I was diagnosed with LC today...

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Jumpindogs
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Post by Jumpindogs »

Erica P-G wrote:Hi Joanne,
I've been working hard on maintaining phase 1 of my elimination diet since my May 12 diagnosis...six weeks. I've been eating banana, potato chips (potato, olive oil, sea salt), plain chicken, peeled sweet potato, peeled red potato, peeled white potato, garlic salt, olive oil, water. Had to add natural applesauce (apples, water, ascorbic acid) and ground turkey (turkey, rosemary extract) because I was going nuts. And dried banana (banana) because I need a snack besides potato chips to carry with me. I'm taking the following daily supplements that are all gluten, dairy and soy free: Magnesium 650 mg (divided during the day), Calcium 500 mg per my Osteo doc, Vitamin C 500 mg, Krill Oil, Vitamin K2 45 mcg, Vitamin B-100 complex. I am also using Life-Flo Mag lotion twice daily...Mag mg per teaspoon unknown since the company has not answered my email...and periodic evening Epsom Salt foot baths. Oh yeah...I take Benadryl at night to sleep.
You've done an outstanding job in 6 weeks! I'm afraid though that you may need to keep it up for a while longer. From what I see here I would suggest Lara Bars with only 2-4 ingredients as a snack - pick your safe ingredient mix from their assortment of bars, add in Sea salt and coconut oil and let the potato chips, garlic salt and olive oil rest for now. Switch things around until something clicks.

I am only eating Turkey, Ham, Pork chops and Cornish Hen bone broth with carrots, celery and gluten free noodles - an sea salt as my flavoring (I freeze this in portions and take it to work daily). I eat red and yellow steamed peeled potatoes mostly and am able to use some coconut aminos as a bit more flavoring. For a snack I will pull out a Lara Bar, or eat a small serve of Rice Dream Vanilla ice cream.

Best guess on the Mag flo lotion is going to be that it carries the same potential as the oil because you may let it stay on without wiping anything off due to the salt residue and therefore it will soak in completely given a longer period of time left on the skin. Assuming you are applying a dollop on legs and arms it could be roughly 200mg.

A side note on the Benedryl, test yourself every so often to see if you need benedryl every night. Just recently I plateaued with my healing and kinda started fresh with my approach and that meant looking at everything I had been doing and re-evaluating if it was still helping or not, no sense in continuing something if it really isn't contributing to the goal of finding the right connection of safe healing items. I'm not saying don't take it, but I understand if taken for long periods of time it has the potential to alter our cells and maybe in not such a good way.

I hope you find a Dr. that will listen and understand your path, even if they can't help 100% it helps our sanity when they at least offer some empathy to our situation.
Cheers
Erica
Thanks for lifting me up, Erica!

I wish, wish, wish I could do the Lara Bars but I have no clue yet what my safe stuff is. I am still eating to heal my recalcitrant colon.

Appreciate the info on the mag lotion.

I should've clarified that I only take the Benedryl on nights I work the next day. I get up at 0330 and work in a busy Transfusion Medicine department (Level 1 Trauma Center) so must be able to get some sleep to be sharp at work. Other nights I use just my essential oils to sleep and they work really well. I've wanted to try relying on just the EOs cause they work so well but there is some anxiety about not getting enough sleep. We simply cannot make mistakes at work.

Yeah, I really need a new GI doc/PA. I'll keep you guys posted on that.
Joanne and the Recycled Aussies
LC May 2016
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Gabes-Apg
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Post by Gabes-Apg »

here is a recent discussion where it was confirmed that the rosemary extract uses Soyabean oil in the process
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22321

you might be ok with the garlic salt given the origin - each person can be different. if you are reacting mildly to other things, it would tricky to confirm either way.

When any fruit is dried, it becomes high in sulphite - which tends to link in with high histamine.
Dried fruit is probably the single biggest source of sulphur dioxide your children will ever encounter, although if they are affected, it is unlikely that either you or your doctor will make the connection.
In Australia, dried fruit can contain extremely high amounts of sulphites – 3,000 parts per million (ppm) compared to 2,000 ppm in the UK, and far higher per serve than any other food consumed by children. Figures from actual analyses are hard to come by, but government and industry reports say that levels can be close to or over the limit. Analyses by a year 12 chemistry student at a Brisbane High School of dried apricots, peaches and pears found an average sulphite level of 2885 mg/kg. That means an average 200 gm packet of dried fruit would contain 577 mg of sulphur dioxide, or 144 mg per 50g serve
sulphur impacts digestion (it is one of the causes of smelly gas)

Safest oils are coconut oil, and animal fats. (if you roast meat, keep the fat and then use this to coat vegetables etc)

you say that you need non refrigeration items for work/breakfast - do you have a place that you can store a small cooler bag to keep items cold?
that is what I do each day, i pack up my water, snacks and meals for the day in small cooler bag with ice bricks/freezer bricks
that is what others have done when travelling etc
that way you could take better options to snack on, pre cooked proteins and eat them cold or another consideration that has worked for some is Rice protein or Hemp protein drink (mix with coconut water / safe nut milk )

having bigger serve of a protein at breakfast will make the work day easier - it might be time to try another protein so that you can have a safe protein for breakfast.

the other option given your circumstances is doing a coconut flour type paleo muffin/slice with minimal ingredients.
there are savoury options and if you made it with bone broth and cooked safe protein this may be a better option

I know the bland amount of ingredients eating plan is overwhelming at first, especially when you are still having issues. Most people who do it, use the home made bone broth and have soups and stews, this seems weird at first, and maybe more so weirder during summer, the thing is - IT WORKS for the majority.
Trust me, living in the aussie hot summers, and eating soups/stews for lunch every day is tough. the summer days here are so hot that I have do the cooking at sunrise. (it can be 75F with 90% humidity at 11am and it is lucky to get down to 65F to go to sleep)
albeit that is what suits me and minimises symptoms. I have been doing it for over 6 years...

day at a time, and it will get easier...
Gabes Ryan

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Jumpindogs
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EPIC Bacon Bar

Post by Jumpindogs »

I am hoping to be able to eat these Bacon Bars some day. INGREDIENTS: Uncured Bacon (Pork, Water, Salt, Vinegar, Celery Powder), Natural Pork, Lactic Acid

Would it be foolish to try now? I think I know the answer. Just wishful dreaming. :-)

http://store.epicbar.com/collections/ba ... s/baconbar
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Post by Gabes-Apg »

I have hesitation, as vinegar can be produced from wheat based ferment, celery powder can be a bit like the rosemary extract, anything can be used during the production process (wheat / soy) and it doesnt have to be declared on the label, and a quick google about lactic acid
Lactic acid is used as a food preservative, curing agent, and flavoring agent. It is an ingredient in processed foods and is used as a decontaminant during meat processing. Lactic acid is produced commercially by fermentation of carbohydrates such as glucose, sucrose, or lactose, or by chemical synthesis.
There are safer options
Jari mentions some jerky type products in her recent travel post
http://www.perskyfarms.com/phpBB2/viewt ... ight=vegas

Marcia mentions some snack options here as well
http://www.perskyfarms.com/phpBB2/viewt ... ight=vegas
Gabes Ryan

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Erica P-G
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Post by Erica P-G »

I just came across a Natural Slow Roasted Turkey Breast deli meat by Oscar Mayer, the verdict is still out but its ingredients are: Turkey breast, water, cultured dextrose(to preserve quality), contains less than 2% of potato starch, sea salt, honey, vinegar, cultured celery juice, and cherry powder.

Not sure but the 2% of ingredients may so small that this one may be ok, if nothing else to at least rotate with. I have been using a good helping of it on a safe toasted local cinn/raisin bread (or a plain toasted local made bread) with some plain coffee with cashew milk in it every morning for breakfast for a month at least. Before that I tried to find the next best deli meat, this one is even better for me with less offending ingredients that trigger my MC.

For lunch, and I have been doing this for a year now, I bring my frozen bone broth Cornish hen noodle soup to work and warm it up in a microwave along with some rice chips (I have a mini Mtn Dew it is that tiny bit of caffeine that keeps me feeling up an ready).

I looked at one of two types of my lara bars and there is one with only 2 ingredients it has 6 gm of protein and it is the cashew/fig bar with sea salt. All you can do is give it a try if you can't bring some cold meat in a cooler. Also Cashew spread on rice chips is good....but again the cashew spread needs to stay cool throughout the day (a couple ice packs in a good cooler may be important in your line of work in order to help you maintain enough energy to do your job ;-) I'm not pushing this bar....it just doesn't have to be cold. I've limited myself quite a bit too, so forgive me if I am not much help in this protein dept.

I work in a scratch cooking facility too and I am still not much help because we react to so many things it can be so pathetic at times.

Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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tex
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Post by tex »

Joanne,

If you crave bacon why not try real bacon, without all the extra ingredients found in bars?

Tex
:cowboy:

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.
Jumpindogs
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Post by Jumpindogs »

Gabes-Apg wrote:here is a recent discussion where it was confirmed that the rosemary extract uses Soyabean oil in the process
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22321

you might be ok with the garlic salt given the origin - each person can be different. if you are reacting mildly to other things, it would tricky to confirm either way.

When any fruit is dried, it becomes high in sulphite - which tends to link in with high histamine.
Dried fruit is probably the single biggest source of sulphur dioxide your children will ever encounter, although if they are affected, it is unlikely that either you or your doctor will make the connection.
In Australia, dried fruit can contain extremely high amounts of sulphites – 3,000 parts per million (ppm) compared to 2,000 ppm in the UK, and far higher per serve than any other food consumed by children. Figures from actual analyses are hard to come by, but government and industry reports say that levels can be close to or over the limit. Analyses by a year 12 chemistry student at a Brisbane High School of dried apricots, peaches and pears found an average sulphite level of 2885 mg/kg. That means an average 200 gm packet of dried fruit would contain 577 mg of sulphur dioxide, or 144 mg per 50g serve
sulphur impacts digestion (it is one of the causes of smelly gas)

Safest oils are coconut oil, and animal fats. (if you roast meat, keep the fat and then use this to coat vegetables etc)

you say that you need non refrigeration items for work/breakfast - do you have a place that you can store a small cooler bag to keep items cold?
that is what I do each day, i pack up my water, snacks and meals for the day in small cooler bag with ice bricks/freezer bricks
that is what others have done when travelling etc
that way you could take better options to snack on, pre cooked proteins and eat them cold or another consideration that has worked for some is Rice protein or Hemp protein drink (mix with coconut water / safe nut milk )

having bigger serve of a protein at breakfast will make the work day easier - it might be time to try another protein so that you can have a safe protein for breakfast.

the other option given your circumstances is doing a coconut flour type paleo muffin/slice with minimal ingredients.
there are savoury options and if you made it with bone broth and cooked safe protein this may be a better option

I know the bland amount of ingredients eating plan is overwhelming at first, especially when you are still having issues. Most people who do it, use the home made bone broth and have soups and stews, this seems weird at first, and maybe more so weirder during summer, the thing is - IT WORKS for the majority.
Trust me, living in the aussie hot summers, and eating soups/stews for lunch every day is tough. the summer days here are so hot that I have do the cooking at sunrise. (it can be 75F with 90% humidity at 11am and it is lucky to get down to 65F to go to sleep)
albeit that is what suits me and minimises symptoms. I have been doing it for over 6 years...

day at a time, and it will get easier...
Thanks for all the info, Gabes. Much appreciated! I am sad to lose half of what I've been eating though...white potato shreds or the potato chips, dried banana, ground turkey. Suck it up, Joanne. Part of the process.

I do take my meals to work in a cooler bag with ice packs. I prolly wasn't clear enough. My work dictates that I am on standby in case of traumas and if called I must leave immediately for work. That means no time to prepare. I also sometimes have to stay at work (unplanned and for 12 instead of 8 hours) after I have already consumed the meals I packed in the cooler bag. Plus I tend towards a little hypoglycemia and thus have always required a handy snack quickly available no matter where I am. That tendency greatly diminished once I went South Beach and began eating more protein. But now I am protein deprived.

I do eat stews/soups for lunch and dinner. Every day. I am fine with that. It's breakfast and snacks that are stumping me.

I'd be thrilled to try a Rice or Hemp protein drink (mixed with coconut water/safe nut milk) but I thought it was too early in my process for that since my colon is still misbehaving. Ditto for a different protein. What protein do you suggest I try?
Joanne and the Recycled Aussies
LC May 2016
Jumpindogs
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Post by Jumpindogs »

Gabes-Apg wrote:I have hesitation, as vinegar can be produced from wheat based ferment, celery powder can be a bit like the rosemary extract, anything can be used during the production process (wheat / soy) and it doesnt have to be declared on the label, and a quick google about lactic acid
Lactic acid is used as a food preservative, curing agent, and flavoring agent. It is an ingredient in processed foods and is used as a decontaminant during meat processing. Lactic acid is produced commercially by fermentation of carbohydrates such as glucose, sucrose, or lactose, or by chemical synthesis.
There are safer options
Jari mentions some jerky type products in her recent travel post
http://www.perskyfarms.com/phpBB2/viewt ... ight=vegas

Marcia mentions some snack options here as well
http://www.perskyfarms.com/phpBB2/viewt ... ight=vegas
I had already looked at Jari's jerky treats and the ingredients scared me off. "Ingredients: Beef, Brown Sugar, Water, Sea Salt, Natural Flavorings, Vinegar" What is your opinion?

I had also already looked at Marcia's EPIC bison bars. For some reason the website won't let me copy the ingredients but they include brown sugar, vinegar, celery powder and lactic acid. Along with cranberries. Struck me as too much. If the EPIC bacon bars are not a good idea then their bison bars are out for the same reason. :-(

Her Oskri coconut bars are only coconut and rice syrup but a whopping 29 g sugar and 1.4 g protein. That's a carb fest with no protein to sustain. Might be good for some but not good for me. My body needs protein.

But Marcia's salmon in a pouch idea is awesome! How did I miss that?! Thank you so much, Gabes! This seems doable for a snack and not too cost prohibitive at $6.90 a pound. Don't think I could handle it for breakfast though...but maybe mixed with some applesauce? Ingredients are pink salmon, water and salt. https://www.amazon.com/Bumble-Bee-Skinl ... GKYH099AAB

I did find this but at $35 a pound that is not happening. Hahaha! https://www.seabear.com/product-details ... o-gift-box
Joanne and the Recycled Aussies
LC May 2016
Jumpindogs
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Post by Jumpindogs »

tex wrote:Joanne,

If you crave bacon why not try real bacon, without all the extra ingredients found in bars?

Tex
Because I need something to store in my purse for consumption at a moment's notice based on my job eccentricities. :D

Also, I am a little frustrated/confused since I am trying to heal my colon before introducing anything beyond the chicken, potato, banana, water/tea diet. Had to add applesauce...and I cannot thank you all enough for not advising me to nix that! figured it was OK since it was suggested here as a chicken replacement for vegans...and turkey cause I was going nuts but now the turkey is out. Colon is not healing and I am having trouble with my low protein breakfast and snack. I understand colon healing can take a long time. But I need protein and cannot stomach chicken in the morning but shouldn't add any protein besides chicken. Arrgghh!

I have a science brain, work in a lab with fairly precise standard operating procedures and tend to function better with directions that I can follow. Deviation from those directions without proper advisement is not one of my strong suits. LOL!

BTW, how long does it usually take for Entocort to start having an effect? The Uceris improved my BMs right away although I did have to add Loperamide to resolve some residual urgency. I've been on Entocort four days and no progress. :-(

And another question...a question I should be asking my GI doc or his PA but since that's a challenge...is the reason health insurance in the US doesn't cover Uceris because it is only approved for use in patients with Ulcerative Colitis? At my initial appointment my doc said the reason he gave me the samples is because Uceris is very expensive and isn't covered by insurance. But he didn't write me a scrip to even try. Maybe he wanted me to start on it right away...and that was good...but then he could've given me the samples and a scrip. I see the company that makes Uceris has a savings program that ends up costing patients only $25 per scrip for any scrip costing $600 or less. Why would he put me on Entocort now if I could go back on Uceris? And why use so little Uceris initially (one 9 mg every other day for 24 days) if they have a savings program? If the Entocort is not working because relapse can be somewhat resistant to re-medication and I could've been on Uceris properly in the first place I am gonna be even more irritated with my doc. Grrrrr! I am hoping the reason is because Uceris is not approved for us in this country so a scrip would not have done any good and he just didn't explain that fully. I don't want another reason to feel so disappointed in him...I need him until my July 15th appointment with my new GI doc. :-)

Thanks again for all your help and apologies that my frustration is seeping into my posts. But there is a bright spot! My manager at work emailed me that I will not be moved from my current parking assignment as previously stated nor do I need a request from my doc to retain my current parking assignment as previously required...how cool is that?! Not sure how that came about but I am immensely grateful for that gift of grace.
Joanne and the Recycled Aussies
LC May 2016
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Post by jlbattin »

Joanne,

I may have missed it, but how much Budesonide (Entocort) are you taking? And when are you taking it?
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
Jumpindogs
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Post by Jumpindogs »

Jumpindogs wrote:
But Marcia's salmon in a pouch idea is awesome! How did I miss that?! Thank you so much, Gabes! This seems doable for a snack and not too cost prohibitive at $6.90 a pound. Don't think I could handle it for breakfast though...but maybe mixed with some applesauce? Ingredients are pink salmon, water and salt. https://www.amazon.com/Bumble-Bee-Skinl ... GKYH099AAB
I am bumming. Some recent reviews on Amazon indicate the Bumble Bee Wild Pink Salmon in a pouch, which was produced in Thailand, is now produced in China and what they used to enjoy now smells bad, tastes bad and is grey instead of pink. Some of these reviews are from people who had been buying this product for some years and were very disappointed at the change. I emailed the company to inquire but I am hesitant to buy. <sigh>
Joanne and the Recycled Aussies
LC May 2016
Jumpindogs
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Post by Jumpindogs »

jlbattin wrote:Joanne,

I may have missed it, but how much Budesonide (Entocort) are you taking? And when are you taking it?
That's understandable. I've been very wordy! I am taking the Entocort in the early morning with food as follows:
Jumpindogs wrote:
My doctor now has me on two 3 mg/24 hour budesonide capsules (Entocort EC) each morning with refills to last a total of four months. And an appt. to see him in three weeks.
Joanne and the Recycled Aussies
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Post by jlbattin »

I'm just curious as to only why 6 mg........I am still on it (I only take 3 mg about every 4 or 5 days now), but when I started, I took 9 mg (3 of them) every morning first thing. It took no time at all until my D was gone.

9 mg is the usual dose and then you go down from there. Just curious as to why only 6?
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
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Natural flavoring?

Post by Jumpindogs »

Is "natural flavoring" a no-no? It would seem to be a dump for all sorts of stuff that could be very wrong.

I ask because I found these. Ingredients are bacon cured with water, sea salt, sugar and natural flavors. https://www.oberto.com/products/#Applewood_Bacon
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Post by jlbattin »

I eat that particular brand of bacon jerky all the time.........it's very good and I don't have any trouble with it.

I don't eat their beef jerky though because it has beef stock in it and that can have soy.

I use jerky (beef and bacon) particularly when I'm traveling to have some safe quick protein!
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
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