Saturday, March 27, 2010
Peeking a boo: I discovered a new disease ... ever hear the old saying, "Grains = pains?" Maybe it should have been "Starches = pains." (For IBS, Crohn's, arthritis, colitis ...)
This is a misty dusky walk I took in February in the Flatlands of America. I just purchased a hand knitted cap w/a nice, warm liner. What I like about it, besides warmth, is the sm. baseball hat-like bill which protects my face from the elements. The matching gloves are mittens; the type you can pull back to reveal fingers, which is helpful for picking up dog mess. The only thing I'd change would be to line the thumbs as well as the fingers/mitten part. My thumbs get cold. I've been looking for the perfect hat/mittens all season and this is just too boring to talk so much about, so I'll stop. LOL. About this disease ... walk with me as I tell you the story about a friend of mine.
She's busy and energetic: go go go this woman. For unknown reasons to me, as a child she had multiple major surgeries on her legs, ankle bones, and hips to correct issues. She was in casts for, if you add it all up, years. She LOVES to cook, bake, knit, nest her home, and shop for her family & grandkids. In fact, she's a Super Shopper, and when I want to know where to find something in town, I call HER. She reads me recipes from magazines and goes on and on like I care (*sigh* all gluten & sugar). They sound good of course, but what I enjoy most is her joie de vivre. She wants to smoke mary-jane for her 60th birthday ... and laugh and laugh, which she already does, so I can't imagine. I'm gonna give her a name for the story: Mary Jane. :0)
When I first met her, she’d recently had some skin cancer removed from her face. She has occasional gut issues (gastroparesis). She's been tested up and down by this and that doctors, including a gastroenterologist. I first met her after my own CD diagnosis four yrs ago, and had to ask if she'd been tested for celiac. She only says that she's been tested for 'everything' (so vague & I get frustrated because I can be detail-oriented), and she'd even tried gluten-free for six months. No relief. Knowing her the way I do now, how she bakes and cooks, I think she was shutting me up, but I'll proceed.
She's complained of her lower back hurting, she can't sleep, she’s got carpal tunnel from knitting and general over use, but she keeps on knitting cause she loves it (so talented). She can’t ride in their sports car anymore as it’s too low. She takes antibiotics to relieve her gut pains and occasional UTIs. Sometimes she’s tired cause she’s borderline anemic. She’s been to doctors who suggest surgery for the carpal tunnel, and she’s not diving into that, thank goodness. I find all this out after she finally DOES get her vitamin D test I urged her to have (low at 24/1.3 cause it’s by Quest = 18.5) and celiac panel (negative). Hmm. Re: her celiac panel, her IGA is HIGH. I poke around the internet and find this to be associated with another autoimmune disease, Ankylosing Spondylitis (AS) or Reactive Arthritis. Your IGA represents the integrity of the mucosal lining. Some patients with celiac disease have very low IGA which can throw off the other celiac blood panel tests, that’s why it’s important to have a Panel of tests. What’s interesting is that her doctor has missed this clue, and has said nothing. Not ME :).
The reason the antibiotics relieve her pain is because AS is associated or triggered by the Klebsiella Pneumoniae bacteria. (I suggested probiotics, but no, she's slow to research things like this preferring to do what she likes to do). Like celiac disease, it is associated with specific genes; in this case, people are tested for HLA-B27. Most patients have the gene, some do not. Like celiac, science is still researching genetic associations. And like celiac, in some people the gene lay dormant until a trigger: chronic or sudden stress, virus, pregnancy, or surgery. Eye inflammation, or iritis, is also an associated symptom. This is an arthritic family disease aka “bamboo spine” or “poker spine” because the vertebrae slowly fuse together. It is EXTREMELY painful and debilitating, but women may have milder symptoms. You NEED to be active like Mary Jane as part of therapy. If I were to be happy to have celiac, I am after researching this disease. More men than women have it, and symptoms vary from person to person (like celiac). Though not mainstream, there are people who are taking their lives into their own hands and trying dietary means to control symptoms: a starch free diet or The London Diet. The bad bacteria feed on undigested starches and thus the abdominal/UTI pain Mary Jane felt. Patients often feel better on the fourth day starch free because that’s how long it takes to process the food. Think about when you have to rotate your food after food allergy testing– it’s every fourth day. Mary Jane’s bad bacteria multiplied as she ate her own good cooking & baking. Patients report different foods affect them differently, but the London diet is a start.
How’d she take my information you might ask? Well, she’s not running to the doctor for a diagnosis – too overwhelming I’m sure; she feels okay enough so she’s in denial right now. She also admitted she never tried gluten-free back when I’d asked her about it. I knew it. LOL. When the going gets tough, Mary Jane might need to move to California* where medical mary-jane might help ease her pain in a legal way.
(As you know, I’m trying to diagnose DH with an autoimmune condition; maybe it's this one. :P Like Mary-Jane, he attributes his symptoms to other things and won’t get tested. … as he had another sciatica attack and had to go to the chiropractor. Then his knee stoved up and he got some prednisone to help and it did. He has a history of eye inflammation (though initiated by an accidental tree branch trauma). He does not have GI issues, though. I give him that. ;-)) I would like to know if gluten-free diet makes a difference say for a likely leaky gut(?), or if it’s simply a low-starch & bacteria thing. Cleaning up the gut environment is the crux of immunity though. Out out bad bacteria!
Do you have arthritis and IBS, Crohn's, Colitis? Learn more about this:
Elevated ESR & CRP, anemia, negative RA factor, X-ray, HLA-B27 gene test.
More details and diagnosis stories on this site: bit.ly/ASGuidebook
A helpful blog here: bit.ly/MyASblog
NPR interview: The Human Gut is a Real Melting Pot: bit.ly/NPRGut (18mins)
Diet: bit.ly/bcjZuc (gluten-free of course) :)
Niacin keeps me warm on my walks, too. Look! It's my dad's "bill"! :P
(lil camera, big mitts = misty pic- lol)
PS: I guess if it were me? I'd appreciate the info. If someone knew and cared enough to sit me down and talk to me about celiac symptoms and such, I'd have looked into it. That's why I write about it all the time. You never know who is reading and who'll you'll reach with your words.
Something else confuses me re: the prescribed diet (London or starch free). From reading about probiotics, it's known that sugar defeats the purpose of the probiotic - it feeds bad bacteria and therefore reduces immunity (see previous blog posts about bacteria etc). The starch free diet does include sugar. Hmm. Why doesn't that matter?
Edit (3-30) Oh, I get it! this diet is like the Specific Carbohydrate Diet used for autism, Crohn's, IBS, colitis. Read Elaine Gottschall's explanation of sugar and starch digestion: better than gluten-free if you have persistent GI issues and gf is not enough. bit.ly/elaineg ... or the Paleo diet.
* or Alaska, Arizona, Colorado, Hawaii, Maine, Nevada, Oregon or Washington.
Saturday, March 13, 2010
Stormy looks beaming with health, but you can't fool Mother Nature.
Posted on Fri, Mar. 12, 2010
Tribute | Otis Lee Jobe rose from GM assembly line to telecom company president
By Ruth Baum Bigus
Special to The [Kansas City] Star
Who: Otis Lee Jobe, 52, of Westwood Hills.
When and how he died: Feb. 11, while awaiting a liver transplant.
A driven beginning: Lee was the name most friends knew him by, but older brother Mark Jobe called him Stormy.
“When he was very little, he had celiac disease, so he was crying all the time, and my dad nicknamed him Stormy,” Mark said. “He survived on bananas and Jell-O for the first two years of his life, (but) he finally grew out of it.”*
In the last few months, when Lee was very sick, the nickname was helpful for Mark. “He was in and out of consciousness, but sometimes I could reach him by using that name,” Mark said. (from bit.ly/StormyJobe )
*I'm just sick, mad and SAD reading this!! Stormy's doctor (lil bit o'sarcastic sound effects if you're in the mood: bit.ly/cHu6dF , bit.ly/c6kAO0 ) didn't tell his parents to keep him gluten-free for life (okay, "they didn't know back then").
BIL was a celiac "baby." After I was dx in 2006, I talked to his celiac mother (whose doctors told her the same thing about her own diagnosis when she was an adult, back in the 1980s, btw) and she told me he was celiac "as a baby, but outgrew it." Well, when told, that's what he 'wanted' to believe because he felt FINE. There are people who've come to our celiac support meeting asking why their symptoms came back after 11 years "in remission" while eating the Big G. Not feeling pain gives a person a false sense of gluten freedom. You 'never' go into remission! There are people travelling/evangelizing God's miracle to others that their symptoms went away after they prayed. They know not what they do, and I feel bad about that. Once a celiac, ALWAYS a celiac.
I knew you didn't outgrow it, so told BIL to get his celiac panel test. He didn't believe it (looks the picture of health), but continued to get recurrent "flu" symptoms attributed to other reasons (the kids, picked up something from work, yada). I sat back and tried not to stew about it. But you love a person, he's a husband and father to two beautiful boys. He finally got tested last year (positive) so had three years more damage to his system- now he wants to say it's not equivocal because there's no positive biopsy? Pa-lease! I don't know how strict he is with his gf diet, but I'm sending him this article. Thank goodness(?) he had a positive celiac panel because I don't know that I'd EVER convince him about Non-celiac gluten sensitivity (NCGS).
The Crazy Sexy Cancer girl, Kris Carr, is gluten-free as part of her liver cancer preventative health regime (as well as raw vegan). I wonder if Apple CEO Steve Jobs is gf for HIS liver or pancreas?
More about celiac via CNNs (celiac) Heidi Collins' interview w/Columbia U's Director of the Celiac Disease Center & gastroenterologist, Dr. Peter Green, author of Celiac Disease: The Hidden Epidemic, here: bit.ly/cTOGPy (turn up the volume on this one, sound is bad)
Internet search 'gluten liver' (many articles): bit.ly/9EBTIb
Monday, March 08, 2010
I'm a hoarder. I've not blogged about it; not gonna start just yet either. But I hoard information. I've got a lot of information: I'm not good at unjumbling it from my brain to expressing it. It all ties in together and it blows my mind. Anyway, I want to share Jerry. If you're trying to NOT get cancer like I am, you might be interested. Almost one in two people get cancers I've read. Check your vit D level (heh heh. I had to mention it. It took a few years, but my dentist saw Dr. Oz's show re: vit D and she thought of me; she's gonna get tested!)
If I could meet him in person, I'd give him a big and for 10-11 yrs cancer free and sharing his story. (If you're interested in a holistic approach to life, then this'll be a well-spent 3 hrs. I'd appreciate hearing about your experience with cancer. Let me know what you think if you listen.)
People shouldn't have to work so hard to be healthy. This certainly wasn't part of my diet culture/paradigm growing up. You can find more about him on his site here (upper tab, "About Jerry"): bit.ly/dv35sQ , and also find more of his cancer thoughts if you look around.
DH was home for a week, and he left Sunday. It's always a busy time when he's home, and my routine or rhythm gets out of whack. I've been taking bio-identical progesterone and was a bit late in taking it on schedule for my cycle. A bit being 2 days. So, I'm not even sure how much I'm to take, but was only taking 1 hash mark on the syringe. I thought maybe I wasn't taking enough, so took two days of 3 hash marks. I started my TOM 10 days early. THIS has NEVER happened before, and I wonder if it's because I took extra progesterone. Doc may have mentioned, but it has been 2-3 months now, so I forget. I'm not a Hormone Queen like I'm a GF Queen. :P I also was trying to keep DH's cold at bay, so my immunity was down. I felt under the weather on top of the weather being under.
KICK ON neurotransmitters!
So Saturday, after TOM started, I also decided to kick it up a notch, being kinda impatient here, by taking a FULL TravaCor pill rather than 1/2. I'm tired of my leg pain; anxious for "it" to "work." Sunday I had a headache all day. And not a "cerebellum" headache I associate w/the TravaCor, more an all over tension headache. Thoughts about why (if not a different reaction to upping TravaCor):
-Doc lowered my iron dosage (was taking 2-44mg elem. iron daily, now 1). I used to get headaches a day before TOM.
-I don't take anything but water for headaches, and wasn't even good about that, having only 7 glasses yesterday.
-I didn't get enough sleep the night before, the weather's gloomy ... anyway, today's gloomy, I didn't get enough sleep last night either, but no headache, and actually, I'm kinda up and happy today.
I can't figure me out but hopefully in the future I'll come back and have an aha moment when I read this. My Leg Pain Buddy's StiLL with me. Todays walk I seemed to have more energy, but felt like I had a definite muscle pull feeling in quad and ham, left leg. Also had some sacro-iliac pains. Always my left leg & hip. I remember reading in a Dr. Weil book about the "normal" aches and pains of aging. I don't buy it. I want it GAWN!
I'm gonna call a dermatologist to figure out a blistery looking flesh clear growth near my nail bed on my middle toe, right foot. It has been growing since the summer, and now the nail bed is indented. Weird. I'm gf, why is this happening? ROFL, haha. I know this is ridiculous, but I don't want to show the doc my unattrative toes. I'm so embarrassed about it that I've never worn open-toed shoes until last year (liberating, but at some level I was still wishing I didn't have "El Capitan" ).
See, I'm baring some vanity (this? From a woman who talks about BMs almost daily?). Because of this "problem" I've never had a pedicure, either (Not a sacrifice, I'm too frugal. I do it myself, but I hear they're great. It seems like most of my friends have them). I have what DH calls the "Captain" of Big Toes ;0. He says we could use it as an 'ottoman' in a pinch (that's a shaking fist- lol).
I saw years ago on 20/20 or some such show that women were having surgery to increase the size of their second toes so their feet were prettier in open-toed shoes (see? I'm not alone w/my silly quirk). Kinda reminds me of Lisa Ling's recent Oprah report on beauty from China, and how some short Chinese want to be taller. They're surgically lengthening their tibias: Frankenstein legs in their stretching vise-like contraptions. Amazing and very sad.
I finally made a dental check up appt for DH during this visit home. Dd was complaining of impacted molar feelings and I almost gave her his appt cause she was hurting. Come to find out she had a popcorn kernel stuck back there (hello Flossy?). She gave him back his appt and we are glad it worked out that way. Dentist ended up sending him to oral surgeon to biopsy a suspicious white tissue spot (precancerous?) near his molar area. By looking at it, the oral surgeon said it could be autoimmune (what that would be, I have no idea), which I found interesting because I've been trying to diagnose him with something autoimmune since his celiac mother died and his positive speckled ANA - lol. He has arthritis/gout. He's trying to go paleo. At least that's what he tells me. He lives in FL, what do I know? LOL Anyway, they just called to say the biopsy was negative, that it could very well be trauma from a floss pick as suggested by DH. One doesn't floss, the other flosses too hard! That cost $255 out of pocket. Happy Birthday.
I made him a gf coconut pineapple carrot cake for his belated birthday, and even iced it w/cream cheese/powdered sugar & lemon juice (he wanted to cry he loves sugar so much; he knows I don't, but did it for him). He liked that it wasn't baked as long as it should be (toothpick came out clean however) as he likes cold, dense sweet cakes. Kinda like his wife. hahahaha
Need an ottoman?
(no, it's not mine, I wouldn't dare)
Thursday, February 18, 2010
And I say that because I had a "day" with Dd. Took her to the functional doc who told her the positive gluten, casein, soy antibody Enterolab stool test she had in 2006 was more sensitive than blood celiac test. Poor Dd's in the River of de Nile. I can relate, it's hard. So we had some displaced anger in the car ride home. I love her, so cried instead of eating my young. She's taken some psych classes and she's using it on me. LOL. With all the lab orders, she says she feels like a lab rat. Sorry hon. And my dog doesn't make me cry.
I needed a smile today, so Daddy Alzheimers spams me daily, and this was one I happened to not delete:
FOR THOSE OF YOU WHO HAVE PETS, THIS IS A TRUE STORY. FOR THOSE THAT DON'T, IT IS A TRUE STORY.
The following was found posted very low on a refrigerator door.
Dear Dogs and Cats: The dishes with the paw prints are yours and contain your food. The other dishes are mine and contain my food. Placing a paw print in the middle of my plate and food does not stake a claim for it becoming your food and dish, nor do I find that aesthetically pleasing in the slightest.
The stairway was not designed by NASCAR and is not a racetrack. Racing me to the bottom is not the object. Tripping me doesn't help because I fall faster than you can run.
I cannot buy anything bigger than a king sized bed. I am very sorry about this. Do not think I will continue sleeping on the couch to ensure your comfort, however. Dogs and cats can actually curl up in a ball when they sleep It is not necessary to sleep perpendicular to each other, stretched out to the fullest extent possible. I also know that sticking tails straight out and having tongues hanging out on the other end to maximize space is nothing but sarcasm.
For the last time, there is no secret exit from the bathroom! If, by some miracle, I beat you there and manage to get the door shut, it is not necessary to claw, whine, meow, try to turn the knob or get your paw under the edge in an attempt to open the door. I must exit through the same door I entered. Also, I have been using the bathroom for years - canine/feline attendance is not required.
The proper order for kissing is: Kiss me first, then go smell the other dog or cat's butt. I cannot stress this enough.
Finally, in fairness, dear pets, I have posted the following message on the front door:
TO ALL NON-PET OWNERS WHO VISIT AND LIKE TO COMPLAIN ABOUT OUR PETS:
(1) They live here. You don't.
(2) If you don't want their hair on your clothes, stay off the furniture. That's why they call it 'fur'-niture.
(3) I like my pets a lot better than I like most people.
(4) To you, they are animals. To me, they are adopted sons/daughters who are short, hairy, walk on all fours and don't speak clearly.
Remember, dogs and cats are better than kids because they:
(1) eat less,
(2) don't ask for money all the time,
(3) are easier to train,
(4) normally come when called,
(5) never ask to drive the car,
(6) don't smoke or drink,
(7) don't want to wear your clothes,
(8) don't have to buy the latest fashions,
(9) don't need a gazillion dollars for college and
(10) if they get pregnant, you can sell their children ..
On the neuro-front, I've upped my TravaCor dose to 1/5th a capsule, sleep deeper, no a.m. headaches, but leg pain continues. Walked about 3.5 miles today, did some good stretching. Glad I did it. Then ate popcorn and butter. :) Glad I did it. Ate sardines. Not so sure with that one. LOL.
Tuesday, February 16, 2010
I've known and talked about it for years. Now it's my turn to walk the walk: do "I" have a leaky gut or "intestinal imperiability" even after four years gluten-free?* Today I'm doing it via Genova Diagnostics' test kit.
1. Day before: don't eat or drink at least 8 hrs prior to the test. It has been at least 12 hrs for me.
2. Don't eat or drink in the morning.
3. Collect morning urine sample in cup, transfer into white lidded tube using a "pipette", and refrigerate in the biohazard bag. Don't eat or drink yet.
4. Fill lactulose/mannitol container w/water and drink. The drink concentrate is 5 grams Lactulose, 1 gram Mannitol, 8 millileters Glycerin, water, then I added water to "fill line."
I can eat and drink after hour two. HOWEVER, do NOT eat esp. fructose (fruit sugars) and:
a. any sugars (fruit, fruit juices, jams, jellies, etc)
b. soft drinks and foods with high fructose corn syrup (HFCS)
c. any dairy products
d. dietetic chocolate
f. mushrooms, beans (legumes, including peanuts), celery
g. chewing gum
Rats, forgot to check fasting blood glucose (not to be over 105 as this would impede results).
FBG 4mins after taking lactulose/mannitol solution: 78.
1/2hr later: bg 75
1 hr later: bg 89 (I can feel this change in my head)
2 hrs later: bg 100 (starting to get hungry at 11:45am)
Don't eat or drink for two hours, then drink at least a cup of water and eat.
Drink at least 1 cup water on the hour for another four hours. Collect all urine for the next four hours in little cup and transfer to big blue jug so end of test Total Urine Measurement can be taken. (Genova measures sugars/Total Urine Measurement).
Shake container and use "pipette" to transfer final "sugared" "AFTER" urine sample from big blue jug to the purple lidded tube. Place that with the "BEFORE" control urine sample in the biohazard bag, refrigerate til ready to ship. Put the biohazard bag into the "flexfoil" pack w/the frozen gel pack, seal, put back in the kit box and ship.
Advice: plan meals ahead of time to not include sugars/fruit.
*My last tTG test was very negative for antibodies to gluten. This is helpful to know in case my test shows leakiness, I won't think it's because of accidental gluten ingestion.
Make sure medications, such as aspirin and anti-inflammatory drugs are NOT taken because it alters results. No sorbitol and/or mannitol. Check supplements, too. I brushed w/toothpaste which had stevia. Didn't swallow, but hope this doesn't alter results. Edit: I called Genova to ask. The Genova rep didn't know if stevia has fructose (my quick googling couldn't find anything), so I'm to write a note w/my kit and tell my doc. It'll depend on my test results if this is important. The rep said likely if it's not on the instructions, that it should be all good.
The point of this is to see how much sugar from the test kit concentrate I dispel/how much I retain. The more I dispel, the less likely I have leaky gut.
I didn't take my Synthroid, sustained release T3, or supplements this morning. Dinner last night I had chili (w/legumes) on top of spinach, and an apple. I only mention cause I had legumes in close proximity to this test, but I still followed directions. I don't even usually have legumes, but decided to bulk up my chili cause it was looking weak.
I'll take my thyroid meds after the test, this afternoon. I've not taken them for up to 21 days (prep for parathyroid scan) and felt okay, so this wait won't be a big deal. I'm submitting this to insurance, but my out-of-pocket is $73. I haven't reached my deductible this year. Results take approx 7 days + shipping. I think it's important to do this before I take an ALCAT test.
We shall see *drum roll please* ...
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