Polly,
I am also on a GF diet since July because of Dr. Fine's tests. My GI doctor recommended his tests because I was neg to blood and biopsy for celiac. My D is basically the same though. The only thing I have noticed being GF is the foul smell is gone. Now any poop is foul smelling but this was REALLY foul. That is gone. I still have the D everyday.
What is interesting is that my GI doctor said that 24% of the general population has the genes and the antibodies for gluten intolerance with no symptoms. He wants me to stay on the diet for now but since I have not improved he questions if I really need to be on this diet.
Did you notice that foul smell before GF? You said it took 9 months for the D to stop. Was it gradual? (I am also fructose intolerant and am FF for now. Still trying to figure that one out too.) Thanks! You all give me hope. That is all I have right now.
Pat
I'm an overwhelmed newbie.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
To all of you - thank you for your kind words and encouragement. I'm back to 3 Entocort a day and feeling much better.
I too was diagnosed with chronic sinusitis. Probably 5 years ago. I never would have thought there could be a correlation from "one end to the other"!
I keep reading and learning. I am very thankful for you all. I'm glad I can go through this journey with you.
Becky
I too was diagnosed with chronic sinusitis. Probably 5 years ago. I never would have thought there could be a correlation from "one end to the other"!
I keep reading and learning. I am very thankful for you all. I'm glad I can go through this journey with you.
Becky
Becky
Pat,
I'm not sure, but I would assume that all of us went through that "odor bad enough to gag a maggot" phase. Even today, when we slip up, and react, we are quickly reminded of that time in our lives, as our olfactory senses are assaulted once again. LOL.
Anyway, my point is, if you are at the stage where the odor is back to normal, you are definitely making some serious progress. If the D does not end soon, I think I would begin to look for other causes, (that is, possible causes other than gluten, possibly even a medication).
Regarding the possibility of dropping the GF diet, as your doctor suggests:
When you had the tests done at Enterolab, did you have them test for intestinal damage, (fecal fat score)? If you tested positive for gluten sensitivity, and the fecal fat test showed that you have intestinal damage, (fecal fat score over 300), then it is quite likely that, (as is the case with celiacs), long-term lack of treatment, (IOW, not following the GF diet), may lead to a significantly higher long-term risk of certain intestinal cancers, such as lymphoma. Your doctor might not be aware of that risk, since most doctors tend to associate that risk with untreated celiacs, rather than gluten sensitive individuals, in general.
Becky,
Glad you're feeling better.
Tex
I'm not sure, but I would assume that all of us went through that "odor bad enough to gag a maggot" phase. Even today, when we slip up, and react, we are quickly reminded of that time in our lives, as our olfactory senses are assaulted once again. LOL.
Anyway, my point is, if you are at the stage where the odor is back to normal, you are definitely making some serious progress. If the D does not end soon, I think I would begin to look for other causes, (that is, possible causes other than gluten, possibly even a medication).
Regarding the possibility of dropping the GF diet, as your doctor suggests:
When you had the tests done at Enterolab, did you have them test for intestinal damage, (fecal fat score)? If you tested positive for gluten sensitivity, and the fecal fat test showed that you have intestinal damage, (fecal fat score over 300), then it is quite likely that, (as is the case with celiacs), long-term lack of treatment, (IOW, not following the GF diet), may lead to a significantly higher long-term risk of certain intestinal cancers, such as lymphoma. Your doctor might not be aware of that risk, since most doctors tend to associate that risk with untreated celiacs, rather than gluten sensitive individuals, in general.
Becky,
Glad you're feeling better.
Tex
Tex,
Thanks for the link. I printed it out from the other thread. I will show it to my ENT. He is a personal friend and I will see him Thanksgiving day.
I think my fecal fat score was 300.
And I don't take any meds now except immodium, calcium/D, flax oil, usually fish oil (out right now), and a multivit/mineral. I've made sure that there is no gluten, casein, soy, or sugar in them. I am fructose free also so hopefully soon I will notice some improvement. Being fructose free is much harder than the others. I really miss fruit.
Pat
Thanks for the link. I printed it out from the other thread. I will show it to my ENT. He is a personal friend and I will see him Thanksgiving day.
I think my fecal fat score was 300.
And I don't take any meds now except immodium, calcium/D, flax oil, usually fish oil (out right now), and a multivit/mineral. I've made sure that there is no gluten, casein, soy, or sugar in them. I am fructose free also so hopefully soon I will notice some improvement. Being fructose free is much harder than the others. I really miss fruit.
Pat
Polly,
I read the other thread first. But to answer this question, I was given the hydrogen breath test. You only have to hit 20 to be considered intolerant and mine was 113. I also had the lactose test but it was neg. Then I had Dr. Fine's test and casein was pos. So no dairy either. I knew it would be pos because I would get reflux with the dairy.
Pat
I read the other thread first. But to answer this question, I was given the hydrogen breath test. You only have to hit 20 to be considered intolerant and mine was 113. I also had the lactose test but it was neg. Then I had Dr. Fine's test and casein was pos. So no dairy either. I knew it would be pos because I would get reflux with the dairy.
Pat
Hi Pat,
I think we've discussed this before, but the fact of the matter is that hydrogen breath tests are highly unreliable as diagnostic tools, for someone with MC. Chances are, you are no more fructose intolerant than the rest of us. The primary problem is that hydrogen breath tests are designed for people with fully functional digestive systems, and when they are applied to people with damaged digestive systems, the results are skewed. For example, they don't work at all, for celiacs, and many of us are only a "technicality-in-the-testing-procedures" away from being celiacs. When we are reacting, we all have damaged digestive systems.
In fact, true fructose intolerance is genetic, and is extremely rare. The symptoms begin at birth, because the ability to produce a necessary enzyme is missing. In all other cases, the condition is transient, (if it actually exists at all). Here is a quote from an article at Gut Online, (BMJ Journals), that was published November 6, 2005, and discusses the problems with hydrogen breath tests. The article is called "Use and abuse of hydrogen breath tests":
http://gut.bmj.com/cgi/content/full/55/3/297
Obviously, I can't say with any certainty that you're not fructose intolerant, it's definitely a possibility, at least on a temporary basis, but it's highly likely that you are simply experiencing the same digestive issues with sugars, that many of us here have experienced before our guts healed, so that we could achieve remission.
I'm not questioning your test results, (IOW, I have no doubt that your test score was indeed 113), what I'm saying is that the test is not valid for someone with a damaged digestive system. It's a "Catch 22" situation - the test is designed to detect malabsorption, but it doesn't work properly on people who have malabsorption problems, (due to intestinal damage). I believe that Mike has done a lot of research on these tests, and raised some questions about their validity for us, also.
Tex
P S In a nutshell, here's why the tests don't work for us. (This is strictly my opinion, by the way). They measure hydrogen emission, which is a byproduct of fermentation in the intestines. When we are having malabsorption issues, it is because of incomplete digestion. With incomplete digestion, by default, we are going to have some amount of fermentation going on in our colons, and probably occasionally even in our small intestines, simply because incompletely digested food, (or chime), is going to ferment in that warm, moist, environment. This can produce copious amounts of hydrogen gas, which will, obviously, skew the test results.
I think we've discussed this before, but the fact of the matter is that hydrogen breath tests are highly unreliable as diagnostic tools, for someone with MC. Chances are, you are no more fructose intolerant than the rest of us. The primary problem is that hydrogen breath tests are designed for people with fully functional digestive systems, and when they are applied to people with damaged digestive systems, the results are skewed. For example, they don't work at all, for celiacs, and many of us are only a "technicality-in-the-testing-procedures" away from being celiacs. When we are reacting, we all have damaged digestive systems.
In fact, true fructose intolerance is genetic, and is extremely rare. The symptoms begin at birth, because the ability to produce a necessary enzyme is missing. In all other cases, the condition is transient, (if it actually exists at all). Here is a quote from an article at Gut Online, (BMJ Journals), that was published November 6, 2005, and discusses the problems with hydrogen breath tests. The article is called "Use and abuse of hydrogen breath tests":
I've only quoted the part of the article that refers to hydrogen breath testing for fructose malabsorption - the full article is pretty comprehensive, and discusses the shortcomings of hydrogen breath testing for various other issues, also. The article is here, but if you only see an abstract, you may have to register, in order to see the full article:Fructose malabsorption
Fructose absorption
Fructose is a ketohexose occurring naturally in its free form or as sucrose (glucose+fructose). It is widely used as a sweetener in different foods, beverages, and candy, and it is also present in fruits such as apples, peaches, cherries, and pears.45 It is absorbed by carrier mediated facilitated diffusion and results indicate that the capacity for fructose absorption is small compared with that for sucrose and glucose.46 The absorptive capacity for fructose varies greatly, but as high as 30–80% of healthy individuals tested with a hydrogen breath test demonstrated incomplete absorption of a 10% solution of 50 g of fructose.47–49 These studies also demonstrated that the absorptive capacity was unrelated to age or sex but that it was dose and concentration dependent. To put this dose into perspective, mean daily intake of free fructose (sucrose excluded) in the US population has been found to be 16 g/day but "heavy" consumers may reach 60–100 g/day.50
Testing for fructose malabsorption
When testing for fructose malabsorption, 25–50 g of fructose dissolved in 150–250 ml of water have been used. Methodology and interpretation of results is otherwise similar to lactose, as described above (fig 2Go). It is unclear what the optimal dosage of fructose is to detect clinically meaningful malabsorption. Another unresolved issue is how symptoms should be assessed during the test and to what extent these are reliable, as very few blinded studies have been performed and the majority of studies are also uncontrolled. Of great importance is also the fact that simultaneous ingestion of glucose increases fructose absorption,48,49 and the majority of dietary sources of fructose also contain glucose. On the other hand, simultaneous ingestion of sorbitol, a naturally found sugar alcohol often used as a "sugar free" sweetener by the food industry, increases malabsorption of fructose.51 Therefore, breath testing of fructose alone probably does not reflect fructose ingestion in everyday life, making interpretation of the test extremely unreliable from a clinical point of view.
Fructose malabsorption in functional gastrointestinal disorders
A controversial issue is the importance of symptomatic malabsorption of fructose and/or sorbitol in IBS and other functional gastrointestinal disorders. Based on the few direct comparisons existing in the literature, malabsorption of fructose and/or sorbitol is not more frequent in IBS patients than in healthy subjects.6,31,52,53 However, one study demonstrated that IBS patients with incomplete absorption of fructose had significantly more severe symptoms after ingestion of fructose than IBS subjects without malabsorption, and the symptoms were enhanced by adding sorbitol, supporting the role of symptomatic fructose-sorbitol malabsorption in IBS.5 A subsequent large study reported a similar proportion of fructose-sorbitol malabsorption in IBS patients with and without symptoms after intake of fructose and sorbitol, opposing the view of an important role for fructose-sorbitol malabsorption in IBS.31 A Spanish study found more severe symptoms after intake of a fructose-sorbitol mixture in patients with functional gastrointestinal disorders than after intake of sucrose as a control solution6 whereas we found similar symptoms in IBS patients with subjective fruit intolerance after intake of a fructose-sorbitol mixture versus glucose (control), irrespective of the presence of fructose malabsorption.54
http://gut.bmj.com/cgi/content/full/55/3/297
Obviously, I can't say with any certainty that you're not fructose intolerant, it's definitely a possibility, at least on a temporary basis, but it's highly likely that you are simply experiencing the same digestive issues with sugars, that many of us here have experienced before our guts healed, so that we could achieve remission.
I'm not questioning your test results, (IOW, I have no doubt that your test score was indeed 113), what I'm saying is that the test is not valid for someone with a damaged digestive system. It's a "Catch 22" situation - the test is designed to detect malabsorption, but it doesn't work properly on people who have malabsorption problems, (due to intestinal damage). I believe that Mike has done a lot of research on these tests, and raised some questions about their validity for us, also.
Tex
P S In a nutshell, here's why the tests don't work for us. (This is strictly my opinion, by the way). They measure hydrogen emission, which is a byproduct of fermentation in the intestines. When we are having malabsorption issues, it is because of incomplete digestion. With incomplete digestion, by default, we are going to have some amount of fermentation going on in our colons, and probably occasionally even in our small intestines, simply because incompletely digested food, (or chime), is going to ferment in that warm, moist, environment. This can produce copious amounts of hydrogen gas, which will, obviously, skew the test results.
I have been on entocort for a little over two years and finally was able to drop from 3 pills a day to ONE...yippeee!
Asacol made me sick .. I tried that first. Guess I am lucky that I didn't get overly tired on entocort but then I don't have a job outside the home.
I take it easy on fatty foods and dairy.. but eat mostly what I want to in moderation:)
grannyh
Asacol made me sick .. I tried that first. Guess I am lucky that I didn't get overly tired on entocort but then I don't have a job outside the home.
I take it easy on fatty foods and dairy.. but eat mostly what I want to in moderation:)
grannyh