I'm New....Hi to All

[Kari]

Hi Lulu and to the PP family. So sorry to hear of your loss and that you have MC. You have already received lots of good advise, and as you read more here, you will find many things that may help you along the path to recovering your health.

I have a history of bad reactions to drugs, so I'm trying very diligently to get my MC under control using diet. It's probably a good idea for you to get tested at Enterolab, as it seems to take some pressure off when you can get verification of suspected food sensitivities. They currently test for gluten, dairy, eggs, soy and yeast, and the results seem to be very reliable.

FWIW I made a shake this morning using coconut milk, cashews and fresh blueberries. I did it for the calories more than anything, and eating raw nuts and berries is harder on your gut than crushing them in a shake. It is my understanding that a vitamix can be used for many different purposes, including bread dough??? Anyhow, if you don't get a lot of use out of it now, you may later on as you start to heal. Just a thought.

Best of luck to you on your road back to health - again, welcome and glad you found us.

Love,
Kari

[lulu]

I appreciate your info Kari. I'd been wondering about coconut milk, since there are lots of recipes for it in the Vita Mix info. I am trying now to decide whether or not to keep it or not, as want to make soups in it also, so still digesting all of this.

I am going to make an appt w/ my Dr. & see if he will use enterolab, or if I have to do it myself. Would sure take hours off the process of trying to figure it out, not to mention not having to buy things that I won't be able to tolerate, one way or the other, I plan to use Enterolab. If it takes too long to get into the Dr. & find out, will just go ahead & make arrangements w/ them myself. Makes sense to me.

Am wondering if anyone has the recipe book titled Gluten- Free Girl and the Chef: A Love Story with 100 Tempting Reciipes. The article about these two people was in a supplement to our Weds. paper this week & I just happend on it. May be a another book people may want if not already known about.

I'm beginning to appreciate every one of you already.

[quote][/quote]

[Kari]

Lulu - your quote about adjusting the sails reminds me of another great one that was on here recently:

"Life is not about waiting for the storm to pass, it is about learning to dance in the rain".

Love,
Kari

[lulu]

yes, Kari, have seen that one. Neat, huh? One of these days, I'll be more proficient w/ these posts. I just put part of a post in a quote. Have no idea what I did, but oh well. My quote just suits me right now.

[tex]

Lulu,

In case you can't find a GF, DF cornbread recipe in Dee's Kitchen, http://www.perskyfarms.com/phpBB2/viewforum.php?f=7 , I posted one in the thread below, (it's just a way to modify the recipe on a bag of Aunt Jemima Corn Meal, but it works fine, and it's in post number 6, I believe).

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12693

Incidentally, whenever you write a response, it's automatically going to fall into the thread according to the time when you submit it, (IOW, all responses are automatically sequenced according to the clock).

Tex

[lulu]

Will follow that link Tex. Bet you can't eat beans either? That part is killing me too. Naturally, I thought someone fr. Texas would be a good cornbread person, too. I have a killer recipe for it & loved it, as some of us think it's better from scratch & also w/ white only stone ground meal from a local mill, War Eagle Mills (if have time, go to their website, it's a beautiful place on War Eagle River & home of our historical craft fairs, or one of them), that we have just outside of town aways, but it's also good w/ yellow meal. It's a sin to us to eat cornbread w/ sugar also. Guess that makes us cornbread eletists, we've been so particular about it. We use a recipe an older fellow member of a club we have, uses. Our governor ate w/ us one night at a fund raiser & said it was the best dang cornbread he'd ever had & he had to find Tennie & tell her so. So....will find one I can eat & make myself happy w/ it or learn how to adjust the other recipe. Won't be the same w/o the beans though, but like it w/ almost anything. That & italian type breads are my favorite breads.

Ok, hoping to learn about the replies. Thanks. Am learning more here than I ever thought possible.

[Linda in BC]

Dear Lulu; I am a little late in welcoming you but WELCOME!

I tried coconut milk..made a delicious caramel sauce from a recipe in Dee's kitchen that took two hours to reduce and when I ate it it made me very sick!!! so just wanted to let you know that some people can't eat it .... so don't buy a whole case until you find out if you can! We are all so different tho in what we can and cannot eat. But one thing that seems to be constant is that when you finally do figure out that last thing you are intolerant of, you really do start to get better. It is miracle!!

Again welcome! You have had really rough go of it and I wish you all success in looking after your health and getting better.
Linda

[MBombardier]

Hi Lulu! I'm late chiming in here to welcome you, but it's a warm welcome, anyway.

FWIW, I love our VitaMix. We'd had it for many years, and use it for everything from making nut butter, to powdering sugar, to meat spreads. Tonight we used it to make breading for chicken. I used to make a smoothie every day in it, but I've had to cut out fiber, so I'm not doing that right now. When things settle down around here someday, I figure out what I can use to do that again. I can understand your taking the VitaMix back (it's an expensive machine, especially if you are not using it much) but you can make everything from soup to ice cream.

[lulu]

Thanks for the welcome. Can't believe how much I learn from each one of you. Going to be a trial & error as I thought, but so nice to be able not to go through all of this alone. I must confess that I broke down tonight after doing so well today, not eating anything that I thought I shouldn't, anyway. I ate some almond butter on a few cheezits I had left in the pantry, along w/ apple butter, so did have a bit of D about 30 min. later, but not much or like I usually have. I have just been sooo hungry, as been having the D lately about 6-8 x daily, and wondering what i can find to snack on when I get this way. Guess I should've just eaten a bit more of my GF dinner, which seemed to work. Boy, this takes lots of willpower. I usually have it when it comes to food, but lately being so empty feeling in my tummy & so skinny, have been so extra hungry.

I didn't list a couple of other ailments I have, but don't think they would be important to the MC. Small fiber peripheral Neuropathy, which they say is idiopathic, as never did find a cause for mine, but it's not really bad except for the numbness of the end of my fingers, which makes me drop lots of things..the pain is nothing compared to the large fiber kind, from what I hear. Then some Osteoporosis & partial herniaton of disc in neck, & bronchitis. I did read something tonight on here about Vit. B., which reminded me of the neuro. Am wondering if anyone's had any experience w/ taking it in liquid form? Am also so extremely cold blooded, looking into that also....iodine, etc, anything to help, as it makes me miserable in winter. One day at a time & one malady at a time, I guess. Just impatient I think, to learn more, since I've dealt w/ other things for so long, fnally ready to try to get better. I know it will come.

[Bifcus16]

Lulu wrote:

wondering what i can find to snack on when I get this way

Rice and protein are your friends.

Boil a big pot of white rice until it is overcooked and porridge like (up to 30 minutes or more). Don't use too much water so you don't need to drain it. Just add extra water as it goes if it is getting too dry. Put a serve of rice in a bowl and stir in a big spoonful of honey. Eat. Repeat. Very comforting and filling. Add ground cinnamon if desired (it's a yummy antiparasitic).

For variation, try maple syrup, golden syrup, even jam etc. Or do a savoury version by cooking with chicken stock and serve with some cooked chicken and flavours of your choice - I like sesame oil, any favourite herb would work.

Do a big pot of rice, so you can just microwave a bowl when you need it.

Get some rice cakes. Check out your local stores, but they should have a range from the thick rice cakes to thin little japanese style rice crackers. These are great to top with whatever you fancy. Nut butter is great if you can cope with it, otherwise try jam. Avocado can work well.

Protein is very good at stopping hunger. There is nothing wrong with snacking on a piece of cold meat. But you probably aren't used to doing so. Cook up some chicken (or you US folks might prefer turkey) and keep it cold in the fridge. Either snack on it alone, or slice it onto your rice crackers

Eggs are another great protein source. Nothing wrong with breaking an egg or two into a bowl, scrambling with some water and cooking wither in a pan or in the microwave. Add previously cooked vegies if you are organised enough. Your snacking choices suggest you may crave salt. So choosing a savoury snack may suit you well.

Cooked fruit is another good choice.

Then you can move onto cooking muffins etc and keeping them on hand. Buy some GF bread. You might find it helpful to have lots of safe things available, so you feel less tempted to try something that will irritate you.


Lyn

[lulu]

Thx Bifcus. I'd thought of getting rice cakes. Haven't had any of those for yrs. Yes, I do crave salty things...always have. Am snowed in, so can't easily get to store yet for stuff like that, so will keep the rice in mind.

When the snow is over, plan on going on a hunt for bread. You had some good suggestions. A whole new thought process about food, huh? At least there's so many more choices than when my daughter was on this when little. We had many rice cakes then. She seemed to outgrow it or her gut just healed, not sure, much later, & bet she never looks at a rice cake now. Will have to ask her.

[tex]

Lulu,

Lyn made some excellent suggestions, so I'll address another subject in your post, small fiber peripheral neuropathy. I happen to have that condition myself, so I'm very familiar with it. The neurologists that I've seen, can't figure out why I have it either, and the first one even diagnosed me with Parkinson's disease, because of the peripheral neuropathy and associated balance issues. I have no doubt that my peripheral neuropathy was caused by years of years of gluten damage to my brain and central nervous system. I managed to convince the last neurologist that examined me, that I don't have Parkinson's, but so far, none of the neurologists that I've seen, are even aware of the existence of a gluten connection with neurological issues. Shame on them.

I don't know if this would work for you, or if your doctor would even prescribe it, but I take a product called Metanx, which is a combination of megadoses of vitamins B-12, B-9, and B-6. The peripheral neuropathy was so bad in my lower legs and feet, that not only did I no longer have the ability to properly sense pain, heat, cold, etc., but my reflexes were shot, from my knees on down. After taking Metanx daily, for 8 or 9 months, my reflexes were pretty good again, and I could feel a pinprick almost anywhere. Since then, I haven't made much additional progress, so this may be as good as it will get, but at least it's better than it was. I still have basically the same risk that diabetics face, of not noticing injuries that might be serious enough to end up requiring amputation, but I try to remember to inspect my feet regularly, to make sure that everything seems to be in order. My hands are not perfect, but they're much better off than my feet, though my arms and hands do seem to fall asleep way more often than they should, (IOW, that numb, tingly feeling), but at least they usually "wake up" reasonably soon, if I shift positions. I just wish I had known about Metanx years ago, before the damage became permanent.

Interestingly, my doctor didn't have any qualms about prescribing Metanx, because he has been taking it himself, for years, to improve his memory, cognition, etc. He's well up in his 70s, and still practicing.

In case you're totally unfamiliar with the neurological effects of gluten, the following references describe the basics of the problem.

http://www.ncbi.nlm.nih.gov/pubmed/19845007

http://www.ncbi.nlm.nih.gov/pubmed/18825674

You have to register in order to read the full text of the following article, but it is an excellent reference, written by the leading researcher in this field, Dr. Hadjivassiliou. In case you don't want to register there, the second link below, should allow you to read the abstract, without registering:

http://jnnp.bmj.com/content/72/5/560.full

http://jnnp.bmj.com/content/72/5/560.extract

Tex

[lulu]

Gosh, Tex, what a find. I will certainly look into that. I had to change Neuro Dr's because of my ins. & believe it or not, my former Neuro. Dr. had lost ALL of my files, my diag., the MRI, everything, so when I saw this new one, it's been a yr. or two ago, he said since I wouldn't take the pain meds (can't recall the name of it, but was the one they give for epilepsy, which I don't have & I refused it, as read where people didn't even know where they were when on it), that he didn't need to see me regularly & to call him if there was any change. He did say after I refused that pain med that he didn't blame me. So I haven't seen him since. I'll try calling to see if he'll prescribe that, as he did tell me to take a Vit. B of some kind, so I got a liquid from the pharmacy & haven't been taking it regularly. My feet are so cold all the time, & numb too, but I notice my hands worse, as drop so many things. With Osteoarthritis & the neuropathy, I get pretty impatient in the kitchen w/ my hands/fingers sometimes. I will read the links you sent tonight, that sounds pretty interesting. Am glad I listed the other conditions, as have learned that sometimes they're all related. Think I forgot to mention the arthr. & also Fibromyalgia. We never know how things are linked, I guess. Thanks again, I truly appreciate all of this knowledge. [quote][/quote]

[TooManyHats]

If anyone is interested, read up on what gluten can do to a child with autism. The neurological effects are incredible. It's like opioids to them. It activates all the neurological issues in the brain and exacerbates the autism. This doesn't happen to all children with autism, but a good percentage of them.

[tex]

Lulu,

Yep, the only time my feet are warm, is in the summertime. During the winter, I use an electric blanket, but I fold it over my feet, and bring the top layer up to just above my knees. It works great.

Your GP should be willing to prescribe the Metanx. The first neurologist gave me a sample box full of Metanx samples, (12 bottles of 6 tablets each), because he was cleaning out his office, and preparing to move, but when I ran out, and I asked him about a prescription, he said to just ask my GP for a prescription.

When I asked my GP what he thought about using it for peripheral neuropathy, he said that he had been taking it for years, himself, for memory and cognitive enhancement. It's only vitamins, so there's no real reason why a doctor should refuse to write a prescription for it. One of the problems is that it's not covered by insurance, so it costs about $38 per month, (that's taking one tablet per day - according to the label, you can take one or two).

Tex