Living in Harmony…

Made my own today, using recipes from Bette Hageman (http://www.theglutenfreelifestyle.com/gluten-free-flour-mix.html ). Its rice flour Potato and tapioca, …I susbstitute wheat STARCH for the tapioca. I asked everyone and checked it out online. Found it at the Asian foods store. I asked if they thought it was safe for, it’s wheat witht the gluten taken out. Now noone I asked until this afternoon ahd heard of it, besides my frinds that cook Asian. My SON knew all about it, he’s eaten the gluten….a product they use in China and India to augment to total amount of protein in cooking. Wheat starch is what is LEFT after they take out all the gluten! The cool thing is I get the taste without the  celiac reaction.

Now I’m baking even more and addinng to to the chebe. AND today I made my own baking mix to to restore my stash from The Gluuteny in Squirrel Hill, PA.

Bruce also found, at Walmart no lesss, The Glutino original cracker, a cracker to be used in SOUP…so cool, I have missed tomato soup for 3 months!

So life goes on, I pay when I have wheat; lots of bloating I now recognize as the wheat reaction…it hurts my already swollen tummy from this liver I struggle with). Enzymes are still up and I have biopsy in January…keep you posted there. For now Happy Hallowe’en…J

When I start cranking out copious amounts of bile, there just is little else I can do but eat some bread. It really helps to “sop up” the extra liquid in my gut.If having Celiac disease were my only problem it would be hard enough, but I have other things that come into play, what can I do?

The liver that   the abdominal space well below my ribs, all the way to my hip and crosses the midline bumping into spleen space! It’s becoming very painful, about a 7 on the 1-10 scale at the best times , and breathing normally, let alone properly for choir, is a feat unto itself! I’m so afraid I’m going to bruise or lacerate the liver while I’m in the car, not even wanting to drive because the seatbelt crosses right over it. At least riding shotgun, I have no belt over the painful places!

I’m totally frustrated, so much of my body is letting me down. each week with an iron treatment I gain a couple pounds from the steroids then the accumulated fluid form the steroids flushes out and I end up lower than the week before. This week I lost five pounds In the week that passed between treatments. Most of you have never seen me this thin. My choir friends assure me,it looks well not sickly, they are generous true friends. Yesterday I ate two mugfuls of chicken soup and a bit of my dinner at Olive Garden. The salad was good! Food and I just are having real issues.

Trick or treat is this evening,lots of kids, and candy…My great-nephews will be by, for whom Tetka(that’s Auntie in Romanian)always has a special bag ready to go! I even managed to find some silly putty this year!…GO Target! We already sent the Florida box. Shirts cookies, and some other stuff…what is a PA Hallowe’en without Eat n’Park smiley cookies? We’ll have lots of fun, take some pictures and most candy is pretty safe for us no-wheat types…read, read, read…Cool.
Hairdresser today, may do something interesting!…Later

Yesterday I was bad…well, from a Sprue point of view anyway! I ate pizza at my Great-niece’s birthday party. And THEN, of course, I had icing…Ava ate the cake! But my stomach bloated out so much, trust me, I will not be eating any gluten today!

And that seems to answer my question of yesterday…I will remember the awful feeling & it’s being gone w/o gluten. Icicng is JUST as good with ice cream!

How does one do it? I kNOW it’s not going to kill me to have a piece of bread. Which, by the way, doesn’t taste nearly as good as I remember it. Every piece of bread I want to eat has to either be baked by me or bought at Eat n’ Park! Chebe and the buns at E n’ P are NOT gritty! Nothing worse than a gritty piece of bread.
So what to do? I haven’t a clue, but I’ll keep ya posted!

I skipped a couple days, doctors, babysitting…too many important things to do! So Doctor B says I have to be a “no bad day” Celiac. OK, Ok…I get it! But sometimes wheat cannot be avoided…what to do? Grin and bear I s’pose. I have been good, and the aches in my legs and arms are gone, again. You’d think I’d get it, but burritos are SOooo good ! It took mt 2 days to eat my LAST wheat burrito, but I loved every scrap! I DO have a restaurant, local place, wonderful family-owned…and they will make me a corn burrito, sans beans , of course!

I made it to choir…WONDERFUL and tiring & painful, but every ache was WORTH it too! My voice even surprised me and loosened up as I sang more. I lasted an hour, learned a new song and WILL be there next week. My fellow songsters ar eterrific, receiving me back with hearty hugs and (I know they stretched this) many “You look greats!”

That brings up my weight loss…I have held the same weight for 3 days…record in this new battle, but this afternoon the familiar pattern of cramping in my feet & legs have begun, so the gain, may be more the steroids than real stability.

Found a Yummy Oatmeal recipe(courtesy celiac.com) Keep this one, it’s great!

1/2 C Butter(or sub if you need lactose free)
1/2 C sugar
1/2 C brown sugar
1 egg & 1 egg white
1t vanilla
1 C flour(whatever mix you like)
1/2 t baking soda
1 T baking powder
1/4 t salt
1 1/2 C oats(gluten free )
1/2 cup dried fruit( I like dates better than raisins, so i used 1/4C raisins+
1/4 C dates

Oven on 350 and I baked about 8 minutes, I like them chewy, so I didn’t let the tops brown.Enjoy!…J

Good Morning, i had so much more to tell you yesterday,but I have to let it out S-l-o-w-l-y, so I can tell IT WELL.
Those first few weeks hit me hard! Why me, why did all of this jump out at me? Another, “You just have to live with this.” thing.. I can’t get a break. YA know…it’s isn’t fair, but there’s no malicious something out to squash “poor little Judy” I KNOW this already. Papa God send I have been here before, my questions are always answered the same way–
‘Why not you, and it’s only because it CAN happen, to everyone.”

Okay, enough said about poor me, just know this hits everyone hard. You have to pick up and move on, or Sprue wins. And that does no one any good. So…what to do? You go shopping, of course, and continue to READ-everything you can get you online, every store that carries food, asking everyone that MIGHT know something.

I don’t like most regular gluten free bread. I think some of it for me, is that I’m a Pittsburgh-er. We eat chewy bread, Italian crusts with a “Tooth” and a good chewy bagel. This is something Gluten Free bread usually is NOT! It tastes different, and smells very different. So I tried to bake a better loaf, my early loaves have been disastrous. I was determined to find something that did not offend this tricky odor sensitivity I have as well.

While scanning the recipes, I read about CHEBE bread. It’s the bread they eat in Brazil! Known as Cheese bread locally, because they do put cheese in it usually, it’s a product made of Cassava. From Wikipedia we learn “Cassava (Manihot esculenta; also called yuca, yucca, or manioc) is a woody shrub of the Euphorbiaceae (spurge family) native to South America that is extensively cultivated as an annual crop in tropical and subtropical regions for its edible starchy tuberous root, a major source of carbohydrates. The flour made of the roots is called tapioca.

I read tapioca and thought…”I could eat this, I LOVE tapioca!” Bruce and I set out to find this and the first place we found it was in Giant Eagle In Ohio! We looked around and found it to be sold in most Giant eagle groceries in the organic/ gluten free section. I bought a mix(pizza flavor was all they had) and made it. It puffs on it’s own no xanthan gunm needed. But the best part was “IT TASTES LIKE BREAD!!!” It’s fairly eXpensive as is all gluten free product. BUT At $3.75 or so per package still less eXpensive than having to buy all the flours to mix (the xanthan gum it self is about $12 for a 4 ounce bag!). After the pizza flavoed buns(Made 6 small sandwich buns), I began to look online for a better way to buy this. Lo and behold Amazon has it by the case(contains 8 bages of mix for $18.62. I Bought 2 cases of the general mix and it took days to ship.) Now I make a mi every other day and can have all the “bread ” I want. It makes so many different things, even cinnamon rolls! Chebe bread mix is casein and lactose free too! And they are very good!

Here’s the main website: http://www.chebe.com/
Explore the types and recipes…and Feel better about Living with Sprue!

It’s been almost 6 weeks since my GI doctor found what he thought just might be part of the most offense against my body. I had to have a camera endoscopy, supposed to pass out on it’s own in 24 hours &(yes, it got stuck for 3 weeks in my descending colon). then I had another endoscopy, the old fashioned kind, along with an MRI of my liver. Biopsies proved the Celiac Disease.

Bruce and scoured the house for “wheat-y things” and I began to mourn! For the last 14 years, since I started this GI odyssey, first being diagnosed with Annular pancreas and pediatric Gut syndrome, then surgeries-bad & Good, and constantly fighting both chronic pernicious & ferrous anemia .Bread(with wheat) has been my lifeline. When my mechanical defects that cannot be fied go wrong, bread is the one thing that helped me.

And now I can’t have it. I was really bereft, like losing my my life a bit. I read, BRuce found me a tiny computer so I Could carry up and down the steps easily, laying down as I need to during the day. But I kept reading. I tried the gluten-free flours mixed with xanthan gum and Guar. Rice Potato, corn, and soy are all good flour/starch in their own right, but to make it in to bread you need to add something “sticky”…in comes the guar and xanthan gums. They don’t agree with me!

But with many people theses flour mixtures

(I DO recommend The Gluuteny Bakery(www.gluuteny.com) In Squirrel Hill , PA.They have the most BEAUTIFULLY decorated cakes and cupcakes, all gluten, casein, and lactose free. Their shortcakes and muffins are to die for…I just don’t like the bread. But I do use the baking mix at home some.

I’ve gone to Columbiana,Ohio, to the baking store there that the Amish run and buy the different flours to have on hand separately. And I have kept reading.