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feeling cruddy
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kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
feeling cruddy
I am done doing the gluten challenge since I decided to do the enterolab testing. The last time I had gluten was an Amstel Light beer (supposedly .005% gluten) last Thursday. I feel like crap. I have a horrible low back pain, gassy, and bloaty. Does this seem too long to be a gluten effect and more a colitis effect? I will NEVER challenge gluten again.....lesson learned!
Kathy
Kathy,
Personally, I agree with you. Gluten challenges are an archaic idea, dreamed up by GI docs, so that they can dot all the "i's", and cross all the "t's", in their records, in order to make them feel "politically correct". Gluten challenges wouldn't even exist, it the GI docs knew what they were doing, and they were capable of figuring out a more "patient friendly" way to diagnose gluten sensitive enteropathy. A method does exist, and it's called "stool testing", but they're too hard-headed to use it.
The downside is that you will never have that official medical diagnosis of celiac disease on your record. Of course, it's possible that in a few more years, the mainstream medical community may be forced to accept the stool testing approach, (by pressure from public opinion, if nothing else), and then your Enterolab results will become valid proof of your gluten sensitivity. Realistically, it will probably take another 10 years before that may become a reality, though - the medical establishment tends to move ponderously slow, on issues such as this.
I am pretty sure that I'm a celiac, (because I had a lot of small intestinal damage, and all the other clinical symptoms), but I don't have that official diagnosis, either, but my doctors have never questioned that I am gluten sensitive, when I mentioned it to them. Even when I had to have major emergency surgery, that required a few days of recovery in the hospital, all I had to do was mention that I had many food intolerances, and they sent the head dietitian to my room to help plan my meals. She was totally unfamiliar with planning meals for even gluten sensitivity, let alone casein, soy, corn, etc., so I just selected various foods myself, and she advised me what ingredients were in them. It worked, and I didn't have any reactions. Anyway, the point is, so far at least, not having an official diagnosis has not been a drawback, in any way.
To answer your question about the persistence of the reaction - this is mostly just my opinion, of course, but based on experience, and observations of the experience of other members here, once you have accumulated enough damage to either the small intestine, (celiac symptoms), or the colon, (colitis symptoms), then your reactions will tend to last a while, until the gut has a chance to heal some of the damage. If you were in remission, and accidentally ate a little gluten, there would be no accumulated damage, and your reaction would only last anywhere from a few hours, to a few days, depending on your sensitivity, and your stage of healing, (it can take a year or two for the intestines to completely heal).
I did an oat challenge, a couple of years ago, and it took me about 6 weeks for the reaction to initiate, (possibly because I only ate it twice a week). Once the reaction started, however, it took another 6 weeks for it to completely subside. For the first week or two, the reaction was pretty steady, and after that, it began to be more sporadic, with periods of normal BMs for a few days, and then a return of a day or so of D. Finally, the D disappeared completely, by the end of the 6th week. The avenin in oats is not as potent as the gluten in wheat, though, and I had been in remission for several years, so my reactions were nowhere near as severe as they had been before I cut out gluten. Basically, all I had was D, with none of the neurological symptoms that I had experienced with gluten.
I hope you begin to feel better soon.
Tex
Personally, I agree with you. Gluten challenges are an archaic idea, dreamed up by GI docs, so that they can dot all the "i's", and cross all the "t's", in their records, in order to make them feel "politically correct". Gluten challenges wouldn't even exist, it the GI docs knew what they were doing, and they were capable of figuring out a more "patient friendly" way to diagnose gluten sensitive enteropathy. A method does exist, and it's called "stool testing", but they're too hard-headed to use it.
The downside is that you will never have that official medical diagnosis of celiac disease on your record. Of course, it's possible that in a few more years, the mainstream medical community may be forced to accept the stool testing approach, (by pressure from public opinion, if nothing else), and then your Enterolab results will become valid proof of your gluten sensitivity. Realistically, it will probably take another 10 years before that may become a reality, though - the medical establishment tends to move ponderously slow, on issues such as this.
I am pretty sure that I'm a celiac, (because I had a lot of small intestinal damage, and all the other clinical symptoms), but I don't have that official diagnosis, either, but my doctors have never questioned that I am gluten sensitive, when I mentioned it to them. Even when I had to have major emergency surgery, that required a few days of recovery in the hospital, all I had to do was mention that I had many food intolerances, and they sent the head dietitian to my room to help plan my meals. She was totally unfamiliar with planning meals for even gluten sensitivity, let alone casein, soy, corn, etc., so I just selected various foods myself, and she advised me what ingredients were in them. It worked, and I didn't have any reactions. Anyway, the point is, so far at least, not having an official diagnosis has not been a drawback, in any way.
To answer your question about the persistence of the reaction - this is mostly just my opinion, of course, but based on experience, and observations of the experience of other members here, once you have accumulated enough damage to either the small intestine, (celiac symptoms), or the colon, (colitis symptoms), then your reactions will tend to last a while, until the gut has a chance to heal some of the damage. If you were in remission, and accidentally ate a little gluten, there would be no accumulated damage, and your reaction would only last anywhere from a few hours, to a few days, depending on your sensitivity, and your stage of healing, (it can take a year or two for the intestines to completely heal).
I did an oat challenge, a couple of years ago, and it took me about 6 weeks for the reaction to initiate, (possibly because I only ate it twice a week). Once the reaction started, however, it took another 6 weeks for it to completely subside. For the first week or two, the reaction was pretty steady, and after that, it began to be more sporadic, with periods of normal BMs for a few days, and then a return of a day or so of D. Finally, the D disappeared completely, by the end of the 6th week. The avenin in oats is not as potent as the gluten in wheat, though, and I had been in remission for several years, so my reactions were nowhere near as severe as they had been before I cut out gluten. Basically, all I had was D, with none of the neurological symptoms that I had experienced with gluten.
I hope you begin to feel better soon.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
Thank you Tex!
I just need to hang in there. Personally, a gluten sensitivity diagnoses will be fine. My family doctor who is wonderful, just let me diagnose myself as gluten intolerance because he knew nothing about it and told me to trust my body. I let my family get into my head that I didn't have a real diagnoses and since I was not totally better gluten free I decided to do that challenge starting in May. So almost 2 months on gluten has surely caused some more damage since I probably wasn't already healed. I was worried about the back pain but as my husband pointed out, we have been painting for the last two weeks and I've been going up and down ladders so its probably that. We are downsizing since our youngest is going to college in the fall. We don't need a big house anymore (hubby doesn't want them all coming back later) so we have been working hard to get the house ready to go on the market. A lot of stress! Plus owning restaurants in the present economy!
Another question, you say that 50% of you are intolerant of soy. I stopped drinking soy milk because it did make me gassy (it is a bean after all was my reasoning) but I don't pay attention to it in ingredients. I can't eat most of the gluten free bread out there and after comparing all the one's that I react to...guar gum is the common ingredient. I stopped eating soy cheese because I reacted badly to tofutti and guar gum was in the ingredients. I think I will also strictly remove soy and see what happens. My question is should I avoid soy lechithin as well, I hear it doesn't contain the soy protein.
I wish I would have found this site a year ago! So much information and I am still reading all the recipe's from Dee's kitchen! I've been looking for a good terriyaki sauce!
I just need to hang in there. Personally, a gluten sensitivity diagnoses will be fine. My family doctor who is wonderful, just let me diagnose myself as gluten intolerance because he knew nothing about it and told me to trust my body. I let my family get into my head that I didn't have a real diagnoses and since I was not totally better gluten free I decided to do that challenge starting in May. So almost 2 months on gluten has surely caused some more damage since I probably wasn't already healed. I was worried about the back pain but as my husband pointed out, we have been painting for the last two weeks and I've been going up and down ladders so its probably that. We are downsizing since our youngest is going to college in the fall. We don't need a big house anymore (hubby doesn't want them all coming back later) so we have been working hard to get the house ready to go on the market. A lot of stress! Plus owning restaurants in the present economy!
Another question, you say that 50% of you are intolerant of soy. I stopped drinking soy milk because it did make me gassy (it is a bean after all was my reasoning) but I don't pay attention to it in ingredients. I can't eat most of the gluten free bread out there and after comparing all the one's that I react to...guar gum is the common ingredient. I stopped eating soy cheese because I reacted badly to tofutti and guar gum was in the ingredients. I think I will also strictly remove soy and see what happens. My question is should I avoid soy lechithin as well, I hear it doesn't contain the soy protein.
I wish I would have found this site a year ago! So much information and I am still reading all the recipe's from Dee's kitchen! I've been looking for a good terriyaki sauce!
Kathy
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kscolorado
- Adélie Penguin
- Posts: 106
- Joined: Sun Jul 05, 2009 2:17 pm
I'm not sure why this is so, but soy lecithin seems to be a major problem for most of us who are soy intolerant. Even in trace amounts, it seems to cause violent reactions, for many of us.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.