO_ADJUST_-_08_.jpg Sunday, May 4, 14
  13. 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. 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. 15. This really happened Hiya, Mom! Excuse me, what’s your name? Sunday, May 4, 14
  16. 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. 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. 18. PF Anderson, pfa@umich.edu Sunday, May 4, 14

×