queenofhearts

I've heard that recovery time depends greatly on how long one has gone undiagnosed. The more damage to the villi, deficiency issues, &c., the more the body has to do to heal. You have barely begun-- not to discourage you, but it will take a while to achieve optimum health. The good news is that if you are careful & patient, you will continue to feel better & better...

Welcome to the board... this is a great place to come if you feel your resolve wavering or your patience strained-- lots of encouragement along with vital information.

If I were you I would definitely take a look at Nini's newbie kit-- it will help you avoid some common hidden sources of gluten that can hinder full recovery.

Leah

Nini's address is Open Original Shared Link The newbie link is at the bottom of the page.

I have heard about melatonin several times as an option as far as helping yourself have a restful sleep but never really knew if it would work or not. The funny thing is that right before I read this....a lady I work with mentioned that she takes melatonin & it works wonders.

It really helped both my son & my grandmother when they had insomnia issues. One caution-- it takes a while to work because it is "resetting" your body clock-- it doesn't cause immediate drowsiness but helps your body do its normal sleep pattern thing. So don't give up if it doesn't help right away.

Leah

I've been curious about this too. Was offered some Blenheim's, a super-hot ginger ale from SC. But the label includes good ol' natural flavors. E-mailed the company but who knows when they'll reply. Anybody know about this one?

Leah

Lighteningfoot,

Hi! I don't know if you're interested, but, I make my own fruit "concoctions", like jams and syrups. I take fresh fruit- blueberries (yum!), strawberries or cherries, add a little sugar or sucanat and simmer on stove 'til boiled down to jam-like consistency or like syrup. I also add a teaspoon of my own homemade vanilla (3 vanilla beans in skinny jar of brandy for 3 weeks) for extra panache. Very tasty by the spoonful or, I imagine, on ice cream or pancakes! And easy!

lisa

I like fruit syrups too. A super easy one is to take real apple cider (the kind that comes fresh in the fall) & simmer it down to a syrupy consistancy. So yummy! But I love maple syrup too. And being a southern girl there are times when only molasses will do!

Leah

Just found out that the NIH is implementing a new Celiac awareness program. We all know how slow they are. But still it's something. I can't get the link to work but you can go to www.nih.gov and then type in Celiac disease and you'll see they latest findings.

This is truly heartening news! If they really do follow through on the publicity, it should make it much easier for us to get our point across to companies. We could include the website in communications to the companies, & it should help a lot with our credibility. The thing that pleased me most about their info is that it emphasized that THE SLIGHTEST AMOUNT of gluten is unsafe. Even my relatives find that hard to believe! It's nice to have confirmation from the government!

By the way, I tried to sign up for their e-newsletter without success, but I'm hoping they're just flooded at the moment.

Leah

I've heard of the rice. I have also seen a saltine cracker in the shakers in some of the mom and pop cafe's. Always have to be on our toes

-Jessica

Oho-- now that makes a little more sense. Maybe that's how the flour gets in. Jeez, I never thought to check for crackers in the shakers-- it's enough to drive you crackers!

Leah

I got the news this morning-- what a fantastic thing this will be for all the hidden Celiacs, AND for us because it should influence manufacturers & retailers as well. Here's the site:

Open Original Shared Link

Leah

You could very well be Celiac from the symptoms you describe.

Congratulations on figuring it out for yourself! For some reason doctors just don't seem very clued-in about this disease. You might want to be tested now, though, before going gluten-free, because it you have been without gluten for long, the tests aren't accurate.

Believe me, this forum is the most fabulous resource you will ever find on celiac disease, as you have probably already discovered-- you'll find lots of info & moral support here. Welcome!

Leah

I really like the molasses and sesame seed version - nutty, not too sweet, really good texture (usually).

Good luck!

Ditto on this one for me! I make mine substituting molasses for all the sugar (not just adding some with the wet ingredients) & I use the extra egg yolk to do an egg wash on top, topped with lots more sesame seeds. I like to use a mixture of black & white sesame seeds just for visual appeal.

I also like Carol Fenster's fake cracked wheat bread, made with brown rice chopped in the blender. I like breads with some crunchy ingredients, expecially gluten-free ones, since they tend to be a bit lacking in textural satisfaction.

Leah

You know, I really do think we need to organize somehow. It's a tough battle though.

My MIL is active with the Farmworkers' Union, & they boycotted Campbells for many many years. I don't think the company ever changed their ways significantly. But recently a boycott of Mt. Olive pickles resulted in changes to their labor standards, so clearly boycotts can work.

I must say there was a huge nationwide organizing campaign involving numerous church groups, solidarity with other labor organizations, publicity campaigns including all media, &c. It's a tall order for our bunch to match that effort. Is there anyone here with a PR specialty?

Leah

Queenofhearts,

I'm in the same banana boat you are! Very allergic to them, also allergic to avacado and Laytex. (They have the same protein)... I kept trying bananas too, I love the way they smell and taste but good googly moogly they don't like me

It must not be the protein with me because I can eat a barrel of guacamole-- it's one of my favorite comfort foods. But it's kind of reassuring to know I'm not the only banana-hater in the world! Everyone in my family is crazy about them, & they are continually amazed that I dislike them since I love fruit so much. But it sounds like several folks on this board share my feelings-- when I see them I always say "Them thangs is p'izin!"

Leah

In my research and writing my blogg I found out the in the 20s - 30s and 40s babies with celiac disease were fed bananas. Lots and lots of bananas and they helped ward off celiac disease until they were adults when they called it Non-Tropical or Tropial-Sprue.

Good thing I wasn't diagnosed back then, or I'd surely have died!

According to the Canadian Celiac Association, black and white pepper are gluten free. This refers to pepper purchased as such, or present as an ingredient in another food.

The supposed risk comes from the claim that some restaurants add flour to the pepper in the shakers on the table to prevent sticking. I have heard that story, but don't know if there is any truth to it.

That's a new one-- but in my family, growing up in steamy North Carolina with no air conditioning, we always put a few grains of rice in the saltshaker to absorb the moisture & keep the salt from caking. Flour doesn't sound very practical to me as it would have the same issues of getting sticky & clogging the shaker... but I guess you never know.

Leah

Hi

Thanks for your input! I thought it was my gallbladder too at first, but then when I didn't eat wheat or oats, I didn't have the gas/pain/pressure problem. I figured if it was my gallbladder, I'd have the pain with everything I ate if it was malfunctioning.

I did have a blood test for standard allergies to eggs, wheat, soy, milk. All came back negative. That's why I was surprised. Funny thing is I was allergic to milk as a baby and outgrew it. I thought at least the milk would have shown up iffy.

I saw the lab that does stool testing, but the cost is huge. I might just eliminate wheat and oats to see how I feel myself.

Don't forget to avoid barley & rye as well if you want to be gluten-free. Good luck!

Leah

The ingredients you list are fine, but some curry powders (especially the cheap ones) have starch as an extender or something, hence the warning. Enjoy your curry!

Leah

I thought bananas were binding and good for "D"?

Not for me! I always disliked bananas & avoided eating them. Even the smell put me off. A few years ago I decided I should learn to like them since they're so good for you. I managed to eat about half of one, then had stomach cramps & violent diarrhea. Tried again, 2 years later, same result. Decided that I had a reason to dislike them, though I had never known they disagreed with me when I was young-- must have had the experience before I really was conscious of it, & the dislike got hardwired! It's really weird because I really love fruit & can eat almost any variety without distress. And bananas are supposed to be super-digestible. Go figure!

Leah

Poor Suzie, that's really a triple-whammy! For me the PMS stuff is enough to send me to the depths. I tend to wake up in the middle of the night about 2 days before my period, completely convinced that everything I have ever done has been a horrible mistake & I've ruined the lives of everyone I know. The feeling is overwhelming & very convincing, & has absolutely nothing to do with what is actually going on in my life at the time-- I can be doing great the day before & then BOOM. Over the years I've learned enough to tell myself, "these are the hormones talking." But at the time, even when I say it, I don't believe it! Still, the experience of coming out of this state & surviving, month after month, has given my conscious mind just enough power to talk myself out of taking any action when I'm in this state. It's really rather scary though, how utterly awful I feel. I've been on antidepressants in the past, & they dulled the intensity of the feelings, but didn't eliminate them totally. Coming off of the meds was a bit of a rebound problem, but in my case it passed very quickly. Hope it does the same for you. Hang in there!

Leah

Oh I know. I've actually only eaten chicken so far, and I started out very small and built up. I really only want one bite of the bacon. I take a full spectrum digestive enzyme that I think covers meat stuff, so that should help. PLUS, I LOVE the fermented veggies - the raw sauerkraut - that is supposed to help digest meat too. I think I'm alright. I know what you mean though. I had to pick up Burger King for my husband and friend last night who were working late getting our rental ready to put up for sale, and it was the first time since I was dx'd that I thought, "why can't I just be a regular person" and get a hamburgler every now and again.

Boo hoo.

I know, I'm healthier than that. But on rare occassion, boo hoo.

I was a strict vegetarian for 14 years; now I eat fish & chicken but still only occasionally. I can't abide the sight or smell of beef or pork EXCEPT for bacon, which has always smelled delicious to me, even when I wouldn't eat it-- I really don't understand it at all! I consider bacon, something like anchovies, as more a flavoring element than an actual food. In tiny quantities I can tolerate it but wouldn't even try making it a major part of the meal. I like just a bit in a quiche or omelette, that sort of thing. Or in a dish of braised greens & garlic. I still would recommend using only the natural stuff; after all if you are only using a little it's affordable!

Leah

Not bad at all, but I must say I miss dark beer... it was always my favorite. Haven't seen any gluten-free dark out there.

Leah

I think to be safe you'd have to check with the chef. Traditionally it doesn't have gluten in it, but restaurants do a lot of odd things to keep foods stable longer that can get us into trouble.

Leah

You just can't make dough with the same handling characteristics as gluten dough, so those flaky layers won't happen.

Rats! I was afraid of that. Oh well...

Make a big plate of tinkyada pasta - you won't even notice it's not gluten-free.

You can make virtually ANYTHING gluten free (about the only things that are really really hard are pastries - like croissants).

Just curious-- do you mean they are harder to make gluten-free than the wheat kind, or just hard in general? I haven't tried gluten-free puff pastry yet, but I have made the traditional kind-- is it just not worth the effort to try gluten-free?

By the way I did make some gluten-free creampuffs & they were fine-- didn't keep as well as the wheat kind, though.

Leah

I don't know yet, really, because after 6 weeks gluten-free I'm still symptomatic. I don't know if I'm being cc'd, or if it is just taking a long time to heal as I have been undiagnosed for many years. I've tried hard to eliminate cc but in a house with 3 gluten-eaters, two of whom are teenagers, it's hard to be sure.

Leah

Toasters are notorious for c.c. because they are so hard to clean-- impossible really. But I share a toaster oven with my gluten-eating family, which is safer since crumbs drop to the bottom, & you can remove the rack & clean it. The thing is, you don't really know how sensitive you are until you are really healed, because the baseline damage can hide the reaction. So it's a good idea to play it super-safe until you find out.

Leah

I'll try to get some to you but right now I need to get cooking! In the meantime, here's a great link for gluten-free recipes:

Open Original Shared Link

Bon Appetit!

Leah

Is it possible to be as old as I am (51) and have made it this far without knowing it's Celiac?

Ivy

Oh, it is so very possible. I've had symptoms since childhood & was diagnosed the week before my 50th birthday (by biopsy). Why no-one connected the dots before, I'm not sure, but it was elevated liver functions that finally caused my primary physician to send me to the specialist who figured it out.

Unfortunately, it takes a long time for people our age to heal from the damage done over many years, but at least we can look forward to a healthier old age!!!

Leah