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Neurologist: sorry, can't help you.

Friday, June 18, 2010

The neurologist concluded I have a 90% chance of no mitochondrial disease. If I want to find out if that by chance in that 10% I 'do' have one, then I'd have to get put under for a muscle biopsy. He doesn't think it's worth it. He said there wouldn't be a treatment probably anyway. He put patches and stuck needles into my left calve and quad in several places , then zapped my nerves (they work fine-ouch) and read a machine. He said I'm normal. He said my CK enzymes and heart enzymes are not correlated.

I asked if it could be on some sort of "rhabdo" spectrum.
"No. Your CK enzymes are nothing to worry about."
I said, "They're a symptom."
He said, "No, they are not a symptom. Your pain is a symptom, but they may not be correlated." (btw, I can't see how they are NOT correlated. I took the CK test when not in pain in Jan., and had normal test. I took CK test after 5K and in leg pain, and it was elevated. My GP said I could get the test next time I had leg pain, so will take advantage of his offer when the time comes.)

I don't understand. I told him I read online people's stories about rhabdo - how their numbers were in the thousands, I understood I did not have "typical" rhabdo. Why does my CK elevate when I have pain? He said people live with my numbers all the time. (I feel for them.)

Well, I'm tired of living with them sir. Have been living with them for over 10 years, it was way worse before gf diet. He has no answers - wants to retain his integrity. He knows nothing about fibromyalgia, nor serotonin - not sure fibro is even real. I should just live with it.

I told him how I couldn't move for three days after training session last year. He said he felt that way, too, after working out after not having worked out. No, I explain. It was worse. I couldn't move. I ask him, how long til your pain subsided? He said 3-4 days same as me. I tell him, okay, then why wouldn't my pain go away (ever) the year before when I was working out daily for six months? "I don't have the answer to that. I have to retain my integrity."

He then suggested I try not taking all my supplements to see if the pain goes away. He had a patient who did this and his pain vanished. I told him I never took supplements til after getting celiac diagnosis 4 yrs ago, and my pain was way worse before gf diet. I told him how the TravaCor made the pain go away in two days, but headaches were a side effect (including pain in legs). He does not know. To tell the truth, I'd love to not take the supps. I've waned before and paid the price (didn't take vit D, my calcium also went down which got me a parathyroid scan, remember? Is it coincidence I wasn't taking fish oil and I had a heart attack?), so I'm kinda scared to do it. He suggests I go back to holistic doc. Oh, he also suggests lowering cholesterol to prevent heart attacks. (Um, my arteries are clean ...). I wanted to ask his cholesterol: he was heavy. :X

So I'm gonna chill about all my conjecturing. I'm glad he doesn't think I have any muscle "dis-ease", however, am bummed I'm back to square one. I don't want to accept the pain and live this way without answers.

Back to "sisu."

  Member Comments About This Blog Post:

FOREVER4ME 6/23/2010 1:54PM

    Hang in there, If you keep searching you will find the right doctor or natural path doc that can and will help you.
Some doctors are not open to natural medicine.

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MORTICIAADDAMS 6/19/2010 12:04PM

    Maybe should go to a MD who specializes in Asian practices. It would be worth a try.

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TRISHP1961 6/18/2010 7:24PM

    I second the try acupuncture route. See my Spark Page for a summary of my journey with Eastern medicine...

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RHUNDT67 6/18/2010 12:10PM

    Has he ruled out disc problems? My neurologist worked very well with me and listened very closely (took him a visit or two to warm up). My neuro-surgeon was also excellent so maybe it's time to get a referral to a different doctor.

OH - since I refuse to have a spinal fusion - ACUPUNCTURE has saved my life!!!! Worth every penny and I would not be able to even function or move without it - I'm doing so well that I only go four times a year now (originally was 2 x's a week - that's how bad I was). emoticon

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Dx: Reactive Hypoglycemia? Rhabdo? Dysautonomia?

Wednesday, June 16, 2010

Hints of heart attack to come from "Got the T-shirt" blog entry:

8. Legs are feeling like Oprah's. Puff. What do I mean? I remember she said her legs felt like tree trunks when she runs sometimes ... no energy. See #2 above. I ate a lot yesterday preparing for today? I should read more about this ... lol. Actually, I think it's because I lack serotonin. If you are depressed and don't have energy, where's "it" supposed to come from? Ex-er-cise helps!

*Docs and nurses kept asking me if I was diabetic when I was hospitalized. No. However, something absolutely might be up with my pancreas nonetheless.

I know food affects your hormones and neurotransmitters. I try to eat balanced meals, but I'm craving carbs lately and again cause of low serotonin (potato chips emoticon is my crave of choice always. I didn't eat them before the race emoticon). BUT, the day before the race, I will admit I overate: I had double my usual carbs, so, 302 grams! I didn't do "carb loading" homework, what can I say? The last meal I had was popcorn, butter and salt. Then I didn't eat race morning cause I wasn't hungry (I'm sure my liver wasn't done processing all the food from the day before). I ate a banana, blueberries, strawberries, sausage, a Glutino muffin top w/turkey, whole fat yogurt, decaf & cream, Amy's cheese enchiladas for lunch, popcorn. TOO MUCH! And my body, esp if I have reactive hypoglycemia like I think(?), couldn't handle dip in blood sugar during the race. This actually dovetails into #18 below.

15. Water. Could use some. Look how far away it is. Got one dixie cup. Need more on return. Stop at table for two more. Not enough. Feeling the heat.

*Dehydration can cause a heart attack. I thought this was like no big deal. I had a glass of water before and four right after. Will still bring up some sort of "rhabdo" spectrum with neurologist on Friday.

18. Feeling blood sugar go down. Can tell my face is red. I hate when that happens. Why does that happen to some people? Rosacea?

*I think poor autonomic body functions can cause overheating and red face - maybe my blood pressure was way up? Will talk to neurologist at Friday's appt about "dysautonomia" ( , body temp: , fibro connection: ). The feeling blood sugar thing is not good: I feel that sometimes when I eat a meal.*

From the fibro connection link:
"One other approach our group has studied is to utilize neurotransmitter precursors to augment neurotransmitter dysfunction. These precursors are classified and regulated as medical foods by the FDA. Medical foods are regulated by the FDA for patients with specific disease states and are not dietary supplements. The medical foods we have utilized are amino acid-based formulations that use combinations in specific proportions that result in significant reduction of the dose of amino acids necessary to produce the requisite neurotransmitters. The systems provide serotonin, acetylcholine, glutamate, nitric oxide, and cortisol. The preparations are given as a bedtime dose to induce sleep, and in the morning to reduce daytime fatigue and improve cognitive function. In addition, there is a preparation which may reduce pain and point tenderness."

22. Running through running buses on both sides of the street - gag me - their exhaust is putrid. Cover face w/shirt and try to not gag. Honest. I read somewhere that people w/low serotonin gag easier and it explained so much. My old orthodontist boss told me he thought gaggers had control issues ... I'm gonna have to email him!

Insight into hormones, neurotramitters and diet (for men, but likely for women, too, I'd think?): It even mentions gag reflex:

"...Decreased (gags easily) = Strong (sympathetic dominant) Increased (doesn’t gag easy) = Weak (parasympathetic dominant)." I have to reread this article, I don't get it all...

*I have always been a gagger. Seeing someone do something gross, I'll gag. Friend used to not clean her fridge, and I'd do it for her (hey, I didn't have a kid at the time). We'd laugh and laugh as I took things out all hairy and moldy - gagging the whole time. We'd take pictures, put face stickers on them and name them - lol. Anyway, you get that I have an easy gag reflex.*

Symptoms for reactive hypoglycemia also include, hello, palpitations and depression. I will discuss with neurologist. Seems the Rx is to eat smaller meals, more often and to cut the crap. I've already cut the crap, but hoping I can still eat fruit; I've been getting careless and sometimes'll eat fruit alone. Not anymore. I was able to listen to cassette tapes on my boom box during one of my old jobs (this was before MP3s obviously, lol). One was about diet and the author suggested eating your dessert, in my case fruit, in the middle of the meal.

I am also lonely for my Dh. We've been 2.5 years living separately. I've put my life on hold til he can get a retirement job. This is getting to me because it's time to move on. Will someone please give the memo to the Economy?

I like to think I have what the Finns call, "Sisu": unusual perseverance in the face of adversity. It's how we jump into freezing water after a sauna - ha ha. Which is another blog entry, another day. :) I'm not so sure I'm up to THAT just yet.


Notes for me:
"...prevent blood sugar levels from falling dramatically which would decrease the threat of serious effects such as fainting, illness, and even heart attack." (did not take supplements day of race - fyi)

Wiki article "reactive hypoglycemia"

React. Hypo:
"...there’s much more to hypoglycemia symptoms and hypoglycemia treatments than just stabilizing blood sugar. The ADRENAL* stress hormones, adrenalin and cortisol, are critically involved. In fact, most hypoglycemia symptoms are caused not by low blood sugar per se, but by an over-reaction of adrenalin and cortisol discharge–part of the body’s defense against blood sugar falling too low."

Amer. Journal of Clinical Nutrition article:
*my note: food intolerance can contribute to adrenal fatigue.
Oral glucose tolerance tests not advised ...


I wish I'd taken bg day of race and after, etc. I wish I'd taken blood pressure, too. Today fasting bg was 92 (I know, "high" shh). I ate about 3/4c of plain 0%fat Oikos yogurt and 1 strawberry as I cut strawberries. I SParked a bit. I don't know time lapse, but about an hour? I started feeling anxiety: checked bg and it was 80. Is this hypoglycemia? Need to research more ...


I also found some info re: what I think are Myer's (type) Cocktails, but this ND uses it for celiac patients. He explains that the nutrition is delivered quicker than processing through the liver: .

He also uses a therapy with which I'm unfamiliar: "Prolotherapy involves the injection of dextrose, a local anaesthetic, and sometimes a fish oil derivative designed to stimulate the body's own healing mechanisms." I'm not sure I'm ready for that, but wanted to keep it for reference:

  Member Comments About This Blog Post:

ALEXCATEYE 7/26/2010 12:29AM

    I have tons of pancreatic problems, too. It's frustrating. Sometimes I have no idea what to eat. I hope your neurologist helps you.

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    The part about the gagging on the friends moldy fridge contents was truly gaggy. Seriously you must get some cleaner friends. LOL. emoticon

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2CATS2LOVE1 6/16/2010 3:37PM

    I wish you lived closer so we could take a jog (or perhaps I should say walk) together and just talk. I had two husbands. Life w/ each of them was not the best. It's a long story. Even my two daughters and I are estranged. Best to live a quiet and calm life in the face of adversity. Besides I've had enough problems in the past to deal w/ fresh new ones. Cats are good. They teach you how to some more. They are never stressed and all they care about are a place to sleep and food. Anyhow, that's my cats, perhaps not all. It's amazing their lifespan isn't one hundred. You have a dog. Aren't animals grand...calming? We can learn alot from them. Take one day at a time, Dot. Savor the moment. Don't dwell on the thorns but focus on the rose. Little things mean a lot. Keep in touch, okay?

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AACK ... a heart attack! Trying to do it gluten-free ...

Saturday, June 12, 2010

It was the Perfect Storm.

And I’m ready to write about it. Remember the t-shirt I ‘had’ to trophy last month? It cost more than it was worth. Let me set up the story some.

In January: First, I have a wonderful friend. I housesat (didn't sleep there tho) for her in January when she was basking in the sun in a different hemisphere. When it got below freezing I was to turn on upstairs faucets to prevent freezing pipes. I turned on the shower head, too, because I'm an over-achiever. Long story, short, I flooded (‘splashes’ of water or a leaky shower pan? did this) the upstairs a lil bit, which flowed downstairs a lot a bit. She didn’t want me calling plumber, she called another friend, a realtor w/connections, who ended up calling the old plumber I gave friend (another story)– the one we don’t call anymore cause it turns out he has drug addiction and felonies. How was Realtor to know? Oy. All in all, this poor friend o’mine had to repaint the ceiling & some trim, restain some cupboards and pay said felon plumber. You can imagine how mortified I was to have had this happen.

More January: Scheduled tri-annual visit w/hematologist. I ask him for ‘creatine kinase’ or CK test as I’ve read it’s associated with rhabdo – or rhabdomyolosis. Doctors associate rhabdo with say firefighters in heavy gear getting dehydrated during fire fighting, or athletes working outside in hot weather. Your muscles seize. I’m sure this is what happened last year after working out w/that trainer– it’s all I can find online. I’m sure I whined about it in a blog entry somewhere. I had a hunch about these muscle enzymes being elevated – but only when I’m in big pain after working out. The hematologist humored/tested me, but I knew they’d not be elevated because I hadn’t worked my muscles to fatigue. Sure enough, they're not elevated. Okay, base lab established.

In April: Let me follow up on some test results. You know I love tests. The good news per a new DEXA scan, is that I increased my bone density 8.7% since my CD diagnosis (Feb ‘06). It’s recommended you get a bone density scan after dx, I did it, and I was considered osteopenic. Doc recommended Posture-D supplement (and vit D for low D), but I was crumby at taking it because I had to time it away from Synthroid (calcium blocks absorption), iron and greens, yada. I barely took a half-full bottle. I surmise the increase can mostly be attributed to walking. I also ate more greens, ate a lot of plain yogurt, got some sun, took magnesium (which helps vit D absorb, which in turn helps other bone-building minerals absorb). I increased my ability to absorb by going gluten-free, too, of course. :) Grains and legumes have phytic acid/phytates which can block mineral absorption. Did you know you need minerals so your vitamins’ll absorb or vice-versa? I self-started taking liquid minerals since my heart attack. I’m getting to it, emoticon with me.

Also in April: I also got my ALCAT food sensitivity test results. I reacted severely to safflower oil (which I don’t eat, so no prob there). The holistic MD said I should stop eating Severe foods (6 wks) and Moderate intolerant foods (3 wks), then reintroduce and watch for symptoms/reactions.

Early May: go to my GP for thyroid and other labs. I ask him for an updated hsCRP – it’s down to 3! I’ve always been 6 or 11/12 when you want UNDER 3! hsCRP – “high sensitivity” C-reactive protein is more sensitive than a regular CRP. Supposedly also it's for heart inflammation, but I've also read it's for BODY inflammation in general. It's my lowest ever lab. Woo hoo! Maybe cause I gave up a lot of dairy (still ate butter, cheese)? Not sure why. My TSH is on hyper side at .7 I think it was. We're looking for reasons for heart palpitations - again.

My moderate foods: Apple (eat them all the time), apricot, cantaloupe, cayenne pepper, kidney bean (shown up on all 3 of my food tests), kiwi, lamb, nutmeg, olive, onion, sardine, thyme. I eat kidney beans when I have a Wendy’s gf chili when I’m “oot and aboot” and need sustenance. It also has onion. I had one the day of the test. I wish I hadn’t done that. I do eat nutmeg on my sweet potatoes. I use sardines by way of my omega-3 oil daily, and have about daily since my CD dx. I was also working on investigating taste test differences of sardine companies. Guess that can wait. Regardless, it's not supposed to matter when I ate the food in regard to the test. I didn’t find it difficult to stop these foods. I talked to holistic doc about taking krill oil instead of sardine-based Nordic Naturals omega-3 oil. She said she didn’t like unsustainability of them, but would be fine. I never got around to getting them cause I'm kinda feeling subpar. The test also said I had mild reaction to Candida Albicans, to avoid baker’s yeast, beet sugar, brewer’s yeast, cane sugar, fructose, honey, and mushroom. I usually do, except the fructose from fruit sugar. I have that daily. Doc said to disregard. She said to also disregard “Mild Intolerances” column (long list). I’ve heard the less foods you react to, the healthier your gut terrain. I have no reaction to gluten/gliadin, nor casein/whey.

Okay, what I remember I wanted to set up for the heart attack story. Are you still awake/there? lol

After I was done w/my "First 5K ever" race, I was exhausted. I pretty much laid it out with my previous post. MANY clues are there when I look back on it, and I’ll point them out in my next blog entry. I don’t remember what I did shortly after the race, but I went home and tried to rest for sure. I remember taking a hot, long magnesium bath and going to bed early. Drained. Painfully drained. More drained than I remember being before CD dx and having low ferritin, when I felt like I was melting from fatigue. Heavy drained. Remember the ‘tree trunk’ legs I was carrying (prev. blog entry)? Now it was my body feeling that way. NO ENERGY. It was like it was sucked outta me. I just wanted to sleep. I hit the pillow and fell deep into my cushiony nasa-approved cushion top (really helped my fibro soreness). Ahhh. I have a heavy chest like when you gulp a pocket of air, but it’s bigger and won’t go away. My sleep isn’t restful. I awaken around 4am, like usual, and pee. I can’t go back to sleep, so I decide to get up around 5:15am. I'm pretty sure because I just couldn't get comfortable. Around 9:30am I’m fixing breakfast (sweet potato, raspberries, chia/hemp/flaxmeal, flax oil – cause I’m not having omega-3s remember?) … but am not hungry. Want to eat, but am feeling flummoxed and put fork to mouth a couple of times but don’t really want it. My body is whiney and feeling schlumpdety-dump (read: anxiety). My left arm is hurting – just a bit, like when a bp cuff is inflating but not maxxed (that hurts more, specially when it doesn’t stop and needs to restart for some reason).

A band of pain in left arm – chest pressure – flummoxed/anxiety. Hmm, alert: heart attack symptoms! I google to make sure. I call nice friend referenced above. She’s not answering. I call DH who is riding his bike in the Everglades - glad he didn't get nabbed by a gator when he stopped! “Um, DH, I think I’m having a heart attack, but I’m not sure.” He doesn’t quibble – take an aspirin and go to ER! Um, I’m flummoxed. I don’t wake up Dd cause she’s a grouch and will make me feel bad having to convince her I’m not well. She thinks I’m a hypochondriac as it is. THIS makes HER feel WORSE when I tell her that. I find an Equate expired in 2007 baby aspirin (not being one for having OTC meds, I’m lucky to have found it at all). No gluten info on the bottle– see box for details. UGH! I drive myself to nearest Instacare. This is the Bible Belt. It’s Sunday, before noon and they’re closed. I should be in Vegas right now.

DH calls me: “Are you there? How do you feel?”
Me: “I’m waiting for them to open. I think the aspirin is working as arm band pressure has lessened.”
Him: “That’s not good! GET to nearest ER!”
Me: “It’s only 20 mins more, but okay…”

This is my classic under-reaction, par for the course for someone w/a lack of serotonin, epinephrine and norepinephrine. I remember up the street is small hospital w/ER. I stand in line waiting to talk to admitting agent. She gets up to do something, and a nurse sits down at next station to do phone business. I wait for her to finish and ask her questions about, gosh, could I be having heart attack? We discuss and better safe than sorry. She wooshes me in. I’m hooked up, blood’s taken, oxygen given. Indeed! Heart attack! What?! Really?! They checked CK (muscle breakdown enzyme), CK-MB (heart enzyme specifically) and troponin (another heart enzyme). All elevated. See, I’m no fool about the CK! I just know something’s up w/my muscles.

First, the nurse is trying to give me aspirin. Wait! Is there gluten in it? “Seriously. Are you worried about a little gut pain vs heart attack.” “Um, yes. I don’t want to feel weak for a week if I don’t have to … Oh, really? YOU have IBS? Let’s talk about what you may not understand about gluten, celiac, IBS…” lol.

She wants to give me sublingual nitro spray. Wait! Is there gluten in it? “Seriously?” nurse says. Seriously. I give them site as it’s all I can remember. She is able to look online right there in my ER room, and says the aspirin is gf. (I do some aspirin homework when I get home:. I have to call ER for name of product. It's made by Zenith-Goldline Pharmaceuticals – trying to find info online about Zenith-Goldline is a joke. It's orange, 325mg, blister-pack. AND, when I called ER to verify name (after-the-fact) for gf status, person told me to get discharge papers. I go get discharge papers and name of product isn’t even listed; just says “aspirin.” So much work just for gf aspirin! When I look back at, the manufacturer is NOT listed as she said. GRR! However, no reaction. GOOD.)

I gve my medical history in a heart beat. :) Except I forget I’m heterozygous for Factor V Leiden – a clotting disorder. Kind of important in this case. They test TSH, T3, T4. TSH is 2.something. Couple of weeks ago .7 and a bit hyper. I’m transported to the Heart Hospital for further care.

Gurney Journey –

No lights or sirens, but speedily I get transported ia ambulance. Attending EMT is talking w/driver about beating the storm. Please! Watch this hail storm and know that as it’s happening it’s beating against my hospital window with such ferocity that all attending nurses hooked me up, gathered my guests, and ran into the hallway for safety in case the window broke, and a tornado was attached to it. “YooHOO. I’m okay” as I lay alone in the room , lol - what a wild ride!
This is what happens when you’re a jogger caught in that hailstorm:

(DH had Nice Friend take Dd to pick up car at first hospital, then they visit me for support at Heart Hosp. It’s nice to have an adult there. She brings with her a visiting physician from Vietman. The Vietnamese doctor tells us of heart patients 3 beds to a room, 2 to a bed. :( Um, and the storm beat up our cars. Nice Friend now has over $7500 in damage. Her back windshield is blown out. What are the odds? My car has $8700 damage. Nice Friend has adrenal fatigue, too, like she needs me? She is gracious. I am grateful.)

Tall, dark cardiologist wants to cath me. Trying to explain my celiac, Hashimoto’s, fibro … what about low serotonin? Forget again to mention to him about Factor V Leiden, but tell nurse. (DH’s cardiologist wants to cath HIM, and he won’t do it. He’s had stress test, echos, CT scan and he will not do this invasive procedure.) I figure when else to do this but now? It’s the Cadillac of heart tests. I agree. But omg, if I have to have a stent and take Plavix the rest of my life I’ll just hate it. THIS mortifies me.

A Catholic priest from Africa visits me and his voice booms in a heavy, rich accent, much like my father's (who is Finnish, but you get what I mean). He tells me over and over what a good person I am, and I start balling. It felt good to hear good things whilst under duress (please no Plavix, please), and it felt good to get it out and off my chest as it were. We discuss how we like OK because people are real, and nice.

No eating or drinking 8 or so hrs prior (forget exact #). Ate a great breakfast of two servings of fish, broccoli, sweet potatoes, asparagus, scrambled eggs! The hospital uses Promise butter. I’m not a fan. Ask for fish to be heated in olive oil in low temp, but really, have no control, so give it up! The menu is full of grain carbs, dessert, the pot roast is supposed to be good. I don’t like pot roast. :P

Another meal I ordered meatloaf w/broccoli, sweet potatoes and asparagus. The meat loaf arrived w/gravy and the veggies were touching it. I ask for another meatloaf as indeed, oops, the gravy is gluten-filled (I would have been amazed had it been gf). It comes up plain, good, but no veggies attached. :( Have to ask for new veggies due to cross-contamination. Kitchen people are kind and darned quick - they heated my veggies under Saran wrap :(. Decide to be happy the meatloaf is gf! I love meatloaf. Dd eats the wrong order. There’s one complimentary meal per day for a family member. Thank you so much. The hospital dietician comes in and I tell her the menu is carby and unworthy – the veggies are great and such a small part of the menu. :P So opinionated am I in the bed all fat and almost cathed. Cute thing smiles at me. I lose two pounds while I'm there, btw. Paleo baby.

My Nice Friend shall remain anonymous. :)

BP is 150/82 - whoa! BG is 118. They understand that it's high because of current stress. But really, I've been testing and it's over 100 a lot lately, so I'm surprised A1C is 5.5 (avg bg of 111 I think). I have not had energy to do much exercise.

First ER nurse put my IV needle in at my left inner elbow vein. It prevented good sleep as I couldn’t bend my arm, or when I did, it hurt. When the Heart Hosp nurse removed it and put it on top of my other arm, the needle was bent - at first I thought, wow! But that's when I learned they are plastic now. lol That nurse at the Heart Hospital was a scream. She has IBS, too. I told her if I get the cath, she has to read Living GF for Dummies – lol. I will check up on her later. She was calling me “Tiny Barrett” cause of my tiny barrett, and giving me tude, and I was calling her to come entertain me w/her small town, blue-collar humor. She told me stories about her dad dying, and what a good man he was. How she’ll listen to her mom about Activia now. I didn’t go into what I think of Activia (see old blog entry again - lol - I got opinions: too much sugar.). Poor thang had to shave me before the procedure. Never a pedi, now a Brazilian? lol I found it humiliating. :/P I was glad I had on clean, unstained underwears. :P I had to get nekked for the cath lab – man, it’s FREEZING in there. It was like being in a space station. Please cover my neck/thyroid with a lead collar during the procedure to prevent radiation. They did. Then they shot me in the stomach with something, put something in my IV and I was out – though, I thought I’d be awake. I have a DVD copy of my scan, but I don’t think I can copy it. It was clean, so no stent, no Plavix. YaY! Cardiologist referred me to my GP. That was that. No love lost there. No money in healthy arteries I guess?

Cholesterol fwiw:
Total: 206 (less than 200 desirable)
Tri’s: 74 (under 150 desirable)
HDL: 49 (women want 50 or higher)
LDL: 142 (under 100 desirable)

(My TC/HDL ratio should be under 3, but it's 4.2. Tri's are good.)

I gave GP a rundown of the weekend, and off was he. I said, “Wait! What about my fibro-leg pains? WHAT CAN WE DO???? I can’t help but think my muscle problem affected my heart.” He said, “Myer’s Cocktails. See so-and-so.” Oh for heaven’s sake. Why wasn’t this ever offered at any of our other appts! ARGH! ('_
and have to do more homework about this.)

I'm to take it easy for 6 weeks, which is up in another week. Like I want to go running right now?

I have thoughts about why this happened, and I'll try to wrap/tie it up in a bow next time. Yeah, I've been googling! :D The dog is nagging me for her walk. Shall follow up later. This is enough, yes? Phew.

  Member Comments About This Blog Post:

-SHAWN- 3/14/2011 1:29AM

    Well that was quite the evening read!. You keep saying see this post or that post... I NEED LINKS WOMAN!

Thanks for tonight's email about this. What are /were you doing in OK? I thought you lived in Canada, or are you there doing the house sitting? But then it seems that far away you'd be sleeping there (at your friends) I'm confused about that part.

Your numbers are so good, why a heart attack? Mine are off the chart BAD....

That chest discomfort description like a gulp of air stuck but bigger, was a great way to explain as was the BP cuff feeling.

You could be a writer...

I understand about your daughter feeling bad.
My daughter was attacked by a dog, but didn't want to disturb me while I was napping/nursing her baby sister. That's what she told the neighbors as she sat bleeding to death on on front

Mind you she will to ask for a soda, or ask where is this or that, but bleeding to death, no I might get mad...

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GGMOM06 6/25/2010 10:33PM

    emoticon Good grief!! I just had celiac test,neg. had Tsh2.57,Sed rate 20(range is 0-20) but it didn't say it was high. Like my TC 276,Tri's 405, LDL can't be calculated to high, HDL 54. Glucose 121 (A1C ok) B12 ok, D low, CRP 1.27 ?? Fibro is real bad,legs hurt so much(along with the rest of my body) So what is a Myers Cocktail? I take 5 mg of Valium to get to sleep but can barly get to the bathroom at 3 or 4 am might have to get some depends,lol. I'm so stiff that it takes so long to go 6' to the toilet(sorry TMI) Glad you are doing better and start to take even better care of yourself. emoticon

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PEACEFULONE 6/19/2010 1:23PM

    OMG girl what a time you've had!
Sending love and best wishes...
emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

Comment edited on: 6/19/2010 1:23:35 PM

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JULIE_MAY 6/18/2010 1:05PM

    Wow, I haven't been Sparking a lot for the last few days and missed the excitement! Of course, you probably could have done with a little LESS excitement. So glad you listened to dh and got to the emergency room. Denial can be a powerful thing. I almost died from anaphylactic shock one time due to denial.

Take good care of yourself and I'll be praying for a quick recovery!

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2CATS2LOVE1 6/16/2010 1:59PM


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PJGABRIEL 6/15/2010 9:52AM

    That sounds like you had quite adventure and you make it sound so simple but it was anything but. Hope you are feeling better and enjoyed reading your blog.
emoticon emoticon emoticon

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SISTERDOE 6/15/2010 12:28AM

    What a surprise! I'm glad you are on top of your physical condition. I'm also sure some hospital staff now hates you. *LOL* Glad you are back with your great sense of humor!

Gentle hugs,

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JANETX62 6/14/2010 4:43PM

    Your such a good writer, such humour in your blog, at such a worrying time,I wish you a speedy recovery.
Janet. emoticon

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LADYZHERRA 6/14/2010 12:00PM

    Wow, Dots. I am so happy that you are getting better. Thanks for sharing your story. Hang in there and keep us posted on your progress!


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GIRLINBRAZIL 6/14/2010 7:59AM

    I'd been wondering about you and missing your SP presence. Whew, glad you are okay and wishing a speedy recovery over the next 6 weeks!


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MORTICIAADDAMS 6/13/2010 11:25PM

    OMG!! I know you are joking about this but it is a total freak out to me. You could have died. You must take better care of yourself!! Starting now.

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MADAMEAJA 6/13/2010 7:28PM

    Amazing. Hope you are recovering nicely . . . take care!

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AINTSKEERD 6/13/2010 12:45PM

    Well I'll just bet dd is soooo happy that you are a hypochondriac! emoticon

I love your sense of humor when you tell a story but mostly, I am glad you are doing well. I'm thinking 'wake-up call'. Maybe it's time to put a bit less emphasis on the science, and more on the action. Just a thought, dear. emoticon
Take good care of yourself and remember to walk before you start running again.

xoxo tam

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OUTOFIDEAS 6/13/2010 12:40PM

    I was staggered to hear this news, and I am so glad to know you are still with us! I'll be praying for a full recovery...for "better than new!" emoticon

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XENA47 6/13/2010 11:52AM

    Thanks for sharing your experience. Every account I read makes it more likely I'll recognizes the symptoms if I have a heart attack.

Also, best wishes for a speedy recovery.

Comment edited on: 6/13/2010 11:53:16 AM

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TMBTTLES 6/13/2010 11:05AM

    It's great to hear that you are recovering! Very happy to hear you have no blockages! You are blessed! I am always reminded of how intricate our bodies are through your blogs. Thanks for sharing!

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KARRYB1 6/13/2010 11:01AM

    Quite a story! Hope your recovery is speedy! emoticon

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45ANDFIT1 6/13/2010 6:58AM

    Great story - aren't you grateful to be able to tell it!

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RHALES199 6/13/2010 12:32AM

    wowzer's....glad to know that you made it through all that!

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HAMMOD 6/12/2010 11:37PM

    Wow! I find it awesome that you have such a great sense of humor through this whole story! LOL Glad you didn't have to be on Plavix for the rest of your life! I'm actually 75% finnish myself! :)

Thanks for another great story - although I would have preferred you to not have had to go through that. :)Take it easy. emoticon

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Been there, done that, GOT THE T-SHIRT! 1st 5K-WooHOO!

Saturday, May 15, 2010



I forgot to go to last week's 5K at the zoo, so I hunted online Thursday night for another opportunity to earn a t-shirt, aka my emoticon. I figure I've been walking far and wide for four years; that I could probably do it, that I deserve one. :) I missed the deadline but the race was rain or shine, so I showed up anyway and paid an extra $5 or $25 total for the privilege to walk amongst many other stories.

Things I thought about along the way:

1. Outta the gate: I have to pee.
2. I wish I'd have eaten. Hmm, I brought an apple, banana, and a slice of spinach frittata pie, and it sure would be good right now. Huff.
3. Follow the crowd, it's easier than I thought. Course, I'm walking. And it's only the beginning. Did I stretch? Dang. No.
4. emoticonControl the dog. How cute is that? I got to bring my walking pal on my first 5K. She's not socialized very well, and she drools from excitement. All those other dogs/smells! emoticon Thank goodness she's a pretty good walker, though. "See Spot Run" run to raise $ for a 'no-kill' shelter.
5. This is so foreign to me. I would never have done this as a youth because it wasn't something ever introduced to me. I wanted to introduce it to DD, but pooky didn't want to go (she would have been a drag anyway - no drags allowed!). I'm now glad I don't have to listen to her. It'd be so fun if DH was here: he's cool and encouraging. emoticon It's okay. I'm doing it alone. I'm relying on myself. Keep going.
5. I don't want to let that older person beat me. emoticon
6. Glad I slept well, but wish I'd have slept longer.
7. Glad I'm wearing new, white sockets. White socks are a big pleasure in my life. They make me happy. Why doesn't SP have a white sock goodie? They need one so SP peeps can goodie me w/it. lol I'm grateful for Enell sports bras (the ones on BL. Cha-ching expensive so the girls are coralled at all times). I wished I'd have worn shorter pants. Chug-a-lug. Puff.
8. Legs are feeling like Oprah's. Puff. What do I mean? I remember she said her legs felt like tree trunks when she runs sometimes ... no energy. See #2 above. I ate a lot yesterday preparing for today? I should read more about this ... lol. Actually, I think it's because I lack serotonin. If you are depressed and don't have energy, where's "it" supposed to come from? Ex-er-cise helps!
9. emoticon"Ex-er-cise, Ex-er-cise, Ex-er-cise to thin those thighs" ... singsonging ...
10. What? A hill? oy. Get into rhythm, Dots.
11. Wait, the Jen dog has to tinkle. emoticon Wait, she's tripping up another runner. Oops.
12. I need a job. What to do after being outta commission so long and with no skills anymore? I said this wouldn' t happen to me, that I'd be different. Outta the mouth of a babe. emoticon I like being with people. I need people. People (sing song), People who need People. I need to work.
13. Are we done yet?
14. Ah, how sweet, I'm in the dust of an 8 yr old. emoticon I encourage her. Her legs are shorter than mine.
15. Water. Could use some. Look how far away it is. Got one dixie cup. Need more on return. Stop at table for two more. Not enough. Feeling the heat.
16. Very heavy girl passes me up to tell water-people that she's going on to do the 10K (good for her!) ... should I try, too? No. Don't be rushing. It has been four years though ... next time, okay? I want to know her story.
17. Perfect weather! Oh thank you so much for the overcast, cool, low 60s. emoticon
18. Feeling blood sugar go down. Can tell my face is red. I hate when that happens. Why does that happen to some people? Rosacea?
19. I'm glad I forgot my Garmin. I just want to be surprised at the end. Where is it btw?
20. I wish I knew how much longer. I like knowing my route. Seems easier. Relax. Go with the flow. Enjoy this. Breathe.
21. Jen needs to tinkle again - good thing I brought the leash with a 25 ft. lead. Just a pause.
22. Running through running buses on both sides of the street - gag me - their exhaust is putrid. Cover face w/shirt and try to not gag. Honest. I read somewhere that people w/low serotonin gag easier and it explained so much. My old orthodontist boss told me he thought gaggers had control issues ... I'm gonna have to email him!
23. WoW - look at the person pushing someone in a wheelchair. I want to beat them! lol
24. Oh emoticonJen has to poo. Stop to clean up and luckily find garbage on the route to finish line.
25. There it is ... wow, the finish looks big and official, and 'I'm' gonna cross it. Lungs are a bit wheezy (new experience) now. WWTBLC do? (BL contestants): PUSH, lift those dragging feet! A man is high fiving people on the way in. I gather strength to give him my two free fingers from leash. I wanted a high five. :) I also wanted to puke. Don't puke. Need food.
26. Another lady and I are jockeying for the line. She's older and wants to win. I'm cuter, and I let her. emoticonThe 10K-ers are coming in. Whoa! emoticon emoticon
27. WOOHOO, I'm so glad I FINISHED! emoticon I kept wanting to walk at the end cause I didn't care anymore, but I remembered Daris on BL was sorry he gave up on a challenge, and that older lady ahead of me wouldn't let me. (Thanks Whoever You Are, btw!)

They had sports drinks and water, tables of gluteny things (bagels, buns & hotdogs), oranges & bananas. I got myself a banana (perfect) and gave Jen a bite of someone's bagel from the trash until I saw there were hotdogs. It was much easier to vector the dog in a maze of peeps with a hotdog in my hands. I didn't stick around for winners, but I should have seen what it was like.

If the clock time at the end is accurate (how does it know when I started?), I finished in 48.10 = 16 min/mi. My everyday walk can be a 22-30 min mile cause it's really the dog's walk. Personal best anyway. I'm sooo proud of me. I did something athletic and I wasn't 8, 12, or 16 yrs old when I last remember being very active! Hey! I have short legs! lol Your 10,000 steps are my 12,000! A guy took my picture and told me it'd be on the race website for purchase, but I see others online with finish line pics. Not sure I have one, but oh well, you can't picture my emotions quite the same.

BTW - I feel GREAT! My muscles are sore in the GOOD way, not the fibro way. I shall see how they will be tonight/tomorrow. But I can't wait til the next race (w/out the pooch)!

emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon
Thanks SP and SP peeps. Couldn't and wouldn't have done it without you!

  Member Comments About This Blog Post:

PEACEFULONE 6/19/2010 1:02PM

    WOW!!! Good for you and thanks for sharing the story!

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45ANDFIT1 6/13/2010 7:00AM


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CINDYTW 5/20/2010 11:34PM

  emoticon emoticon You should be proud of your time! I think my first 5K was arount 43 minutes and I was running..well, jogging really! Anyway great job! And the blog was very entertaining!

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2CATS2LOVE1 5/20/2010 5:42PM

    emoticonon staying active and doing so for a worthy cause. You go, girl! I mean, emoticon emoticon emoticon emoticon emoticon

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TMBTTLES 5/18/2010 2:39PM

    Congratulations on finishing your 1st 5K! I have never done one either, and I thought it was great to read your thoughts during your experience! Thanks for sharing! Have a great week! emoticon

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FRAN-SOLEIL 5/18/2010 2:15PM

    Way to go! It sounds like a great day. I really loved how you told us everything that was going through your head. It's funny the thoughts we can come up with sometimes.

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HAMMOD 5/17/2010 4:18PM

    You are so entertaining. I love reading your blogs. Congratulations on the 5K - it is really an emotional thing to finish your first one. :) And 15 minute/mile is good timing - especially for walking! I have very short legs as well and yes it is harder for us shorties. emoticon

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KITTYV1 5/17/2010 10:41AM


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JANETX62 5/17/2010 4:24AM

    Congratulation on your acheivement, and yet another brilliant blog, thank you, its such fun to read.I now what you mean about the red face thing, I'm always like a beetroute when exercising.
Best Wishes

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LADYZHERRA 5/16/2010 7:59PM


Whooooooo! I loved reading about your experience.

Here's to many more to come!


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SRV103115 5/16/2010 6:34PM

    Awesome! I love this blog post, I "ran" my first 5k May 2nd myself in Baltimore. It was 'Making Tracks for Celiacs" to raise money for the University of Maryland's Center for Celiac Research! I finished in 50:33, and I was so impressed with myself. I know i'm not a runner, but I ran as much as my little short legs could and when I could not run anymore, I walked, then I ran more...

I can relate to so many things you said... I'm not going to let that older person beat me.. I was so mad at myself during my 5k's moms pushing strollers were passing me! Also these two tall older men walked the entire thing at a nice conversational pace for them, but I was running and passing them then they walked and passed me while I was walking. I was busting my butt to go as fast as their long legs glided them effortlessly! The only thing that gave me solace is I burned more calories! HA!

I plan to run another one in June for Colon Cancer, I look forward to finishing it in 49minutes, then the following month i'd like to find one to run to end in 48 minutes, and so on.... Little steps...

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AINTSKEERD 5/16/2010 2:37PM

    emoticonContratulations on a new VICTORY! emoticon
Now how are you going to top that? I'm so proud of you! (and your dog) emoticon

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OUTOFIDEAS 5/15/2010 11:11PM

    Proud of you! emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

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SISTERDOE 5/15/2010 11:03PM

    emoticon emoticon emoticon
Way to go, Dots! You crack me up... mostly because your rambling thoughts along the way seem alot like the way my brain hums along. My problem is the "fog" that keeps me from remembering them long enough to give others a giggle.

Congratulations! I pray you will still be so psyched that your body won't be "feeling it" tomorrow.

Gentle hugs,

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GIRLINBRAZIL 5/15/2010 9:12PM

    Congratulations! I love the list! So glad to see that you got to do this. Been wishing I could do one here where I live!

emoticon emoticon emoticon

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    You never cease to amaze me. You did it. Loved the crazy thoughts that run through your head. How many people stop in the middle of the race to clean up dog s---? Only you. LOL. I luv ya, girl. You crack me up.

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RHALES199 5/15/2010 6:08PM

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

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NEENER967 5/15/2010 5:54PM

    I l-o-v-e-d your blog! Thanks for making me smile on a day when I was sure I wasn't going to. Your story is inspirational and I wish you the best on your journey to becoming a healthier you! Congrats on your first 5K!!!

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_COSMOPAULATAN_ 5/15/2010 5:07PM

    Awesome! Congrats on your first 5k!

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SEANSAUNT 5/15/2010 5:00PM

    That's fantastic! I can't run with my dog - he likes to cross over in front of me too often and I swear is out to kill me. And every tree, bush, random plant we pass is fair game for smelling/marking/chewing.

I walked my first 5K on May 1st, but (hopefully) run my first one on June 5.

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KRISMG24 5/15/2010 4:53PM

    You are too funny! Congrats on finishing the 5K. I think you just gave me inspiration to keep training.

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Dr. O'Bryan speaks re: hidden gluten sensitivities

Monday, April 19, 2010

I listened to Dr. O'Bryan re: gluten sensitivities last Thursday. He's a chiropractor from Detroit who I believe practices in Chicago. It really was a introduction/primer to learn the hazards of gluten. There wasn't much I didn't already know. The best part was that I got Dd to go with me (kicking and whining) and was surprised she chuckled at his jokes. She perked up when he mentioned social phobias and teens. Then she left the scene to sit in the sanctity of the car until the Q & A was over (because of her social phobia).

Always the best part to me are diagnosis stories, so I'll share one he shared, and I'll try to cut it short.

Aunt _?_ (I forget her name) is pictured on the large screen behind him. She's a well-dressed white- and curly-haired woman in her 80s(?) and you can see the light in her eyes. She's very bony thin. You can imagine her fragility. For most of her life she had elevated liver enzymes at her annual physical. It was brushed aside as "That's just the way you are." Dr. O'Bryan explained that the elevation means that a person is not able to keep up on "cleaning" the liver as it were. Now, at her ripe age, she complained of pains in her stomach area. It was found her liver to be working at 4% capacity. Doctors gave her 1-4 months maybe. Dr. O'Bryan told the family to have her checked for celiac disease. The doctor thought it naive, and said no. Dr. O'Bryan visited her, took the blood himself and sent it to a lab. She was celiac. She went gluten-free and lived another 18 months. (The details may be slightly inaccurate, but that's the gist).

Most of his speech was about establishing the connection between diseases and gluten with published papers from various esteemed medical journals. You can find a lot of them yourself at . If you're interested in a subject 'lupus gluten,' 'scleroderma celiac,' etc, you might find that someone has thought about it, and has studied it, too. Celiac is but only a small part of the gluten sensitivity spectrum. People's causes of death are likely attributed to the wrong disease process and gluten could be the underlying culprit.

One thing he INSISTED upon is that when one goes gluten-free, one should also go dairy, caffeine (yes: no coffee or decaf, yes, you can have green tea), sugar and alcohol free to heal the gut.

He also said that Type I diabetics, caught early enough before beta-cell burnout, can save their pancreas going gluten (dairy, caffeine & sugar)-free. The trick is to catch it. Too often kids are diagnosed when they are 5 or 6 or later, when if they were tested for celiac by age 2, the outcome might be different.

Dr. O'Bryan lecture: , , .


SUGAR info: (sugar-free does not mean fruit-free, btw, unless you have bg or yeast/candida issues. Sugar feeds bad bacteria and causes pain and inflammation. Sugar feeds cancer.)

Reasons to go sugar-free: , Jimmy Moore/Nancy Applegate podcast
Ann Louise on sugar detox:
Dr. Mercola (author, Sweet Deception) interview w/Dr. Johnson (author, The Sugar Fix): (related to high uric acid ie gout & high blood pressure)
Sugar, the Bitter Truth (93mins via Dr. Lustig):
Sugar, the Bitter Truth "The Short Version" (11mins via Sean Croxton):


-Caffeine raises blood pressure and increases cortisol, your stress hormone.
-Continual caffeine is an irritant to your gut lining which creates inflammation; it slows transit in sm. bowel, hastens it in lg. bowel. Your body loses its own ability for motility and becomes dependent on it.
-Caffeine equaling 2.5 cups or more can promote calcium/phosphorus loss via urination, heightening risk for osteoporosis. Too much caffeine causes dehydration via urination and can also upset calcium/magnesium balance to cause kidney stones.

  Member Comments About This Blog Post:

MICHCAT17 6/17/2010 10:00PM

    You wrote: One thing he INSISTED upon is that when one goes gluten-free, one should also go dairy, caffeine (except green tea), sugar and alcohol free to heal the gut.

I have to ask (because I LOVE my cheeses and morning tea), why should one give up all that too? If you give up gluten and you are feeling better - isn't that enough? Obviously I'm still learning about Celiac's and apparently I have a lot to learn. Three weeks into my diagnosis and I finally made an appt with a nutritionist on the 24th.

I'm nervous about what else I'm missing about the diagnosis....


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DTCELLO 5/29/2010 4:49PM

    Hi, I feel overwhelmed at the level of knowledge on the "pubmed" site. Is there a site that makes it a little "user friendly"?

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JPR-ARTIST 4/29/2010 11:56AM

    I am very interested in this study, and will check in often.
Working at eliminating the white flours.

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GOODHAPPENS1 4/21/2010 3:52AM


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2CATS2LOVE1 4/20/2010 5:20PM

    Thanks for sharing that valuable info. I know that when I go sugar-free I feel so much BETTER! When I do eat sugar my gut feels irritated, gurgles and is very gassy. Not a pretty picture to be sure. I cut the carbs AND the sugar AND the bread and feel fantastic! By the way, Dot, I am reading the NEW DR ATKINS book. It's majorly like the old version but allows a little more freedom. Not as restrictive.
emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

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TMBTTLES 4/20/2010 9:43AM

    Thanks for sharing! Great story and the many links that go with it, interesting!

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POEKSTER 4/20/2010 2:17AM

    Poor DD to be dragged to an education scene outside the school curriculum emoticon

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RANJINI4 4/19/2010 8:03PM

    Wow!Interesting stuff!I am considering going gluten free not only dueto food allergies but because of having A+ve blood group!Thanks for all the info!

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WALNUT5612 4/19/2010 10:56AM

    That you for sharing!!

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MORTICIAADDAMS 4/19/2010 10:40AM

    Maybe your daughter will be on board now.

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JANETX62 4/19/2010 8:28AM

    Thanks for sharing the above information, its very interesting.

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C4CHRISTINE 4/19/2010 7:23AM

    Hmm, interesting to see that he insisted on cutting caffeine, sugar adn dairy too. Just for the healing period of forever?

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