Sunday, May 11, 2008
I don't think I ever paid attention to my gut - my brain was too fuzzy and everyday life took presedence. There were two times I'd actually "dieted" gluten-free, but didn't describe or know it as such, and I didn't recognize that that's WHY I felt so much better. I'd always felt the way I felt, ya know?
When I was in high school I was the fat friend in the group. I wanted desperately to fit in (cause I was always the new kid), so I did a liquid protein diet and drank chicken broth for 10 days. My energy soared and I felt great -- people were so concerned, and rightly so, but what I couldn't understand is why did I feel so good? I think of Oprah who did the same type diet in the mid-80s and lost all that weight and now has a thyroid problem like me. I think of Beyonce who did a lemon juice fast before Dreamgirls and how she spoke of how great she felt.
The second time I did was around the time of my hypothyroidism diagnosis in 1996. A friend who thought her daughter was having troubles in school told me about a book which discussed "leaky gut." This was 1997. I read it and tried (it was hard!). I lost weight and again, felt GREAT! We were moving, so I went off the diet and ended up in the biggest fog of my life, then HUGE depression, Prozac and aches, pains and fog - oh, the fog. Then some occasional diarrhea I associated with the flu, the tiredness, etc. Life was SUCH a chore.
If I'd known about WHY those diets were working for me, it'd been nice! (The crux of it: wheat and sugar free.) Jeffrey Bland, PhD is the author of the "leaky gut" book pictured above. I still have it. He promotes functional medicine ... It's ironic how I've just learned he went to school at The Linus Pauling Institute (from his website www.jeffreybland.com ). He's pretty brilliant. I mentioned my story to the PA at my recent endocrinologist's appt. She told me she agreed about Dr. Bland. I was surprised someone knew of him - he's not very mainstream. She told me a rep from his company will be visiting their office soon because he's coming out with his own line of meal plans.
Here's a link of him interviewing a surgeon who moved into functional medicine. A little over half-way, the surgeon shares an interesting patient history about someone who really had celiac. tinyurl.com/3a8ecx
Thursday, March 13, 2008
My blog title is Ernest Hemingway's shortest short story. What a life he had. I've come across his granddaughter Mariel Hemingway's blog, ( bit.ly/marielnov2007 ) and can't help but be inspired by her clean living. She advocates quietness as a health need. I like that, and I want to think more about it… when it’s quiet ;). Our road to gluten-free was probably very different, but we share a few things in common regarding family history (besides Nordic/Celtic origins): alcoholism and suicide.
Alcoholism is a form of grain intolerance, if you think about it. Look at Arizona’s Pima Indians (highest? diabetes and alcoholism rates), how Native Americans and Asians, in general, are intolerant to alcohol. They are not grain-based cultures, more likely corn and rice (and how ‘bout the luck o’the potato-eating Irish?).
Her family is what movies are made of – fame, money, smarts, adventure. Mine? Not so much.
Her great grandfather (Ernest's father): CLARENCE HEMINGWAY –
Suicide. Country doctor suffered alcoholism and complications from diabetes from hemochromotosis, also known as "bronze diabetes" or "iron storage disease." It’s an inherited metabolic disorder present from birth and causes increased absorption of iron in the gut. Over the years, massive iron deposits accumulate in the body's organs, eventually causing irreversible damage to the pancreas, joints, glands, liver, and heart. Such damage can produce an array of physical symptoms, increasing in number and severity as the patient ages.
Her grandfather: ERNEST HEMINGWAY-
He probably had undiagnosed hemochromotosis (genetic testing came about around 1996). From www.wjgnet.com/1007-9327/12/1503.asp : “Celiac disease has been associated with hemochromatosis, which is not surprising, since both are relatively common disorders based on a common Celtic ancestry.” quote (Wikipedia) “He had myopia (near sightedness), insomnia, … His blood pressure and cholesterol were perilously high, he suffered from aortal inflammation, and his depression was agravated by his heavy drinking.”
“He was receiving treatment in Ketchum, ID for blood pressure and liver problems — and also electroconvulsive shock therapy (ECT) for depression and continued paranoia, although this may in fact have helped to precipitate his suicide, since he reportedly suffered significant memory loss as a result of the shock treatments. He also lost weight, his 6-foot frame appearing gaunt at 170 pounds.
Hemingway attempted suicide in the spring of 1961, and received ECT treatment again. He took his own life on the morning of July 2, 1961. Hemingway himself blamed the ECT treatments for "putting him out of business" by destroying his memory …” (note that alcoholism causes B vitamin deficiencies which also can cause dementia.)
Her great aunt: URSULA HEMINGWAY-
Ernest’s sister. Killed herself due to pain from depression which may have been over having had three failed surgical procedures for cancer (this is what I surmise).
Her great uncle: LEICASTER HEMINGWAY-
Ernest’s brother. Had Type II diabetes and “many operations” and killed himself.
Her father: JACK HEMINGWAY-
Did not commit suicide, but died from complications following heart surgery at the age of 77 in 2000.
Her uncle: GREGORY aka GLORIA aka VANESSA HEMINGWAY-
Per Wikipedia “died in 2001 of hypertension and cardiovascular disease … He was a transsexual and eventually had sex reassignment surgery. … He was a doctor, but authorities in Montana did not renew his medical license in 1988 because of his ongoing alcoholism. He had also battled bipolar disorder and drug abuse for many years."
Gregory’s daughter, Her cousin: LORIAN HEMINGWAY-
She wrote about her father, and her drug and alcohol abuse in a Pulitzer Prize nominated book “Walking on Water: A Memoir.”
Her sister: MARGAUX HEMINGWAY-
She suffered from dyslexia, bulimia, epilepsy, alcoholism and depression. After a ski injury she was immobile and quickly gained 75 pounds leading to worse depression. She seemingly recovered, but her body was found in a hotel; ruled suicide by drug overdose at the age of 41 in 1996. (Gluten-free ketogenic diets are helpful for epilepsy, and eating disorders can be linked to undiagnosed celiac disease.)
The link below is a Mercola.com article written by his partner, Joseph Brasco, a gastroenterologist, regarding grain carbs, heart disease, diabetes, cancer. What say you?
(P.S. I had a pretty starchy day yesterday, so today I'm back on the wagon!)
Sunday, March 09, 2008
I can't imagine what it would be like to be inside Linus Pauling's brain. It would make my mind crack! :) I'm such a humble being by comparison - but I can appreciate and be inspired by his work, most important to me (because I don't understand the nature of his other works!) is his work with orthomolecular nutrition. Despite his Nobel prizes (the only person to receive two, one for chemistry, the other for peace), he is maybe more well-known for his bestseller book about Vitamin C and the common cold. In the course of my reading about him, I found that his wife, Ava Helen Miller Pauling, died from stomach cancer. I would like to learn more of what they tried to do to save her. I would like to know what her diet was. She was an inspiration also.
Here's a blurb I found interesting, and it leads me to believe that she ate whole grains.
"While Linus Pauling was an internationally renowned scientist, Ava Helen expressed opinions on science as well. In a lecture on “Why do we have two sexes—man and woman?” Ava Helen said, “I believe woman to have been the first scientist. She must in her cave have been aware of the effect of temperature, water and the storage of food—the gathering of edible grains and fruits must have been her job as the warriors were off to battle.” In a letter written in 1980, Ava Helen recalled her remarks at an international congress in Yugoslavia in 1957 on the nature of the hydrogen bond. At the congress she said, “The only bond more important than the hydrogen bond is the human bond.”
Linus Pauling was devastated by his wife’s illness and eventual death from stomach cancer. He did all he could to try and save her life, including treating her with high doses of vitamin C, which he later used for his own cancer. Both Linus and Ava had been taking high doses of vitamin C (about 3 grams or more daily) for many years because they found that they had greater energy, an increased sense of well-being, and fewer colds. Ava Helen Pauling died in her home in December 1981 after a five-year battle with her illness."
It makes me wonder.
Oregan State University has a great site regarding vitamins. See the active link below.
Tuesday, March 04, 2008
Well, as you may have read, I got the results of my second parathyroid hormone (PTH) test and it continued to be elevated. Your parathyroid is a thermostat for vitamin D and calcium regulation. If you've had chronic Vitamin D deficiency, your parathyroid may get "stuck" distributing PTH, even if your D deficiency is relieved with supplements or sunshine. Often there's a correlation between having low Vitamin D and high calcium. However, my calcium is the lowest of the range, which is somewhat atypical, but apparently that doesn't let me off the hook. If your PTH is elevated (even if it's high once, lower the next time) -- you need to have a scan to check for tumor growth. My having osteopenia is consistent with symptoms for hyperparathyroidism.
The doc's office scheduler called to schedule my "sestamibi scan" for three weeks from now; all I'd have to do is take a radioactive pill she said. They'll scan me at 15 mins, then again at the 2 hr mark. I know I have to find out the ingredients in the pill for hidden starches, then the sources of the starches or the country of origin. It's Gluten Detective 101. I feel like the nurse thinks I'm a whacko for asking so many questions. I'm also to stay off all supplements and my (((((GASP))))) Synthroid during this time. I called the Radiology Dept at the hospital and the tech said I "don't" take a pill, but rather I get a shot. Well, okay, no detective work needed - unless there's a different allergen like ocean proteins/shellfish in there, cause I'm anaphylactic to oysters. Man, I'm a high maintenance babe!
I've been hemming, hawing, and fretting about this test. Didn't want to believe I had one more thing to challenge me. I wanted to talk to the doc to see if there was some mistake (drat, no) or if I could change my diet or supplements (drat, no). The nurse seemed perterbed with my questions, which made me uncomfortable. In the course of the conversation she said two things that ultimately made me change my mind.
1. Complications from unresolved PTH can lead to heart attack, and
2. By getting the homework done for the endocrinologist- we'll call him Doc #6 :), I'll get an appt more quickly than without. She said the wait generally is 3 months; there are only 4 in town.
From my online reading (parathyroid.com), I DO have a lot of symptoms:
(marked w/an *). You do not have to have celiac to have low Vitamin D - which seems to be a media darling this year - GREAT!
BONE PAIN* (I'm sick of it! My first year gf I felt so good and was on Vit D Rx. The first six months I played it mild and didn't go crazy with exercise .. I did ride my bike 9 miles around a city lake and I felt AWFUL during and after! The next 6 mos. I joined a gym and was sore constantly. I got tired of the pain, and quit exercising.)
DEPRESSION* (this was resolved for me while I was on Vit D Rx my first year gf after dx, but I've been slipping for a little while now)
ACID REFLUX* (Historically, very much so - esp after CD dx it was the worst around that time with weight gain. Today it's very very mild since I changed eating habits and foods) - isn't THAT interesting though!
CARDIAC ARRHYTHMIAS*!!!! (I've had them for over 8 years, mentioned them to three or four doctors ... so, this was a long time in coming! Prior to that, when the psychiatrist gave me Provigil for staying awake -- I had heart palpitations with that also. It made my heart feel heavy, so I cut my dose in half (yikes).
I also had those "GERD" heart attacks a few years before the palpitations were more prominent. I have never had pain/angina like I read about. My left ankle has had edema/mild swelling since 1998 when I was dx with depression and on Prozac, and before that, when I was PG in 1989 I had horrible edema (can you say elephant legs?)... do you think women who have edema during pregnancy could really have hidden heart problems? A few docs through the years took xrays, but otherwise said they didn't see a darn thing wrong. I just don't understand!!!! I tried to be a good patient! Thank goodness for the internet! I guess who would think: Vitamin D deficiency and edema/heart problems?
HIGH BLOOD PRESSURE (Historically, mine's been low; since CD dx it varies, but the past four or so months since my hematologist told me to take my bp when I was having palpitations -- it's lower bp.)
HEADACHES (hmm. Had them before CD dx, they went away with gf diet). Today my TOM started - same day as stopping Synthroid/supplements per nurse's instructions. I have a very nice big headache. :(
Headaches are the #2 symptom for young people (kidney stones is the first). The longer you don't get diagnosed, the more apt for strokes and heart attacks.
Please read parathyroid.com for more info - this is another highly undiagnosed disease that could be fixed with surgery. Are you osteopenic or have osteoporosis? It could be due to hyperparathyroidism!
I'm looking forward to getting this overwith. The worst part for me is not taking my Synthroid. Day 1 and it already sucks. Bear with me whilst I complain for three weeks. My sister told me to meditate. At first I wanted to meditate her face when she suggested it - see parathyroid.com for "cranky" symptom :). But I will try as it's a reason to maybe take a little siesta :).
So, why Toni Braxton you may ask? Well, she has a heart condition, and her son has autism. I have a heart condition, and I have an Aspie. I may be simplifying things, but I wonder what else we have in common? I sure can't sing :).
P.S. Toni's sister used to be on the now cancelled show, Starting Over, about women "starting over" - she suffered from depression.
Friday, February 29, 2008
(I have to laugh ... I want to put my life story on my SP page ... well, no one would read my first blog entry! lol Anyway, I can't keep adding to it, so I'm going to start using my journal ... dah!)
This pic was taken about 2 years before my diagnosis, at age 42, while on a trip to Southern Utah. For me to have hiked *up* and down 3 miles in 100* heat to get to Delicate Arch at Arches Nat'l Park was a feat for me. My kid stole my water, too, stinker! I felt so tired I could feel a "pull" or pressure in my face even. It sounds like it would have been a blood pressure problem (though mine was typically low) - look at how red my face was (rosacea)! Can you tell how sick I really was on the inside and through the smile? I didn't know either, nor did my doctors. When you think about it: my sickness is my fat. It's showing all over.
Today's thoughts: My first year gf was great, healing, and made me optimistic again. I was encouarged to have energy for weight loss because of how "light" I felt; I'd sunned my first summer - got plenty of Vitamin D with oil caps Rx from Doc #1. My depression left me. I joined a gym, including their Biggest Loser Competition for $325 for the trainer, just sure I would win. I was very happy and motivated. (Also a bit tired of being in gym clothes all the time!)
I worked out 5 days a week pretty hard for not having exercised in years (not including start ups and stops through the years, and basic walking). I have a history of pooping out. Pun not intended. I would think anyone would think I was lazy. I was just tired and sore. A lot of celiacs will tell you about fatigue. I didn't have "sudden" onset symptoms - mine were chronic and low-grade/just below the radar. No obvious anemia, just depression then the other symptoms I've mentioned, added on throughout the years.
Anyway, six months after diagnosis I find SP and the 100 lb Club team - still miss quite a few people over there (hi Poekster, Dawni, Mikeo, 5Kitties, etc). I'd just moved to a new state, was friendless, and found new friends in weight loss online. I was obsessed, but we'll talk about my "OCD" or overfocus issues in another blog entry. I was working out 1 hr with a trainer and 1 hr cardio on the elliptical 3x/week. When I see those BL contestants sweating and grunting and working hard: that's how I felt. I was giving it my all and it was work! In between those days I'd go to the gym and do elliptical for an hour/stretches/sometimes a circuit. My trainer tested my cardio on the treadmill at our first consult and could never get a heart reading. For 6-8 weeks I kept it up and lost a measley 14 lbs. My cals were in range. I may have been eating too much fat. I thought it was about "calories"? And whomever I asked about their Pain Quotient ... they were 'over' it in a few days.
The big last weigh-in for the competition my car broke down at the high school dropping off my kid. No problem: I call AAA and decide to walk the 3 miles in 30*! They were surprised to see me and were sorry to let me know that another competitor had lost 18 lbs. Good for her really - "She'd lost her water weight dagnabbit," I said to myself. But what a disappointment.
So not winning that $750 jackpot, and the fact that I found out I had an umbilical hernia and would need surgery someday (doc said "lose weight!") made me stop exercising. I was afraid to do core exercises to pop the hernia. Also, a big contributing factor was that I was sore.
You never hear the contestants on BL talk about how sore they are -- I guess they don't want a bunch of "whiney-butts" spreading their negativity in the forefront, cause it's not the point. But I'm very curious about it - I want to hear every moan and gripe to compare to my own story. Personally, when I was working that hard, I was sore daily, nonstop for that entire time. It never went away. Stiff, achy muscles and tight hip joints especially. After the competition I tried working out less because it seemed I just took longer to recover. But then I wouldn't lose weight. I felt like I was working out for nothing. What was "right" for me?
It has been 8 months since I quit the gym and haven't been back (I'd lost 31 lbs there and through SP. I have gained back 20, 12 since December). I paid automatic withdrawal dues up until last month - they require you to "go into" the gym to quit rather than do it over the phone. (My procrastination was a blatant disrespect for money; though I had all those good intentions of going back. I bought a new-used car and needed the money - that was my incentive to get my butt over there?!
Reminder to self: DOING SOMETHING IS BETTER THAN NOTHING - even if you're sore!
So, let's fast-forward and get to the Osteoporosis and Hyperparathyroidism part, or the Moans, Bones, Groans and Stones:
1. I've had heart palpitations for at least 8 years. One doc, pre-CD dx, gave me potassium and magnesium supplements, but they didn't work because I was malabsorbing. It was about this time 8 years ago I found myself having a couple bouts of unexplained diarrhea. With the flu once, and esp if I'd eaten ice-cream or sunflower seeds (fat malabsorption). This came and went. I didn't have IBS daily like maybe 40-60% of celiacs do.
2. After-CD dx and living in a different state, I visit Doc #2 (Doc #1 was out-of-network and out-of-pocket -- good as he was - he's the one who gave me Vit D Rx), who said "Everyone has palpitations - even I do," and told me not to worry. I visited again with concerns and wanted my thyroid checked (which is all I could think of), which on one visit of two, was actually a bit hyper ... because my villi were healing, I didn't need as much Synthroid I surmised. Well, even with lowered Synthroid dose, my heart's still aflutterin' at odd times.
I decided to take matters in my own hands and not wait for Doc #2's referral. I contacted Doc #1 and he said to go to the "Best Cardiac Doc" in the state. I made an appt. The day before the appt. they call and cancel my appt! What?! They hadn't received my med. history. I call Doc #2 and nurse said he thought I didn't need the "Best Cardiac Doc" ... he wouldn't transfer my med history! ??? I talked the nurse into it ... and when I arrived the next day for the appt, Doc #2 called to cancel the appt for me. Okaaay. Doc #2 said I didn't have necessary tests to go up the ladder so high ... and so he finally sent me to another great heart doc for an echocardiogram. Never met Great Heart Doc #2 (has a good rep), only the tech who did the test. A report was sent to Doc #2. I had a little something wrong with the left valve apparently: Nothing to worry about. Meanwhile, my heart is still occasionally palpitating, esp after exercise.
3. Frustrated with Doc #2, I don't see any doc for a few months and don't know where to go/what to do. I decide to see Naturopathic Doctor who refers me to Doc #3 who believes in some holistic treatments as well. I tell him about my palpitations and ask for more thyroid tests - my TSH is normal, but my Free T3 and Total T4 (or the other way around) are elevated. He lowered my Synthroid dose again - this time, the third time, wasn't the charm.
Five weeks after, I recheck in with the hematologist (whom I'm not giving a Doc #!) for iron testing followup. Forgot to tell him that the iron was helping with my hair loss. I brought up palpitations to him, so he checked my TSH: 15ish. (You'd want between 1-2.5 for "optimal performance").
By the sixth week I crash. I'd just returned from Miami and in time for our famous local ice-storm/power outtage. Four days of 40* temps in the house and huddled and sleeping in front of the fire. Three or so days of handsawing broken trees and dragging them to the curb. No shower, no water. Got toilet to flush with buckets of pool water - brrrr! Was very grateful for that! :)
But I was miserable. I called Doc #3 for followup thyroid blood labs (since he's the one who writes the Synthroid Rx) - and my TSH is 22.6 or something wicked I've never had so high. Waaa!
4. My dose has gone from .175 to .150 to .125 to .100 .. the last one: not so good. I secretly think it was too soon to change down. I'm back up to .150mcg now. Those 6 weeks back into "normal head" were looong. I couldn't/can't think straight/concentrate! I can't read the umpteen books awaiting me stacked so invitingly by the fireplace.
5. Okay, somewhere in between these appts I visit my new OB-GYN, whom we'll call Doc #4. We do annual exams, everything's fine. I've never had my hormones checked mainly cause I've always had regular TOMs, but I wanted to know the skinny (or the fat of it!). We talk. He tests things I don't even know he's going to test: my A1C for example (5.5). And other tests I don't know how to comprehendo. He also adds in a PTH test. Calls me on a Sunday to tell me this is a "little" high, he wants me to go in for an ultrasound scan (take a dye). My last experience with a dye didn't go so well (anaphylactic shock), so I'm putting the breaks on. I ask him to tell me about this PTH test.
PTH: parathyroid hormone. Your vitamin D levels affect your parathyroid hormones which affect your calcium levels, which all affect your kidneys. And your calcium also affects your heart and muscles ...
My first test was 83. Top range shouldn't be over 80. I tell Doc #4, oh my: I had such a bad month with the lowered Synthroid dose, I didn't eat well: craved Yoplait as usual, and didn't drink water at all! I drank coffee for fake energy. He said, Okay, I had to go back for another test in a month. I wish I'd have had the energy to document my food in my SP journal during this time!
They call me to tell me that everything is fine! YaY~! right? I always ask for copies of my labs and when I get them ... there's no PTH test ... I call them back and they've erred. Please come in for free test. I do, they call on Monday to tell me that my new results are 120! yikes! I'd drank 4-6 glasses of water a day + other drink (coffee, tea).
If you google PTH, you'll find a famous saying, "Moans, bones, groans and stones." Well, I've had all three - just no stones. Thank gawd! Again, I believe when I look back, that I just had a feeling that my vitamin D was low last year; it started out with waking up early at 4am after I'd been sleeping well.
The last time Vit D was checked before December by Doc #3, was by the Gastro (Doc #5?!) at my annual celiac followup in March. Stupid me had taken my last Vitamin D pill, 50,000 iu!, one week before my D blood labs - so I believe the results were artifically inflated: at the time: 63 (high range is 60 I think). You want a lab of at least 50 - see the Heart Scan Doc blog written earlier. So I don't know how long that lasted. I got gerflempt about when to take what pills - don't take iron with calcium supps as they bind together. And take probiotics on an empty stomach, etc. Take a multi. I just gave up. Another huge mistake for a celiac!
6. Doc #3 didn't think my Vit D lab of 20 for D3 was bad. No action taken in Dec. I didn't feel good about this, but he wouldn't hear me. What am I to do? Find a new doctor AGAIN?! I'm sure I must have mentioned something to my OB-GYN about it during one of my appts. Apparently, his mother had hyperparathyroidism, he has hypoparathyroidism. And that's why he tested. How lucky is THAT?!
I know this is a long story, but compared to how I've felt, it's nothing! It just goes to show you should listen to yourself. I didn't have the energy to recontact Doc #2; his office was far away and I'd get lost driving there (since then, I bought a new-used car with navigation for people with memory issues! The first time I tried to "navigate" somewhere it couldn't find the street I wanted - ugh! lol ) From what I've read, it doesn't matter that my calcium is lower range. (Usually there's a high calcium, low vit D correlation). If the PTH is high - get a scan. Which brings me to my next issue.
I don't want to swallow a radioactive pill! It's gf I hear, but radioactive anything in me? Why am I tested like this?! I will continue taking my vit D supplements, and ask for another PTH retest next month instead. :)
Secondary hyperparathyroidism does have connections to celiac disease, obviously because of the low vitamin D levels. But anyone having low vitamin D should be checked. It's one of those silent killer things. You don't realize how bad you feel until you feel better. I've also learned that if you have parathyroid surgery, sometimes, by luck, the doc might also find nodules on your thyroid - or the other way around - even though the two work independent of each other. I hope you read the link/article for a better idea of symptoms and what nots. Just like celiac, this is nothing I ever expected.
More to come as it develops. And I hope it's not a tumor! :)
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