Living in Harmony…

I’m a little achey…that’s all that has changed. I’m eating but not much more, and white bread just doesn’t hold much fascination anymore. We tried pale Teff burotos and aside from the brittleness it makes a mean buritto! The taste is very acceptable, and I’m trying to find some flour to add to my baking larder. I think I’m going to try some spelt. Limited gluten, a distant cousin of wheat, it does bake bread and thing nicely…we’ll see. I think it comes down to what I can tolerate, which doesn’t appear to be much and my stomach defect & reapir works against me.

My large liver may be getting lazy, I just can’t get the hemoglobin levels up on my own. Hence 2 units of whole blood yesterday. Despite past reaction, I was given only one dose of tylenol and benedryl. It was fine till it wore off(20 minutes before the blood was done).Getting 2 units, I should have had the tylenol/benedryl combo twice as well, but they held it since it went in “so fast”. I figured it out after coming home and looking at all that happened. I want to document this somewhere, sorry, this is it. Here’s the picture: The meds ran out after 4 nours at noon. Now about 12:30, I had 10 minutes on the IV machine and began to get freezing cold. I covered up, the nuRse wanted to get me blanket, but I only had 20 minutes to wait, so  I passed(dumbly).They turned up the heat, my fingers were almost blue and the IV sight started to hurt. Should have know as I got a hot flash in the midst but it was wierd becasue I didn’t warm up. Bruce came I got in the car & turned my heated seat on high. By this time I was hurting all over and I took Ibuprofen. after bout 1/2 in the carI was warming up…then I kicked a fever of 101! The Ibu’s didn’t do much , I took 1 1/2 tylenol(extra strength) and 2 benadryl, and laid down. 2hours later , after soakin thru three sides of two pillows, I felt good enough to get up , and began to put this all together. So now we know…don’t let up on the benadryl when I’m getting blodd.

Today I’m still achey(still have foreign bodies in me for my body to fight against, bit I’m feeling the strength a bit more too. Time will tell if it was enough, or if we do it all again on Friday. Stay tuned…

I’ve aloowed some wheat back into my diet, the only effect I can see is my knees are sore in their fibro spots this week! I’m trying to be as gluten free as possible, there are so many other problems, this seems rather petty. I know Sprue is a big deal, some of the weight loss MAY be from the Sprue, but the other concerns, no iron absorption & lessened absorption just because I have 1/3 less small intestine than most people. The Workshop I’m attending on 12/14 may help me with that. They are supposed to be able to geeet to the bottom of the nuritioanl stuff. We’ll see what they come up with.

The flat taste from the venofer is in full swing today. The back of my tongue has no taste bud sensation and it takes a few days f0r it to come back. This being # 6 treatment, it may take longer. It sure doesn’t help me fill out my clothes, I’ve GOT to get some pants that fit me! Trials and tribs… I’ll stop back after The Rockettes. My sister , Niece & Daughter in law coming with to start out the CHRISTmas Season! Yes, I said the “C” word, and around here, we say it a lot! No “No Holiday” Holidays in this neighborhood! Enjoy…

Thursday and the pattern has set itself. Now that I finally figured out the Venofer does certain things on certain days, I kind of know what’s coming. I really let the gluten thing go this week, and I lost no weight. I  haven’t had that much wheat, maybe once a day, but I feel better, less gaggy eating some wheat. I never realized how much they “fill” foods ” with wheat gluten to pump them up. Yesterday tried one of the Kinnickkannick bagels I got at  The Market District Giant Eagle. The Bagel was VERY dense, not quite enjoyable, but tasted okay. It did make my stomach tumbly though, and that hasn’t happened in a week.  Thank God for anti-emetics!

The Market District is a fantastic store premise, like being in the streets of Europe shopping from store to store for your food! I loved it. I t was a bit big for Bruce, but I’m a shopper for shopping’s sake! Fresh baked breads, treats, sandwiches, rotisserie, meat market, patisserie(for baked sweets and even a crepes station!, they make stir fry and pizza in their ow places too, You would never go hungry and it’s all built $6 a pound( hot dinner and cold bars included)!

Finally got an appointment at the Celiac Workshop , Over four hours of talking Sprue & Me with 4 different docs…what fun! I’ll learn a lot, and hopefully they will help me with these difficulties I’m having. Spaghetti casserole today with rice noodles. Bruce actually likes the rice pasta( I love it and have never been a fan of regular pasta at all!).Another week of learning how to run this bod…more comin’ up…

I did it, ate wheat! Trying to not eat anything with hidden wheat, that’s are usually the hardest of wheats used to fill space in products need to fill out. Hard or impossible to digest. The “No Gluten Added” Whole wheat bread sits very well, and I’m buying some german bread today. The nice thing about McGinnis home-made German dark bread is the wheat used is the soft winter”Just a tad sour” kind. SO it’s highly digestible and better for you all around. We are staying away from all wheat pastas it’s made of the semolina and hard wheats. I have never enjoyed pasta & sauce more than when I substituted rice pasta for the “real” stuff. I think iti has a more pleasant feel, and we will continue to use it.

I know there are those who cannot make these choices, I’m hoping I can, with a few substitutions, live wheat free too. Making one of those gluten free Betty Crocker cakes today…wanna bet it sits better than the “other stuff”? Keep reading…and drop my a comment…

Lost another 2.5 pounds this week, so far I’m down about 20 pounds since is went on this downward spiral. Yes there’s curtaining and some dulling of the villi in my small gut, but i have to eat something. My liver is huge and tho’ the joint aches are lessened by my staying away from wheat, m liver has continued to grow. The pain gets hard to bear some days, and it really tires me out. i was not this feeble and sick when I was eating wheat.

My decision to eat some wheat is backed up by my family…I know I have Sprue, I know more bread makes my poor gut more able to to accept other food, though. Some days all aI have had is bread before my diagnosis. I have phantom smells which are so unbearable, it skews my whole reference to whether I want to eat or not and now it seems a lot of food is flat…just no taste at all! These things are concerning me, and the worry isn’t good either. I feel like I’m damned if I do, damned if I don’t!

So all I can do is walk this path, trust that what I feel deeply is what’s right for me, and get on down the road! Papa God is here, and I’m so thankful His listening ear is available to me and everyone all the time, ’cause that’s the only thing I can hold onto ALL the time! So , off I go, stay tuned…..

Bruce and I are learning more about this world of wheat. Did you know there are different kinds, some almost indigestible(but used VERY commonly in the US for baking)? It seems our hunt for the loftiest bread made bakeries seek out the hardest of wheats. The hardness affects the gluten chains(our enemy) making a chewier, less cakey bread, but it also is NOT digestible. This wheat even causes our intestines to produce a mucous membranes covering the intestines further stopping absorption of nutrients. Is it any wonder that celiac toxicity is on the rise in The USA?

No worries though. I found a wonderful couple of articles on wheat that defined the fact that the soft white/red (winter) wheat is by far the most digestible and contains the LOWEST amount of gluten. Have yo even eaten bread from Germany? It has a sour-ish taste even tho’ there’s no sourdough starter in particular in it. That’s the effect of the soft wheat. The wheat is whole wheat and the bread is of course a darker color. Ohio grows The Best rated soft winter wheat in the country! We went to Shop ‘N Save and read EVERY Kind of whole wheat bread in the Aisle…it took almost an hour to read all those packages! All but one loaf had white wheat AND whole wheat and ALL but this one had gluten ADDED!!! The ration of carb to protien is the best resource to check. The one we found was about 8.5% protein, BUT it contained soy flour.. Sorry to those of you who cannot use soy, but (Thanks God!) not a problem for me. The kind of bread is:Brownberry NATURAL WHEAT bread…The Original Catherine Clark recipe that she started out with.  I came home and made a sandwich(PB&J)…it was awesome!

Now when I’ve become headstrong and threw caution to the wind, I have paid with all the normal digestive complaints we all have when we eat wheat. This time though, I took Beano(just in case) but there were NO problems! I am still taking Beano anytime I have to eat something that might have hidden wheat, and NO whate bread. But this is my place for now. I have to say something here. Yes, it’s been extremely hard to cut out wheat bread and all wheat additives. And things made with wheat actually gag me…I have an extremely touchy tummy. I’ve also continued to lose weight, ‘way too much for my stature, and I have little reserve to fight with anymore. So I sought some answers to get SOMETHING into me. My bile problem makes it hard to get thru the day without the “Sponge” of some bread to help with the enormous amount of fluid I seem to produce. The last 3 days have been pretty good, with a piece of bread to help my tummy and my taste! Stay tuned…

It’s always a good day when I get to add some really cool news here! First…you can make Carrot bread so goo, no one will know it’s gluten free! Got the recipe from the Glutenfreeda Site:

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1 1/3 Flour mi of your choice

1C sugar

1 t baking powder

1 1/2 t baking soda

1 t cinnamon

1/2 clove, nutmeg, & allspice

1/2 t salt

2/3 C oil

1 1/2 C finely chopped carrot

1 C finely chopped Pecans or walnuts

stir together. To make muffins–set oven at 350 and cook in tins 15-18 minutes

For bread–350 for an hour plus a few minutes(til pick tested several palces, comes out clean.

Now for my surprise Answer…Walmart MAKES GLUTEN  FREE bagels!!! Let ya know…

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The baker misheard me…NO GLUTEN FREE BAGELs AT WALART

Chebe is a great product! It makes the best rolls. BUT it has it’s limitations. Do NOT use it like a flour mix! You can’t use it to replace a mix in recipes that Call for flour, I did try  that today in a potato roll recipe. The rolls I made on Hallowe’en were good, tasted like Bread & I tho’t to  myself ‘this would be good with Chebe. However, I should have used the Chebe recipe and added additional potato flakes while using the eggs and milk the Chebe recipe calls for. My rolls were beautiful on the outside, but were a very good imitation of the inside of a jelly bean inside ,   no matter how long I cooked them!

I’ll try again later, I was gonna make myself eat them, but that jelly -wet tapioca consistency is pretty gross. Stay tuned…