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欧洲幽门螺杆菌治疗共识 5

My H. Pylori Survival Story -- and Questions

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My H. Pylori Survival Story -- and Questions

Post by Milla »

I'm a 27-year-old female. I have had quite the experience with H. Pylori. I wanted to share my experience because maybe it will benefit some patient who is suffering, give them some hope, some assurance that they are not crazy, that there is some relief ahead and a light glimmering at the end of the tunnel. I also hope that maybe I can be of some help to the researchers. I'm happy to answer questions that you may have. I've read many cases about H. Pylori, but have not come across one quite as unique as mine. So maybe I can help simply by publishing my story.

Maybe I can even get some answers to some of my questions about the residual effects of H. Pylori -- at the end.

I'm not 100% sure when I was infected with H. Pylori, but there are two possibilities, the first being the most likely.
I may have picked it up as a child (which is normal) and later stressful events triggered its overgrowth (a serious car accident in 2009, OR pregnancy 2010-2011). I see the possibilit because I grew up on a farm and in very dirty circumstances – the America. There are also things in my personal health history that point to this possibility, like a mild case of lactose intolerance suddenly surfacing in my late teens. I developed severe hypoglycemia, a couple stomach ulcers, acid reflux, and an irregular heartbeat that doctors could not firmly diagnose – all symptom of sucrase deficiency. But these symptoms gradually appeared.
The other way in which I may have become infected with H. Pylori was while I was serving as a Christian missionary in Down Town Los Angeles. We spent a lot of our time in the slums, along Skidrow, etc. We shook hands, ate food, and shard hope with those in that area. I always made sure to carry hand sanitizer. I used it frequently. I would soak my hands in at least 1 tablespoon of hand sanitizer after almost every handshake, and always washed my hands and sanitized them before eating or touching my face. Down Town Los Angeles is filthy. I easily could have died in that area because one day I had a spider bite. It was healing, but it had formed a scab on my arm. While I was out working among the people, the scab got scraped off and quickly infected. I didn't realize it until a few hours later when a red line appeared that started at the site of the bite and went up my arm and under my armpit, directing for my heart. It was taken care of immediately. But this is just an example of how filthy and dangerous to ones health it was to work in that area – in America. H. Pylori is bound to be crawling around there too.
During my pregnancy (2010-2011) I began to experience food intolerances. Not just the pregnancy food aversions. But intolerances that made my gut hurt. I'd be awake all night with wrenching pain in my gut. Foods that did this to me during the pregnancy were beef and white (processed) wheat flour. I thought maybe it was part of the pregnancy deal. But something in the back of my mind said that no, there was something wrong with me. I never felt like the baby was in any immediate danger. In fact, at 25 and 28 weeks I had ultrasounds that both had the baby measuring in at exactly 25 and 28 weeks respectively. The baby was fine and growing well, right on time.
In the 3rd trimester, I got the most severe heartburn from mild foods. I threw up many times because the heartburn was so bad. I had never thrown up throughout the entire pregnancy until the bad heartburn came. And this heartburn would not resolve no matter the amount of antacids. I can't tell you how many bottles of Tums I went through in that 3rd trimester alone.
I figured the food intolerances and heartburn would go away after the pregnancy ended. The heartburn calmed down some. But the food intolerances got worse. Soon many fruits, vegetables, grains, meats and legumes made me sick. I just felt unwell. Sometimes I felt like a brick was just sitting in my gut. I started vomiting a few times a month. My hypoglycemia increasingly got out of control. My heartbeat and heartrate were so strange. I felt depleted of every ounce of energy. Soon my face broke out in a strange rash. You know when you have a pimple that scabs over and gets milky-white flakes if its been picked? I had no pimples, but I was getting the same milky-white flaking all around my mouth and nose. No matter how much moisturizer or medicine I put on it, the rash would not go away.
Thanksgiving 2012 I had a tooth (molar) all of a sudden die. The root just died. My dentist tested it to make sure that it was dead or close to dead. It was for sure positively near death. He pulled it. He was as puzzled as I was when we saw that there was no apparent infection. No absess. No decay. No cavity. Nothing was wrong with it. The root just died. It didn't make sense. But my mouth felt much better, with the exception of a canker sore that all of a sudden appeared.
I battled this canker sore. It was located on the opposite side of the tooth extraction – so it could not have been caused by the trauma of the extraction. In fact, the canker sore was on the inside left of my bottom lip. It hurt so bad. It continued to get worse.
In the mean time, I woke up one morning in the fall of 2012 and felt like death. I've never had a blood clot, but from the description of how they feel, I felt like I had blood clots lodged in my thighs. Searing, throbbing lumps of pain. Sometimes it felt they moved around and circulated through my body. Along with this clot-feeling, I had severe chest pain, sweats, weakness, radiating pain down my left arm, shortness of breath, dizziness. Everything that pointed to signs of a heart attack. It didn't make sense. I was too young to have a heart attack. I had had one mild anxiety attack 10 years previous, but it did NOT feel like what I was experiencing in that moment. Not only that, but I had not been feeling anxious about anything. In fact, I have not had an anxiety attack since the last one 10 years previous. Something wasn't making sense.
I went in to a doctor. She said I must be pregnant. I told her that first of all it was impossible at the moment because of certain familial circumstances. And secondly, I had been pregnant before and these were not pregnancy symptoms. I demanded that she at least to an EKG and run some blood work. She refused. She then insisted it must be a pulled muscle. I told her that I know not only what a pulled muscle feels like, but what it feels like to have all soft tissues (muscle, tendons, ligaments) torn apart through my experience with my car accident in 2009. I insisted it was not a pulled muscle, and demanded again that she test me for something. She refused. She sent me home and told me to come back in two weeks for a pregnancy test if I wasn't feeling better. I was livid.
I went to another doctor. He was very concerned and immediately hooked me up to an EKG. Everything looked fine. Then he started checking my stomach, listening, applying pressure, feeling around. He asked if I had ever had an ulcer before. I said I had, once, in my late teens. He said that ulcers, if gone untreated too long, can cause the esophagus to spasm. A spasming esophagus, he said, produces the exact same symptoms as a heart attack, minus the EKG and blood work. He said the only way of finding out is to do an EKG and blood work. Since the EKG looked clean, he said he was 100% I had a big nasty ulcer. And since my blood pressure also looked good, then he knew I wasn't going into septic shock. He prescribed a PPI and sent me home. I felt a glimmer of hope.
After taking the PPI for a couple of days, my symptoms diminished some, but would flare up regularly. I still had chest pressure and a little shortness of breath, but the radiating pain down my arm was gone. I still felt weak and exhausted, but I could get off the couch. I felt as if I was slowly dying. I felt like something was slowly killing me from the inside out. It was strange to feel my body slowly dying, but not knowing from what. I continued to take the PPI hoping that maybe my gut just needed some more time to recover from this gaping ulcer. I was also still battling that huge gaping canker sore.
January 2013 (2 months after the doctor's visit) I got fed up with the canker sore. I had tried every OTC drug and every natural remedy I was aware of, and it still continued to get bigger and more painful. It got to the point that I could no longer drink water or swallow my own saliva without wanting to scream. My eyes would tear. I could not believe it. The entire front of my bottom inner lip had turned into a huge gaping canker sore. I tried going off sugar, dairy and processed grains thinking it was a food allergy. Nothing worked. So I finally got on the web to do research – again. I searched for any treatment that I had not tried. Anything that might alleviate the canker sore, if not cure it. If it got down to it, I was perfectly fine having my lower lip cut off if that's what it took to stop the canker sore. I came across something that caught my attention. One treatment talked about peptic ulcers, canker sores and H. Pylori. According to the article, if a patient has a peptic ulcer AND oral canker sores, he/she is more than 80% likely (studies proved) to have an H. Pylori infection. It was a valid source too, from a research University.
I immediately went in to see the doctor who was giving me the PPI. I told him what I found on the internet, and reminded him of what he already knew – that I had a peptic ulcer. Curious, but not disbelieving my findings, he turned to his computer and did a little research from his own sources and found the exact same statistics. He continued to do a little more research to figure out how to test for H. Pylori and thoroughly eradicate it. He said that his clinic did not have what it took to run the tests, but he was very certain, given my symptoms and our research, that I had H. Pylori. He said that it's mostly treated with what's called the “triple treatment”, but that since my infection seemed to be causing so many problems, he wanted to make sure we really killed it. He gave me the “quadruple treatment”. I don't remember exactly everything he gave me, but I know he had me continue the PPI. On top of that he had me take bismoth – I'll never forget the taste of that stuff – and two heavy antibiotics. He had me go for 2 whole weeks – 14 days – on this treatment.
Within the first 48 hours, my canker sored had diminished by 50%, the searing, throbbing pains in my legs were quickly disappearing. The constant chest pressure was letting up, and the flakey rash on my face had disappeared. I could not believe it. It was as if my entire body had been overrun by H. Pylor. It had been killing me! But I was starting to feel significantly better within a few doses. I was happy to see such drastic improvement so fast.
I finished the entire course. Later I was tested for the antibodies for H. Pylori, I had indeed had it. But it was gone after the quadruple treatment. I was happy and starting to feel much better. All signs and symptoms of the infection were gone. However, it became very clear to me that I had somehow developed food problems. The food intolerances continued to get even worse. I was starting to throw up multiple times a week. Massive mood swings. This started to take a toll on me. I started to lose up to 10 pounds a week. I knew the H. Pylori was gone, but the residual effects did not make sense to me. May of 2013 I started researching. I came across quite a bit of information that convinced me that I had something along the lines of leaky gut – a very controversial diagnosis in the medical field.
Given what I knew I was reacting to, I started taking those foods out of my diet. I started to feel a little better. I even gained a couple pounds. From June through September 2013 I felt almost myself. My hypoglycemia even began to stabilize a little. Then I went on a trip back east to visit some relatives that I had not seen in years. Within 24 hours of arriving at their house, I was sick. I wanted to vomit, but couldn't. I had awful bowel movements. My daughter's stools were really bad too. I discreetly pulled my husband aside and talked with him. He said he was having the same problems. He went for a little walk around the house and found that the septic tank was leaking – and my relatives had well water! My first thought was Giardia. We immediately stopped rinking the tap water and bought a bunch of bottled water and juices. Things cleared up within 2 days. Except it seemed to make me even more intolerant of foods that just a few days before I could eat.
By Thanksgiving 2013 I was super sick again. I was throwing up almost every day – projective vomiting through my mouth and nose. I had also contracted the stomach flu 3 times within 6 weeks – signs that my immune system was seriously troubled if not compromised. I also have developed seasonal allergies and asthma -- neither of which I have had prior to my H. Pylori experience. I had no energy. I was continually dropping weight. I was constantly hungry. No matter how much food I ate, I was never satisfied. And food always made me sick. I had numbness in my face, twitching in every muscle of my body. I was dizzy a lot. I could not think clearly. When reading, I could not remember what I had just read from the beginning of a small sentence to the end. My hypoglycemia went out of control. I would get lost walking to and from the same route to school that I took every day. I had constant abdominal cramps day and night. I could not sleep. The acid reflux and heartburn came back with a vengeance. My heartbeat was irregular again. Searing abdominal pain. I experienced so many more symptoms.
November 2013 I was so weak I finally decided to go back in to the doctor because I felt I was slowly dying again, but this time of malnutrition. I was not well. By this time my doctor had made sure that they had H. Pylori testing equipment on hand. They drew my blood again – positive for H. Pylori antibodies. For a brief moment I thought I was for sure going to die of H. Pylori this time. But I couldn't help but feel like this dying feeling was not H. Pylori. It was different. It felt like I was starving to death no matter how much food I ate. Anyway, the doctor had me do the Breathtak tests. They were negative. He had me drink this nasty stuff, then take an e-ray. They ran all sorts of tests on me – everything came back clean. I was even tested for Giardia, which came back negative, and treated for it anyway because he said they get a lot of false negatives on Giardia tests. He said to go see a Gastroenterologist (GI) if the treatment didn't help me feel better.
I knew no GI in our area would be sufficient. So I researched around and called friends from all over the United States to get their input on different GI doctors. I finally settled on one from Utah. He was an alumni of the University of Utah GI deparment and research facilities, and he still had full access to all the recent research coming out of the University. So I chose the Utah GI and scheduled for the first appointment available – mid December. I had family and friends down in Utah, so we decided to take an extra long Christmas vacation down there while waiting for the appointment. Meanwhile, I finished the Giardia treatment but felt no better.
My appointment time finally arrived. Though he seemed very distant and detached, he was thorough. He asked every question under the sun and then some. He poked, prodded, pressed, listened to everything going on in my gut. He took my medical history, my family's medical history. He was very thorough. Eventually he looked up and said, “I don't know. It could be anything from some little parasites to stomach cancer. I need to go in and take a look around, take some biopsies and run a panel of tests. I just don't know.”
I was supposed to start class January 6th. And it was only December 26th. The soonest he could get me in for an endoscopy was December 31st. So we stayed longer with family and friends trying to stay positive and wait. December 31st finally rolled around. I went in, they put me under, looked around, took some biopsies and sent them to the lab. I woke up and he said that visually, everything looked fine. He saw no scarring, no ulcers, no nothing. It looked beautiful, pink and happy all the way down through my small intestine. But he said the tests would let us know soon enough. He said he was testing for cancers, Celiac, Lupus, Crohns, parasites, and many other things that he didn't feel like listing off. I dont' blame him. A panel of tests is a lot of tests!!!
Two days later, January 2nd, we drove home so I could get ready for classes that started in just a few days. I thought it was going to be my last semester, my last window of life. It was horrible waiting for the test results to come back.
The first day of class, January 6ht, 2013, I got the call. Multiple Digestive Enzyme deficiencies. I was low on sucrase and lactase. Treatment, they said, was to take a pill that costs $7,000/ month and avoid lactose. I asked if there was another way. They said to avoid sucrose and lactose, but because sucrose is in so many things that it was nearly impossible to abstain from it. I didn't believe them. I couldn't believe that a little $7,000 pill would be my cure-all. I also didn't believe them because grains, beans and vegetables made me sick. I felt like I needed to understand the sucrase deficiency better. So I went back to researching this sucrase-deficiency. I found nothing on it except a website devoted to CSID – a genetic disorder resulting in multiple digestive enzyme deficiencies: sucrase, lactase AND maltase. Maltase, I learned is necessary for the digestion of maltose and STARCH. The website even had a section devoted to interpreting your test results so you could figure out your tolerance levels to each nutrient that lacked the proper enzymes to digest them. I wanted my exact test results so I could at least figure out my tolerance levels for sucrose and lactose. I thought it would for sure make the dietary changes a little easier.
I called the GI office and asked for my results. They read me the sucrase and lactase numbers – and then the maltase. I was confused. Maltase? But when the tests first came back, I was only told sucrase and lactase. What was going on? They couldn't answer my questions except to assure me that I did not have CSID, but that I lacked all three enzymes. If I had had CSID, then I would have been sick my entire life, just as sick as I had been the last few years, probably even dead by now without treatment. That made sense. It really did. In fact, no one in my family had any history of any kind of digestive problems. Only myself. But what didn't make sense was what caused the enzyme deficiencies. I wanted to know. They couldn't tell me. So I started researching – A LOT.
One day, out of the blue, my brother-in-law, who works for the University of Utah, sent me an article that came out in 2009. It's titled Intestinal Mucosal Barrier Function in Health and Disease by Jerrald R. Turner. (I subsequently found many other articles surrounding the same topic.) Turner
s article was a tough read. It has a lot of medical jargon. But with Google, I made it through and it made sense. Page 802 made the most sense because it talked about certain infections in the small intestine actually causing problems with the lining of the stomach and small intestine. He lists H. Pylori as one of those bacterias that triggers this immune response in the gut to attack the lining of the stomach and small intestine.
I was astounded. Shocked. But also a little relieved to finally understand a little more about my condition. It was making more sense. Though I didn't entirely grasp the meaning of this condition, which was not given a name, I understood the basics. H. Pylori can cause an immune attack on the gut, thus causing all kinds of interesting problems and symptoms. There is one thing that I'm not wholly convinced of. Turner says that after complete eradication, subjects' health and digestion are restored. If this is true, then why, almost 2 years after complete eradication, am I still feeling the effects of H. Pylori? Why is it taking so long to recover? Why is it that I still can't eat certain foods? Why do they still make me sick? What is going on with my gut?
After being diagnosed with the enzyme deficiencies in January 2014, and after discovering I was deficient in maltase as well, I radically changed my diet and experienced a renewed life. I am allive, fully alive. I have a life beyond hovering near death. All my symptoms are gone. I have worked so hard the last year. It has now been 4 months since I last vomited. My face is no longer numb. Almost all twitching is gone. I gained 6 pounds. I actually have energy to exercise. I can remember chapters and chapters of of what I'm reading. I can follow a discussion and hold a conversation without completely forgetting what I was even talking about. Mood swings have improved greatly – except when I eat too much starch or surcose. Insomnia is almost gone. (It only come around when I eat something I little too high in sucrose, lactose, starch or maltose.) And my female hormones – holy cow! They are actually regulating themselves. I finally had to go off contraceptives because my body was fighting to control and regulate its own hormones! It's amazing! It really does appear as if I was slowly dying of malnutrition, not because I wasn't eating, but because I couldn't digest the foods I was eating.
Through trial and error, I have discovered exactly my tolerance levels to each nutrient that I react to. Sucorse – 4.5%, Lactose – 4%, Maltose – 2%, Starch – 20-50% (I have such a wide range of starch tolerance because I can handle a slice of dairy free, sugar free 100% whole wheat bread 2-3 times a week without vomiting. OR ½ cup cooked BROWN rice, 2-3 times a week. OR 1 cup mashed potatoes 3-4 times a week). The USDA has a wonderful nutrition database that provides full-reports on various different foods. It outlines every nutrient, vitamins, minerals, serving sizes, including per 100g making it simple to discover the percentage tolerance for any nutrient listed. It has been a Godsend!
Through the last few months as I've been free from so many symptoms, I have noticed that I do react to some lipids too. I can handle a lot of unsaturated fats, and a small amount of saturated fats (Can't have more than half an avocado more than 3 times a week). But even half a gram of trans fats will send me vomiting in the toilet, or awake all night with severe abdominal pain. I have to be careful in cooking because some fats, like olive oil, have specific temperatures at which they hydrogenation – turn into trans fats. It was been quite an adventure of discovering and learning so much about nutrition and foods. My family now teases me about being the family nutrition specialist! Anyway, my symptoms now only come when I eat something that is out of my tolerance level. Sucrose I am the most sensitive to. I react to it the most violently and very quickly. It's also the most dangerous, I've learned because of the damage it can do to the heart, brain and pancreas if not properly digested. I've learned how to cook with honey, and not just any honey. Most honey on the shelf I've learned, is actually diluted with rice syrup, which is pure sucrose – from China. I've also found that local honey varies from location to location. Generally, honey is mostly fructose and glucose – not bonded. But in some areas, bees can pick up a little to a lot of sucrose depending on the different pollens around. Even if there is some sucrose in the honey – usually very small amounts – and you don't cook it (which destroys the natural digestive enzyme sucrase that comes in honey), then your stomach will get the help it needs in breaking down the little sucrose that there is. I've found a local bee keeper who does a terrific job at harvesting his honey. What's an even bigger plus is that he leaves little bits of honeycomb in the honey, thus making the concentration of digestive enzymes a little higher.
My love of food has saved me. I especially love sweets – who doesn't? But my love for food has determined me to find ways to still get my sweets. I have found some really great ways to make cookies, ice cream, cakes, brownies, chocolate truffles, and so many other delicious things, without exceeding my tolerance levels. It has been fun spending so much time in the kitchen just playing for hours on end. I've even found a way to make bread that holds together beautifully and can be used to make sandwiches! And pancakes! When people start trying to pity me, I like to tease them and tell them I have it so rough – I “have” to eat cake, cookies, ice cream, and so many other goodies for breakfast, and not feel guilty or break my diet. I really have it tough! :lol: I've even taken my recipes to the county fair and received grand champion, 1st and 2nd place for 7 different entries – 6 of which were within my tolerance levels.

Though I'm feeling significantly and miraculously better, and enjoying my time in the kitchen, I still have some unanswered questions. I tried taking digestive enzyme supplements to increase my tolerance levels. I even found some that had 0 sucrose, 0 starch, 0 maltose, 0 lactose, 0 trans fats. But they made me vomit. To me this says that my system does not like digestive enzymes period. And what's with the intolerance to saturated and trans fats? Does this mean that my immune system is still actively attacking my digestive system even though H. Pylori has been completely eradicated?
Is this permanent? According to Turner, it's temporary. But my body appears to be proving this theory wrong. It seems to be at least long-term, if not permanent. Hopefully not progressive. Is my immune system still attacking my digestive system because I went untreated for H. Pylori for so long? Is it possible that H. Pylori has caused an autoimmune disorder – a progressive, on-going attack on my digestive system?
And what about pregnancy? I want so badly to have another baby, maybe starting in a year – if I can get my weight up and maintain it. I want to fill my home with laughter and toy fights that reach the rafters!!! :ugeek: But I'm concerned that the lack of nutrients will endanger my life and even the baby's life during pregnancy. Can my body build a healthy baby on such a restricted diet? How essential is starch, sucrose, lactose, maltose, and saturated fats necessary to building a baby? I've tried asking this nutrition question of the CSID organizations, but they have never responded.

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Re: My H. Pylori Survival Story -- and Questions

Post by Helico_expert »

a very interesting story indeed. I learn something new today.

However, I must point out that Blood test is not appropriate for your H. pylori diagnosis (probably in all cases). Because once you are infected with H. pylori, your body will produce anti- H. pylori antibody. In addition, your immune system will have memory of it. So, your blood will stay positive for months or even years.

one of the many references

So, we dont know if you had H. pylori during your first doctor visit. We assume you had. But it's weird to see a negative blood result. Unless you are using other diagnostic test (eg. breath or stool test).

Then your second doctor detected H. pylori antibody in your blood. We dont know if it's left over antibody from your first infection or current infection. A breath or stool test should be used.

Nevertheless, you did not mention your H. pylori status in your final thorough endoscopy check. Your stomach can look beautiful but still carrying H. pylori.

Finally, I am glad you find out your digestive problems. I think very little people will be able to find out by themselves. As for your question, do you still have H. pylori? I think it is better you get a breath test done. You probably want to test everyone at home too to make sure everyone (except your child) is free of H. pylori.

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Re: My H. Pylori Survival Story -- and Questions

Post by Milla »

I think I have been misunderstood, both in regards to my medical history, testing, and questions for H. Pylori. Let me recap.

History and Test clarification:
I was asymptomatic until the my pregnancy in 2010-2011. That's when I started having really bad acid reflux, heartburn, food intolerances no associated with pregnancy food aversions. Severe stomach pain after eating certain foods.

(I've heard that H. Pylori can hang out in the gut for a very long time and cause no problems. But in some cases its overgrowth can be triggered by physical of emotional stresses, such as pregnancy, car accidents, and other health problems that randomly happen in life -- is this true?)

November 2012 I went to see a doctor for a lot of symptoms that came out of nowhere that appeared like heart attack symtpoms. She said I must be pregnant and sent me home.

December 2012 I went to a different Dr who said the heart attack symptoms were my esophagus spasming because of an ulcer. He treated me for an ulcer using a PPI.

By January 2013 my symptomshad calmed some, but I they were still affecting me. Out of frustration over my canker sore I started researching on how to get rid of it. That's when I came across an article stating that if a patient has oral canker sores AND a peptic ulcer -- which I did -- then they are over 80% likely to have H. Pylori. (Is this true?) I went to my Dr -- the same one treating me for an ulcer. I shared the info with him. He took just a few minutes to do some quick reading and found the same things in his professional sources. (Up to this point he had never heard of H. Pylori -- he's a Dr in a small little midwestern town in the middle of nowhere.) He understood the quadruple treatment, but maybe didn't have time to research all the ways to actually test for H. Pylori. He had NO breath tests available, and I don't think he was aware of stool or blood testing to confirm H. Pylori. So he couldn't/didn't test me. He just gave me the meds.

January 2013 Within 48 hours of starting treatment, almost all my symptoms were quickly disappearing, except continued food intolerances -- which started during pregnancy when my H. Pylori symtpoms ALSO started.

I changed my diet some to help alleviate food problems. Felt Ok until September 2013.

September 2013 went to same Dr because I suspected Giardia after drinking contaminated water. Giardia came back negative. (By this time my Dr had become somewhat more familiar with H. Pylori and even had stuff on hand to test!) He tested my blood -- came back positive for the antibodies. (I'm aware that these antibodies can stay in the blood for along time.) He did a breath test -- it came back negative. Did a stool test -- it came back negative for parasites, Giardia and H. Pylori. He referred me to a GI.

Janaruy 2014 did an endoscopy. All tests come back clean except dissachardases. I tested positive for multiple digestive enzyme deficiencies for sucrase, lactase, and maltase. I changed my diet to fit these deficiencies.

June/July 2014 I find research articles showing that H. Pylori can cause an immune attack on the lining of the stomach and small intestine (small intestine houses the brush border, which makes the digestive enzymes that I'm lacking). I specifically came across some information concerning Atrophic Gastritis and Autoimmune Atrophic Gastritis -- H. Pylori being the cause in most cases. Is this true? Can H. Pylori cause an immune attack on the digestive system? If so, when should it calm down enough to lead a semi-normal life again? To me it appears that the enzyme deficiencies are evidence of the immune attack on my digestive system as triggered by the H. Pylori. Is this possible?

Other question:
On such a limited diet, can I safely have a healthy baby? Or would my health and life, and the baby's, be at risk?

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Re: My H. Pylori Survival Story -- and Questions

Post by Helico_expert »

That's when I came across an article stating that if a patient has oral canker sores AND a peptic ulcer -- which I did -- then they are over 80% likely to have H. Pylori. (Is this true?)
it is true that many peptic ulcer patients have H. pylori. But since people mis-used aspirin (or any NSAIDs) for various reasons, I think in developed country, there are more NSAIDs related peptic ulcer than H. pylori related. In terms of canker sores, or mouth ulcer, I have no definite answer. I did a quick search and did not find a reliable source to support this correlation. The reason is, H. pylori do not grow in the mouth. We have been trying very hard to culture H. pylori from mouth and failed miserably. There have been many studies that show presence of H. pylori DNA and antigen. But they cannot prove the H. pylori is alive. So based on these, I think there is little evidence to support H. pylori to cause canker sores. However, trauma (bite yourself) and lack of sleep is always associated with cancer sores.

Can H. Pylori cause an immune attack on the digestive system?
Yes, this is generally what happened. H. pylori colonised on the stomach cells. The stomach cells secret signals to immune cells that it is under attack. Immune cells come in and try to kill off everything include healthy cells. So, people with stronger immune response to H. pylori always suffer more. This is actually a very complex question. Because H. pylori has the ability to tame the immune cells. That's why it cannot be naturally removed by the host immune system. For example, every time when you are sick, your body generate immune cells specific to that pathogen and kills it off and you recover. But H. pylori has the ability to stay in you forever even with the presence specific immune cells. For your information, some scientist even believes that the "taming" effect contribute to less allergies and less auto-immune disease.

one of many references, this is one of the latest:

If so, when should it calm down enough to lead a semi-normal life again?
Short answer is yes. Many people do become normal. However, it's really subjective. I think it has more to do with individual's immune response.

To me it appears that the enzyme deficiencies are evidence of the immune attack on my digestive system as triggered by the H. Pylori. Is this possible?
I seriously dont know. Need an immunologist to answer that.

On such a limited diet, can I safely have a healthy baby? Or would my health and life, and the baby's, be at risk?
for that, you'll need to ask a gynecologist. Sorry about that.

If I happened to miss any question, or you want to understand more on particular topic specific to H. pylori, please ask again.

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Joined: Mon Oct 27, 2014 9:18 am

Re: My H. Pylori Survival Story -- and Questions

Post by Milla »

Thank you for answering those questions. It has really helped solidify my understanding of this process and what has truly happened to my body.

I've been looking for a good Gyno and Immunologist lately. We'll be movign soon to a much larger city for my husband's work, which offers great benefits. So we're hoping to get a few more answers and guidance on these questions/issues. Do you have any good suggestions for Gynocologists or Immunologists in the San Fransisco SOUTH Bay area that has delt with H. Pylori? Maybe?

I do have a few more related questions.

1- How much recovery is expected from a patient in my condition?

2- How long does it take for a patient in my condition to regain some, most, or all their health back?

3- What are the chances of full recovery? Most recovery? Some recovery from where I'm already at?

4- What else can I do to help my body more fully recovery?

Things I am already doing:
*Currently I'm finishing up school -- I finish in March -- so I can take more time to really focus on my body and recovery. (I changed to part time 18 months ago because I just couldn't do school full-time in my condition.)
*I'm trying to make sure that I get on average 9-10 hours of sleep -- I've noticed that sleep really helps a lot.
*I'm followign my diet, though sometimes I find that I can sneak a little extra starch 2-3 times a week. (Like 1 piece of whole wheat bread that I make myself, or 1 cup mashed potatoes, or 1/2 cup cooked brown rice. Sneaking sucrose, trans fats, and maltose are out of the question -- can't sneak those yet. Sometimes I can sneak a little more lactose, but still pretty sensitive to it.)
*I'm taking a good vitamin B complex with lots of B9 and B12.
*I'm taking probiotics.
*I'm being very germaphobic in all my contact within and outside my house -- seriously! I take sanitizing wipes and wipe off my desk before even sitting down in class! And I don't allow sick people in my house, and I don't go into houses with sick people.
*Exercise: I was biking which felt great, but had to return to walking. I walk on average 1.5 - 3 miles a day.

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Joined: Fri Jan 16, 2015 5:23 pm

Re: My H. Pylori Survival Story -- and Questions

Post by hypoglycemic »

All through my twenties I struggled with blood sugar issues, terrible heart burn and chronic fatigue. AT 30 my heart burn was so bad I couldbnt eat. I tested positive for Hpylori and did 2 rounds of antibiotics. , at 30 I went off Prozac and experienced constant unbearable hunger and low blood sugar symptoms, that required about 2000 calorie binges to quell. My blood sugar numbers were always normal.

I have to eat 2 lbs of meat a day to stave off what feels like the brink of a hypoglycemic coma- extreme hunger pangs, shaking, heart pals, dizziness, anxiety, blurred vision, the feeling of bugs crawling on my skin. My days consist of eating and sleeping and I have to carry a supply of meat with me everywhere I go!

I was then diagnosed with high levels of mercury poisoning in 2011, and after 8 months of chelation, my health began to dramatically improve. I could go 3-4 hours without eating!

In January of 2014 my doc put me on Valtrex for the Epstein Barr virus. I took it only as needed, maybe 5 days out of every month, Little by little my blood sugar issues worsened and I stopped being able to chelate.

A friend told me that viruses respond very well to a 45 day round of Valtrex, so I started that in August. My health and blood sugar issues dramatically deteriorated again.

The last few months I can’t even leave the house sometimes because I have to be around food. Any time I try to add a supplement; potassium, lysine, adrenal supplements, multi vitamins, anything, my blood sugar crashes again, and it’s very odd, because some times it won’t even respond to food. Like the other day I had to eat 5 jumbo sausages, have a container of ham, 2 bowls of cereal, 2 granola bars and a yogurt before the symptoms began to abate.

It’s much worse at night.

My diet now consists of only organic turkey, chicken, beef, vegetables, berries, apples, yams and rice. I am now 40, so it's been 14 years since I was treated for h pylori. Can anyone help?>>?I am so desperate!

Posts: 9
Joined: Sat Apr 20, 2013 11:51 am

Re: My H. Pylori Survival Story -- and Questions

Post by Buscando »

I have a few things in common with your story, I started having the sympthoms after a episode of heavy stress, I developed cankers in the mouth, the doctor told me that is due to an aggresive immune system, all this is gone, also I developed several intolerances, like gluten, dairy and some starchs.

I can have a normal live without these foods, I have some tolerance, very low to gluten, a little to dairy (not lactose) and some to starchs, I also have other type of symptoms with garlic, I also developed heartburn, PPIs didn't help and I thought that was a heart problem, the pain in the chest and the arm, same story... Removing sugar from the diet and sodas cured it nearly completely, when I cheat I can use some pills that work for me they create a foam in the stomach to protect from the acid raising upwards.

I killed my HP with the cuadruple therapy already more than a year ago, but the food intolerances are still there, I had very hard time, I thought it was something more serious... I also have IBD type sympthoms when I take gluten/dairy (e.g pain and inflamation in the ileum terminal) but after two colonoscopies there is nothing there and the pain doesn't happen if I avoid the foods, then.. I'm sticking with what I know it works fine with me, thinking to do a fecal transplant in the future to see if that recovers my flora.

Posts: 18
Joined: Sat Jun 11, 2016 6:11 am

Re: My H. Pylori Survival Story -- and Questions

Post by photon »

Hello i am in the same position as you but i lost maltose everything that is good for gastritis has maltose so my foods have become 0. I am slowly dying because i cant tolerate all foods for gastritis they give me LPR and bleed subsequently, can you tell me what foods for breakfast lunch and dinner and snacks do you recommend?

I am maltose intolerant and when i eat carbs/maltose I get very dangerous reflux ! Its hard to avoid them because I also have gastritis from h pylori already treated but gastritris still there.
If you tell me ur daily menu or what do you eat i could get some ideas and help tremendously, of course i will follow carefully so please can u tell me what do you eat to cope with maltose intolerance?

thanks. :|

Posts: 5
Joined: Thu Dec 05, 2019 10:08 pm

Re: My H. Pylori Survival Story -- and Questions

Post by thomas.shillingford »

Wow cannot believe wat i have just read. This has helped me alot reading this. I been battling chest pain shooting aches on left side , chest spasms diziness anxiety for 3 years.

Also still trying to treat h pylori for almost 1 year now and to read it could possibly be related dam im shocked and kinda relieved i could possibly have a answer.
Last 6 months i have had upper respiratory issues and only found out its related to my h pylori. Crazy wat it can do to whole body.

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