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.