How Gluten Affects Me
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How Gluten Affects Me
Hi All,
New members sometimes ask what type of symptoms we experience if we eat gluten after being in remission for a few years. Lucky me - I just happen to be in a position to be qualified to answer that question. So I thought I would post the information while it's still fresh on my mind.
In another month and a half, I will have been in remission for 8 years. Last Thursday night, I attended a combination meeting/Christmas dinner, for the board of directors of the local soil conservation district, (of which I am a board member). I ordered a plain rib eye steak, and baked potato, with absolutely nothing on them, and I made the usual request to scrape the grill where my steak would be cooked, and don't allow any bread, croutons, etc., to touch my food, etc. I've eaten there several times before, so they know the routine. Here's where I think I made my mistake.
The waitress pointed out that the meal includes another vegetable of my choice. Normally, I always say, "No, thanks, just the steak and baked potato". In a distracted moment, however, (a senior moment?), I said, "green beans will be fine". Now, if I had half a brain, I could have asked if the green beans had anything on them, but nope - I just assumed that they would be safe.
When the food arrived, I even had some regrets about ordering the green beans, but I figured that surely no one would put gluten on green beans, and if I didn't at least eat some of them, the folks in the kitchen might feel insulted, so I did my duty and ate a few of them. I stopped at the third one, because they tasted as though they had some sort of sauce on them.
Sure enough, the D and general GI distress started during the wee hours of the morning. The next morning, I awoke with a stiff sore neck, (which was always one of my main symptoms, back in the bad old days), and a dull headache. Fortunately, the bloating and D were a minor problem, but the stiff, sore neck and headache lasted for 2 days. I didn't even take anything for them, because I figured it had been so long since I had felt those symptoms, that I needed a good reminder, just for old time's sake.
Anyway, that's what gluten does to me, after almost 8 years of remission - and I don't even have a colon, anymore, so obviously, surgery is not the solution that it's promoted to be, by some gastroenterologists, such as the ones at the Mayo Clinic.
Tex
New members sometimes ask what type of symptoms we experience if we eat gluten after being in remission for a few years. Lucky me - I just happen to be in a position to be qualified to answer that question. So I thought I would post the information while it's still fresh on my mind.
In another month and a half, I will have been in remission for 8 years. Last Thursday night, I attended a combination meeting/Christmas dinner, for the board of directors of the local soil conservation district, (of which I am a board member). I ordered a plain rib eye steak, and baked potato, with absolutely nothing on them, and I made the usual request to scrape the grill where my steak would be cooked, and don't allow any bread, croutons, etc., to touch my food, etc. I've eaten there several times before, so they know the routine. Here's where I think I made my mistake.
The waitress pointed out that the meal includes another vegetable of my choice. Normally, I always say, "No, thanks, just the steak and baked potato". In a distracted moment, however, (a senior moment?), I said, "green beans will be fine". Now, if I had half a brain, I could have asked if the green beans had anything on them, but nope - I just assumed that they would be safe.
When the food arrived, I even had some regrets about ordering the green beans, but I figured that surely no one would put gluten on green beans, and if I didn't at least eat some of them, the folks in the kitchen might feel insulted, so I did my duty and ate a few of them. I stopped at the third one, because they tasted as though they had some sort of sauce on them.
Sure enough, the D and general GI distress started during the wee hours of the morning. The next morning, I awoke with a stiff sore neck, (which was always one of my main symptoms, back in the bad old days), and a dull headache. Fortunately, the bloating and D were a minor problem, but the stiff, sore neck and headache lasted for 2 days. I didn't even take anything for them, because I figured it had been so long since I had felt those symptoms, that I needed a good reminder, just for old time's sake.
Anyway, that's what gluten does to me, after almost 8 years of remission - and I don't even have a colon, anymore, so obviously, surgery is not the solution that it's promoted to be, by some gastroenterologists, such as the ones at the Mayo Clinic.
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.
Hi Tex,
First, congrats on being in remission for 8 years! So there is a light at the end of this looonnnggg tunnel!
As far as you still having problems when you have gluten (in hidden places) and not having a colon, I truly believe that scar tissue is far worse than having the inflammation. Back in the day when I was a Surgical Nurse I assisted in many colon, rectal and intestinal resections. They are not pretty. Over time, our bodies produce more cells to protect what was removed or repaired. During that time because of the extra cells they also make more scar tissue. That scar tissue over time can grow and even attach it self to other organs in that area. That scar tissue can eventually cause blockage and all sorts of other problems. So I am a very firm believer in trying to leave all the organs in tact unless it is absolutely necessary to remove them. Oh the good old Mayo Clinic....
Love Robin
First, congrats on being in remission for 8 years! So there is a light at the end of this looonnnggg tunnel!
As far as you still having problems when you have gluten (in hidden places) and not having a colon, I truly believe that scar tissue is far worse than having the inflammation. Back in the day when I was a Surgical Nurse I assisted in many colon, rectal and intestinal resections. They are not pretty. Over time, our bodies produce more cells to protect what was removed or repaired. During that time because of the extra cells they also make more scar tissue. That scar tissue over time can grow and even attach it self to other organs in that area. That scar tissue can eventually cause blockage and all sorts of other problems. So I am a very firm believer in trying to leave all the organs in tact unless it is absolutely necessary to remove them. Oh the good old Mayo Clinic....
Love Robin
- draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
WOW, Tex - great reminder that it's easy to drop our guard when we're paying attention to other things - even in an environment we've proven can be safe. Sorry that this happened to you - and yes, great reminder that non-GI symptoms can be telling us something important!
Glad to hear it the after-effects were relatively minor. I do think that taking something for these symptoms is only as good as it is. Not tripping in the first place is soooo much better! (Having said that, I'm glad I can tolerate Pepto and that it seems to continue to be helpful for uncomfy GI days - which are mercifully rare!... but the fatigue, aches and fog aren't improved by those little pink pills one bit!)
Love,
Sara
Glad to hear it the after-effects were relatively minor. I do think that taking something for these symptoms is only as good as it is. Not tripping in the first place is soooo much better! (Having said that, I'm glad I can tolerate Pepto and that it seems to continue to be helpful for uncomfy GI days - which are mercifully rare!... but the fatigue, aches and fog aren't improved by those little pink pills one bit!)
Love,
Sara
- karenswans
- Adélie Penguin
- Posts: 104
- Joined: Sat Sep 03, 2011 7:12 am
Hi Deb,
Originally, I thought I might have celiac disease, so I cut out gluten. When that didn't seem to be doing the trick, I started experimenting with cutting out various foods, as well, such as dairy, soy, corn, eggs, etc., but while some diet changes seemed to help, I kept getting sick, (I'm one of those who has alternating D and C).
Anyway, this was back before I was even aware that there was such a thing as an internet discussion board, and my GI doc didn't have a clue, so I never went back to my GI doc, but I continued to avoid gluten, while testing other foods, and studying my food/reaction diary for clues. Eventually I thought I could see some patterns, so after a year and a half of trial and error testing, I finally cut out everything that looked the least bit suspicious, and within about 2 weeks, I was in remission. For almost 2 years, I ate nothing but pork, chicken, eggs, potatoes, a little rice, and once or twice a week, I would have a serving of maybe overcooked squash, green beans, or broccoli. I had to minimize sugar and fiber. The only seasoning I used was sea salt and jalapeños. (Black pepper caused stomach pain). At first, I occasionally ate beef, also, but it eventually dawned on me that it was what was occasionally causing some bloating and spine/neck stiffness/pain and a headache, and so I cut beef out, also.
About every 4 or 5 months, I would "challenge" myself with some dairy, or corn, (because I thought that food-intolerances other than gluten, were temporary, and simply a result of inadequate enzyme production, that would be resolved after the gluten damage healed). It never worked, and I always got sick from the challenges, until after almost 2 years had passed, and at that point, I was able to slowly reintroduce, dairy, and then corn, back into my diet. These days, I only have to continue to avoid gluten, avenin, (the storage protein in oats, that's equivalent to gluten in wheat), and grapes, and other fruits that contain a lot of sorbitol, and most nuts, especially peanuts, and cashews.
I never took any meds, (except for Tylenol), because I wasn't aware of any that would work, and my GI doc never mentioned any. Before I ever went to see a doctor, I did try Pepto-Bismol for about a week, but all it did was to change the color of my BMs from "dirty water" to "black water". Of course, at the time, I wasn't aware of the "Pepto treatment" for MC, so I wasn't taking enough to do the job.
After I had been in remission for about 5 months, one day I stumbled across the old original discussion board, and that's where I began to learn about MC. Anyway, that's my story, FWIW.
Tex
Originally, I thought I might have celiac disease, so I cut out gluten. When that didn't seem to be doing the trick, I started experimenting with cutting out various foods, as well, such as dairy, soy, corn, eggs, etc., but while some diet changes seemed to help, I kept getting sick, (I'm one of those who has alternating D and C).
Anyway, this was back before I was even aware that there was such a thing as an internet discussion board, and my GI doc didn't have a clue, so I never went back to my GI doc, but I continued to avoid gluten, while testing other foods, and studying my food/reaction diary for clues. Eventually I thought I could see some patterns, so after a year and a half of trial and error testing, I finally cut out everything that looked the least bit suspicious, and within about 2 weeks, I was in remission. For almost 2 years, I ate nothing but pork, chicken, eggs, potatoes, a little rice, and once or twice a week, I would have a serving of maybe overcooked squash, green beans, or broccoli. I had to minimize sugar and fiber. The only seasoning I used was sea salt and jalapeños. (Black pepper caused stomach pain). At first, I occasionally ate beef, also, but it eventually dawned on me that it was what was occasionally causing some bloating and spine/neck stiffness/pain and a headache, and so I cut beef out, also.
About every 4 or 5 months, I would "challenge" myself with some dairy, or corn, (because I thought that food-intolerances other than gluten, were temporary, and simply a result of inadequate enzyme production, that would be resolved after the gluten damage healed). It never worked, and I always got sick from the challenges, until after almost 2 years had passed, and at that point, I was able to slowly reintroduce, dairy, and then corn, back into my diet. These days, I only have to continue to avoid gluten, avenin, (the storage protein in oats, that's equivalent to gluten in wheat), and grapes, and other fruits that contain a lot of sorbitol, and most nuts, especially peanuts, and cashews.
I never took any meds, (except for Tylenol), because I wasn't aware of any that would work, and my GI doc never mentioned any. Before I ever went to see a doctor, I did try Pepto-Bismol for about a week, but all it did was to change the color of my BMs from "dirty water" to "black water". Of course, at the time, I wasn't aware of the "Pepto treatment" for MC, so I wasn't taking enough to do the job.
After I had been in remission for about 5 months, one day I stumbled across the old original discussion board, and that's where I began to learn about MC. Anyway, that's my story, FWIW.
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.
- draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi Tex,
Steak and potatoes, not a bad diet! To think a green bean sauce could do so much damage but I know it can. My symptoms from being glutened are similar to yours. I call it my "gluten hangover", - the low grade head ache that lasts two days or more(depending on how badly I screwed up), and my body achy. I have no energy. Let's hope we can all get through Xmas without any food irritations. Merry Holidays, Happy Xmas!
Steak and potatoes, not a bad diet! To think a green bean sauce could do so much damage but I know it can. My symptoms from being glutened are similar to yours. I call it my "gluten hangover", - the low grade head ache that lasts two days or more(depending on how badly I screwed up), and my body achy. I have no energy. Let's hope we can all get through Xmas without any food irritations. Merry Holidays, Happy Xmas!
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Tex, I am amazed at your perseverance along with your patience in the trial and error of foods, and eventually finding which are beneficial to you. I have learned that it, indeed, may take a very long time, years, to be in the same place as you.
I also learned, after reading your posts, that I must absolutely tell waiters/waitresses at restaurants to make sure the grill they use for my foods is scraped and cleaned from all crumbs of buns, breads, before grilling anything for me. I hadn't thought of mentioning that.
Many thanks, as always,
garina
I also learned, after reading your posts, that I must absolutely tell waiters/waitresses at restaurants to make sure the grill they use for my foods is scraped and cleaned from all crumbs of buns, breads, before grilling anything for me. I hadn't thought of mentioning that.
Many thanks, as always,
garina
Because of your advice, when Adam and I went out for lunch on Sunday to our most reliable restaurant (the chef comes out to tell me what he has, and to ask what I would like) I could ask said chef to scrape the grill before he grilled my salmon, and to wash the blender carefully before he pureed my potatoes.
I am sorry you had to go through that as a pioneed, Tex, but the rest of us have benefited from your experience!
I am sorry you had to go through that as a pioneed, Tex, but the rest of us have benefited from your experience!
Hi Tex,
Thanks for taking the time to summarize your MC journey. You said you went into remission after about a year and a half of experimenting, and spent 2 years on a very basic diet. Are you saying that after you finally dropped all suspicious food, you then spent 2 years on the limited diet (which would make a total of 3 and a half years since going gluten free)? I find that to be quite extraordinary, so would truly appreciate if you could verify that I'm reading it correctly.
Love,
Kari
Thanks for taking the time to summarize your MC journey. You said you went into remission after about a year and a half of experimenting, and spent 2 years on a very basic diet. Are you saying that after you finally dropped all suspicious food, you then spent 2 years on the limited diet (which would make a total of 3 and a half years since going gluten free)? I find that to be quite extraordinary, so would truly appreciate if you could verify that I'm reading it correctly.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Yes, you're correct. I'm guessing that it took that long for enough healing to take place to allow me to add some foods back into my diet. Since that point, not much seems to have changed. IOW, I'm still sensitive to the few foods that I wasn't able to reintroduce at that point.Kari wrote:Are you saying that after you finally dropped all suspicious food, you then spent 2 years on the limited diet (which would make a total of 3 and a half years since going gluten free)?
It takes much longer for the intestines to heal, than virtually all GI specialists realize. The original Medscape article that I was going to list as a reference is missing, so I'll just copy the info below. I've highlighted in red, the information that I consider to be the most important.
I see no reason why the healing rate for the colon shouldn't he roughly the same as for the small intestine, (since the type of damage is very similar - namely, T cell infiltration).Am J Gastroenterol 2010
By Will Boggs, MD
NEW YORK (Reuters Health) Mar 04 - When celiac disease is diagnosed in adulthood, mucosal damage might never completely resolve, even on a gluten-free diet, according to a February 9th online report in The American Journal of Gastroenterology.
"Celiac disease is a serious inflammatory condition that does not always heal," senior Dr. Joseph A. Murray from Mayo Clinic College of Medicine, Rochester, Minnesota told Reuters Health by email.
Dr. Murray and his colleagues analyzed mucosal recovery and all-cause mortality in 241 adults who had diagnostic and follow-up biopsies. All of the diagnostic biopsies showed some degree of intestinal villous atrophy, and nearly half the patients had total villous atrophy. The median age at diagnosis was 47 years, and all had been following - or attempting to follow -- a gluten-free diet since learning of their celiac disease.
Out of 165 patients with first follow-up biopsies within 2 years of diagnosis, only 58 (35%) had mucosal recovery. Thirty-eight additional patients (23%) eventually did have mucosal healing, as confirmed by later biopsies.
For the entire cohort, the actuarial rate of intestinal healing at 2 years was 34%. At 5 years, 66% of patients had mucosal recovery. The median time to confirmed recovery was approximately 3.8 years.
Most patients (82%) had at least some clinical response to the gluten-free diet, but clinical response was not related to mucosal recovery on the first follow-up biopsy. Among the 192 patients with a complete or partial clinical response, 119 (62%) had persistent mucosal damage. (A serologic response to the diet was associated with mucosal recovery, however.)
For 236 patients, the researchers had reports from dietitians regarding gluten-free compliance. Rates of good, moderate, and poor compliance were 75%, 20% and 4%, respectively, in patients with intestinal recovery, compared to 61%, 21% and 18%, respectively, in those with persistent damage.
Seventeen patients died during the first 10 years of follow-up. Eleven had at least one follow-up biopsy, and all but one still had mucosal damage in the last biopsy before death. Cancer was the most common cause of death in these patients.
The mortality rate was 87% lower with confirmed mucosal recovery versus persistent mucosal damage, although the relationship fell short of statistical significance (P=0.06).
"Systematic follow-up with intestinal biopsies may be advisable in patients diagnosed with celiac disease as adults," the investigators conclude.
Dr. Murray recommended intestinal biopsy "after 1 year of gluten-free diet" and, for patients with persistent mucosal damage even on the diet, "close surveillance, follow-up with diet review, and, if symptoms are present, look for refractory change."
Love,
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.
Tex - thanks for your quick response. I had always thought that you stopped your diet vigilance after a year and a half when you went into remission, when in fact that's when you kicked it into high gear!!! I applaud you for your discipline, and suspect I may have to follow in your footsteps if I want to complete and safeguard my healing.
Love,
Kari
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein