Sarah's Sisu

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Deb
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Post by Deb »

Sarah, I have been very happy with this flour http://shop.betterbatter.org/products/a ... lour-20-oz
I buy it in the 25# size and it's about $3/lb. They sometimes have sales which are even better. Deb
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tex
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Post by tex »

Sarah,

Please be aware that many of us cannot tolerate xanthan gum, or any gum for that matter, if we happen to be sensitive to soy (because all gums except for xanthan gum are derived from legumes. Xanthan gum, by contrast, is made from the slime residue left by the Xanthomonas campestris bacterium as it ferments sugar feedstock (usually corn sugar).

No one knows why so many of us react to xanthan gum, but perhaps it's because our immune system reacts to certain gut bacteria, so the reaction to xanthan gum may be triggered by 1 or more of the enzymes in the slime, produced during the sugar decomposition process.
Sarah wrote:I saw in another thread mention of gluten withdrawal. I have to say that the first week on this diet I was feeling pretty awful with a lot of dizziness and shaky spells- those seem to have faded away for the most part- but I still am not seeing much difference in the digestion part of the story.
It's a lot easier to see our recovery progress if we analyze our condition on a monthly basis, rather than on a daily basis, because progress can seem slow for some of us, and setbacks are common, due to accidents, and sometimes for unknown reasons. But if we are dedicated, and we persevere, we will make progress.

Tex
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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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Post by tex »

Sarah,

Also, regarding high-histamine foods. Remember that we do not have to avoid all sources of histamine (that's impossible, and it would be bad for health even if we could do it), nor do we even have to avoid all types of high-histamine foods — we just have to limit the amounts in our meals in order to prevent our total histamine intake from exceeding our upper limits.

Tex
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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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Post by Hopeful »

Dear Sarah, I feel your pain! Most of us here do. A few months ago I remember thinking that "these people are crazy - I can't eat like that for the rest of my life!" The only real words of comfort that I can offer you - it , really, really does get easier. And you even, blessedly, lose your strong cravings for wheat/sugar/dairy.

My husband is decidedly not gluten free - it's his most important food group. He's also NOT a cook - I have enabled him, big time, over the last 40 years. But that's changed a lot. I make one meal/day for us. Period. Since retirement, it's been 3 meals/day. I make meat, safe veggies, potato or rice. What has changed is that he is now "cooking". I keep frozen pizzas, lasagna, mac & cheese (yuck, but he loves them), salad fixings, luncheon meat/cheese, english muffins and breakfast foods. His food doesn't even tempt me any more - it looks toxic to me. He doesn't lay a guilt trip on me anymore because he can plainly see that I feel so much better. He is decent about keeping his gluten crumbs to himself and there's a counter in our kitchen that's off limits to him.

Up until the beginning of Oct., I made 25 fantastic artisan breads every week for the farmer's market. I really grieve that! And dozens of granola bars (wheat germ), english muffins and other baked goods. I got rid of all my baking supplies and did a big clean-out.

But that's not an option for you. You have a much more challenging situation. If I were you, I would sit down and carefully explain it all to your mom and get her to partner with you. My daughter and I have a lot of territorial issues in the kitchen, so I know this won't be easy! She loves you, loves your family and wants to help. Lay down some parameters that she's in charge of these things and you're in charge of those things. Maybe don't work in the kitchen at the same exact time (smile). Let the cookies be her gift to the family. It will be hard on you this year but, I promise you, they won't call to you (much) after awhile. Spend some time to make yourself a supply of safe foods and keep them on hand so you can reach for them when you're feeling deprived. My go-to is thin rice cakes with almond butter. Or little meatballs that I can pop in my mouth.

You will have your ups and downs but I promise you that it will get easier and you'll feel better! Take care...
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nerdhume
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Post by nerdhume »

Just my 2 cents worth....

These things seem more complicated at first, soon it becomes second nature.

Try to stay away from the expensive GF processed stuff. It is expensive and often has hidden ingredients (may even have gluten in small amounts). I do have the GF flour for use in baking from scratch. There is no regular flour in my house.

Also after a while the allergen free meals look more normal as you heal and get used to the routine. We are both here for 3 meals and snacks every day. We own our own business in half the building and live in the other half. Most lunches and dinners revolve around meat, potatoes or rice, well cooked veggies, sometimes husband has salad he makes for himself.

My husband has a few things that are just his and I have a few that are just mine. He keeps a loaf of regular bread, he doesn't care for the Pamela's Gluten free I make in the breadmaker. He has his own chips(Doritos, Ceetos, etc)
Currently he has chocolate covered cherries and a Collin Street Bakery Fruitcake (can't be Christmas without it).
I have Fritos, Potato Chips, coconut candy I made for me, Skittles, and Gourmet jelly beans so I don't feel deprived.

He has regular milk, I have almond milk. He has a beer occasionally, I have red wine.

We both enjoy the Bluebell Fruit Bars as a light dessert in the evening while watching TV.

It will work itself out with love and straight talking. My favorite thing to say in situations such as yesterday when he suggested Chinese food "do you want me to sleep on the bathroom floor?" He forgot about soy...as far as I know there is NOT a Chinese dish that doesn't have soy. I actually have not ever slept on the bathroom floor and the exaggeration makes us both laugh it off.

It may be more difficult with the kids and your mom. Just hang in there!
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Skyward
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The Gift of the Magi

Post by Skyward »

I have gone on two big car trips in the past two days to destinations over an hour away from home and with large shopping stores as a destination- we've established how much I really have trouble in the big stores with the lights and vertigo. Two days ago was to go to Costco with my mother who has a membership- to see if there was anything there that I might be able to use. There was no GF flour there and I was stymied in the frozen meats aisle- the angus burgers were not labeled with any ingredients at all on the packaging- not even beef. Then right next to the angus patties were some turkey burgers which seemed to be made with a large combo of ingredients- and boldly on the outbox was written "Gluten Free!" and I thought, if those Angus Burgers were gluten free, surely they'd be advertising it. Then I made the mistake of trying to google Costco burger ingredients and wound up going down a rabbit hole of commercial ground beef processing practices and... yeck. I was really hoping for some frozen lamb. I was really wanting some red meat. I'm getting tired of chicken and can hardly choke down turkey at all.

The kids had a hot dog snack before we left and I was really hungry and sad about not finding any food for me on this big trip of wasted effort.

I was having what I call "digestive lockdown" on that day. I don't know how it works- but some days when I leave home (which isn't often) my usual cycle of needing to take many bathroom breaks goes out the window and everything freezes up. This can sometimes be a 24 hr lockdown- but is not a return of normality by any means- the next time I go it will be as watery as ever.

The next day my husband wanted to go out again. I didn't think that I could really manage 2 days in a row of the lockdown routine. I had one small D in the AM and then had to leave home with (what I felt must be) an unusually large volume of unspilled D left inside my guts. Talk about anxiety.

Halfway through our afternoon out he decided he wants to go out to eat- totally not appreciating where I was already and how scary on so many levels eating out was going to be. And on top of all that- we chose a place we'd never been to because it seemed like a good chance for me to get a plain steak. The waiter was very helpful and they even had a special allergy menu- I'll try to update more about this later.

Before we were done shopping I had that rumbly feeling. Thankfully there is a bench outside the restroom at Target- I just took a seat and checked my phone for a few minutes till I knew I really had to go. (basicly- "I'm not getting in the car until I go D) I was very thankful about the timing how that worked out- that I felt I had to go, and that I actually was able to go, and I had a place to go- Pshew!!

later that night, back at home- I had to go to the bathroom 5 times between 9 PM and 2 AM and then this morning already I have gone 4 times. This compared to the usual 2-5 times per day- the two days out and I think the eating out really did a number on me.

Why did I name this thread what I did? In case you are not familiar with the classic short story- here it is:
http://www.online-literature.com/o_henry/1014/ It's a sad story of christmas presents, with the best intentions, gone wrong.


Well, three years ago we built this new house on our farm, and I have a beautiful dream kitchen now- after many years of not having a nice kitchen. I won't even describe how not nice I mean. The last thing I wanted to outfit my new kitchen was one of those colorful Kitchenaid stand mixers- such a luxury item- but one that surely a mother of four could claim as a justifiable investment in the toolkit of her life labor... but each year the budget was just a little tight to spring for it. So there we were in the kitchen department and I was looking for a double boiler for our son- and my husband was looking for an ice cream maker for our daughter- when he happened across the Kitchenaid display and admired the orange one aloud and seemed ready to take the plunge. "It is pretty, but you know I wanted the blue one,"- and I pointed out the two shades of pastel blue which I liked, "but I'm going to cry now..." dumbfounded what my problem could possibly be (because REALLY he has not really gotten it with me- this MC thing) ..."there is no point in getting it now because there is nothing I can make with it." at which point I just broke down with blubbering sobs there in the store.
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tex
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Post by tex »

Sarah wrote:and I thought, if those Angus Burgers were gluten free, surely they'd be advertising it.
The USDA (not the FDA) regulates whole meats, grains, produce, etc., that has no added ingredients, and has not been otherwise substantially altered or adulterated. There are absolutely no labeling requirements for unaltered agricultural products that fall under this law. If you see a label on a meat product, for example, you can be sure that something has been added. That's why the turkey had a label, and the angus burgers did not.

I understand how you feel about the Kitchenaid at this point in time, but trust me, . . . the day will be here soon enough when you will not only have a use for it, but you will enjoy using it. IOW, it won't always be like this — now only will you get your life back, but you will appreciate life more than ever.

Tex
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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.
Skyward
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Post by Skyward »

http://www.nytimes.com/2009/10/04/healt ... d=all&_r=0

This was the article I mentioned which I found so unnerving- it was about a woman who got e coli really bad and is now crippled because of it- the article went in depth into the industrialized packing production (which I'll be clear- I'm no lightweight in terms of butchering)- but the grand scale, volume and as the article highlighted- untraceable supply chain-

beyond the whole scary e coli bit- was this shocker:
To finish off the Smiths’ ground beef, Cargill added bread crumbs and spices, fashioned it into patties, froze them and packed them 18 to a carton.

The listed ingredients revealed little of how the meat was made. There was just one meat product listed: “Beef.”
Skyward
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Post by Skyward »

Now maybe I misread that because the quote says just one MEAT product listed. Maybe there was an ingredients list on those seasoned patties- which listed the other ingredients- but I didn't pick up on that until just now pasting the quote.
Deb
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Post by Deb »

Skyward, I shop Costco quite regularly. Here is a recent list of their GF options. http://queenbeecoupons.com/costco-glute ... oods-list/
I also like this flour, which is currently having another sale.
http://shop.betterbatter.org/products/i ... y-clearout
Skyward
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Post by Skyward »

This was my first time seeing an allergy menu.
My first time eating out since the restrictions.
I was already very nervous just to be out, and I wasn't quite sure how to talk about things with the waiter. I told him I have some medical issues with my diet and wanted to know if the steak was marinated before it was cooked. He went to ask the chef - and returned with the affirmative. Then he brought me this specially coded menu.

I was a bit confused because the steaks were clear all the way across but I had to assume there was a soy ingredient in the marinade- but I didn't ask for the specifics on it. I just ordered the steak and asked for over cooked steamed broccoli and a plain baked potato- and to not put any sauce or seasonings on the steak after it was cooked. He took my order and then returned one more time to check that it was ok about the marinade. I said it was ok although I still didn't ask what was in it.

Within an hour I had D while we were out- then several more times that night into the wee hours of the morning and then 4x in the am... This when I have been having half that at most on most days and only 2x on the good days.

So anyway, I guess there are some lessons to be learned here.
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Skyward
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Post by Skyward »

Thanks for that list Deb ! It's good to know. I hope I can do the enterolab testing soon and open my restricted diet a little. Right now I'm worried that chicken may be a problem - I am just choking on turkey. I wish I could try some lamb.
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Post by nerdhume »

:ChefStirringPot:

I agree with Tex...
it won't always be like this — now only will you get your life back, but you will appreciate life more than ever.
That's the only thought that gets me through the bad days. Also I really appreciate the small things now.
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
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Post by dfpowell »

Skyward

Costco has some good lamb (chops, leg and rack), that I buy all the time.
Donna

Diagnosed with CC August 2011
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Followup visit with GI Doc

Post by Skyward »

Yesterday I had a followup visit with my GI doctor. She seemed genuinely happy to hear about the improvements I've had through diet changes. I came with a bunch of literature to show her- Tex's book, the histamine food chart and the menu of tests available through Enterolab.

She looked through the book pretty quickly and had never seen it or known of it.

She had never heard of Enterolab or that type of testing and seemed skeptical- but she asked if she could keep the papers to research a little more. I'm crossing my fingers. She ordered some bloodwork for food sensitivities as she is very understanding of my eagerness and caution about reintroducing foods. She suggested that eggs are probably a very safe place to begin.

She also had never heard anything about the histamine intolerance/sensitivity thing and I explained that it was much better understood and accepted in Europe and that most of the info I'd found was coming from european sources, and that since controlling my histamine intake I have had a tremendous relief from my typical allergic symptoms with my nose and sinuses.

I took some time to describe my withdrawal from gluten and that I had the surprising resolution of stress incontinence once off gluten- she had never heard of that happening either.

So- she probably either thinks I'm a treasure trove of new information or a lunatic- she does a pretty good job of not revealing.

She gave me a rundown of a few drug treatment options left with their relative efficacy- topping the list was the pepto bismol route (but not in the volume that Dr. Fein goes for) I said that I'd really like to try to go without medications.

She also ordered some bloodwork to test my thyroid levels and for vit D which I requested.

I've lost 19 lbs since the last visit about 6 weeks ago (weight I could afford to lose) thanks to the diet restrictions and likely a lot of inflammation bloating.

I also got signed up to use a online system called "mychart" through our hospital system that allows me to get a notification and see my lab results online, and compiled. I don't have a medical history that will really show changes at this point- but looking at it last night it even has an option to view a graph of how different levels have changed over time. Pretty cool- I hope it works as well as advertised.
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