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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Mr J

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About Mr J

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    surfing, skateboarding, puters, my health (which isn't in the best of shape)
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    Melbourne, Australia
  1. Happy birthday and may God bless you today!

  2. I once had candida overgrowth of the intestines and elevated cortisol (enough to get tested for cushings syndrome, but the docs decided it wasn't elevated enough for that). I never made the connection between the two at the time, but maybe there was - anyway thats back to normal now. candida was self diagnosed, docs don't recognise it and I couldn't be bothered to pay for outside lab tests and because my symptoms went when I treated it, i'm fairly sure thats what it was. initially I took a very poweful herb mixture containing amongst other things wormwood, this made my alternating constipation and D go away, but shortly after stopping the one month course it all came back again. This happened twice, so for me a one off cure treatment is no good instead I need daily maintenance. what keeps me happy is a daily intake of the following 3 things: 1. a gentler herb mixture called "intestinal cleanse #1", i've been taking just one capsule of this for years with no dependency (ie no need for increasing amounts) http://healthfree.com/shop/index.php?actio...mp;prevstart=24 2. strong pro-biotics 3. A fibre digesting enzyme called "no phenol", apparently this can eat the yeast plant http://houstonzymes.com/mm5/merchant.mvc?S...tegory_Code=nof I eat lots of carbs everyday - rice, sometimes gatorade if I'm active, some chocolate. Products 1. and 2. above seemed to get my colon motility under control. When I introduced 3. (i sprinkle the powdered form on food) I finally got rid of the white coating on my tongue. This works for me, the drawback is that I can't stop this daily intake, but I don't mind, taking these 3 things is not so bad.
  3. the fact that I take reglan every day means i have weighed up the pros and cons and am prepared to deal with the side effects. i am under the influence of this drug right now and I had mentally composed an explanation of hwo its a dopamine antagonist but now I'm too sleepy its got a strong bitter taste. for my condition it should be taken on an empty stomach, i've taken it with coca-cola nd it seemed to still work, but I prefer to give things the benefit of the doubt and take with water only (i drink about 1/2 a glass and that works for me). my experience is that its not a cumulative type drug that needs to be taken for days to get the benefit - i can feel my stomach start to contract and crunch within minutes. if it hasn't helped the reflux maybe its coz your son spit it out. i take the tablet form, so taste isn't really a consideration. for my condition its very effective
  4. hello e&j if its in use for GERD on the message board you visited i am obviously mistaken in my original belief that reglan wasn't meant as a direct fix for GERD. However I am quite sure that it works by making the stomach empty into the small intestine. because of my gastroparesis i spent a fair bit of time on the yahoo message board, of all the drugs being used to treat gastroparesis the members reported the most side effects with this one. because I take thsi drug I have done some research too and the most worrying thing is the involuntary muscle motions you mentioned - however this hasn't happened to me. sometimes even after stopping the drug those unwanted muslce movements will occur - my gastro doc confirmed this to me too. I would go so far as to say that it makes a right mess of my brain for about 2 1/2 hrs then I am back to normal. some of the yahoo gp group reported depression was a symptom, but it doesn't affect me this way at all. However I plan on continuing with it indefinately if I don't get the involuntary muslce motions (tardive kinesis or something like that its called). A safer drug with similar effect to reglan is domperidone aka motillium. I take 2 of these per day. my regimen is take one motillium 20 min before brekky. take another before lunch. then take 1 reglan before evening meal (i'm on liquid snacks as well). the reason why i take a reglan in the evening and not a motillium is that reglan is more effective with me and i can eat more. i cannot take reglan during the day and do my job.
  5. omeprazole - PPI, GERD is one of the symptoms of gastroparesis. my non medical wayof finding out that I had it was to get my hands on the drugs "reglan" and "domperidone", because these fixed my symptoms it more or less confirmed that I had it. In my case gluten-free helps but doesn't cure me, I need these drugs. I've had many years of unecessary underweight misery without proper diagnosis, some of my story here eos disorder thread
  6. I take one 10mg tablet every day in the evening (see my recent posts on the food intolerances forum) for gastroparesis. I am an adult weighing about 123lb, it muddles my brain and makes me very drowsy. I deal with it by sleeping for a couple of hours after ingesting it prior to my evening meal. I don't like this drug at all but I need to eat! this drug is not meant to be a fix for reflux, it is intended to stimulate motility in the stomach and allow the stomach to empty properly. (although one of the possible symptoms of poor stomach motility can be reflux)
  7. just in case some forum members have this problem without realising it here are my symptoms (although like a lot of these obscure gastro diseases symptoms vary) 1. poor/no appetite 2. underweight 3. bloating after eating 4. food just seems to sit in the stomach without digesting. 5. Just about any food causes this problem, although tough foods such as meat are the worst. 6. simple sugar liquids such as gatorade or coca-cola go down ok (provided the stomach is empty). 7. liquids such as milk or protein drinks do not go down well and cause the above problems. 8. it takes hours and hours to digest a meal, which makes it difficult to eat much. attempting to eat on a bloated stomach will just make things worse.
  8. I have got hold of this drug motillium, first my wife knows a chemist in Thailand and got me an illicit supply with which I dosed myself. Then my request to get a second opinion from another GI doc at kaiser got me a supply from Canada. I have been using this drug for 2 months now. It more or less solves all my problems, this means that I do not have eos gastrioenteritis because this drug does not (as far as I know) fix that problem. My problem is therefore motility. I lead close to a normal eating life now (still gluten-free). I can do things like eat eggs and rice all in the same meal and get it thru my system without experiencing any GERD or need for digestive enzyme supplements. Not 100% normal though, motillium is not as effective as mind altering reglan, so to get extra calories in me I take reglan in the evening when I don't have to think, I then deal with it by sleeping for a couple of hours after eating. This then means that I can't sleep if I try to sleep at a normal time so go to sleep in the night really late!
  9. in my case yes, it took 2 weeks of absolutely no cheating completely gluten free before my stomach started to operate its churning mechanism again. See my signature and my posts on the eosinophilic disorders thread. Not many forum members here report it, but from some of the symptoms being described I think some others have it. cheers, Mike
  10. hello azmom, the allergy doc spotted a previously ignored result - low chloride and sent me for the sweat test and gene test. I tested borderline leaking of chloride thru sweat and negative for (if I remember rightly 25 mutations of) CF genetics. Apparently there are hundreds of mutations, so although the subset that was tested catches most cases it won't catch all. The doc's never did actually give me an answer on what that means but I made my own mind up that it was unlikely given my age and aerobic capacity which is fine, childhood asthma went away. Now that I've passed my self imposed McDonald's fat challenge I'm sure I don't have it and am leaking chloride for unknown reasons. I get plenty of salt in my diet, crave it and with low blood pressure see no reason to reduce my intake. cheers
  11. someone who is lactose intolerant (milk sugar) but not intolerant to the protein in milk would show that symptom. Cheeses and sour cream have had much of the lactose digested away by the bacteria culture that turns ordinary milk into those products. I suppose if you are brave you could test that by drinking a glass of "lactaid" milk, if you are ok with that then the next day try a glass of ordinary milk I've tried that and decided that I am not lactose intolerant cheers
  12. i have now had my appt with the gastro doc last wed and corresponded with him by email since. The experience makes me angry. so the summary of the situation is that I asked him about the raised eos levels by email but got no answer, I then politely argued with him about various things during my appt. with an outcome of not running extra tests which I asked for, but at least re-running some tests one of which measure my eos levels - initially he didn't want to do any tests. Previously the levels were 12 (High > 4 threshold), new tests measured 20. I asked the question again: "raised peripheral eos + unknown gi distress => test for eosinophilic GES?" - no answer. I relayed my frustration to my general doc and she will refer me to another gi specialist at another kaiser location for a second opinion, so thats something at least. the rest of this post is just going to be an off-topic vent I'm afraid. I do feel comforted knowing that others on this msg board are fighting ignorance, so i'll post my experiences for those who are interested. my situation is that I have had gluten induced motility (gi movement/throughput) problems in at least 2 sections of my gi tract - delayed stomach emptying (called gastroparesis) and constipation. Both these problems fixed by removing gluten - stomach now rumbles readily which means smooth muscle of stomach is contracting, no more constipation means smooth muscle of large intestine is contracting. However I need an enormous amount of digestive enzyme supplements and need to eat tiny little meals in order to digest anything. So both myself and a gi specialist who I saw briefly in thailand (thats where my wife is from hence a visit to that country) suspects malfunctioning pancreas - not unreasonable particularly as i test borderline for 2 cystic fibrosis tests, although it would have to be a fairly weird mutation of CF that spares my lungs - i have normal capacity. Doc's answer is "but your blood albumin levels are normal", i've previously protested that "i'm only on 1,100 calories" - docs answer "but your blood albumin levels are normal" - his answer to everthing. I explain that he shouldn't put all his faith in a few tests and tell him with such a small food intake and on such a high intake of enzymes that the previous malabsorption test wouldn't mean anything. I'd been told that it was ok to carry on enzyme supplements for this test but with reflection of course it would skew the results. the atmosphere during visit got tense but remained civil so he said alright he will re-run blood and malabsorption, but not the specific pancreas tests i asked for. and I said ok what i will do this time is completely stop my supplements, eat normal quantities of food, get sick but at least get some meaningful results. For once he sounded almost human and suggested that maybe i'd want to wait until after enjoying thanksgiving before making myself sick with a "normal food" challenge. By normal i mean normal quantity - no gluten of course, piecing together various online literature tells me that 100gm intake of fat is ideal for the malabsorption test - too much fat and even a normal body can't cope, too little and it doesn't work the lipase production of pancreas and small intestine hard enough. I tell the doc no, thanksgiving is perfect time, i'm not American so don't celebrate this culturally american event, i could get sick thurs and fri, then spend sat and sunday recovering and be in reasonable shape for work monday. Off topic is that I'd had a bad slam in the half pipe on my skateboard too and needed to rest anyway so I thought that is the best time for that test. So on thanksgiving day I drove to McDonalds for my "fat challenge"... and started to get sick. then I thought dammit, I'm going to force the food thru my system with a motility drug called "reglan" aka metoclopramide - sometimes given to ppl who are experiencing severe nausea from AIDS or something but in my case to increase my loss of motility - this drug seriously messes with the mind which is why i previously abandonded taking it. It won't skew the results I thought coz all it will do is achieve normal quantities of food intake without the awful bloating and nausea - basically it would put me in the position of many celiacs who have normal quantities of food intake but can't absorb properly. In my situation I believed my pancreas would fail to cope thus causing malabsorption from failure to digest rather than flattened villi. the reglan spaced me out, but sure was effective at getting a normal intake without nausea. It was quite novel experience to be able to eat burger and chips (fries) without nausea. i expected to get steatorreah but didn't! number 2 looking quite normal well well pancreas is working after all, looks like a motility problem in just the middle section of my gi -tract. Unusual, typically gastroparesis sufferers have slowness in all 3 sections. I mail this suggestion to the gi doc => no bloody answer is this man just arrogrant or ignorant? this is of course good news that my pancreas is working and as expected fat absorbtion test result was good - very good handling 2 days of McDonalds. Extra good thing was that my injury wasn't as bad as I initially feared and was able to skateboarding the next day - early morning before injesting the drug But this of course leaves me with my only current "cure" being a drug which messes my mind so much that I can't work when on it, plus unanswered eos questions. I know of 2 other motility drugs - desparation drove me to experimenting with Kava Kava a while ago - like reglan a dopamine antagonist - and it works! bad thing is that the amount I need to get a motility effect is large - 1/2 ounce dry weight which i turn into a drink. this makes me sleepy the next day and it is a mind altering drug so out of the question to be stoned during the day in work. So I'm currently managing by taking liquid meals only during the day only and getting wasted on reglan and/or kava in the evenings and eating solid food then. I've been able to put some weight on too, but this life is hardly normal. I tell the gi doc this and his response "glad to hear you are doing well". Doing well? liquid only during the day, stoned at night. This man is not arrogant, he is plain bloody stupid I know of another drug - just like reglan but not mind altering legal in Canada but not FDA approved here - "domperidone aka motillium", so there are many Canadian drug companies which take advantage of legal a loophole for such medicines, they get a US doc's prescription and then re-write it by Canadian docs before shipping the drug across the border. so I explain this to the doc and ask for his prescription, even going so far as to say i will take full responsibility for any negative effects. His answer was yes this drug won't mess my mind like reglan but no he is not allowed to do that not only is he stupid he doesn't want to help me either. he wouldn't even commit himself to saying that the drug is good idea, he seems more interested in protecting himself than giving advice. is eos levels in my small intestine causing my loss of motility is my current question - no answer from doc on that one either. I really think this doc is out of his depth, i need another one. ah well life is not all bad, put some weight on, discovered my pancreas is ok, had enough energy to skateboard every day before work this week. Can handle with being spaced out in the evening for the moment (about 2 1/2 hrs before my senses come back). cheers, Mike
  13. bile from the small intestine, thats the Pyloric Sphyncter malfunctioning - the valve that lets food out of the stomach into the small intestine, but normally prevents travel in the opposite direction. Ordinary GERD involves malfunction of the LES (Lower esophageal sphycter- the valve located where the tube from the mouth to the stomach joins with the stomach. Poor appetite too? I wonder, maybe gastroparesis and/or motility problems in the small intestine? gastroparesis means delayed emptying of the stomach a type of lack of motility problem. Motility is rhymic contraction of the smooth muscles (autonomous) in the gi tract. Lack of motility in the small intestine means food doesn't digest easily (as does gastroparesis). If this is the case then getting good digestion is the important thing rather than finding acid reduction methods. Whatever, much of the advice already given on this thread regarding carbs applies. I've had gastroparesis and believe I am currently suffering from slow motility in the small intestine. I can eat complex carbs provided I don't mix it with protein. Simple carbs are no problem for my condition eg. gatorade provided I ingest it on an empty stomach. Big meals are out of the question for me. cheers, Mike
  14. cheers for the probiotic suggestion SurreyGirl, I didn't realise the friendly bacteria made b12. I've only been tested for H-pylori, was negative (the only thing my docs understand). I'm actually taking in 3 to 4.5 billion of the little friendlies every day Together with the Houston No Phenol brand of enzyme they keep the candida at bay for me, makes a big difference. you mention the psychological effects of unwanted bacteria, I used to hang out at group who you might already know, they are experts on that subject. Members are mainly mums of autistic children, but some are like me and just there for general enzyme health knowledge. I use the No Phenol enzyme for its fiber digesting capacity, but a lot of the mums on that group use it to break down substances that cause bad moods in their children. http://health.groups.yahoo.com/group/EnzymesandAutism/ Mike
  15. I found pissing fluorescent yellow a bit disconcerting, so did a web search and it seems that everyone who was prepared to post on that subject exhibits that phenomenon after taking b complex tabs. further web searches indicate that it is B2/riboflavin which is yellow and responsible. A B12 colour search revealed: Because of the striking dark red color of its crystals, vitamin B12 has been called "nature's most beautiful cofactor." and Vitamin B12 has no known toxicity and B12 surplus to requirement is simply passed out in the urine (which may discolour pink). cheers, Mike PS I'm on this thread coz me too, I have peripheral neuropathy - its got a lot better better, but I still get numbness in hands and tend to drop things. Some of the information posted here is news to me, I didn't realise that sometimes extra vit b12 can help even when it tests normal in the blood. Mine was tested at 912 which > 200. But given my symptoms plan on giving sublingual b12 a go. Houston supplements in the US from which I mail order other stuff does it.