Dizzysillyak Posted August 20, 2010 Report Share Posted August 20, 2010 Okay, so one person so far has a history of h. pylori. No one else?Anyone had gastritis on their endoscopy?When alot of you talk about your gastroparesis, did most of you have upper scopes? Just curious if your stomachs were normal looking or inflamed.Issie, Pepto Bismol alone will not kill h. pylori. It needs an onslaught of double or triple antibiotics, along with Pepto. I've heard it is no fun to take! I also look very pregnant on bad bloating days.No H pylori on either my EGD or my last breath test a couple of months ago. I was diagnosed with gastritis, gastroparesis, hiatal hernia, etc etc etc in 2004 but ever since going on this healthy diet, all of my GI stuff is gone ... kow ... Maybe the key is eliminating all the foods that you're sensitive to ? Probiotics help me too though .. Especially 3 Country Life Dairy free or 1 Megaflora ... kefir is a good option too. I still get bloated from time to time but I attribute it post menopause now. I'm pretty much eating foods that shouldn't cause bloating and yet it just shows up sometimes. Same thing happens with my hot flashes ... Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted August 20, 2010 Report Share Posted August 20, 2010 I'm sorry, Issie, that sounds miserable and frustrating. The blood is obviously in the wrong place at the wrong time. Have your doctors ever suggested octreotide? Just curious, it primarily constricts veins in the abdominal area. I know there is at least one ongoing trial. Do you tolerate drugs that constrict your vessels? I think I remember you mentioning having EDS, so perhaps floppy vessels. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 I'm sorry, Issie, that sounds miserable and frustrating. The blood is obviously in the wrong place at the wrong time. Have your doctors ever suggested octreotide? Just curious, it primarily constricts veins in the abdominal area. I know there is at least one ongoing trial. Do you tolerate drugs that constrict your vessels? I think I remember you mentioning having EDS, so perhaps floppy vessels.Haven't tried that. Don't think they have tried me on anything to constrict. I do have EDS and lots of blood pooling. Had leg vein surgery when I was 26 due to terrible varicose veins. They didn't strip them because I was so young, but took the parts of the varicose out - they said it was like cutting branches of a tree off, not cutting the tree down. Would that help with the fluid build up? Quote Link to comment Share on other sites More sharing options...
issie Posted August 25, 2010 Report Share Posted August 25, 2010 I think that too much salt, unless you are sure that your adrenals or underproducing aldosterone -- may not be good for everyone. When I was doing alot of salt, I seemed alot worse. I've recently backed off and feel better. Still keeping my water content up and at times using electrolyte support. But not the massive salt on everything nor as many G2's. But, in so doing, I've noticed that I do seem more dehydrated. It's like the water doesn't get into the cells right, even though my whole body is swollen with too much fluid. Putting more fluid in when it's not going into the cells but into my feet, hands, legs and abdomen doesn't seem like the right thing to do. But, how do you get your cells to uptake the fluid not just go into your tissues?I just got the latest daily newsletter from Dr. Mercola. It has a topic on salt. I'm going to share some of it. It kind of confirms my thoughts on it. In some ways -- didn't know it was because of the KIND of salt we're all using.To break down ordinary salt - which is 97.5% sodium chloride and 2.5% chemicals - iodine and mositure absorbing elements that is dried at 1,200 degrees F - which alters the structure of the salt it takes 23 g. of cellular water to break down 1 gram of sodium chloride. Therefore, it throws off the fluid balance of the body. It can contribute to arthritis and kidney and gallbladder stones. Some of these refined salts also have aluminum in them, and we know what that can do to our brains.The article didn't say that salt was bad for you, just that the refined salt that most of us use is bad for us because of the structure of the salt and the refinement and processing. Also that it changes the crystal structure of the salt and it changes the energy in the salt. (The wording used in the article was vibrational energy, which is restorative to your body.) In fact, it was felt that salt is good for you if you use the natural unprocessed type of salts. They were especially recommending the Himalayan salt even over the sea salt. Mostly because of the amount of other minerals included in it (84 different trace minerals). Unrefined salt is 84% sodium chloride and 16% other natural minerals. They also said that salt is good for depression. So, unless we can start using the more natural forms, we may be dehydrating ourselves even more, not to mention the fact of the burden of processing and eliminating that our bodies have to go through. I couldn't figure out why it seemed that my tissues were completely saturated but yet I still feel dehydrated all the time. Maybe because the water wasn't getting into the cells properly because of the type of salt I was using. I don't know, what I do know is I'm going to at least start trying to have my salt source be from either sea salt (which I already have some) or try this other Himalayan salt and see if it makes a difference.Would welcome feed back on this thought process.I'M GOING TO POST THIS AS A NEW SUBJECT!!!!!! Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 30, 2010 Report Share Posted August 30, 2010 Okay, so one person so far has a history of h. pylori. No one else?Anyone had gastritis on their endoscopy?When alot of you talk about your gastroparesis, did most of you have upper scopes? Just curious if your stomachs were normal looking or inflamed.Issie, Pepto Bismol alone will not kill h. pylori. It needs an onslaught of double or triple antibiotics, along with Pepto. I've heard it is no fun to take! I also look very pregnant on bad bloating days.Interesting theory Sue! It does seem to tie in a lot of issues that are common for many of us. I was tested about 6 years ago for h.pylori but it was negative at that time. I did have "chronic gastritis" on my endoscopy a couple years ago. Apparently that is a common finding for people with EDS, in addition to the other gut issues we have. Quote Link to comment Share on other sites More sharing options...
dianne.fraser Posted August 30, 2010 Report Share Posted August 30, 2010 SueI was found to have massive inflammation in my stomach when I had a gastroscopy around 7 years ago, but no helicobacter. My inflammation was tracked to a corn/maize starch allergy - I develop shocking stomach pain and bloating if I eat food that is thickened with maize starch or take medications/vitamins with a maize starch filler. The pain is less if I eat other corn products, but the bloating tends to be worse eg I've started eating sugar-free chocolate and I had a reaction to one brand that uses maltitol, a product derived from corn.Dianne Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 22, 2011 Report Share Posted December 22, 2011 Bumping this so we can re-examine this great info .. Thanks .. DI've been reading through this and wanted to say that my integrative doc said that she'd tried severalnatural alternative treatments for killing h pylori in her patients, but it didn't work. Apparently,this was going around a year or so ago so she saw this frequently. I'll be taking prescription antibiotics. I was thinking that strains of h pylori has gotten stronger over the years so we needstronger meds now.Also, I have no idea why but natural calm, magnesium citrate, keeps me from feeling bloated. I assumed it was because it keeps my bowels moving .. When my flare, gastroparesis, pain, increased oh, pots and pem started 4 months ago, I needed natural calm with every meal in order to get my food out of my stomach. Now I only need this at night. Tip for salt loaders . Mag citrate pulls salt into the gut so add somesalt to this. I use himalayan sea salt in order to get the nutrients.I've also found that helios organic kefir soothes my gut. I read an article about researchers findinga peptide in fermented foods that kills gram negative baceria. They plan on patenting it. I'll get the link ..http://www.scienceda...10804170036.htmIt's possible that the kefir is helping keep the bloating and h pylori under control. I still need this daily too ... but only about 2 ounces a day now. I drank a quart a day for almost 3 weeks up until last week. Side note, I'm allergic to dairyso now I have dark marks around my eyes .. And the kefir caused a paget's skull flare. I have pain when my paget's flares ... I know ... I'm a mess .. tc ... d Quote Link to comment Share on other sites More sharing options...
JWPotsMom Posted December 22, 2011 Report Share Posted December 22, 2011 Upper GI revealed no inflammation or h.pylori Quote Link to comment Share on other sites More sharing options...
brethor9 Posted December 22, 2011 Report Share Posted December 22, 2011 upper and lower GI/colonoscopy found gastritis, chronic inflammation and and large reactive lymphoid aggregates.....the last part apparently are not common to the part on the bowels it was found in....concerned my doc so much he tested for lymphoma (scary) he still cannot explain why they are there or what is causing the inflammation. Only had blood test for H Pylori not breath testBren Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 22, 2011 Report Share Posted December 22, 2011 Upper GI revealed no inflammation or h.pyloriHi Jw,I see that you're new here .. welcome to the board ...FWIW .. we do a lot of theorizing about causes of dysautonomia on this board. I'm a newbie researcher compared to most of the people here ... Gut problems is just one area that we're investigating ... We do seem to have a lot of food intolerance here which indicates leaky gut / intestinal permiability. Celiac disease is only one manifestation of this ...The idea that bad bacteria could be behind dysautonomia in some, even if it's not h pylori, is intriguing as the medical community has recently become enriched with info on our gut ecology. The reactions in some to fecal transplants is gross but encouraging ... tc ... d Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 22, 2011 Report Share Posted December 22, 2011 Hi Sue,I remembered you saying that the gf diet is helping eliminate your bloating. Is it still ? I was wondering if it's because of the type of bacteria that feed off carbs or a reaction to gluten itself. I read an article once where a researcher theorized that celiac disease was actually from a bacteria that thrived on gluten and it was that bacteria damaging our guts as opposed to the gluten itself doing the damage. He compared this to how h pylori damages the gut. http://www.celiac.co...mron/Page1.htmlI saw that h pylori can cause bloating but since the gf diet is helping yours and since I'm positive for h pylori and my bloating is being helped by Mag citrate and kefir, I'm not sure what to think ... Bloating / gas is afterall the side affect of bacteria eating / natural carbonation. I wonder what feeds h pylori ? Maybe there's something in the natural calm that's helping break up the bubbles and inflamation too. Gotta go ... I'm exhausted and my brain is fried ... tc ... d Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 22, 2011 Author Report Share Posted December 22, 2011 Dizzy, I had been doing alot better with bloating...until this evening. BUT, I did eat extra beans yesterday *blush*, and sometimes my gas does not MOVE! So, you can imagine if we make a few pints of gas a day, and those "pints" are not moving, that space is cramming my organs up into my lungs! I think that is what is going on today. I should have not eaten extra yesterday, but was on the road and in a bind with limited food available. I had been doing so well that I just ate like I never had gi issues! I will have to watch that continually until my gut wakes up and "moves" well on its own.I really could get into the theories that it all boils down to bacteria and what they produce. We just have to wait out the research I guess. Quote Link to comment Share on other sites More sharing options...
issie Posted December 22, 2011 Report Share Posted December 22, 2011 Dizzy,You do know that bismuth like in Pepto Bismol will help to kill helicobacta bacteria, right?Issie Quote Link to comment Share on other sites More sharing options...
JWPotsMom Posted December 22, 2011 Report Share Posted December 22, 2011 Upper GI revealed no inflammation or h.pyloriFWIW .. we do a lot of theorizing about causes of dysautonomia on this board. That's GREAT! I'm sure there's more than one reason people get various forms of dysautonomia. I just wanted to chime in with what's going on over here to add another perspective to the discussion. My DS has significant food allergies, animal allergies, drug allergies, and moderate environmental allergies. He went gluten free for three months with no change in his illness. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 22, 2011 Report Share Posted December 22, 2011 thanks issie,I just found out that I have h pylori, so I haven't looked at any treatments yet. I didn't know that about bismuth but I'll be looking at this asap. I'd rather try holistic treatments, anything other than antibiotics, but I trust my doc too andshe said she tried these and they didn't work. She has been right about my leaky gut, low pregnenolone, low dhea, high easoniphils,thyroid antibodies, hyperinsulinemia, etc etc etc ... and she's always open to hearing aboutwhat I'm trying. So she's open minded and non judgemental. No other doctor has ever triedto help me .. For years, all I heard was take this drug and when it didn't work, I was treatedlike it was my fault. One other reason I'm "probably" going this route is that I've had food poisonong 3 times in the last year which indicates that my gut ecology is sub par. I have to take strong probiotics every dayor else I get horrible gas. This might be what I've been needingThanks again .. D Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 22, 2011 Report Share Posted December 22, 2011 Hi jw,imho, testing a gf diet for 3 months isn't long enough. It took me one year to start walking normally. Dr. Hadjivassilou tells his gluten ataxia patients that it will take them a year at least to recover if they're going to. Did you eliminate other possible cytokine sources ? An elimination diet including all chemicals is ideal. Fwiw tho, eliminating my "known" intolerances hasn't helped my oh, pots or pem but I've been healthy at rest since Oct 2007. Eliminatingall caffeine last year even stopped my adrenals from racing. I didn't know what that was until it was gone.If I could afford the alcat, I might find others that are contributing to my dysautonomia. For now,bad bacteria which could be damaging my guts and causing leaky gut are being addressed. Tc .. D Quote Link to comment Share on other sites More sharing options...
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