Hi all, glad to have found you. I've been GF for 7 days as a "test," and my symptoms are actually a little worse. I'll get back to that below, but first some very quick background.
I'm 58, and have had IBS like symptoms since my 20's. About 4 yrs ago I had my first routine colonoscopy. Because I'd said I had had IBS like symptoms, the Dr. took a biopsy and told me I had LC. He did a blood test for Celiac disease but that came back negative. He put me on Mesalamine and told me to take plenty of pepto bismol. It really never seemed to help, and after a year or so I quit going back to the Dr and taking the meds. Things didn't get worse, but didn't get better either. My symptoms are very much like I've seen described on this board, but maybe not quite as bad? I haven't had a solid bm in years, and I'll typically have from 5 to 7 very loose stools a day, including in the middle of the night (and often with a lot of urgency, and oh-so-much embarrassing flatulence). It definitely is "a little" life-limiting, but again, I don't think as bad as many.
About a week ago I saw an article on CNN online about a woman who found out she was gluten sensitive, after having tested negative for Celiac. The description of her symptoms seemed to mirror mine (including fatigue, some muscle soreness, etc.) The article said she cut out gluten, and felt better within a week - not just a little better, but said it was like "crossing the street" better. I was so jazzed because I felt I had maybe really found an answer.
So this is my 7th day of being GF. I may not have been perfect, but I think I've been at least 99.9%. (I bought several books and really tried to quickly educate myself so I could do it right.) Despite going into this feeling really optimistic, there has been zero improvement. Not only that, it's actually gotten a little worse since the very first day. My bms are up to about 9 or 10 day, and they're much looser. I've had a little bit of abdominal pain, like a minor stomach-ache, almost constantly - and that's something that fortunately I don't normally have.
Even though it's disappointing after reading the CNN story, I can understand that you might not see improvement after only 7 days. But to have the symptoms get worse - that seems very odd to me. (I don't really feel that I've introduced anything particularly new into my diet, either.) Anybody have any thoughts? Do symptoms sometimes get worse when starting a GF diet. Also, I am going in for a physical in about 10 days and plan to re-start trying to actively work on this.
Thanks so much.
Newbie: 7 Day GF "Test," and Symptoms Get Worse?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to the board. The first thing to consider is the fact that MC is much more difficult to control than celiac disease. Chances are, gluten is not your only food sensitivity, and until you eliminate all of your food sensitivities, 100%, you will not be likely to see much improvement, (and, as you note, at times, it may seem worse). Most of us are also sensitive to casein, (the primary protein in all dairy products), and about half of us are sensitive to soy. Others have additional sensitivities, but we are all different in that respect.
Also, like most of us, you have probably been accumulating damage to your intestines for several decades, and that damage will not heal in a matter of just a few days, weeks, or even months. It will probably take a year or more. You may begin to see some improvement from the diet in a few months, (possibly less, but please don't be discouraged if it takes longer), but it will almost surely take over a year for the cellular damage to your gut to heal. Kids heal quickly. For those of us who are no longer kids, we have a much longer path to remission, but it is doable, if you are willing to buckle down and stay the course. Most doctors have no idea of just how complex this disease actually is, nor do they realize how long it takes for the intestines to recover from the damage that has been done to it by years of inflammatory reactions to gluten and/or other food sensitivities. In fact, most GI specialists will argue that diet has nothing to do with MC, but the experiences of hundreds of members on this site have shown that diet is indeed the key to safe and lasting remission. The disease is formidable, and for many of us it can be debilitating, but the symptoms can definitely be controlled.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. The first thing to consider is the fact that MC is much more difficult to control than celiac disease. Chances are, gluten is not your only food sensitivity, and until you eliminate all of your food sensitivities, 100%, you will not be likely to see much improvement, (and, as you note, at times, it may seem worse). Most of us are also sensitive to casein, (the primary protein in all dairy products), and about half of us are sensitive to soy. Others have additional sensitivities, but we are all different in that respect.
Also, like most of us, you have probably been accumulating damage to your intestines for several decades, and that damage will not heal in a matter of just a few days, weeks, or even months. It will probably take a year or more. You may begin to see some improvement from the diet in a few months, (possibly less, but please don't be discouraged if it takes longer), but it will almost surely take over a year for the cellular damage to your gut to heal. Kids heal quickly. For those of us who are no longer kids, we have a much longer path to remission, but it is doable, if you are willing to buckle down and stay the course. Most doctors have no idea of just how complex this disease actually is, nor do they realize how long it takes for the intestines to recover from the damage that has been done to it by years of inflammatory reactions to gluten and/or other food sensitivities. In fact, most GI specialists will argue that diet has nothing to do with MC, but the experiences of hundreds of members on this site have shown that diet is indeed the key to safe and lasting remission. The disease is formidable, and for many of us it can be debilitating, but the symptoms can definitely be controlled.
Again, welcome aboard, and please feel free to ask anything.
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.
Olyrob,
I didn't get better until I eliminated all the grains plus much more. I am still not normal but much better. Gas went away after I eliminated all fructose and fructans, that includes wheat. I would love to be just gluten intolerant but rice was/is worse for me. Eliminating sorbitol was huge too! Welcome to the board! Enterolab testing and MRT helps too, www.nowleap.com. Good luck!
Pat
I didn't get better until I eliminated all the grains plus much more. I am still not normal but much better. Gas went away after I eliminated all fructose and fructans, that includes wheat. I would love to be just gluten intolerant but rice was/is worse for me. Eliminating sorbitol was huge too! Welcome to the board! Enterolab testing and MRT helps too, www.nowleap.com. Good luck!
Pat
Thank you for your response. It's been a little disappointing not to see any positive results right off the bat - particularly when I've read so many accounts of people reporting that they started feeling vastly better in a matter of days - but I realize they are probably the lucky few. I know many people go months, if not years, before seeing improvement. But did you, or anyone you've heard of, actually seem to get worse after starting a GF diet? That's what seems so puzzling to me.
It seems most have ups and downs, and some get steadily better. Like many others, I am trying broader restrictions beyond just gluten. It's helping (I haven't run to the bathroom in the middle of the night for several weeks). But I did feel better and worse, and it was more than a week. It's actually easier than wondering what I'm doing wrong, but it does take some planning.
I used pepto bismol in the beginning, but it is poorly tolerated by many here. It sounds as though it didn't really help you years ago, so maybe it's not worth trying again.
The Enterolab testing Pat mentioned has recently been expanded to included tests for other grains and foods. I am just embarking on that path now. People have reported their results in a separate forum about that, which made me hopeful that I might get some guidance on less risky ways to expand my diet.
I'm so sorry you haven't had the reward of feeling better for your diligence in going GF. That woman in the CNN article... she was lucky, and young.
I hope you feel better quickly,
Sara
I used pepto bismol in the beginning, but it is poorly tolerated by many here. It sounds as though it didn't really help you years ago, so maybe it's not worth trying again.
The Enterolab testing Pat mentioned has recently been expanded to included tests for other grains and foods. I am just embarking on that path now. People have reported their results in a separate forum about that, which made me hopeful that I might get some guidance on less risky ways to expand my diet.
I'm so sorry you haven't had the reward of feeling better for your diligence in going GF. That woman in the CNN article... she was lucky, and young.
I hope you feel better quickly,
Sara
Olyrob,
I'm pretty new here too, and you have come to the right place for help. I am waiting for my tests to come back from Enterolab. I put off doing it, but then decided it was probably the easiest way to find my intolerances. I too didn't see any difference from going gluten free, but once I went totally dairy free I saw a difference. I still have some bad days and figured out just this week that I have to stay away from fruit, even cooked fruit. It is probably the fructose or sorbital. So now I will eliminate those items and see what happens. I also cannot eat oatmeal or maybe it was the milk in it. It is such a process and certainly doesn't turn around that fast. I am in my 9th month of this and still trying to find my way. But, like I mentioned at the beginning, there is no better group of people anywhere than here. You will get plenty of support and a lot of good advise.
I tried the pepto-bismol route and that just made my stomach hurt and didn't really help at all. I am now on Entecort and just hoping that helps with the healing process.
Good luck and things will get better.
Nancy
I'm pretty new here too, and you have come to the right place for help. I am waiting for my tests to come back from Enterolab. I put off doing it, but then decided it was probably the easiest way to find my intolerances. I too didn't see any difference from going gluten free, but once I went totally dairy free I saw a difference. I still have some bad days and figured out just this week that I have to stay away from fruit, even cooked fruit. It is probably the fructose or sorbital. So now I will eliminate those items and see what happens. I also cannot eat oatmeal or maybe it was the milk in it. It is such a process and certainly doesn't turn around that fast. I am in my 9th month of this and still trying to find my way. But, like I mentioned at the beginning, there is no better group of people anywhere than here. You will get plenty of support and a lot of good advise.
I tried the pepto-bismol route and that just made my stomach hurt and didn't really help at all. I am now on Entecort and just hoping that helps with the healing process.
Good luck and things will get better.
Nancy
Olyrob wrote:But did you, or anyone you've heard of, actually seem to get worse after starting a GF diet? That's what seems so puzzling to me.
It's difficult to say, because my episodes were cyclic, so I probably wouldn't have even noticed if they were getting worse, on the average. When I was sick as a dog, I may have missed noticing some of the details.We have 2 or 3 members, who, over the years, claimed at one time or another, that they felt better when they ate gluten, than they did when they cut it out of their diet. Gluten can be very addictive for some people, and this is how addictive substances persuade us to ingest them - we feel better when we "use" them, because they increase our serotonin level. Grains, (especially wheat), play a key role in the production of serotonin. If we don't have enough serotonin available, we don't feel well. It might help to eat other foods which are good sources of serotonin, to help make up for the shortfall in your serotonin production that may be caused by cutting wheat out of your diet.
http://www.livestrong.com/article/32342 ... serotonin/
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 -
I think this partly explains the feeling of emerging out of a 'fog' when reducing/eliminating grains. At first, the 'withdrawal' symptoms exacerbate brain fog, etc. - but eventually a significant clarity seems to begin emerging. (I think it's true, because my husband has cut back *much* farther on grains than he planned to, seeing my improvement, and he's feeling great, too.)
It's my uneducated guess that in the absence of a constant intake of grains, the body's own serotonin processing and uptake will stabilize in time. Of the foods in your livestrong link, I've been eating a lot of the non-grain ones (sweet potatoes, cauliflower, brussels sprouts - and others in that family), plus turkey and red meat (which had been off my list, mostly).
I don't think I'm there yet, and still have a lot of healing to do, but am heartened to read this as I'm feeling some improvement in these early days.
Olyrob, I hope you're heartened, too. You are not alone - that much is for sure.
Speedy healing,
Sara
I think this partly explains the feeling of emerging out of a 'fog' when reducing/eliminating grains. At first, the 'withdrawal' symptoms exacerbate brain fog, etc. - but eventually a significant clarity seems to begin emerging. (I think it's true, because my husband has cut back *much* farther on grains than he planned to, seeing my improvement, and he's feeling great, too.)
It's my uneducated guess that in the absence of a constant intake of grains, the body's own serotonin processing and uptake will stabilize in time. Of the foods in your livestrong link, I've been eating a lot of the non-grain ones (sweet potatoes, cauliflower, brussels sprouts - and others in that family), plus turkey and red meat (which had been off my list, mostly).
I don't think I'm there yet, and still have a lot of healing to do, but am heartened to read this as I'm feeling some improvement in these early days.
Olyrob, I hope you're heartened, too. You are not alone - that much is for sure.
Speedy healing,
Sara
Olyrob,
I am gluten sensitive but I didn't see dramatic improvement until I eliminated tapioca, which is in most gluten free products. My reaction to tapioca is actually worse than my reaction to gluten. You may very well be reacting to something in addition to gluten. For most of us figuring out all of our sensitivities takes time and patience. MRT and Enterolab can be useful tools to speed up the process. Hang in there - it gets easier.
Mary Beth
I am gluten sensitive but I didn't see dramatic improvement until I eliminated tapioca, which is in most gluten free products. My reaction to tapioca is actually worse than my reaction to gluten. You may very well be reacting to something in addition to gluten. For most of us figuring out all of our sensitivities takes time and patience. MRT and Enterolab can be useful tools to speed up the process. Hang in there - it gets easier.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Welcome Olyrob!! 
I went GF for a month and didn't see any improvement. I'm not sure that I did worse, but I didn't fare any better. I didn't realize it at the time, but I was also intolerant to many other foods. I didn't see an improvement until I also removed those foods from my diet. I've also taken Entocort, a steroid commonly prescribed for MC, and it has helped me have a normal life while I've figured out my intolerances.
Gloria
I went GF for a month and didn't see any improvement. I'm not sure that I did worse, but I didn't fare any better. I didn't realize it at the time, but I was also intolerant to many other foods. I didn't see an improvement until I also removed those foods from my diet. I've also taken Entocort, a steroid commonly prescribed for MC, and it has helped me have a normal life while I've figured out my intolerances.
Gloria
You never know what you can do until you have to do it.
Olyrob,
I'm one of the people who reported vast improvement after going GF, but in reality I dropped dairy and most soy at the same time. So I'm not sure if going GF alone would have had the same effect. My dairy reactions are so severe now (battery acid D), I'm sure they would have overshadowed any improvement from yoing GF alone. I also had the brain fog withdrawl symptoms for 3-4 days after dropping gluten. It was surreal.
I'm one of the people who reported vast improvement after going GF, but in reality I dropped dairy and most soy at the same time. So I'm not sure if going GF alone would have had the same effect. My dairy reactions are so severe now (battery acid D), I'm sure they would have overshadowed any improvement from yoing GF alone. I also had the brain fog withdrawl symptoms for 3-4 days after dropping gluten. It was surreal.
Zizzle - YES, the brain fog! Mine lasted more than 3-4 days - at least a couple of weeks.
It took me days after I joined here to write my first post - it was just that hard to collect my thoughts. I've been GF/DF since early March, and have since stopped all grains and legumes. It has taken weeks to clear my head.
Fun could be had by trouncing me in Scrabble those weeks - but I'm baaaack...
Sara
It took me days after I joined here to write my first post - it was just that hard to collect my thoughts. I've been GF/DF since early March, and have since stopped all grains and legumes. It has taken weeks to clear my head.
Fun could be had by trouncing me in Scrabble those weeks - but I'm baaaack...
Sara
Olyrob-
Welcome! I'm an old-timer and don't get here much anymore - but I want you to know GF was not a quick fix for me, either! Unfortunately, extreme patience is needed with this condition
I went GF in April 2001. I was also taking Asacol. Things became "manageable" but I certainly didn't feel there was much improvement. However I stuck with it, and was finally able to stop meds and be d-free using only diet in June of 2002. Yep that's 14 months! I haven't looked back, and have been basically close to symptom-free for nearly 9 years. Hang in there!
Mary
Welcome! I'm an old-timer and don't get here much anymore - but I want you to know GF was not a quick fix for me, either! Unfortunately, extreme patience is needed with this condition
I went GF in April 2001. I was also taking Asacol. Things became "manageable" but I certainly didn't feel there was much improvement. However I stuck with it, and was finally able to stop meds and be d-free using only diet in June of 2002. Yep that's 14 months! I haven't looked back, and have been basically close to symptom-free for nearly 9 years. Hang in there!Mary