Hi Marion,
Suze is my other name.
I'm hearing a confusion about terminology. Lactose-free does not equal dairy-free. Same confusion I had at the beginning. Dairy/casein-free means no products that come from mammals (cows, sheep, goats) that produce milk, cheese or anything else.
Keep in mind that eggs, although they are situated in the dairy section in the supermarket, are not dairy, because they don't come from milk-producing mammals. So an egg sensitivity is entirely separate from a dairy/casein sensitivity.
Yes, the Amande yogurt is GF/DF/SF.
maintanance dose ?
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Marion,
I agree with the others here - the most likely culprit for your continuing problems is the dairy products. And I understand how hard it is to give them up; I've always been a cheese-lover, and I have cooked with butter almost exclusively since my dh and I first went on the Atkins diet about 10 years ago. But it would seem that our overactive immune systems go after major allergens one at a time. They start with gluten - the biggest offender - and react most strongly to that. When we finally get smart enough to eliminate gluten, we often get relief - briefly. But then our bodies go after the next major irritant - usually casein (the protein in dairy products). As long as you don't eliminate the casein altogether (meaning dump all the dairy products including cheese, butter, and yogurt), your body will continue to react to that, no matter what else you eliminate.
Once you eliminate dairy, your body may find other irritants, including soy and egg, and maybe some things you are personally sensitive to (I'm sensitive to almonds, for example, and others here are sensitive to corn, or nightshades, or other things). In the meantime, while you are healing, raw fruits and vegetables (and other forms of fiber) may be rough enough to cause physical damage to your intestines (which is why most of us who are healing try to stick to very soft, well-cooked fruits and veggies). So the fastest way to healing for most of is to avoid all gluten, dairy, soy (and often other legumes), and egg, and raw fruits and veggies (except banana, which most of us can tolerate as long as we don't have mast cell involvement - D very soon after eating, like 10 mins-2 hours, and other symptoms we'd more likely recognize as allergic, including runny nose, skin issues, etc. - others can expand more on this as I don't seem to have those issues so far).
So what CAN we eat? While healing, most of us can tolerate meat, white rice, potatoes, and well-cooked fruits (applesauce, canned peaches) and veggies, as well as nut milks and nut butters. For snacks I generally do baked potato chips (lower in fat so my body tolerates them better than regular), avocado, a handful of nuts (not everyone can tolerate plain nuts - be sure you chew them well if you do them), a banana, some of Gloria's arrowroot pudding, a banana or applesauce. I used to get the little squeeze packets of Justin's almond butter, too - portable and nutritious - until I figured out I have trouble with almonds. Many of us can tolerate other things as well, but those things all have to be tested to be sure. And some of us can't tolerate all of those things (some react to chicken, or rice, or potatoes). But a very simple diet like this gives us a good place to start from, and usually helps get our gut under control.
I find diets like the SCD and the Paleo diet helpful mainly because they give me recipes to start with. I still have to tailor them to what I personally can eat. Paleo recipes are usually more helpful because they are almost dairy-free as well as grain-free and soy- and legume-free, but they still include eggs and occasionally a bit of pasture butter, neither of which I can eat. I have, however, found some decent recipes in the SCD resources online.
Sorry to ramble on and on - hopefully this is helpful.. You will eventually find your own way, and figure out what you can and can't tolerate.
Hang in there!
Deanna
I agree with the others here - the most likely culprit for your continuing problems is the dairy products. And I understand how hard it is to give them up; I've always been a cheese-lover, and I have cooked with butter almost exclusively since my dh and I first went on the Atkins diet about 10 years ago. But it would seem that our overactive immune systems go after major allergens one at a time. They start with gluten - the biggest offender - and react most strongly to that. When we finally get smart enough to eliminate gluten, we often get relief - briefly. But then our bodies go after the next major irritant - usually casein (the protein in dairy products). As long as you don't eliminate the casein altogether (meaning dump all the dairy products including cheese, butter, and yogurt), your body will continue to react to that, no matter what else you eliminate.
Once you eliminate dairy, your body may find other irritants, including soy and egg, and maybe some things you are personally sensitive to (I'm sensitive to almonds, for example, and others here are sensitive to corn, or nightshades, or other things). In the meantime, while you are healing, raw fruits and vegetables (and other forms of fiber) may be rough enough to cause physical damage to your intestines (which is why most of us who are healing try to stick to very soft, well-cooked fruits and veggies). So the fastest way to healing for most of is to avoid all gluten, dairy, soy (and often other legumes), and egg, and raw fruits and veggies (except banana, which most of us can tolerate as long as we don't have mast cell involvement - D very soon after eating, like 10 mins-2 hours, and other symptoms we'd more likely recognize as allergic, including runny nose, skin issues, etc. - others can expand more on this as I don't seem to have those issues so far).
So what CAN we eat? While healing, most of us can tolerate meat, white rice, potatoes, and well-cooked fruits (applesauce, canned peaches) and veggies, as well as nut milks and nut butters. For snacks I generally do baked potato chips (lower in fat so my body tolerates them better than regular), avocado, a handful of nuts (not everyone can tolerate plain nuts - be sure you chew them well if you do them), a banana, some of Gloria's arrowroot pudding, a banana or applesauce. I used to get the little squeeze packets of Justin's almond butter, too - portable and nutritious - until I figured out I have trouble with almonds. Many of us can tolerate other things as well, but those things all have to be tested to be sure. And some of us can't tolerate all of those things (some react to chicken, or rice, or potatoes). But a very simple diet like this gives us a good place to start from, and usually helps get our gut under control.
I find diets like the SCD and the Paleo diet helpful mainly because they give me recipes to start with. I still have to tailor them to what I personally can eat. Paleo recipes are usually more helpful because they are almost dairy-free as well as grain-free and soy- and legume-free, but they still include eggs and occasionally a bit of pasture butter, neither of which I can eat. I have, however, found some decent recipes in the SCD resources online.
Sorry to ramble on and on - hopefully this is helpful.. You will eventually find your own way, and figure out what you can and can't tolerate.
Hang in there!
Deanna
Hi Mim. I hate to say this, but you really should be trying to go as simple as possible at first. You will never figure out what is bothering you if you keep adding new things before you heal. When you do heal, THAT is when you add them back in to test them out. When we are in an inflammatory state, almost everything will bother us.
PS, I can't believe that so many of you can even drink coffee! it's like battery acid for me.
Leah
PS, I can't believe that so many of you can even drink coffee! it's like battery acid for me.
Leah
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Mim,
I followed a low carb paleo type version of SCD for many years. It certainly was better than what I had been eating previously but it did not give me the results I was hoping for. And then this year things got significantly worse and I found my way here. By that time I was no longer following SCD scrupulously but I was mostly compliant. Upon finding this site and all the info on it I immediately went gf/df/sf/ef plus I eliminated all high histamine foods since I seemed to have mast cell issues. Then I got the enterolab testing done and discovered that I was reactive to all of the big 4 plus a whole bunch of other things like chicken and rice and potatoes (foods that are ok for the majority of people). I agree with Leah. Try to keep it really simple at first, very few foods, until things are significantly better and then add things back very slowly. I started out by eating about 4 foods. Right now I am probably eating 15 different foods, mostly a few meats (lamb, turkey,pork and even some ground venison), a few greens well cooked (kale, chard, mustard greens, collards), coconut oil and olive oil and small amounts of blueberries, nut butter (almond and macadamia) plus coffee and green tea. I know it can be hard to give so much up but I feel so much better eating this way that it is really worth it. There are many people who follow scd but find they have to eliminate dairy because of the casein.
Jean
I followed a low carb paleo type version of SCD for many years. It certainly was better than what I had been eating previously but it did not give me the results I was hoping for. And then this year things got significantly worse and I found my way here. By that time I was no longer following SCD scrupulously but I was mostly compliant. Upon finding this site and all the info on it I immediately went gf/df/sf/ef plus I eliminated all high histamine foods since I seemed to have mast cell issues. Then I got the enterolab testing done and discovered that I was reactive to all of the big 4 plus a whole bunch of other things like chicken and rice and potatoes (foods that are ok for the majority of people). I agree with Leah. Try to keep it really simple at first, very few foods, until things are significantly better and then add things back very slowly. I started out by eating about 4 foods. Right now I am probably eating 15 different foods, mostly a few meats (lamb, turkey,pork and even some ground venison), a few greens well cooked (kale, chard, mustard greens, collards), coconut oil and olive oil and small amounts of blueberries, nut butter (almond and macadamia) plus coffee and green tea. I know it can be hard to give so much up but I feel so much better eating this way that it is really worth it. There are many people who follow scd but find they have to eliminate dairy because of the casein.
Jean
Hi Beni,
I had a tough time telling problematic foods while I was on Entocort so I understand your dilemma. Entocort seemed to mask everything so that it was tough to tell what if anything was problematic. If you decide to do another taper off down the road perhaps think of trying a paleo approach. I tried to be as paleo as possible at the low to no end of the taper. I'm thinking you are in Europe? See if you have access to the book The Paleo Answer by Loren Cordaine. I think Harma got ahold of it some how. If you don't have access if you PM me your physical address for UPS courier delivery I'll be glad to send you my copy. This is a rough disease to get thru. Brandy
PS. I'll try to do a more detailed post this weekend.
I had a tough time telling problematic foods while I was on Entocort so I understand your dilemma. Entocort seemed to mask everything so that it was tough to tell what if anything was problematic. If you decide to do another taper off down the road perhaps think of trying a paleo approach. I tried to be as paleo as possible at the low to no end of the taper. I'm thinking you are in Europe? See if you have access to the book The Paleo Answer by Loren Cordaine. I think Harma got ahold of it some how. If you don't have access if you PM me your physical address for UPS courier delivery I'll be glad to send you my copy. This is a rough disease to get thru. Brandy
PS. I'll try to do a more detailed post this weekend.
Thank you all for the great advice. It does get confusing. I do have the book on SCD, and an extra SCD cookbook. I have looked at the Paleo diet on line, and that also looks good. At first I was thinking that everything on SCD would be safe. As a result, I had fun in the kitchen trying dozens of SCD recipes. I should NOT have done that. I can see now that simplicity is the key for someone new like me.
I certainly can't figure anything out if I make a casserole with half a dozen items in it, even if it was SCD legal. That was my recent experience. Was I reacting to the cauliflower, the eggs, the cheese? Impossible to know!
I appreciate ALL of the suggestions. Thank you so much! I shall start over and keep it simple.
Marion
I certainly can't figure anything out if I make a casserole with half a dozen items in it, even if it was SCD legal. That was my recent experience. Was I reacting to the cauliflower, the eggs, the cheese? Impossible to know!
I appreciate ALL of the suggestions. Thank you so much! I shall start over and keep it simple.
Marion
Hi Beni,
I am maintaining now taking 1 Entocort 3mg every other day. I'll let you know what happens when I try to roll off. I don't intend to roll off until after my vacation in July. We are staying at a Lodge where meals are included and I'm hoping to not get sick there.
I am maintaining now taking 1 Entocort 3mg every other day. I'll let you know what happens when I try to roll off. I don't intend to roll off until after my vacation in July. We are staying at a Lodge where meals are included and I'm hoping to not get sick there.
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)
Marion- you mentioned eye problems with entorcort... I didn't realize it can cause problems. I'll have to mention it at my appointment next week, although I don't know if it will matter because I wouldn't discontinue (as much as I'd like to) it at this point.
Beni- I wish you the best with the entocort. I just had the same problem with the taper, I tried to go 3 mg every other day and it just didn't work. I'm back to 3 mg /day and hoping it's just going to take more time to heal and eventually be able to stop. It's very discouraging but you're not alone.
Beni- I wish you the best with the entocort. I just had the same problem with the taper, I tried to go 3 mg every other day and it just didn't work. I'm back to 3 mg /day and hoping it's just going to take more time to heal and eventually be able to stop. It's very discouraging but you're not alone.
Debe,
I think I am having a problem because I am age 62 and I already had a small cataract. The eye warnings on one of the web sites regarding budesonide is: Tell your healthcare provider if you have ever had: cataracts, glaucoma, or other eye problems or eye infection. My pcp is aware of my vision problem, but still wants me to stay on budesonide. I have a LOT of inflammation. I am just guessing that the meds must accelerate the growth of a cataract. Let's face it. Every med has a million warnings on it.
Marion
I think I am having a problem because I am age 62 and I already had a small cataract. The eye warnings on one of the web sites regarding budesonide is: Tell your healthcare provider if you have ever had: cataracts, glaucoma, or other eye problems or eye infection. My pcp is aware of my vision problem, but still wants me to stay on budesonide. I have a LOT of inflammation. I am just guessing that the meds must accelerate the growth of a cataract. Let's face it. Every med has a million warnings on it.
Marion
Entocort has also caused blurred vision for some members independent of cataracts (as a neurological issue).
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.
maintanance dose
thanks for the replies, Brandy how kind, I can get the paleo diet book through amazon,many thanks. Does anyone out there take 3mg forever? I seemed ok on that but thought it best to eventually give up as I take loads of other meds, hypertention, statins thyroxin but the way I feel after the last attack makes me think perhaps I should stick on one tablet a day for good or is this not a good idea? Beni
Hi Beni,
Are you aware that statins have been shown to cause MC for some people? I took simvastatin for about 9 months, but I stopped because it seemed to be causing muscle and ligament problems. I would wake up during the night or in the morning aching all over and sometimes my fingers would be locked straight out. the only way to fold them down was to use the other hand to force them down. A few weeks after I stopped taking the simvastatin, the problem went away and has not returned.
I was taking a statin as part of a prescribed stroke prevention plan, but my heart and blood pressure were fine, so there was really no good reason to continue taking it. If you actually have cardiovascular problems, you may benefit from continuing to take a statin, and in that case, you may need to continue to take a low dose of budesonide indefinitely in order to keep your MC symptoms under control.
Tex
Are you aware that statins have been shown to cause MC for some people? I took simvastatin for about 9 months, but I stopped because it seemed to be causing muscle and ligament problems. I would wake up during the night or in the morning aching all over and sometimes my fingers would be locked straight out. the only way to fold them down was to use the other hand to force them down. A few weeks after I stopped taking the simvastatin, the problem went away and has not returned.
I was taking a statin as part of a prescribed stroke prevention plan, but my heart and blood pressure were fine, so there was really no good reason to continue taking it. If you actually have cardiovascular problems, you may benefit from continuing to take a statin, and in that case, you may need to continue to take a low dose of budesonide indefinitely in order to keep your MC symptoms under control.
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.
maintenance dose
thanks for the warning Tex, I have hypertension, controled with 2 different meds, both my parents had strokes and my cholesterol was 8.8 hence the statins, I eat a low fat diet, only use olive oil so my doc. thinks its just the way my body works, I could probably get cholerterol from lettuc if I could eat it!!!!!Beni
Beni,
Yes, You're right. Our "natural" cholesterol levels are predominantly determined by the genes that we inherit.
Tex
Yes, You're right. Our "natural" cholesterol levels are predominantly determined by the genes that we inherit.
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.