Hi Tex and Gabes (and anyone else who reads this!)
Thank you so much for your input on my last message. I feel bad taking so much advice and not giving any in return. Perhaps one day when I'm in a better place.
Tex, I'm sorry to hear you had to deal with a Bactrim allergy too. My doctors actually told me the allergy is not that uncommon and they recognized it right away. Of course that wasn't comforting at all except that I was glad all the symptoms weren't a sign of systemic infection due to my fistula. Anyway, at least I know now, but I would have much rather avoided that fiasco!
I wanted to give you guys a quick update and ask a few more questions about fine-tuning of diet and vitamin supplementation. So, I've been on budesonide for about 5 weeks now and have been on the minimal MC diet for only about 1 week. It took me awhile to get to a point mentally where I could give up more things after already being on such a limited diet. I'm eating various meats (chicken, turkey, pork, beef, salmon), sweet potato, carrot, parsnips, banana, applesauce, and rice cakes. Coffee sometimes, and considering adding a peppermint tea. Salt and pepper, olive oil, and coconut oil.
Gabes, your post to the recovery section of the forum about diet phase one was extremely helpful. Thank you so much for the time you (and everyone else who contributed) put into that. A few questions...
1) Do you find that people tolerate applesauce alright? I know that you originally recommended limiting fruit to just one banana a day, but I find myself so hungry and was thinking that in moderation it might be ok because the apples are cooked and there's only about 2 gm of fiber in a 1/2 cup. I'm not sure if unsweetened plain applesauce from the store includes the apple skins. Upon some research, it sounds like they do not but another easy option would be to make my own. However, maybe part of the reason why it would not be ok is because of the fructose?
2) How do you guys feel about brown rice cakes? No one makes white rice cakes that I can find and having one easy on the go thing to nibble on really helps. The ones I'm eating contain 2 gm of fiber for 4 cakes which doesn't seem bad at all, especially since I rarely eat 4 at a time, but I read an article the other day about the outer layers of brown rice containing anti-nutrients and gut irritants: http://paleoleap.com/about-rice/ I tried making my own white rice cakes the other day which actually turned out pretty well, but it's a long process (I will post on the recipe board when I get a chance). Just wondering your thoughts about the brown rice ones.
3) I made bone broth successfully the other day. It was good and rice cooked with bone broth was especially nice. One question: Do you think it's OK to include something like onion in the cooking process to get more flavor in the broth, but then taking it out so I'm not actually eating it?
4) What are your thoughts on alternative milks during phase one of the diet? It doesn't contain fiber, but do you think it's a bad idea during the initial phase of healing? I was thinking coconut milk (if I can find one without loads of added ingredients) since almond is a common allergen and rice "milk" in stores is full of other ingredients. I'm planning to do Enterolab testing in the next couple of weeks, so I guess if almond does not come up as an issue then maybe that's OK. Anyway, just wondering because it would be a helpful addition, but also not necessary.
5) One of my main issues right now is urgent morning D. Is there anything you recommend for minimizing that? I know it's a common problem for people with MC. Maybe eating something specific in the morning, I don't know. Today happened to be a good day for me. Not normal, but I did not have an urgent BM this morning. I had ground turkey (rosemary-free), white rice, and banana. I've had that before though and had a problem. In the last few weeks I've had urgent morning D every day like clockwork, so hoping some healing is taking place though it would probably be early for that.
6) Is bacon an ok meat for phase one? I think Gabes' post said it was, but I wasn't sure if it was too fatty. I never ate it much in the past anyway, but just wondering. Gabes, you didn't mention beef in your post, but I've been eating it. What do you think? I used beef bones for my bone broth too.
7) How do you feel about rice protein for added calories? I think most are made with brown rice, and they may have other ingredients as well. I haven't done much research but just wondered whether or not it would be beneficial.
8) Gabes, you also mention in your post that coconut flour (in muffins for example) and coconut sugar (in your sweet rice recipe) are OK. I just wanted to double check on those. Are these products usually OK in phase one? Do you happen to know of a super simple coconut flour muffin or pancake recipe? I will do my own research, but in case you do know of something, I wanted to ask.
9) Have you heard anything about it being bad to heat olive oil due to oxidation? I saw a YouTube video purporting this to be true, but upon further research, most say it is OK.
10) I promise I am almost done! Vitamins. I started topical magnesium and think it might actually be helping my mood, but not sure. The one I'm using is only 66 g of elemental magnesium for 4 sprays. So far I've been doing that dose twice per day, but guessing more would probably be good. What is a good amount to do? And is there an oral type that is safe? The oil itches my skin but maybe that will get better over time. I find it itches most on my arms and legs, so I've switched to my torso.
11) I had my vitamin D and B-12 levels checked. Vitamin D was low at 23 ng/mL (standard range 33 - 96 ng/mL). Doctor suggested I take 4,000 IU per day. Does that sound like enough? The budesonide is not helping my symptoms as much as I thought it would. It has helped frequency during the day but consistency is far from normal and I still have lots of urgency. Tex, I read a post you wrote about the function of vitamin D in how budesonide works in the body, and I'm wondering if my low level may be a reason why it's not working so well. I am also wondering about sublingual vs. tablet forms of this and all vitamins. Is sublingual advisable because we have trouble absorbing things? I did take vitamin D tablets about a year ago and definitely absorbed it because my level went a little too high.
12) My B-12 was 339 pg/mL which is within normal range, but would higher be better? If so, any particular dosage you would recommend?
13) One last question about the intro diet in general. Let's say I go months without any improvement. How do I know if I should continue with the same foods or try swapping some out to see if I'm reacting to one? Since healing can take a long time, how do we know to keep going and wait for improvement or start dropping specific foods like chicken, sweet potato, or banana?
I have so many questions. I'm so sorry! I know many things will require fine-tuning for my specific body, but I so appreciate any advice you can give.
I hope you are both well and having a lovely summer (Tex) and winter (Gabes!) :)
Theresa
Newbie to the forum, but not to MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Dont apologise for the questions!! it means you are being proactive about getting well! that is a great thing.
1) yes, quite a few do ok with bland apple sauce - if you are hungry increase protein intake, and try and have protein as snacks..
2) best to avoid brown rice, and nutritionally there is not much value to rice cakes per say... as i mentioned above, if you are hungry having protein every meal and as snacks will help alot. pretty sure there are white rice cakes available as other have had them.
3) for now, best to avoid onion. cooking with it is the same as eating it. Some of your safe veges will help with flavour. and over time (a few months) your tastebuds will get used to the blander cooking types etc.
4) Yes safe nut milks or rice milks are ok double check the ingredients (lots have soy etc)
5) this is semi normal as the body does lots of work during the night. as you spend time on the healing eating plan things will improve, but it takes time, weeks and months. the other option is maybe taking small dose of immodium before bed.
6) Bacon is good if you go ok with pork, and fattier the meat the better! animal fat is good for healing (amino acids etc)
7) i use a white rice protein powder, and others have used a hemp protein powder. not necessarily for calories but moreso to increase protein intake (needed for healing) and as mentioned above, snacking on protein will alleviate alot of the hunger issues.
8) coconut flour/sugar are your safest options in stage one. coconut sugar is lower GI and has higher amounts of magnesium and potassium compare to refined sugar.
coconut flour is tolerated well by most (low risk of gluten contamination and settles better than grain flours)
9) Have you heard anything about it being bad to heat olive oil due to oxidation? I saw a YouTube video purporting this to be true, but upon further research, most say it is OK.
10) Magnesium - the RDA per day is 400mg, to correct deficiency you need about 500-600mg per day of elemental magnesium
http://www.vitacost.com/doctors-best-hi ... -tablets-2 this product is tolerated well by most
and Vanessa has had great success with the Dr Dean product ReMag powdered product
11) I had my vitamin D and B-12 levels checked. Vitamin D was low at 23 ng/mL (standard range 33 - 96 ng/mL). Doctor suggested I take 4,000 IU per day. Does that sound like enough?
NO - if you are low, and still having inflammation you would need at least 7000iu for 2 months. (we use about 5000iu a day)
12) My B-12 was 339 pg/mL which is within normal range, but would higher be better? If so, any particular dosage you would recommend?
For now, the main focus is Vit D3 and magnesium.... in a couple months then look at Vit B options
13) with your low Vit D and magnesium, you need good levels of this for the body to heal. once you are doing the higher dose of Vit D and high dose of magnesium for 4 weeks (at least) then see where you are at symptom wise and review the diet then.
hope this helps...
happy healing
1) yes, quite a few do ok with bland apple sauce - if you are hungry increase protein intake, and try and have protein as snacks..
2) best to avoid brown rice, and nutritionally there is not much value to rice cakes per say... as i mentioned above, if you are hungry having protein every meal and as snacks will help alot. pretty sure there are white rice cakes available as other have had them.
3) for now, best to avoid onion. cooking with it is the same as eating it. Some of your safe veges will help with flavour. and over time (a few months) your tastebuds will get used to the blander cooking types etc.
4) Yes safe nut milks or rice milks are ok double check the ingredients (lots have soy etc)
5) this is semi normal as the body does lots of work during the night. as you spend time on the healing eating plan things will improve, but it takes time, weeks and months. the other option is maybe taking small dose of immodium before bed.
6) Bacon is good if you go ok with pork, and fattier the meat the better! animal fat is good for healing (amino acids etc)
7) i use a white rice protein powder, and others have used a hemp protein powder. not necessarily for calories but moreso to increase protein intake (needed for healing) and as mentioned above, snacking on protein will alleviate alot of the hunger issues.
8) coconut flour/sugar are your safest options in stage one. coconut sugar is lower GI and has higher amounts of magnesium and potassium compare to refined sugar.
coconut flour is tolerated well by most (low risk of gluten contamination and settles better than grain flours)
9) Have you heard anything about it being bad to heat olive oil due to oxidation? I saw a YouTube video purporting this to be true, but upon further research, most say it is OK.
10) Magnesium - the RDA per day is 400mg, to correct deficiency you need about 500-600mg per day of elemental magnesium
http://www.vitacost.com/doctors-best-hi ... -tablets-2 this product is tolerated well by most
and Vanessa has had great success with the Dr Dean product ReMag powdered product
11) I had my vitamin D and B-12 levels checked. Vitamin D was low at 23 ng/mL (standard range 33 - 96 ng/mL). Doctor suggested I take 4,000 IU per day. Does that sound like enough?
NO - if you are low, and still having inflammation you would need at least 7000iu for 2 months. (we use about 5000iu a day)
12) My B-12 was 339 pg/mL which is within normal range, but would higher be better? If so, any particular dosage you would recommend?
For now, the main focus is Vit D3 and magnesium.... in a couple months then look at Vit B options
13) with your low Vit D and magnesium, you need good levels of this for the body to heal. once you are doing the higher dose of Vit D and high dose of magnesium for 4 weeks (at least) then see where you are at symptom wise and review the diet then.
hope this helps...
happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Theresa,
Gabes did a good job of addressing your questions, so I'll only comment on a few things here and there.
Probably a rice cake now and then won't cause any problems, but if you eat enough of them they might. I'm not aware of any sources of white rice cakes, but as Gabes says, one would think that they would be available.
Most of us find that even if we are sensitive to almonds or cashews, we can tolerate Almond Milk or Cashew Milk just fine.
Animal fat is healthy, but some of us find that early on we may not be able to handle large amounts of fat. It depends on how well you are able to absorb it because unabsorbed, too much of it can cause D simply because of it's lubricating qualities.
The biggest problem with olive oil is that according to some reports, up to 70 % of imported olive is adulterated (diluted) with cheaper oils. If it's blended with canola oil or even corn oil that might not be a problem, but some of it is blended with soy oil. California olive oil is pure, but it's usually more expensive.
It's certainly possible that your vitamin D level might be limiting the effectiveness of budesonide, but some of us seem to simply produce more inflammation from some of the things in our diet than the budesonide can handle.
While in the normal range, a 339 pg/mL level of B-12 is a bit low for MC patients. Most of us do better if our B-12 level is higher, especially if we are having typical neurological symptoms. If you're not having symptoms though, then as Gabes mentioned, it probably can wait until after you are farther along in your recovery. 1,000–2,000 mcg of sublingual B-12 (methylcobalamin) per day may be helpful if you are having any symptoms such as paresthesia (tingling or numbness in fingers, hands, toes, or feet) or tics or twitches at the corner of the eye or in muscles.
The EnteroLab test results should answer any questions you might have about some of the foods that you are currently eating.
You seem to be on track with your diet.
You're very welcome,
Tex
Gabes did a good job of addressing your questions, so I'll only comment on a few things here and there.
Probably a rice cake now and then won't cause any problems, but if you eat enough of them they might. I'm not aware of any sources of white rice cakes, but as Gabes says, one would think that they would be available.
Most of us find that even if we are sensitive to almonds or cashews, we can tolerate Almond Milk or Cashew Milk just fine.
Animal fat is healthy, but some of us find that early on we may not be able to handle large amounts of fat. It depends on how well you are able to absorb it because unabsorbed, too much of it can cause D simply because of it's lubricating qualities.
The biggest problem with olive oil is that according to some reports, up to 70 % of imported olive is adulterated (diluted) with cheaper oils. If it's blended with canola oil or even corn oil that might not be a problem, but some of it is blended with soy oil. California olive oil is pure, but it's usually more expensive.
It's certainly possible that your vitamin D level might be limiting the effectiveness of budesonide, but some of us seem to simply produce more inflammation from some of the things in our diet than the budesonide can handle.
While in the normal range, a 339 pg/mL level of B-12 is a bit low for MC patients. Most of us do better if our B-12 level is higher, especially if we are having typical neurological symptoms. If you're not having symptoms though, then as Gabes mentioned, it probably can wait until after you are farther along in your recovery. 1,000–2,000 mcg of sublingual B-12 (methylcobalamin) per day may be helpful if you are having any symptoms such as paresthesia (tingling or numbness in fingers, hands, toes, or feet) or tics or twitches at the corner of the eye or in muscles.
The EnteroLab test results should answer any questions you might have about some of the foods that you are currently eating.
You seem to be on track with your diet.
You're very welcome,
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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Jumpindogs
- Adélie Penguin
- Posts: 129
- Joined: Thu May 12, 2016 9:41 pm
- Location: Wisconsin
Hi TheresaTeresita wrote:Hi Tex and Gabes (and anyone else who reads this!)
Thank you so much for your input on my last message. I feel bad taking so much advice and not giving any in return. Perhaps one day when I'm in a better place.
Tex, I'm sorry to hear you had to deal with a Bactrim allergy too. My doctors actually told me the allergy is not that uncommon and they recognized it right away. Of course that wasn't comforting at all except that I was glad all the symptoms weren't a sign of systemic infection due to my fistula. Anyway, at least I know now, but I would have much rather avoided that fiasco!
I wanted to give you guys a quick update and ask a few more questions about fine-tuning of diet and vitamin supplementation. So, I've been on budesonide for about 5 weeks now and have been on the minimal MC diet for only about 1 week. It took me awhile to get to a point mentally where I could give up more things after already being on such a limited diet. I'm eating various meats (chicken, turkey, pork, beef, salmon), sweet potato, carrot, parsnips, banana, applesauce, and rice cakes. Coffee sometimes, and considering adding a peppermint tea. Salt and pepper, olive oil, and coconut oil.
Gabes, your post to the recovery section of the forum about diet phase one was extremely helpful. Thank you so much for the time you (and everyone else who contributed) put into that. A few questions...
1) Do you find that people tolerate applesauce alright? I know that you originally recommended limiting fruit to just one banana a day, but I find myself so hungry and was thinking that in moderation it might be ok because the apples are cooked and there's only about 2 gm of fiber in a 1/2 cup. I'm not sure if unsweetened plain applesauce from the store includes the apple skins. Upon some research, it sounds like they do not but another easy option would be to make my own. However, maybe part of the reason why it would not be ok is because of the fructose?
2) How do you guys feel about brown rice cakes? No one makes white rice cakes that I can find and having one easy on the go thing to nibble on really helps. The ones I'm eating contain 2 gm of fiber for 4 cakes which doesn't seem bad at all, especially since I rarely eat 4 at a time, but I read an article the other day about the outer layers of brown rice containing anti-nutrients and gut irritants: http://paleoleap.com/about-rice/ I tried making my own white rice cakes the other day which actually turned out pretty well, but it's a long process (I will post on the recipe board when I get a chance). Just wondering your thoughts about the brown rice ones.
3) I made bone broth successfully the other day. It was good and rice cooked with bone broth was especially nice. One question: Do you think it's OK to include something like onion in the cooking process to get more flavor in the broth, but then taking it out so I'm not actually eating it?
4) What are your thoughts on alternative milks during phase one of the diet? It doesn't contain fiber, but do you think it's a bad idea during the initial phase of healing? I was thinking coconut milk (if I can find one without loads of added ingredients) since almond is a common allergen and rice "milk" in stores is full of other ingredients. I'm planning to do Enterolab testing in the next couple of weeks, so I guess if almond does not come up as an issue then maybe that's OK. Anyway, just wondering because it would be a helpful addition, but also not necessary.
5) One of my main issues right now is urgent morning D. Is there anything you recommend for minimizing that? I know it's a common problem for people with MC. Maybe eating something specific in the morning, I don't know. Today happened to be a good day for me. Not normal, but I did not have an urgent BM this morning. I had ground turkey (rosemary-free), white rice, and banana. I've had that before though and had a problem. In the last few weeks I've had urgent morning D every day like clockwork, so hoping some healing is taking place though it would probably be early for that.
6) Is bacon an ok meat for phase one? I think Gabes' post said it was, but I wasn't sure if it was too fatty. I never ate it much in the past anyway, but just wondering. Gabes, you didn't mention beef in your post, but I've been eating it. What do you think? I used beef bones for my bone broth too.
7) How do you feel about rice protein for added calories? I think most are made with brown rice, and they may have other ingredients as well. I haven't done much research but just wondered whether or not it would be beneficial.
8) Gabes, you also mention in your post that coconut flour (in muffins for example) and coconut sugar (in your sweet rice recipe) are OK. I just wanted to double check on those. Are these products usually OK in phase one? Do you happen to know of a super simple coconut flour muffin or pancake recipe? I will do my own research, but in case you do know of something, I wanted to ask.
9) Have you heard anything about it being bad to heat olive oil due to oxidation? I saw a YouTube video purporting this to be true, but upon further research, most say it is OK.
10) I promise I am almost done! Vitamins. I started topical magnesium and think it might actually be helping my mood, but not sure. The one I'm using is only 66 g of elemental magnesium for 4 sprays. So far I've been doing that dose twice per day, but guessing more would probably be good. What is a good amount to do? And is there an oral type that is safe? The oil itches my skin but maybe that will get better over time. I find it itches most on my arms and legs, so I've switched to my torso.
11) I had my vitamin D and B-12 levels checked. Vitamin D was low at 23 ng/mL (standard range 33 - 96 ng/mL). Doctor suggested I take 4,000 IU per day. Does that sound like enough? The budesonide is not helping my symptoms as much as I thought it would. It has helped frequency during the day but consistency is far from normal and I still have lots of urgency. Tex, I read a post you wrote about the function of vitamin D in how budesonide works in the body, and I'm wondering if my low level may be a reason why it's not working so well. I am also wondering about sublingual vs. tablet forms of this and all vitamins. Is sublingual advisable because we have trouble absorbing things? I did take vitamin D tablets about a year ago and definitely absorbed it because my level went a little too high.
12) My B-12 was 339 pg/mL which is within normal range, but would higher be better? If so, any particular dosage you would recommend?
13) One last question about the intro diet in general. Let's say I go months without any improvement. How do I know if I should continue with the same foods or try swapping some out to see if I'm reacting to one? Since healing can take a long time, how do we know to keep going and wait for improvement or start dropping specific foods like chicken, sweet potato, or banana?
I have so many questions. I'm so sorry! I know many things will require fine-tuning for my specific body, but I so appreciate any advice you can give.
I hope you are both well and having a lovely summer (Tex) and winter (Gabes!) :)
Theresa
I love all your questions! And the answers Gabes and Tex gave you...Gabes and Tex, once again you rock. :-) I am newly diagnosed with LC so I am full of questions. Truly, the people on this forum are amazing...kind and caring and so generous with their time.
10) I am using the Life Flo magnesium lotion twice a day (morning and before bed to address leg cramps) and have no trouble at all with skin sensitivity. Plus it doesn't have to be washed off like the oil tends to be for some folks. Amazon has it for around $10 for an 8 ounce bottle but a friend said she just found it at a local health store (Health Hut) for about $7. I am also doing periodic bedtime Epsom Salt foot soaks and using the oral mag that Gabes recommended. Hoping that triple whammy approach gets my mag levels up. Leg cramps have greatly reduced so I think it's working!
5) Where do you get your rosemary free ground turkey? What brand? Or do you self-grind? Thanks so much! My problem is urgent AM D too...used to enjoy my long commute to work but now it's a definite problem. I feel your pain, incapacity and inconvenience. Hugs. :-)
Joanne and the Recycled Aussies
LC May 2016
LC May 2016
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Jumpindogs
- Adélie Penguin
- Posts: 129
- Joined: Thu May 12, 2016 9:41 pm
- Location: Wisconsin
Uh oh. That's good to know. As Gabes suggested, I will switch to coconut oil for cooking my potato shreds and grilling my chicken breasts.tex wrote:
The biggest problem with olive oil is that according to some reports, up to 70 % of imported olive is adulterated (diluted) with cheaper oils. If it's blended with canola oil or even corn oil that might not be a problem, but some of it is blended with soy oil. California olive oil is pure, but it's usually more expensive.
Joanne and the Recycled Aussies
LC May 2016
LC May 2016
This thread is soooo helpful! Another newbie here with LMC and malabsorption. Great questions and great answers ... thank you thank you thank you to everyone here!!!
~ Holly
~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis
"I strive to live in my heart, not in my head!"
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Jumpindogs
- Adélie Penguin
- Posts: 129
- Joined: Thu May 12, 2016 9:41 pm
- Location: Wisconsin
Hi Theresa!
Teresita
I hope you are doing better after Gabes' and Tex's helpful suggestions...they are so kind and generous to us newbies!
I decided to message you because I suspect you haven't been on the forum...I hope that means you are enjoying the busy days of a normal life. Anyway, can you tell me where you get your rosemary extract-free ground turkey? I am having real trouble finding that.
Thanks so much and blessings of health in body and spirit to you, Theresa.
I hope you are doing better after Gabes' and Tex's helpful suggestions...they are so kind and generous to us newbies!
I decided to message you because I suspect you haven't been on the forum...I hope that means you are enjoying the busy days of a normal life. Anyway, can you tell me where you get your rosemary extract-free ground turkey? I am having real trouble finding that.
Thanks so much and blessings of health in body and spirit to you, Theresa.
Joanne and the Recycled Aussies
LC May 2016
LC May 2016
Jumpindogs
I'm not sure you will see this, but I haven't been on the forum for about a year. You wrote such a kind note last year, with a simple question, and I am so sorry I never responded! I hope you are doing well in your LC journey and have improved exponentially since your diagnosis.
To answer your question (which you've likely already found an answer to), I get my ground turkey at Whole Foods. They don't always have it, but if you can get the turkey that is ground and packaged in the store, that does not have rosemary extract, as far as I know. All of the branded pre-packaged ground turkey is laced with rosemary. If they don't have the store-ground stuff, you can talk to someone in the meat department and they'll tell you when it will be in stock, or where to find it at another location.
I hope this helps and again am sorry that it took me a year to respond. I have not been doing very well, unfortunately. I lost too much weight and had to abandon the MC intro diet. There was a time when I felt better than I ever had, on Entocort, vitamin D, nutritional supplements, GF, DF, SF, CF, low fiber, etc. but I had surgery to close a fistula (which was successful!) and haven't been the same since. I've recently had a hunch that I need more vitamin D because I was taking more when I was at my best, so giving that a try. Otherwise, I am in the process of figuring out what to do next. My gastro doc has said that my case of LC is not typical and is not responding typically. I have inflammation in my small intestine, colon, and rectum. And the age of onset for me was also atypical. I've had symptoms on and off since age 5.
Anyway, he has suggested that I try Entyvio and I've been hesitant until now. Since Entocort didn't seem to be helping much and I'd been on it for a year, I started tapering, and symptoms have just gone from bad to worse. It feels like no diet or supplement is going to change my situation, or if it does, I will have to wait years for any relief. My life has been on hold in a lot of ways for about 2 years because of worsening symptoms, my overhealth has declined from lack of nutrition, and I just need some relief. Unfortunately, there's no guarantee that Entyvio will work as it is formulated for Crohn's and UC patients. I'm also hoping to find a nutritionist and/or functional medicine doc who is familiar with MC or at least IBD. I've worked with some who have helped but just aren't familiar enough with severe intestinal disease.
It's been a difficult road, but I haven't given up hope! It was encouraging to come back to the forum and see that so many people had viewed this thread. It's a lovely thought to know someone may have been helped by our discussion.
I'm not sure you will see this, but I haven't been on the forum for about a year. You wrote such a kind note last year, with a simple question, and I am so sorry I never responded! I hope you are doing well in your LC journey and have improved exponentially since your diagnosis.
To answer your question (which you've likely already found an answer to), I get my ground turkey at Whole Foods. They don't always have it, but if you can get the turkey that is ground and packaged in the store, that does not have rosemary extract, as far as I know. All of the branded pre-packaged ground turkey is laced with rosemary. If they don't have the store-ground stuff, you can talk to someone in the meat department and they'll tell you when it will be in stock, or where to find it at another location.
I hope this helps and again am sorry that it took me a year to respond. I have not been doing very well, unfortunately. I lost too much weight and had to abandon the MC intro diet. There was a time when I felt better than I ever had, on Entocort, vitamin D, nutritional supplements, GF, DF, SF, CF, low fiber, etc. but I had surgery to close a fistula (which was successful!) and haven't been the same since. I've recently had a hunch that I need more vitamin D because I was taking more when I was at my best, so giving that a try. Otherwise, I am in the process of figuring out what to do next. My gastro doc has said that my case of LC is not typical and is not responding typically. I have inflammation in my small intestine, colon, and rectum. And the age of onset for me was also atypical. I've had symptoms on and off since age 5.
Anyway, he has suggested that I try Entyvio and I've been hesitant until now. Since Entocort didn't seem to be helping much and I'd been on it for a year, I started tapering, and symptoms have just gone from bad to worse. It feels like no diet or supplement is going to change my situation, or if it does, I will have to wait years for any relief. My life has been on hold in a lot of ways for about 2 years because of worsening symptoms, my overhealth has declined from lack of nutrition, and I just need some relief. Unfortunately, there's no guarantee that Entyvio will work as it is formulated for Crohn's and UC patients. I'm also hoping to find a nutritionist and/or functional medicine doc who is familiar with MC or at least IBD. I've worked with some who have helped but just aren't familiar enough with severe intestinal disease.
It's been a difficult road, but I haven't given up hope! It was encouraging to come back to the forum and see that so many people had viewed this thread. It's a lovely thought to know someone may have been helped by our discussion.
I apologize for possibly being redundant with this response. After reading all of the words above, I didn't see mention of testing by Enterolab. It was the best thing I could have done and many on this forum have also tested with Enterolab. The stool specimen test showed that I had developed antibodies to gluten, dairy, soy and eggs. Until I knew that, I was eating things I shouldn't have been. To me, it meant I didn't have to go through the elimination diet. It also helped the chronic hives I have had for 3 1/2 years although my medications for that have been fairly effective.
Many of us have ordered the A1 and C1 panels which include more than gluten, dairy, eggs and soy. It's not cheap but if you have a doctor order them, I understand that insurance may kick in .
Enterolab is in Texas and was founded by Dr Kenneth Fines who also has MC, is a gastroenterologist and knew that blood tests are often inaccurate.
I find it helpful to read the test the testimonials on the Enterolab site.
Here is the link:
https://www.enterolab.com/
Susan
Many of us have ordered the A1 and C1 panels which include more than gluten, dairy, eggs and soy. It's not cheap but if you have a doctor order them, I understand that insurance may kick in .
Enterolab is in Texas and was founded by Dr Kenneth Fines who also has MC, is a gastroenterologist and knew that blood tests are often inaccurate.
I find it helpful to read the test the testimonials on the Enterolab site.
Here is the link:
https://www.enterolab.com/
Susan