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Friday, September 08, 2006

From Gluten Sensitivy Primer, page 30

(Sources for this list:
ients/A01-HOME.htm, Univ of Chicago, U of MD, etc)

Abdominal distenstion (children)
Abdominal pain, bloating
Anemia-Folate-Deficiency/Iron Deficiency Pernicious
Arthralgia or Arthropathy
Arthritis - and Rheumatoid Arthritis
Ataxia, primary
Behavioral problems
Carcinoma of oropharynx, esophagus, small bowel
Collagenous sprue
Constipation, chronic
Dermatitis Herpetiformis
Diabetes (Type 1)
Diarrhea, chronic
Down Syndrome
Enteropathy-associated T-cell lymphoma
Epilepsy with occipital calcifications
Failure to thrive (children)
Hepatitis (chronic), with hypertransaminasemia
IBS - Irritable Bowel Syndrome
IgA deficiency
IgA Nephropathy
Kidney disease
Learning difficulties
Liver disease
Low bone mass
Microscopic colitis/collagenous colitis
Miscarriage, repeated
Nerve disease
Pregnancy, adverse affects on
Osteomalacia, osteoporosis recurrent aphthous
Primary biliary cirrhosis
Refractory sprue / Celiac Disease
Short stature (only sometimes)
Sjogren's Syndrome
Skeletal problems
Steatorrhea, occasionally (pale, foul smelling stool)
Stomatitis, recurrent
Tooth enamel defects, tooth discoloration
Turner Syndrome
Thyroid disease (autoimmune), Thyroiditis
Ulcerative jejunoileitis
Williams's Syndrome

List of disorders for which Dr. Ken Fine, MD,, recommends gluten sensitivity stool tests.

Microscopic colitis
Relatives of gluten-sensitive individuals
Chronic diarrhea of unknown origin
Irritable Bowel Syndrome
Gastroesophageal reflux disease
Hepatitis C
Autoimmune liver disease
Other causes of chronic liver disease
Dermatitis herpetiformis
Diabetes mellitus, type 1
Rheumatoid arthritis
Sjogren's Syndrome
Autoimmune thyroid disease
Any autoimmune syndrome
Chronic fatigue
Iron Deficiency
Short stature in children
Down's Syndrome
Mothers of kids with neural tube defects
Female infertility
Peripheral neuropathy
Cerebellar ataxia
Seizure disorders
Psychiatric disorders

Symptom List at (Danna Korn, author and mother of celiac child)

Fatigue, chronic fatigue
Addison's disease
Gastrointestinal distress (gas, bloating, diarrhea, constipation)
Headaches (including migraines)
Mouth sores
Weight loss/gain
Inability to concentrate
Amenorrhea/delayed menstrual cycles
Bone/joint/muscle pain
Dental enamel hypoplasia
Short stature
Tingling numbness in the legs
Abnormal liver test
Autoimmune hepatitis
Chronic abdominal pain
Crohn's disease
Dermatitis herpetiformis
Down Syndrome
Family history of celiac disease
Gallbladder disease
Hyper and hypothyroidism
Total IgA deficiency
Insulin-dependent diabetes (Type 1)
Spontaneous abortions/low birth-weight babies
Iron deficiency
Irritable Bowel Syndrome
Multiple Sclerosis
Non-Hodgkin's Lymphoma
Osteoporosis, osteopenia, osteomalacia
Pancreatic disorders
Pathologic fractures
Peripheral neuropathy
Primary biliary cirrhosis
Recurrent stomatitis
Rheumatoid arthritis
Scherosing cholangitis
Sjogren Syndrome
Systemic lupus
Turner Syndrome
Ulcerative colitis

Symptoms from the Celiac Sprue Association

Abdominal cramping/bloating
Abdominal distention
Appetitie (increased to the point of craving)
Back pain (such as a result of collapsed lumbar vertebrae)
Decreased ability to clot blood (vit K deficient)
Diarrhea (See stools below)
Edema (puffy ankles, hands, etc)
Electrolyte depletion
Energy loss
Feet (reduced fat padding)
Flatus (passing gas)
Gluten ataxia
Mouth sores or cracks in the corners
Muscle cramping (esp in hands and legs)
Night blindness (vit A deficient)
Dry skin
Stools (Loose, dry, small, large, foul smelling, floating, clay/light tan or gray colored, highly rancid, frothy? = specific stool descriptions do not apply to all cases)
Tongue (smooth or geographic - looks like different continents)
Tooth enamel defects
Weight loss

The Patient's Emotional State:
Disinterested in normal activities
Mood changes
Unable to conentrate

Additional condititions:
Iron-deficiency anemia
Bone disease

Symptoms in children:
How is the child developing?
Not Gaining Weight?
Losing Weight?

Under Age 3:
Growth failure
Projectile vomiting
Abdominal bloating/distention

Older Children:
Difficulty concentrating
Personality changes

Other patient compiled lists of symptoms "definitely," "probably, " and "resemble" CD may be found at site index: Celiac Disease research: Assoc Diseases and Disorders: Lists of Diseases and Disorders Assoc with CD

It is helpful when researching a particular condition and its possible relationship to CD or gluten sensitivities to examine the original research where available, remembering that research is FAR from finished, and some areas are not researched at all. , and search "celiac disease and (name of condition)"

Example: celiac disease and depression
Note: Europeans spell celiac "coeliac".

FYI: my menstral cycle has always been regular, despite my obesity. I took birth control for 1 year at the beginning of my 26 yr marriage. 1 kid. I did have PMS. When I went off gluten, my cycle started 2 weeks early, but was pretty much the same thereafter.


New Celiac Friend

Monday, September 04, 2006

I met a woman at our last local support meeting; she'd just been diagnosed. Tonight we went to our neighborhood picnic, and it turns out she's going to be our new neighbor! A celiac sister in my midst. I think we're going to be good friends; at least we'll be able to cook/bake for each other and trust its source! ;-)



Monday, August 28, 2006

1977 - age 16. I notice my friend's skin vs mine, which seems so dry. Fingers crack in dry winter air. DId not make cheerleader the next year (gained weight). How embarrassing.

UT - 1978 - age 17. Moved my junior year-trauma! I eventually make a great new set of friends I still contact to this day. Enjoy active social and school life. Happy. Quit biting nails because of peer pressure.

1979 - age 18, 150 lbs-ish? and 5' 3 1/2". Go on first fad diet: the 10-day liquid protein fast. FEEL WONDERFUL: clear-minded and energetic. Go off fast, and gain back 20 lbs+. Go to college and gain "freshman 15". Found college stressful and reacted to stress by eating whatever I wanted: cheese tortillas and Blimpie's Italian sandwiches and ate a sandwich a day! Almost fall asleep at the wheel driving a meer 75 miles between school and home. I'm tired before my peers and am always the first to go to bed. College not a good fit for me, so I quit and go to work to earn money for next school.

1980 - age 19, 180 lbs. Signed up for American Weight Loss Systems - 500 cals/day for 2 mos. + counseling (I remember learning visualization). Jazzercized and lost 40 lbs. Some hay fever. Met future husband.

1981 - age 20. 140 lbs. Got legs waxed for wedding and they broke out in miserable itchy spots. Got married and moved to a nearby city. Stopped Jazzercize. Husband noticed I'm constipated. Huh? I didn't know any different. I used the birth control Pill for one year but felt puffy and took myself off. Use the "rhythm method" thereafter, and later "the kid" was birth control!

1982 - age 21. Gaining weight pretty quickly. Working and eating at fast food restaurants for lunch (loved Wendy's taco salads with hot sauce and sometimes some burgers). Making "good wife" dinners for breakfast and other odd times for husband on shift work: stuffed trout, pork chops, homemade lasagna. Also trying wine coolers now that I'm "legal" -- funny, I could get married at 20, but not drink! Doc tells me I'm obese and I'm startled by the thought! Me? Start my passion for reading about nutrition. Learn about lecithin supplement, whole grains, fruits, veggies and lean meats.

1983 - age 22. Tagged a "gagger" at dentist. Upper wisdom teeth extracted. I ask about white specks on my front tooth: my mom got too much fluoride during my inutero development at some point. Burn my leg, the burn gets infected and doesn't heal for over 9 mos! Dermatologist checks for diabetes (negative). Burn turns gangrene til derm. uses a wet cast, which is the trick I've needed. (No air? - I dunno). "Friend A" shows me her fridge full of moldy food, don't ask why, and I can't stop gagging and laughing. I gag so easy!

1985 - Really outgoing personality, 5 employers want me to work for them, but I'm sometimes feeling "less than" because I just can't think. Fuzzy-mind. Social phobia shows up occasionally.

DC -1986 - age 25. Get walking pneumonia. Took over 6 mos. to get rid of nagging cough.

LA -1987 - age 26. Giardia or some kind of food poisoning after eating sm. jar of artichoke hearts (all I could figure). I almost DIED on the "terlet" with stomach ache and extreme pain. We'd just moved, felt overwhelmed again, should have found a doc but didn't know where to start; just let it pass. Depression. Sent away for Ralph Nader's book/report called EATING CLEAN. Paradigm is shifting to organic foods. Move again. Stressed out again and put it on the back burner.

LV - 1988 - age 27. 227 lbs. Pregnant! Don't remember last period to know the due date (memory). OB is 1st doc in years. Complained to him I was so tired and needed 2 hr naps to get thru day. No tests. Occasional indigestion. Husband can't sleep cause of my snoring (I was a light sleeper and felt awake most of the night, so I didn't believe him; sleuth that he is, taped the evidence! I sounded like a man!) Four mos. of morning sickness - doc says try eating Saltines. Still sick. Don't eat much. Got the flu and bam! the morning sickness never came back! Never figured out that one.

1989 - age 28. 263 lbs. Abnormal PKU test (Down's baby?), then 2nd test I had normal PKU. Extremely bad ankle edema last month of pregnancy. Hemorrhoids. Baby girl arrives via c-section. Can't remember if baby was a bit jaundiced and had to use lights. Her white blood cell count was too low for her to come home when I was discharged 2 days before. I'm dazed and confused and just along for ride, doing what doctors tell me to. They feed her formula while there, but I breastfeed when she gets home. After a while, my cracked nipples don't heal. Hurts to feed! La Leche couldn't help me. Supplement with formula. Wants to eat every 2 hrs. Baby/toddler is clingy, colicky, projectile vomits a lot (and in the middle of night when she's bawling ... what a mess!). I try giving her soy formula to supplement me, but she projectile vomits that also. Sleepless and tired mama.

Also, HIGH ANXIETY. Eczema rash and finger cracks persist for 7 yrs. Dermatologist gives me topical steroid used sparingly at night with gloves. I remember he did some allergy tests and told me that I'm sensitive to wheat? Did he say that? I only remember that he said I was allergic to rubber and tomatoes. Don't remember the test. I love rubberstamps and tomatoes and don't give up either! I never lost any pregnancy weight (36 lbs), despite peeing a lot of my fluid/edema.

LV - 1994 - age 33. Moving. Sit on driveway potting many plants for gifts and I couldn't get up. Husband needs to give me a hand up. I have trouble getting out of chairs and walking. Eases with warming up/walking. Chronic intermittent pain ever since. Walk as if I'm 80 yrs old. Some days worse than others, and worse after exercise.

DC - 1995 - age 34. Cracked bottom front tooth on I don't remember what. Prematurely graying. Still not sleeping. Feet painful doing housework all day. Wear tennies and it gets better. Start of new symptom: heart attack? Bend over to give daughter a bath, and when I stand up I feel like I can't catch my breath, like a Mack truck sitting on my chest. Freaks me out! Random doc gives me no answers.

1996 - age 35. Craved SALT (couldn't get enough), and started chewing ice (2nd pica symptom?). Saw a 2nd doc for fatigue and get diagnosed with hypothyroidism. Start on .05 mcg Synthroid. I try the homemade salsa I'd made pre-dx, and had to throw it away cause it was too salty. Not eating many sunflower seeds. Salt craving subsides after meds. Edema in left leg from sitting too long scrapbooking and stamping. Seemed alleviated with exercize/walking. Too busy being room mom, Brownie leader, and party consultant for stamp company. Husband travels and is gone for weeks on end. Life seems to be getting harder to keep up with and I'm not joyful. Mice in house, squirrels in attic, dogs chasing p.o'ed joggers, out-of-state company coming, hostessing bunco, and I'm falling down at odd times (missing a step or a sidewalk) - 3 x now. Cracked another tooth on a random unexplained piece of plastic in a bag of jelly beans. Brachs said they'd even pay for my dental bill, but I was too fuzzy headed to finish the task. Presented at a convention and after lunch (sandwich) I couldn't retrieve the words I needed/stumbled for thoughts. Brain wanted to freeze. Embarrassing! I found a chewable Vit C tablet, and would eat a whole roll ... = diarrhea.

1996 - I befriend another room mom who tells me she's trying to find reason for daughter's symptoms (I couldn't see any). She tells me about "leaky gut," I read the book The 20-day Rejuvenation Diet by Jeffrey Bland. I learn about transfats and hydrogenated oils, and decide eating sugar and wheat free is a good thing. Easier said than done: my option was going vegetarian except I'd found some rice crackers at Costco. It was pretty hard (family was totally NOT on board with this radical idea!), but I walked the dogs and on the treadmill, and lost 20 lbs. in 2 mos. I FEEL AWESOME!!

AK - 1997 - age 37. Moved again, was stressed again. Went off wheat and sugar free diet. Depression. Get thyroid checked with new doc and mention my "heart attacks". He says it's probably GERD. What? But sometimes my stomach is EMPTY! He says it's just the size of my gut. Feel out of it/woozy and out of body sometimes. I break down crying in his office. He writes an Rx for Prozac. He xrays my ankle cause of edema. Nothing. Eating sunflower seeds all the time. Manage to redo a kitchen even though I can't think straight. Room mom again. Daughter is having trouble with directions in school. Give speech to gym full of people and can't put together sentences again. Embarrassed again. Self-esteem is suffering - despite good self-esteem! Want to hibernate in the winter, and feel like the Energizer bunny with sunlight in the summer. Try light therapy without success in winter. Nightblindness. Get 1st pair of glasses. Seek therapy.

UT - 2000 - age 39. 260 lbs. Moved again. Exzema still flairs. Go to bed with Vaseline, gloves and socks. Quite a funny pic brewing here: socks, gloves, eyemask & earplugs?! Still eating sunflower seeds. Now alternating between seeds and ice-cream. Still chewing ice. Some days I'd ONLY eat seeds and ice-cream = diarrhea (didn't know about fat malabsorption). Doc tells me that chewing ice is a symptom of vitamin deficiency and leaves it at that! I look back now and onder why she didn't test my "vitamin deficiency!" I stop McEating McDonalds cause it gives me gas. No McBiggee -- but I was often too tired to cook. Doc gives me iron for low hemoglobin (but it's still within range). It doesn't work except to constipate me, so I quit.

2001 - age 40. 255-262 lbs. Go off Prozac. Got the flu: couldn't make the "terlet" in time. Ew. Daughter dx with ADD-Inattentive. I read Dr. Daniel Amen's book The 6 Types of ADD and hope this is the answer to our struggles. I figure the apple doesn't fall far from the tree, and diagnose myself from symptoms checklist on his website Note to doc: complained of foggy head/thinking (not helped with Synthroid or Prozac), my personality does not like change, have trouble changing tasks, low energy, irritable, low self-esteem, memory problems/forgetfulness. Take daughter to psychiatrist. He prescribes her Adderall, me Provigil (used for narcolepsy) to stay awake. Helpful, but heart feels tight when taken daily. Decide to slow it down and take it maybe 1-2x/week just when I need a boost. Synthroid 75 mcg. BP 126/88, pulse 55.

Start attending C.H.A.D.D. meetings. Another parent asked if diet could help ADD - the leader emphatically said, "NO!!! There is no evidence/trials that diet makes a difference; drugs are the only proven method that works." I naively believe her. Daughter has more energy with Adderall; can focus better, but no change in course work or disposition (grouchy). I struggle to retrain her habits. She likes that the drug helps curb her appetite and with her in dance class, she loses 15 lbs. She's oppositional and defiant. I learn to pick my battles. Therapy/counseling is slow, but feel it's positive, so continue.

2002 - age 41. 247 lbs. Start walking regularly. Complained to doc that I've been fatigued for over a year. Checked again for diabetes or anemia. Mention that my mother says I was snoring during a nap in front of the FR fireplace (my feet are always cold). I said I felt tired even when I was on antidepressants in AK. Chewing ice more now. Asked for xray or something to find cause of pain in left hip. Xray said no osteoarthritis. Ask for dexa scan to check for osteoporosis (remember when I was 12 and how I've been eating lots of milk and dairy to prevent it). She says no, I'm too young. Insurance probably wouldn't pay. Now I'm experiencing increasingly more heart palpitations for last 6 months, most noticeably at night in bed. Am I trying to make myself sick or what? Holter monitor confirms I'm NOT crazy, I am indeed having palpitations. Doc prescribes magnesium and potassium. Nothing changes. Synthroid 100 mcg. Cholesterol 187. Triglycerides 110. HDL 35, LDL 130. Ratio: 5.3 (should be less than 4.5).

DC - 2004 - age 43. Moving again. Night clenching takes me to emer. clinic for pain. Think the pain will subside once I get established. Get new glasses with stronger prescription.

2005 - Work part-time for orthodontist; he makes me a night guard for bruxism. Still have nagging untreated depression I want to "exercise and eat right" away. Hip pain. Get a personal trainer to help build muscle/ lose weight. Start losing hair instead (afraid I'll go bald like paternal grandma). HAVE to use public facilities when shopping, as I can't wait to get home and use personal "terlet". Not diarrhea, but looser and fatty stools. Smelly. Still chewing lots of ice - everyone's commenting on it. I was thinking it was because I liked the coolness in my mouth. Dentist said not to, it can crack my teeth - I have too many metal crowns, so I don't worry about it. I'm eating "healthy": Kashi for b-fast, turkey on whole wheat for lunch, salad + protein for dinner (unless I'd make my "easy" spaghetti dinner). I'm "going" after each meal now or 3x/day. I think that's a good thing; esp. proud to tell my husband who still thinks I'm constipated from 20 years ago. It's all that fiber dear! I get glasses and the optometrist tells me how much worse my prescription strength has changed since last year. He was so surprised. A couple of times I've noticed I can't swallow my just gets stuck in my throat.

OK - 2005 - age 44. Move again in August. Get thyroid tested Nov. Synthroid up to .125 mcg. Noticed while going to sleep that I couldn't swallow my saliva; it gets stuck mid swallow and I can't finish. Weird. This has happened about 4 or 5 times the past two years.

2006 - age 44.10. Nagging depression. Mom visits for holidays and can't get over how much I just want to sit. This is not the daughter she knows. I go back to doc for thyroid medication blood check. I asked for iron test because I was so fatigued. My hemoglobin came back low but within range. It was the full iron panel + serum ferritin that drew an alert. He recommended I get a colonscopy to check for internal bleeding or cancer. I google anemia and find reason for doc to also include an endoscopy to make my procedure a "twofer" -- Taking the pills to poo was the worst part of the whole thing. You sleep through it and I never felt any residual pain. Anyway, the colonscopy was fine. The endoscopy revealed that I had something called "Celiac Disease." Well that's a fine "how dya do!" My emotions ran around and around. I just hate it when you're still in shock about getting the diagnosis and people start saying, "It's not so bad - at least you know now." True as that may be, I guess I just didn't know what the repercussions were and that was unnerving.

Another doctor checked my Vit D level (21, which is the lower end of the reference range), so he presribed me 50,000iu of vit D daily for 8 days and then 1x/month for a year. Osteopenia dx.

I wish the doc would have checked all my fat soluble vitamins. Just to know how well I'd be absorbing nutrients in the future.

More later.



Sunday, August 27, 2006

Here's mine:
Canada. 1961-born. Mom says I'm pretty normal as a baby (she's a first time mom at 17). As a kid I remember sleepwalking a few times, I was irritable, and had extreme anxiety: I sucked my thumb and pulled my hair between my fingers to relieve anxiety. It felt good to run a knotted piece of hair through the webbed part of my fingers particularly. I had a tonsillectomy, lots of fillings, canker sores often, bit my nails, had an annual bout of laryngitis for over 10 yrs (and still get it occasionally). I was a picky eater, never ate eggs cause they'd make me gag (smell and taste) unless they were in bread or cake! I didn't like meat, so I'd sit at the table with an uneaten pork chop for hours rather than stuff it down my throat. Canned peas weren't too appetizing either! I was an active kid who got into trouble from being outside with a bunch of kids; climbed trees, played kick the can, swam in lakes, ice-skated, played with dolls and played board games in the garage (when we had one)! I always wanted to be teacher's pet, and liked that I was picked first in gym sports. The latter part of elem school I enjoyed extracurricular track and field and gymnastics. In middle school I played extracurricular basketball. By high school I was a cheerleader and having a blast socially. I started gaining weight around age 11, now considered a bit heavy. Between all these years, we'd moved several times.

CO - 1973, age 12. 5' 2". Start "cycle". By early teen years I was feeling depressed and unattached to my parents. Dad is alcoholic and I attribute feelings to the chaotic lifestyle. I remember learning about osteoporosis and being glad I was such a good milk drinker and vowed to always keep dairy a good part of my diet. My family dog was always there for a hug. That's why I love dogs - got me through a lot of shed tears. Around this time I decided to stop thumbsucking/pulling my hair. Gaining weight.

1975 - age 14. A friend introduced sunflower seeds and we'd hang and spit shells for hours during the summer. (Is this the start of ruining my thyroid with iodine? Or is this my innate way to get the salt I'm craving, ie a Pica symptom?) I walk 25 miles in a fun walk to raise $ for charity. Feel strong and athletic.

More later.


Learning to Walk Again

Sunday, August 27, 2006

Well, I've been going easy on my body the past six or seven months since my celiac dis-ease diagnosis. I used to be out there walking early in the morning and I even used to have a personal trainer for a couple of months. I'd feel "energized" for maybe an hour or two max. Then I felt like anxiety was creeping back in and work all day on addrenaline or something. I do have to say that it was WONDERFUL for making my joints more fluid, so THAT was great. (Since stopping walking, I'm so stiff! I hate that!)

After my diagnosis I thought for sure the pain I've had in my left hip since "Leaving Las Vegas" 13 years ago was also related. What happened is that I sat on the driveway pavement for over 4 hours potting plants and wrapping them in moving paper to give away as gifts to my cherished friends. Well, I couldn't get up; needed the aid of my hubby (WONDERFUL guy; just love him). Then I couldn't walk for the pain!!!! This was not good timing. When we moved to VA, the house had all hardwood floors, so I'd be pounding those floors sans shoes - and man, would my feet hurt, esp. in the a.m. I started wearing tennies and that helped. Anyway, I still needed help getting out of chairs for a long time. Then I'd have to "warm up" ... well, to make a long story short, it prevents me from a full range of activities.

Since coming out of my depression because I'm finally ABSORBING all that good food I've been treating myself to, I've been a better advocate for my health (esp now that I don't trust doctors to know everything anymore=health care should be proactive and a team effort!). The point I'm trying to get at is that I had the energy to go to the doctor's and ask AGAIN (cause I've asked at least 4 docs thru the years) "what's up with my hip?" He sent me to get an MRI and I hope to get results this week (last week he was out in court getting a divorce I think!) Anyhew - think it's very sciatic related. I just hope it's still treatable after all these years of nontreatment.

I exacerbated the inflammation on the treadmill last week, trying to burn more calories by putting the incline on a 9. I paid for that mistake. No treadmill for a week!

This week I've walked the dogs, once, then twice around our little neighborhood 3 days, then yesterday I used the treadmill at an embarrassingly low speed of 2.5mph for 30 minutes and used the stationary bike for another 15. I still sweat. And more importantly, I'll go back because I'm not in pain!

This is huge for me. I used to feel so bad, I couldn't muster the vigor to do THAT and daily routines. I'm pleased.


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