Sunday, March 23, 2014
Much needs to be shared and I know I'll forget some, but here goes.
My Christmas present 2013 was getting an endoscopy from a new gastroenterologist who wanted to check on the status of my villous atrophy/celiac (it has been since Jan 31, 2006 since celiac endoscopy/diagnosis). He snipped a bunch of biopsies, and I awaited 10 days for results: celiac villous atrophy was great, no problem - yay (I was a Marsh Stage III meaning my villi were nubbins (out of IV who often don't respond to gf diet measures) and though they didn't classify my current stage, he said it was normal.
After the endoscopy as I'm coming out from anesthesia, the doc said I had gastritis, suspected h pylori, and told me I'd be as good as new in about 6 months after antibiotic treatment. That's it: no followup appt for me to ask questions (my favorite). :) SO, I called his nurse at least three times with a bunch. You know I've been online reading scary things you're not supposed to "believe." One of my online resources was from David Hompes bit.ly/OLtZdV . I bought his ebook on HP. He suffered food poisoning and figures it the source of his HP. He now helps people overcome gut illnesses. He's also on youtube bit.ly/1jjJ4B4
Some of my questions for the nurse/doctor:
1. What strain of HP do I have? Some make you more prone to stomach cancer.
A: The strain is not tested for, sorry! I asked if I could obtain the pathology slides and find out, and I can't remember what the nurse's response was. That's because I have limited recall due to not enough B12, more on that later.
2. How do I know the course of antibiotics or "triple therapy" worked? "Triple therapy"-- two antibiotics, tetracycline and metronidazole, to eradicate the bacteria, and bismuth to help relieve acid reflux). I was self-medicating GERD for the last ~18mos. w/low histamine diet which ended up also helping my "fibro" pain - the less I ate, the better I felt (you just can't sustain life in a healthy way and eventually starve! More on THAT later!). If you've followed me these past 6 yrs you know that once I gave up gluten that my reflux and depression was so much better. However, when I first went gf, I had no idea what to eat (I went cold turkey) so I turned to having A LOT of dairy in the form of Yoplait yogurt (note to self: h pylori LOVES dairy and fat...and salt, but more on that later). My GERD raged w/dairy, I got Rx'ed some Nexium, read how it promoted malabsorption of B12 which I was trying to overcome, so then I Rx'ed myself with juicing and alkaline diet. In hindsight this was good and bad. Good to relieve symptoms, bad because they symptoms persisted because it wasn't really addressing the underlying cause of the GERD.
A: you just go by symptom resolution. Or you can get another endoscopy (did you know that you can also PICK UP the h pylori bacteria from unsterile scope equipment? How would you ever find that out unless it was catastrophic like the dentist who didn't sterilize his tools and spread Hep C throughout the community? Or the gastro clinic in Vegas who reused scopes and spread _____?(insert malady).)
I can't remember other questions and will update when I do.
My alternative testing in the past both helped and didn't help. Having done my DNA via 23andme was handy, but not the smoking gun either. The test which could have turned my health was last year around this time.
I had the Genova NutrEval (had months of anxiety re: cost as insurance would not cover it - it was "unnecessary"). That test indicated I had high taurine and high urea (not high ammonia which is also part of the urea cycle and should have been high. At this point I don't understand why). That will make sense when I make semblance of my notes from Dr. Amy Yasko's video on h pylori. HP is prevalent amongst children with autism. I'm on the spectrum, and I may have had this since childhood. I remember asking my ND the significance of such high taurine and urea, but she didn't focus on that part of the test, instead pouncing on the fact that my B vitamins were all deficient AND not working (cool test that can show that, eh?). She said it was likely to due to my DNA somehow. This incomplete information.
Here is a great synopsis which covers what HP can do to a person. It has ruined my quality of life so much that I was about a shut-in with no self-confidence due to lack of memory ability. My body pain and malabsorption of vitamins also prevented my living to full potential. I HOPE fixing this avenue to a leaky gut will be the fix for my body pain. However, other things due to HP maybe might be behind that as well. That's for another blog entry.
Another test which was disappointing was the Genova Comprehensive Stool Analysis which I blogged about in October. I hurried to get the test in before they changed it thinking it'd be a good thing. Well, the old test HP wasn't considered an "add on" which it now is (the old test was the #2100, the new one is the #2200) so you'll pay extra. The good news is that my doctor's office even offered the test (previously I got it through my ND). The bad news is that insurance just recently sent notice that they want more "info" from my MD, so they haven't been paid.
My Genova h pylori test was "negative" only two months before the endoscopy ... hmm. I called them, and the phone rep said they test is not via DNA probe anymore, but by enzyme immunoassay which is gold standard. On the old #2100, only POSITIVE results would have been CONFIRMED by enzyme immunoassay. I was to have my doctor call their doctor and that just hasn't happened. My doctor is too busy when I bring things up, there are other things to fix more important (yeast now, but more later like I said), but I should see if I can get another test to verify eradication via antibiotics maybe.
I hope to share detailed notes from Dr. Amy's first of two videos on HP in the near future. I do so in an effort to remember, because my memory is so poor.
Oh, get this: I tell my mom my diagnosis and she tells me that my father used to take TUMS for that and that's why he had his fundoplication. Never did she know or think to share this info because it runs in families and they should be tested. He likely has dementia due to this, so I asked her to have him tested again. I doubt she will. *shakes head*
Hurriedly I had DH and DD take same test (theirs was #2200). I paid extra for the HP add-on on DH's test, and who knows why, but I DID NOT add it on to my DD's test. I think I did hers first and maybe remembered later for DH. DD handled the poop sampling MUCH better than DH who was a big sissy carrying on (the guy who guts animals to feed the family, go figure). DH was negative (go figure as we swap spit and all). DD I really feel has this and I need to follow up at her doc appt tomorrow in fact. I had her worked up - Spectracell, hormones, Genova stool, bloodwork, and urine. More on her later, too, after the appt. where we go over results. She has an autoimmune disease and it makes me sad. :(
EDIT: I started antibiotics on Jan 19 for a 10-day course (4x/day on empty stomach I think). PITA. On the fourth day, I got what seems like an "underground" zit on my left nostril. I left it alone. Second day it was larger so I felt around it and tried gently seeing if there was a head. No head, but I skinned my nose just from gently touching. Next thing you know I have a scab. Next day it's turning dark colored. Next day the infection is spreading up my nose to the bridge. I'm feeling very poorly and tired by then. I'm on abx already, but when I call gastro to ask about why this might be happening, they suggest I need a different strain of abx. So I squeeze into PA appt because doc is so busy, and she doesn't even want to touch it and has doc run in anyway (good). He gives me topical cream Rx for some type of staph infection (why don't they culture these things?!). Why don't I think to ask for culture?! The topical abx works and I'm left with a nice divet on my nostril now. It took what seemed like forever for the black scab to fall off so I could use vitamin E capsule oil and when I remember, some aloe vera plant on it. I have pictures, but I'll spare you. ;)
My symptoms of H Pylori:
1. Sometimes feeling full too soon after just starting to eat (I remember asking my 1st gastro about this at my FIRST followup appt 3 mos. after my celiac dx in 2006! He shrugged he didn't know).
2. Sometimes feeling starving after eating. I was content having just eaten, but SO hungry I could eat a horse an hour later. HP messes with your leptin and grehlin. FRUSTRATING!
3. I complained years ago in a low-carb forum I think it was, how I felt crumby on low-carb, i.e. no energy. H pylori likes it when you're in ketosis. It's very unhealthy to be in ketosis due to possible kidney issues (see article referenced above from MyGutsy) if you have HP
4. Depression, fatigue, lethargy (HP messes w/flora which helps build B12 used to combat such wonderful things as depression, fatigue, lethargy)
5. ANXIETY big time. BIG BIG TIME. I've read forums where people think they're having a heart attack or panic attack (going to ER even). I had a heart attack. Initial browsing at pubmed has connection between HP infection and atherosclerlosis (increased Nitric Oxide and inflammatory cytokines, also increases fibrinogen - mine's high, too. The ND gave me nattokinase to take for a couple of months and then I'm to recheck levels). Hmm.
7. About a handful of times I can say that I had burning in my stomach. I remember that last time I was shoveling snow from the driveway and I grabbed my gut but didn't think twice about what was really happening.
8. Neurotransmitter abnormalities (messes with your tryptophan and serotonin ++)
9. A handful of times I may have been bloated. I can't tell you I associated the bloating with anything as I wasn't documenting my diet (too bad, but I was just too anxiety-ridden and stressed with moving -- which was exacerbated by the HP stress/anxiety)
10.Less than a handful of times I had nausea.
11. I almost forgot: heartburn/GERD!
(here's a good overview though I'm not recommending the link/advert: bit.ly/1oRd2vg )
12. Headaches. I thought they were blood sugar related. Nope. I would sometimes go to bed with them, and more often wake up with them. I never would take "something" for them except maybe magnesium and/or water. Didn't help really. Maybe it was ketosis related. Used to have headaches pre-celiac days and they went away w/gf diet. If I were to have really paid attention (I denied they were happening!), I'd say they started about three years ago? Not sure.
I would say the constant hunger was the worst. I'd think of starving people all over the world, and feel bad that I was eating and starving at the same time. DD has extreme burping (like a sailor when she'd come in the door.every.day), bloating, and we both have weight GAIN, not loss (due to cortisol -- which HP can mess with blood sugar regulation also, but weight loss is a symptom also). She also has low manganese which is often seen in HP (her Bs are pretty good according to the Spectracell, except her B12 is borderline low - indicative).
I plan to use herbals to treat myself next. At the time of dx I was taking HCL (hydrochloric acid) capsules with larger meals - up to 5 of them. When I talked to my genetic counselor he said to cut back to 2 each meal (HP likes low or high stomach acid). When I did, I had less anxiety. I don't understand why right now, but that's been good. Otherwise, I have a ways to go to recover still. We'll see what the doc has to say about DD tomorrow. HP can come and go, so it's important to keep up your gut health. Great.
I have lost 14 more pounds. When I eat more normally, I tend to gain. My body really doesn't want much, but my mind does. I'm suspecting it's because my liver is overloaded and needs less to do. I've been known to be wrong (and right) about my health -- it's complicated, haha. That's life for ya! :P I'm hovering around 188-191 right now.
Friday, October 18, 2013
I sent another stool sample Monday to Genova: The Comprehensive Gastrointestinal Profile #2100 ( bit.ly/1cD5Jl5 ). I understand they are changing the tests within this test and not including the parasitology starting Oct. 28th. I was in such a hurry to mail the test I sent it without the cover/box for protecting the vials! I sure hope they get it okay?! ew! The genetics counselor wanted a more recent test. I'm primarily checking dysbiosis/bacterial imbalance within the gut because I believe it and leaky gut (and low DAO enzyme) to be highly likely the culprit behind my fibromyalgia. I'll throw in that I don't methylate toxins well, ie my liver's Cytochrome P450 is off -I know this from my DNA SNPs results from 23andme - also likely due to gluten). Gluten made my gut leaky (I don't have parasites, didn't drink alcohol, nor take drugs - though I have a history of taking a bit of ibuprofen due to monthly headaches prior to my going gluten-free. Gluten-free stopped the headaches. Now I know that headaches can be a mast cell response to estrogen of which I have plenty because I'm overweight. Just "having" dysbiosis keeps it leaky (LPS or lipopolysaccharides, aka bacteria poo, increases zonulin, a protein which keeps open the tight junctions between your epethial cells). I'm still leaking after, gosh, 7 years trying to heal. I need to tighten the diet ship and work on relaxation/being happy happy happy. :) Anyway, I hope to learn more than that from the test, and expect results in about a month. My integrative GP ordered it and will suggest tx, but I also have a genetic counselor I started working with in May who'll make treatment suggestions. He said I also need to test fibrinogen and vitamin D (to also include the kidney portion or the 1,025 OHD ( bit.ly/ltovitd ) (Oy. My computer's needing a hard drive and is so slow right now. - ha! I've worn out my mac figuring out my health, so add that to my investment of money, time, energy, blood, sweat and tears!) The Genova test is $411 out of pocket. It's covered by a lot of insurances, but not "four" I was told - and mine was one of the four. Of course.
I'm doing better adhering to my low-histamine diet again. I've lost 7 lbs since last week: 215 to 207. I can always tell when I'm doing well and right for my body because there's a sense of relaxation that comes from it; I can bend with ease, there's a lack of stiffness and inner tautness, if that makes sense. I don't slog out of bed, I kinda jump w/pep and walk gingerly to the water closet. :) I think it's the greens. Greens have magnesium. I need them daily also for my Factor V Lieden gene polymorphism (I'm heterozygous, or I have one abnormal gene from one parent.) I also take 800-1000mg of magnesium as part of my supplement protocol from the genetic counselor. This is what was working for me prior to my appt with him anyway, so I did good there. :)
Yesterday I found that pomegranates are in season, and omg, I bought 4 for $2ea and ate 3! SOOOOO HAPPY! I ate that a .5 lbs of grass fed beef and 1 lb veal, and a cup of butternut squash w/chia seeds. I gained 2 lbs. It's likely because I didn't have enough pre/probiotic/good bacteria (that's how I look at food now: "Will this feed my good bacteria?") and/or fiber - soluble fiber, people - and too much sugar/carbs (nope, it couldn't be carbs as I got about 102g which is fair for me). I walked 2.5 miles and got good rest even without my CPAP which I took in for repair but it didn't need repair, so it still sits in my vehicle. I remember it when I'm getting into bed, and I'm not in love with it, so I say I'll get it tomorrow. *whistles Dixie* Anyway, incomplete and run-on sentences and I don't care. :P
My back's been sore and that's a new one on me. I've never ever had back problems. I've had sciatic in my upper honch for three weeks and I decided to seek out a massage to see if it'd help. This is iffy territory for someone with histamine (likely mast cell) disorder/fibromyalgia because pain and inflammation is already heightened. I tried it anyway. She used an almond/pecan oil I tolerated well (having multiple chemical sensitivity I was concerned of "lemon" or "lavendar" scented oils or something). I've never gotten naked in front of anyone like that before, but she gave me my dignity by having a towel over me and exposing only what she was working on. You can elect to work on areas over another and I chose to not work on my stomach or chest. She worked over my honch pretty good and it felt good. A couple of hours later it didn't feel so good at all. :( By the time I went to bed, it was okay. And I slept well and didn't wake up in pain or anything. $75 for an hour. The masseuse was wonderful, and also does acupuncture which I'm interested in. I don't know if I'd do a massage again ... I would like to take up yoga, but that'll be for after I move.
I've found I do well eating like a diabetic, ie many small meals a day, for low-histamine. It's easier for what little body DAO enzyme I have to process bits of histamine vs 3 meals a day. I kinda feel tethered to the kitchen, and sometimes I have to take the kitchen in my purse (green apple at least, and recently a previously steamed leftover artichoke while on an airplane -- who me? peanuts or pretzels? phtt!).
(That's an artichoke selfie, not a Dotslady selfie - lol)
Got new carpet installed upstairs and it's a new universe up there. It feels good. My closet's a tornado disaster and is next on my list of things to do.
Here's a funny 5-minute comic relief video re: diets/going gluten-free:
Everybody needs a laugh. :D
Friday, September 20, 2013
From Fun: Carry On
"If you're lost and alone
Or you're sinking like a stone
May your past be the sound
Of your feet upon the ground
It's marching music: bit.ly/FUNcarryon for a mellow march/walk. I misplaced my iTouch and I miss my walking tunes.
We got Dd moved into her new apt. and with luck and a prayer she will do fine. That's what I said the first day. Dh and I awakened the following morning to news that there was an apt. shooting her first night at about exactly the time she drove into the complex after work. She never heard or saw a thing! The idea was she could afford this apt. after we stopped floating the rent while she was in school (trying to get her to finish her last year). *sigh* I'm not going to comment further, other than she's outta there asap.
Monday, July 15, 2013
old pic, I've let my hair grow so I can pony-tail it for walking in the heat.
I've been a ghost, so sorry, but it was necessary for me to take a break this last year or so. I have maintained my 40 lb gain because I've not been eating low-histamine (more like potato chips, Starburst, and even ice-cream - I should share THOSE labs). The doc had me change thyroid dose from 150mcg to 50mcg and I'm still astounded at how awful I felt. In my heart I knew this was wrong and allowed it because he was the smart one. I guess he thought by doubling my Cytomel from 5mcg to 10mcg that it was alright, but it wasn't. It has taken 3 more months out of my life. I think my thyroid's been hard to manage because of my stress, well, and my freakingly awful DIE-T, right? What am I feeding the poor thing?! I'm back up to 100mcg Synthroid and 10mcg Cytomel and thyroid labs are okay now. I was so depressed. Anyway, that's just the last three months. If you know me, you know I've tested a few other things since I've been on hiatus.
I got my left kidney (CT) rescanned and the cyst looks stable (though it's unusual to feel a cyst. A lot of people have multiple cysts and don't know until they discover it during an unrelated ultrasound), which is good news.
I sent my bacterial stool sample to The American Gut Project, but won't get results for 6-7 mos. I think it only plots your bacterial content in relation to others on some type of bacterial colony-type map so I don't even think the results are going to be that interesting. What might be of interest is that I'd been eating shabbily, so comparing future tests (I have 3 more kits) with what my diet was MIGHT be interesting - or will it change much at all? I've read it's difficult to change what you're born with; then to be taking antibiotics, drink alcohol, sugar, hormoned meats and dairy, yada? Oy.
I will post separately about my histamine/DAO enzyme test, which I was lucky enough to find a lab in the good ole USA. I'd searched last year to no avail; most labs being in the EU or Australia. It confirmed my suspicion and experience that I am indeed low in the enzyme to break down histamine.
It has taken me a year to get carpet in the master and stairs. We kept Dd home to save money and it's time for her to move out, so we're looking for a place for her. Her car needs $4k in transmission repair - it's an old Acura and has 180k miles, but the thing will cost less to repair than to buy new/used, so repair it is! After she's out, we'll carpet upstairs. I got sheer curtains made for the master and front door windows. I boxed up a lot of my books and made new files in the office.
The house needed a new roof due to hail storm in April, and we just got that finished. Grateful to have paid extra so our homeowner's deductible was less. Need to find painter to repair/paint the exterior windows and shutters.
I tested the well water and we tested positive for choliform bacteria. Just what someone who's trying to fix their leaky gut doesn't want to hear. DH prepped the well w/Clorox and ran water into the pipes and let it stand to disinfect. Now I understand what the leetle teeny tiny bugs were in the powder bath drain were from; it's a clue - doy ... :P
I'm still in emotional turmoil and not exercising much. I'm in pain even with low-histamine diet right now because of stress. I have anxiety. I will make a future entry regarding my new supplement regime soon also. I just started. It doesn't help that this spring has been so wet and cloudy. Yuck. I sure appreciate the sun, always have.
My heart has palpitations today, anxietyish stuff. I think it's because I should be doing something else and I'm on the computer - lol. Really. Anyway, I decided to open up my blog once again because I'd left a link to an entry for fibro-sufferers and what they should/n't eat. They can't read it, and it's not easily found on the net anymore. I want to help.
I started a team for low-histamine/biogenic amines. I should post an entry for that, too. I don't know if I have the time to devote to leading though. I like to pop in here and catch up reading on my friends once in a while. You know who you are. xo
Friday, March 01, 2013
Jenny on left, Musti on right. Musti would never stay still for a picture, so this is a pretty good shot of the old man. :)
Our black lab, Musti, was put down yesterday. He was my other lab, Jenny's, puppy.
His hind legs could not sustain him any longer. He would whine and/or bark from his comfy pillows in my bedroom I think for company or to tell me what, I don't know. After 5 minutes or more he'd amble out on those legs which have traveled far and wide and served him well. He was always under my mom's feet in the kitchen, and she couldn't afford a spill, what with her having a club foot and replaced hip and knee; so I took him to ease her burden. We had him about four years. He was always under our feet, too. He liked to be where the action was. My nephew, who is a rock climber, would take him rock climbing - you should have seen him in his gear, LOL. JK. But really, Musti would be on the ground as my neph would climb higher and higher, and Musti'd be barking, like, "Get back down here it's dangerous up there!" LOL.
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