Holly,
There's one other thing about the willpower. When you begin to fully eliminate even one or two of the things that made you sick, and you discover how much better you feel, it takes MUCH less willpower to stay on the diet. Once you are fully convinced that a GF/DF diet will make you feel better, and going off that diet will make you sick, you'll find yourself sticking to the diet better than you ever thought you would. In my case, I'm about six months into a healing process that's likely to take me a couple of years to work through - but these days even when I'm tempted to "throw it all over," the gluten is the thing I'm least tempted over. And that's not because I like gluten less - I miss Krispy Kreme donuts and sandwiches and noodles and cookies as much as anybody - it's because I see that I am better than I was six months ago, and I don't want to reverse the healing process that is now underway.
So choose one thing - gluten usually is most noticeable, but it takes longest for complete healing - or dairy, or histamine-rich foods - and make a commitment to eliminate it completely for however long you think you can stick to it - a couple of weeks is great, but even a couple of days will probably give you an idea of whether it will make you feel better. Plan out your meals (including snacks) for that period ahead of time so you're not staring at the pantry trying to figure out what to eat - that's the time I find myself most tempted, and most likely to slip. Document how you are feeling as thoroughly as you can - frequency, urgency, consistency of bm's, frequency and level (1-10) of pain, other symptoms including allergies, joint pains, fatigue, energy level, etc. As much as possible, try to document objectively, even if you have to measure allergy severity by how many tissues you use, or energy level by how many laps you can swim. When you finish the time frame you committed to, evaluate how you are feeling again. Have you seen improvement in frequency? In number of accidents? In number of tissues you used? In how many laps you can swim? And are you willing to give up any improvement in order to go back to eating what you like - is it worth it? (Remember, gluten is the most difficult to do this with since healing from gluten damage is slow. But seeing progress in other areas may eventually help you make that commitment too. For now, pick something that seems do-able to you.)
And again, the question to my way of thinking is less how much willpower you have than how badly you feel and how much you want to get well - and how strongly you believe that eliminating this or that food will help you feel better.
At this point, whatever you do that fits with the things you're reading here is likely to help. Make a start, and see where it leads you. :-)
Deanna
PS And about the period pains - I had them too, something awful, all my life. I had a nutritionist friend who in November got me started on my first "baby steps" toward this diet, eliminating sugar and gluten and dairy and other inflammatory foods, and eating more anti-inflammatory foods - and I discovered I no longer need the NSAIDS. (At my friend's recommendation, I do keep the homeopathic remedy magnesium phosphate on hand, and use it occasionally, and it is enough.). Anyway, just something to keep in mind - some of the things that seem to require those medications that are damaging may improve drastically when you are eating better.
Newly diagnosed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Holly,
I can respond to some of your questions but I don't write as well as some of the posters so bare with me.
Re: probiotics. I couldn't take them during flare. I had a serious reactions every time I tried. Now I take Culturelle. Perhaps some of the European readers can chime in on some dairy free brands. If you are not sure if a brand contains dairy post the ingredients on this forum and someone can probably help.
Re: NSAIDS/period pain/joint pain: NSAIDS are not recommended for us. Even the Doc's GI manual will specify that NSAIDS are not recommended for us. We can take Tylenol. I've also resorted to the thermal wrap belts that you wear under your clothes for when I was at work. It is kind of like a heating pad without the cord that throws off a lot of heat for 8 hours. I find the belt type are much more effective than the small 6" patch ones. I've worn them successfully for period pain. I've also found old fashioned heating pads to be helpful for at home. You may find that as you go GF, with time, some of your pains will disappear.
Re: Entocort and side effects: I was on Entocort 4.5 months. Most posters on this board do not seem to have side effects. Astra Zeneca reports 10% of users have side effects. I had dizziness (but not so much that I could not work) also I had stomach type spasms the first couple of weeks that I was on Entocort. http://www.gastrojournal.org/article/S0 ... 6/fulltext This article also mentions the dangers of NSAIDS for us and also talks about the drug that you are presently on. The article also talks about the high risk of relapse for those using Entocort when tapering off. Those in study group were not GF. We find on this forum that going GF reduces the risk of relapse when tapering off of Entocort. (budesonide)
Re: Smoking--I totally agree with the other posters to tackle this way down the road. Tex is right that smoking helps with Ulcerative Colitis. No way would I attempt quitting smoking at same time as other changes. Baby steps work well in tackling this disease.
Re: Birth control pill, hormone contraceptives, HRT. Tex didn't mention it in his response, but there is speculation that extra female hormones may make it tougher for women to achieve remission. That being said I'm actually on HRT now and heading into remission. If you are still struggling with heading into remission down the road you may want to look at minimizing/eliminating extra female hormones to see if that helps with gut heath.
Re: Diet changes: Diet changes are tough on everyone. I got this disease from binge eating/eating disorder (EMBARRASSING) so believe me I am a person who historically does not do well with diet changes. That being said I've successfully/consistently made diet changes for 8 months. My mother has celiac disease and has had it for 25 years so perhaps I had an edge in that I knew that going GF was no big deal. The easiest moves are to swap out your bread and swap out your pasta to GF varieties. Early on I found the "few foods" regimen to be helpful. Think something like a protein, rice, and overcooked veggies....for breakfast, lunch, dinner, snacks, etc. I'm single and work full time so I cook in large batches come home from work and nuke things in the microwave.
Another option would be to modify your chicken soup and toast with honey regimen to GF version. Canned soups are not the best for us as they contain "natural flavorings" which many times means gluten. Make homemade chicken soup in large batch (no wheat noodles), have GF toast with tiny spread of honey. (Too many sugars can slow our healing) A third suggestion would be to use Zizzles list as a guideline. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15268. The brands won't directly tie out for you in the UK but at least it will give you categories to swap out at the grocery. She even mentions GF beers.
I find it is helpful to keep snacks on/with me at all times and to not let myself get too hungry. If you get started this weekend you should feel seriously better before you know it.
You may want to read The Paleo Answer by Loren Cordain, PHD. He is a scientist/professor at Colorado State University. He's done a lot of scholarly studies on why gluten is not good for those suffering from inflammatory bowel diseases which is what we have. There are a lot of hucksters on the internet looking to make money off of those suffering from inflammatory bowel diseases. Dr. Cordain has credible credentials and I believe one of the other European poster's was able to buy his book from Europe. Maybe she'll chime in.
Heck try GF for two weeks. No side effects. No Dr visit required. You'll be that much closer to feeling better, no? Brandy
I can respond to some of your questions but I don't write as well as some of the posters so bare with me.
Re: probiotics. I couldn't take them during flare. I had a serious reactions every time I tried. Now I take Culturelle. Perhaps some of the European readers can chime in on some dairy free brands. If you are not sure if a brand contains dairy post the ingredients on this forum and someone can probably help.
Re: NSAIDS/period pain/joint pain: NSAIDS are not recommended for us. Even the Doc's GI manual will specify that NSAIDS are not recommended for us. We can take Tylenol. I've also resorted to the thermal wrap belts that you wear under your clothes for when I was at work. It is kind of like a heating pad without the cord that throws off a lot of heat for 8 hours. I find the belt type are much more effective than the small 6" patch ones. I've worn them successfully for period pain. I've also found old fashioned heating pads to be helpful for at home. You may find that as you go GF, with time, some of your pains will disappear.
Re: Entocort and side effects: I was on Entocort 4.5 months. Most posters on this board do not seem to have side effects. Astra Zeneca reports 10% of users have side effects. I had dizziness (but not so much that I could not work) also I had stomach type spasms the first couple of weeks that I was on Entocort. http://www.gastrojournal.org/article/S0 ... 6/fulltext This article also mentions the dangers of NSAIDS for us and also talks about the drug that you are presently on. The article also talks about the high risk of relapse for those using Entocort when tapering off. Those in study group were not GF. We find on this forum that going GF reduces the risk of relapse when tapering off of Entocort. (budesonide)
Re: Smoking--I totally agree with the other posters to tackle this way down the road. Tex is right that smoking helps with Ulcerative Colitis. No way would I attempt quitting smoking at same time as other changes. Baby steps work well in tackling this disease.
Re: Birth control pill, hormone contraceptives, HRT. Tex didn't mention it in his response, but there is speculation that extra female hormones may make it tougher for women to achieve remission. That being said I'm actually on HRT now and heading into remission. If you are still struggling with heading into remission down the road you may want to look at minimizing/eliminating extra female hormones to see if that helps with gut heath.
Re: Diet changes: Diet changes are tough on everyone. I got this disease from binge eating/eating disorder (EMBARRASSING) so believe me I am a person who historically does not do well with diet changes. That being said I've successfully/consistently made diet changes for 8 months. My mother has celiac disease and has had it for 25 years so perhaps I had an edge in that I knew that going GF was no big deal. The easiest moves are to swap out your bread and swap out your pasta to GF varieties. Early on I found the "few foods" regimen to be helpful. Think something like a protein, rice, and overcooked veggies....for breakfast, lunch, dinner, snacks, etc. I'm single and work full time so I cook in large batches come home from work and nuke things in the microwave.
Another option would be to modify your chicken soup and toast with honey regimen to GF version. Canned soups are not the best for us as they contain "natural flavorings" which many times means gluten. Make homemade chicken soup in large batch (no wheat noodles), have GF toast with tiny spread of honey. (Too many sugars can slow our healing) A third suggestion would be to use Zizzles list as a guideline. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15268. The brands won't directly tie out for you in the UK but at least it will give you categories to swap out at the grocery. She even mentions GF beers.
I find it is helpful to keep snacks on/with me at all times and to not let myself get too hungry. If you get started this weekend you should feel seriously better before you know it.
You may want to read The Paleo Answer by Loren Cordain, PHD. He is a scientist/professor at Colorado State University. He's done a lot of scholarly studies on why gluten is not good for those suffering from inflammatory bowel diseases which is what we have. There are a lot of hucksters on the internet looking to make money off of those suffering from inflammatory bowel diseases. Dr. Cordain has credible credentials and I believe one of the other European poster's was able to buy his book from Europe. Maybe she'll chime in.
Heck try GF for two weeks. No side effects. No Dr visit required. You'll be that much closer to feeling better, no? Brandy
Holly,
I second the idea of always having a safe food bar (or a bag of nuts if they are OK for you) in your handbag or car. I never allow my stomach to become so empty that it makes me feel nauseous, or might lead me to eat unsafe food because I feel I have no choice.
RE: smoking, I was a smoker from age 19 to age 56. Yes, I quit, via Chantix, in 2008, and yes, shortly after that, I began to have the symptoms that I think may have partly led to LC in 2011. Do I wish I was still smoking? I confess, I might still crave a cigarette under certain conditions, but mostly not. I feel better in every respiratory way possible. I'd rather deal with intestinal issues that are semi-under my control than deal with asthma, COPD, lung cancer, etc. But I agree with other posters that on the scale of being able to live your life with MC, quitting smoking might not be my first priority.
RE: your concern about will-power, I have always felt like nobody on the planet has less will-power than I do. Yet, I have been able to successfully cut out gluten, dairy, and, to the greatest degree possible, soy, and quit smoking. I am not in control of everything I'd like to be, but this process has been quite empowering.
I second the idea of always having a safe food bar (or a bag of nuts if they are OK for you) in your handbag or car. I never allow my stomach to become so empty that it makes me feel nauseous, or might lead me to eat unsafe food because I feel I have no choice.
RE: smoking, I was a smoker from age 19 to age 56. Yes, I quit, via Chantix, in 2008, and yes, shortly after that, I began to have the symptoms that I think may have partly led to LC in 2011. Do I wish I was still smoking? I confess, I might still crave a cigarette under certain conditions, but mostly not. I feel better in every respiratory way possible. I'd rather deal with intestinal issues that are semi-under my control than deal with asthma, COPD, lung cancer, etc. But I agree with other posters that on the scale of being able to live your life with MC, quitting smoking might not be my first priority.
RE: your concern about will-power, I have always felt like nobody on the planet has less will-power than I do. Yet, I have been able to successfully cut out gluten, dairy, and, to the greatest degree possible, soy, and quit smoking. I am not in control of everything I'd like to be, but this process has been quite empowering.
Suze
Ok Holly, I am going to say something most people on this forum won't like, but I know how debilitating period cramps can be. I try to do without when I get mine. Some cycles are not as bad as others, right? If I can't take it, I do take two Aleve on the first day ( it's a 12 hour relief) and try not to take any more. Many times that's enough to knock it out for the rest of the time. If not, I take it one more time. that's all I allow. By then, the pain is usually bearable.
Wow guys, thank you so much for the time you've all taken to write all those kind words. There's too much for me to respond to each point individually but please know that I am taking it all on board.
I've had a really good few days. I had a total energy crash back end of last week so I took some time off work, gave myself permission not to do any exercise all weekend and spent loads of time cooking lots of healthy home made stuff which I froze in individual portions for easy eating after work. I used to do this a lot and have got out of the habit recently. And as I've thought about it lately, I've realised that my diet over the past few months hasn't been nearly as good as it should have been or used to be. I've got lazy so I'm making a concerted effort to get back into my previously good habits. I used to make a fresh fruit smoothie every morning, fresh salad or home made soup (defrosted at work) for lunch and something great for dinner. Recently it's been nothing (or maybe an apple or banana), a sandwich and cr*p for dinner. Not total cr*p, probably better than most people eat but not good enough for us poor potty people! So I'm turning over a new leaf, at least on this front!
I totally accept what you're all saying about willpower and I'm sure you're right. So what I'm doing is making a start on eliminating bad foods by cutting them down. And I'm going to keep a food diary to try and figure out once and for all which foods are really the most damaging. And hopefully it'll work which will make it easier to stick to and improve on.
I suppose one of the reasons I find it hard to accept that the only way to be well is by totally giving up gluten, dairy and maybe soy is that I've eaten those things all my life and have, for the most part, been well. Yes I've had flares in the past (nothing like this one) and have had annoying but manageable allergies and been hypermobile (which is actually quite useful for yoga!), but I've always considered myself a pretty healthy person.
But if I'm understanding this condition and what you're saying about it, gluten, dairy and maybe soy cause inflammation of the colon. So even if I'm feeling ok, having normans etc, I'm still damaging myself. Is that right?
My GP agrees that I shouldn't take nsaids. But he also said that if they substantially improve my quality of life, then it may be worth it. Someone else suggested that heat belt thing, thanks for reminding me. I'll give that a go. I'm only in pain for 2 days every 5 weeks on average so if I do have to take them, it's not for long. I'm careful to eat lots before etc. And if I'm in pain at home, it's not a problem. I can stay in bed, hug my hot water bottle and shout at my boyfriend for a bit of light relief!
The pain is more bearable at home so I could certainly stop taking them when I'm here.
My friend has IBS and we said somebody should invent an app that allows you to easily record all your symptoms, food intake etc and correlate them for you. Do we have any geeks in the house?!
I'm no longer on hormonal contraceptives and have no intention of ever being so again. So hopefully that's one step I've already taken in the right direction! The smoking thing's weird. I've often found it helpful to be honest. My preferred cure for constipation is a pint of beer and a cigarette!
I've had a really good few days. I had a total energy crash back end of last week so I took some time off work, gave myself permission not to do any exercise all weekend and spent loads of time cooking lots of healthy home made stuff which I froze in individual portions for easy eating after work. I used to do this a lot and have got out of the habit recently. And as I've thought about it lately, I've realised that my diet over the past few months hasn't been nearly as good as it should have been or used to be. I've got lazy so I'm making a concerted effort to get back into my previously good habits. I used to make a fresh fruit smoothie every morning, fresh salad or home made soup (defrosted at work) for lunch and something great for dinner. Recently it's been nothing (or maybe an apple or banana), a sandwich and cr*p for dinner. Not total cr*p, probably better than most people eat but not good enough for us poor potty people! So I'm turning over a new leaf, at least on this front!
I totally accept what you're all saying about willpower and I'm sure you're right. So what I'm doing is making a start on eliminating bad foods by cutting them down. And I'm going to keep a food diary to try and figure out once and for all which foods are really the most damaging. And hopefully it'll work which will make it easier to stick to and improve on.
I suppose one of the reasons I find it hard to accept that the only way to be well is by totally giving up gluten, dairy and maybe soy is that I've eaten those things all my life and have, for the most part, been well. Yes I've had flares in the past (nothing like this one) and have had annoying but manageable allergies and been hypermobile (which is actually quite useful for yoga!), but I've always considered myself a pretty healthy person.
But if I'm understanding this condition and what you're saying about it, gluten, dairy and maybe soy cause inflammation of the colon. So even if I'm feeling ok, having normans etc, I'm still damaging myself. Is that right?
My GP agrees that I shouldn't take nsaids. But he also said that if they substantially improve my quality of life, then it may be worth it. Someone else suggested that heat belt thing, thanks for reminding me. I'll give that a go. I'm only in pain for 2 days every 5 weeks on average so if I do have to take them, it's not for long. I'm careful to eat lots before etc. And if I'm in pain at home, it's not a problem. I can stay in bed, hug my hot water bottle and shout at my boyfriend for a bit of light relief!
The pain is more bearable at home so I could certainly stop taking them when I'm here. My friend has IBS and we said somebody should invent an app that allows you to easily record all your symptoms, food intake etc and correlate them for you. Do we have any geeks in the house?!
I'm no longer on hormonal contraceptives and have no intention of ever being so again. So hopefully that's one step I've already taken in the right direction! The smoking thing's weird. I've often found it helpful to be honest. My preferred cure for constipation is a pint of beer and a cigarette!
Holly,
Regarding the menstrual cramps, Leah is right. If you take a pain reliever as your period is first starting, you can block some of the protaglandin production that causes the pain. My OB/GYN recommended this to all her patients. You can also get some relief by taking extra calcium plus magnesium supplements before and during your period. Many believe cramps are caused in part by a deficiency in these two minerals.
Regarding the menstrual cramps, Leah is right. If you take a pain reliever as your period is first starting, you can block some of the protaglandin production that causes the pain. My OB/GYN recommended this to all her patients. You can also get some relief by taking extra calcium plus magnesium supplements before and during your period. Many believe cramps are caused in part by a deficiency in these two minerals.
Alcohol is pretty bad when you are flaring. Once you start healing, moderation is key. I only have a couple of drinks on weekends now, and I usually pay a small price the next day. I've nearly given up red wine and champagne (but I've always reacted badly to them). I can still have some white wine, ciders, GF beer and vodka drinks if I avoid too much citrus in them (margaritas and the like). My FAVORITE drink is a pink passionfruit liquor called X-rated with club soda or water.
-
Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Zizzle,
The hard part about taking a pain reliever when your period is first starting is that you can end up doing what I did for many years. I got the same advice from a doctor when I was 17 and having horrible pains that put me to bed for 2 days every single month - and when ibuprofen was still a prescription medication. So I started taking it when the pains first started, and I took ibuprofen 100 mg/hour round-the-clock for 2 days every single month, from the time I was 17 until last November - almost 30 years! (I also took ibuprofen at that rate for a day or two a couple of times a week for sinus/migraine headaches for at least the last several years.) No one ever told me that NSAIDS could cause problems, including several OB/GYNs who've seen me over the years. But when the Dr diagnosed me with MC and I started doing research, I discovered what everyone here already knows - that it's been known for some time that using NSAIDS the way I did could cause serious intestinal problems.
What's tragic about all this to me is that when I changed my eating habits, getting rid of gluten, dairy, and additives and preservatives, and adding plenty of anti-inflammatory foods to my diet, my headaches almost completely vanished, and so did most of my period pain. I wish I'd known this years ago! I don't think I will ever touch another NSAID if I can avoid it, and I'm making sure my two daughters are well aware of the dangers.
My current preference for pain relief for periods, when I need it (which I do much less often than I used to), is the homeopathic remedy Mag. Phosphate, which dissolves under the tongue and starts working in just a few minutes.
Please don't misunderstand - I'm in no way making light of anyone's pain. I did this damage to my body because mine was severe, and often completely incapacitating. But there are definitely trade-offs, and I wish now I had done things differently - and I want to spare younger women the trouble I face today, if possible.
The hard part about taking a pain reliever when your period is first starting is that you can end up doing what I did for many years. I got the same advice from a doctor when I was 17 and having horrible pains that put me to bed for 2 days every single month - and when ibuprofen was still a prescription medication. So I started taking it when the pains first started, and I took ibuprofen 100 mg/hour round-the-clock for 2 days every single month, from the time I was 17 until last November - almost 30 years! (I also took ibuprofen at that rate for a day or two a couple of times a week for sinus/migraine headaches for at least the last several years.) No one ever told me that NSAIDS could cause problems, including several OB/GYNs who've seen me over the years. But when the Dr diagnosed me with MC and I started doing research, I discovered what everyone here already knows - that it's been known for some time that using NSAIDS the way I did could cause serious intestinal problems.
What's tragic about all this to me is that when I changed my eating habits, getting rid of gluten, dairy, and additives and preservatives, and adding plenty of anti-inflammatory foods to my diet, my headaches almost completely vanished, and so did most of my period pain. I wish I'd known this years ago! I don't think I will ever touch another NSAID if I can avoid it, and I'm making sure my two daughters are well aware of the dangers.
My current preference for pain relief for periods, when I need it (which I do much less often than I used to), is the homeopathic remedy Mag. Phosphate, which dissolves under the tongue and starts working in just a few minutes.
Please don't misunderstand - I'm in no way making light of anyone's pain. I did this damage to my body because mine was severe, and often completely incapacitating. But there are definitely trade-offs, and I wish now I had done things differently - and I want to spare younger women the trouble I face today, if possible.
Hey Holly. Beer has gluten, so you should pick a different beverage :) Red wine is also bad for me now. It seems like I can handle about two low acid vodka drinks ( or tequila shots) now that I am healing. I still don't do it often. It's more a social thing.
And be careful with the fresh fruit. It's not good for most of us - especially when we are inflamed.
keep us posted
Leah
And be careful with the fresh fruit. It's not good for most of us - especially when we are inflamed.
keep us posted
Leah