Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 I thought I would let you know the result of my " leaky gut test " or more properly known as Intestinal Permeability. There were some posting in the summer suggesting a link with rosacea so I thought it would be worthwhile having it checked out. After two screw-ups with the lab analyis I finally got the results of the third attempt today. The test measures the permeability of lactulose and mannitol and also calculates their ratio. The results showed that I do not have a leaky gut and am in fact on the good side of the normal distribution. (0 - 0.8 for the lactulose is the normal range and I was 0.1, 0-30 is normal for the mannitol and I was16 and for the ratio 0 - 0.07 is normal and I was 0.01). So as far as my rosacea is concerned the leaky gut theory does not apply. Regarding the lack of knowledge of rosacea by dermatologist I am not surprised. I think one great thing about the INTERNET is that it is showing how poorly most diseases are understood by the medical profession. Look how many billions has been spent on research into cancers and still how little is known about them. If you check the stats you will see that most of the ones that have significantly declined (such as stomach cancer) have been for environmental reasons or diet changes, not medical. Now that patients can interact through egroups we are seeing the real picture that was previously difficult to get. It does not surprise me in the least, however, as body chemistry is extremely complex and the amount of new information is almost overwhelming, so how can one expect a doctor to be knowledgeable (especially GP's) in many areas? Even dermatology covers a multitude of diseases each with their own peculiartities and then throw in the individual patient's body chemistry and you will realise why there are so few cures around (plus of course the major players in the game, such as drug companies, would make far less money if they developed cures rather than " contolling " our illnesses). I see rosacea as a series of diseases with common symptons but a variety of causes. It shows as a vascular disease with dilated, weak blood vessels but the underlying causes may be different (why is it limited mainly to the face?). In my case it is genetic as my father had it. So far I see no cure - photoderm, which has been claimed as a cure really puts you back several years or more by removing a lot of the damage but I'm not convinced the disease has been cured. I have tried just about everything except the physical treatments but only antibiotics seem to control it. When I first joined I suggested we fund our own research - far cheaper than the thousands we are all spending on the disease - but the response was only warm. I see from our Canadian members that the availability of photoderm is almost next to zero is this land of free medicare. Does anyone know of a clinic in Ontario? Merry Xmas to you all. Gord Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Gord, Thankyou so much for investigating your intestinal permeability. The only way to really eliminate these possibilites is to just go out there and do it. This damn disease is such a frustrating thing to beat - but I'm still convinced that there is now a well established pattern of symptoms that regularly (although not always) accompany this disease. Symptoms that largely stem from some sort of dysfunction of the digestive system. And remember that at earlier times it was a widely held belief that rosacea was caused by some kind of digestive problem, but because no consistent findings have ever been established in numerous studies, the whole idea was eventually dismissed. I personally believe that this was a big mistake - there have been numerous studies over the years that turned up various patterns of digestive malfunction, but unfortunately these findings could never be consistently demonstrated and the medical community finally gave the idea a big thumbs down. Also if you consider the number of patients who suffer from Crohn's or Ulcerative Colitis or other symptoms of inflammatory/irritible bowel who also suffer from rosacea it just seems too premature to dismiss the whole idea based on a few fallible experiments. Also it has to be noted that no study has yet been conducted to assess intestinal permeability in rosacea patients (partly I imagine because this is a relatively new means of investigating digestive function), when (as I have mentioned in previous posts) the evidence is screaming out for some sort of investigation and if intestinal permeability did play a role then it wouldn't even be possible to establish a consistent " old fashioned " observation to confirm such a diagnosis. I also think recent discussions about the lack of knowledge within the medical community are right - before I developed this disease, I just assumed that doctors were well informed about all conditions and that their opinions should be completely trusted. However, as I have studied this disease, I have realised that the average doctor often considers rosacea to simply be a variant of adolescent acne and should be treated as such. A mistake that might often worsen the condition in most patients. Also the number of times leading dermatologists absolutley prohibit the use of corticosteroids in the treatment of rosacea and the number of poor individuals who turn up on this group experiencing terrible rebound symptoms when they try to stop this medication is amazing. How does this apparently " well known " information fail to filter down to the doctors who actually treat this disease? Anyway, although this is a bit of a blow, I'm still holding out that something close to intestinal permeability plays a role in this disease. When I say close it is either that the actual process of inflammation of the digestive tract releases material in to the blood stream that causes the rosacea or that intestinal permeability still plays a role, but is more difficult to detect - this would be especially likely if the increased IP was caused by exposure to particular food allergens. Gord, can I ask if you suffer from any known food allergies or if you suspect that you do. Also would you describe your rosacea symptoms as being less/more/normal than usual at the time of taking the test. Anyway, thanks again for following up this lead and I hope everyone has a very merry christmas. Seth ______________________________________________ FREE Personalized Email at Mail.com Sign up at http://www.mail.com/?sr=signup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Gord, Thankyou so much for investigating your intestinal permeability. The only way to really eliminate these possibilites is to just go out there and do it. This damn disease is such a frustrating thing to beat - but I'm still convinced that there is now a well established pattern of symptoms that regularly (although not always) accompany this disease. Symptoms that largely stem from some sort of dysfunction of the digestive system. And remember that at earlier times it was a widely held belief that rosacea was caused by some kind of digestive problem, but because no consistent findings have ever been established in numerous studies, the whole idea was eventually dismissed. I personally believe that this was a big mistake - there have been numerous studies over the years that turned up various patterns of digestive malfunction, but unfortunately these findings could never be consistently demonstrated and the medical community finally gave the idea a big thumbs down. Also if you consider the number of patients who suffer from Crohn's or Ulcerative Colitis or other symptoms of inflammatory/irritible bowel who also suffer from rosacea it just seems too premature to dismiss the whole idea based on a few fallible experiments. Also it has to be noted that no study has yet been conducted to assess intestinal permeability in rosacea patients (partly I imagine because this is a relatively new means of investigating digestive function), when (as I have mentioned in previous posts) the evidence is screaming out for some sort of investigation and if intestinal permeability did play a role then it wouldn't even be possible to establish a consistent " old fashioned " observation to confirm such a diagnosis. I also think recent discussions about the lack of knowledge within the medical community are right - before I developed this disease, I just assumed that doctors were well informed about all conditions and that their opinions should be completely trusted. However, as I have studied this disease, I have realised that the average doctor often considers rosacea to simply be a variant of adolescent acne and should be treated as such. A mistake that might often worsen the condition in most patients. Also the number of times leading dermatologists absolutley prohibit the use of corticosteroids in the treatment of rosacea and the number of poor individuals who turn up on this group experiencing terrible rebound symptoms when they try to stop this medication is amazing. How does this apparently " well known " information fail to filter down to the doctors who actually treat this disease? Anyway, although this is a bit of a blow, I'm still holding out that something close to intestinal permeability plays a role in this disease. When I say close it is either that the actual process of inflammation of the digestive tract releases material in to the blood stream that causes the rosacea or that intestinal permeability still plays a role, but is more difficult to detect - this would be especially likely if the increased IP was caused by exposure to particular food allergens. Gord, can I ask if you suffer from any known food allergies or if you suspect that you do. Also would you describe your rosacea symptoms as being less/more/normal than usual at the time of taking the test. Anyway, thanks again for following up this lead and I hope everyone has a very merry christmas. Seth ______________________________________________ FREE Personalized Email at Mail.com Sign up at http://www.mail.com/?sr=signup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Hi Seth Thanks for your interesting comments. The reason I can not find any connection with my rosacea and diet are the following: (By the way I have spent most of my working life as a research chemist so have tended to experiment a lot with different foods, medications, etc., to determine their effect on my rosacea). I am 56 years old extremely fit (whether that equates to healthy I'm not sure) male. I play soccer twice a week (still haven't grown up!!) and can run 5 miles without blinking. My friends reckon I am fitter than most 40 year olds. I have no aches or pains or known illnesses except rosacea. I started with acne as a kid and it progressed over the years to rosacea. At present I am permanently red - I have not discovered any triggers. I have no known allergies and can eat just about anything Rarely have had stomach problems in my life (except when on large doses of tetracycline). Have lived in England, Canada and Japan, travelled extensively and eaten all the different foods available without any problem. Never was into sweet foods though - love fruit and veg. I have been on an O-blood type diet (no wheat or dairy) since June at recommendation of my naturopath and maybe have seen a slight improvement. I also gave up coffee but drink lots of green tea. I drink beer 3/4 times a week (remember " Guinness is good for you " !!)- my father never drank alcohol but had severe rosacea. I keep trying all the posted suggestions (presently trying the MSM) in the hope of an improvement. Other comments: I was tested for h.pylori three years ago and was negative. My wife who died 3 years ago from stomach cancer at age 49, (after being misdiagnosed (menopause) by a female doctor), was h.pylori positive and had great skin. A colleague of mine in mid-twenties has had Crohn's since age 12 but has flawless skin. I agree with all your comments about dermatologists. Hope you can see why in my case I don't think diet is has had much effect on my rosacea. But as I see from the many posting we are all different and it may be important for some people. Best wishes Gord Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2000 Report Share Posted December 23, 2000 Perhaps your vigorous work-outs have progressed rosacea. Also, weather can be a factor. If you run in the cold or heat this is rough on for rosacean skin. You may need laser to revers some of the progress rosacea has made and then rethink your lifestyle so that it is kept under control. Good luck. Fran - Re: Re: Leaky Gut, etc Hi Seth Thanks for your interesting comments. The reason I can not find any connection with my rosacea and diet are the following: (By the way I have spent most of my working life as a research chemist so have tended to experiment a lot with different foods, medications, etc., to determine their effect on my rosacea). I am 56 years old extremely fit (whether that equates to healthy I'm not sure) male. I play soccer twice a week (still haven't grown up!!) and can run 5 miles without blinking. My friends reckon I am fitter than most 40 year olds. I have no aches or pains or known illnesses except rosacea. I started with acne as a kid and it progressed over the years to rosacea. At present I am permanently red - I have not discovered any triggers. I have no known allergies and can eat just about anything Rarely have had stomach problems in my life (except when on large doses of tetracycline). Have lived in England, Canada and Japan, travelled extensively and eaten all the different foods available without any problem. Never was into sweet foods though - love fruit and veg. I have been on an O-blood type diet (no wheat or dairy) since June at recommendation of my naturopath and maybe have seen a slight improvement. I also gave up coffee but drink lots of green tea. I drink beer 3/4 times a week (remember " Guinness is good for you " !!)- my father never drank alcohol but had severe rosacea. I keep trying all the posted suggestions (presently trying the MSM) in the hope of an improvement. Other comments: I was tested for h.pylori three years ago and was negative. My wife who died 3 years ago from stomach cancer at age 49, (after being misdiagnosed (menopause) by a female doctor), was h.pylori positive and had great skin. A colleague of mine in mid-twenties has had Crohn's since age 12 but has flawless skin. I agree with all your comments about dermatologists. Hope you can see why in my case I don't think diet is has had much effect on my rosacea. But as I see from the many posting we are all different and it may be important for some people. Best wishes Gord ----------------------------------------------------------------- Please read the list highlights thoroughly before posting to the whole group. See http://rosacea.ii.net/toc.html When replying, please delete all text at the end of your email that isn't necessary for your message. To leave the list send an email to rosacea-support-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2000 Report Share Posted December 23, 2000 Perhaps your vigorous work-outs have progressed rosacea. Also, weather can be a factor. If you run in the cold or heat this is rough on for rosacean skin. You may need laser to revers some of the progress rosacea has made and then rethink your lifestyle so that it is kept under control. Good luck. Fran - Re: Re: Leaky Gut, etc Hi Seth Thanks for your interesting comments. The reason I can not find any connection with my rosacea and diet are the following: (By the way I have spent most of my working life as a research chemist so have tended to experiment a lot with different foods, medications, etc., to determine their effect on my rosacea). I am 56 years old extremely fit (whether that equates to healthy I'm not sure) male. I play soccer twice a week (still haven't grown up!!) and can run 5 miles without blinking. My friends reckon I am fitter than most 40 year olds. I have no aches or pains or known illnesses except rosacea. I started with acne as a kid and it progressed over the years to rosacea. At present I am permanently red - I have not discovered any triggers. I have no known allergies and can eat just about anything Rarely have had stomach problems in my life (except when on large doses of tetracycline). Have lived in England, Canada and Japan, travelled extensively and eaten all the different foods available without any problem. Never was into sweet foods though - love fruit and veg. I have been on an O-blood type diet (no wheat or dairy) since June at recommendation of my naturopath and maybe have seen a slight improvement. I also gave up coffee but drink lots of green tea. I drink beer 3/4 times a week (remember " Guinness is good for you " !!)- my father never drank alcohol but had severe rosacea. I keep trying all the posted suggestions (presently trying the MSM) in the hope of an improvement. Other comments: I was tested for h.pylori three years ago and was negative. My wife who died 3 years ago from stomach cancer at age 49, (after being misdiagnosed (menopause) by a female doctor), was h.pylori positive and had great skin. A colleague of mine in mid-twenties has had Crohn's since age 12 but has flawless skin. I agree with all your comments about dermatologists. Hope you can see why in my case I don't think diet is has had much effect on my rosacea. But as I see from the many posting we are all different and it may be important for some people. Best wishes Gord ----------------------------------------------------------------- Please read the list highlights thoroughly before posting to the whole group. See http://rosacea.ii.net/toc.html When replying, please delete all text at the end of your email that isn't necessary for your message. To leave the list send an email to rosacea-support-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
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