luvs2eat

I've been watching this thread w/ interest too! There's no Udi's bread anywhere near me and the ordering/shipping costs are keeping me from trying this "wonder" bread as everyone describes it! Major thanks to all you scientists!!

It just further confirms what I tell people all the time. Celiac disease just makes one have to learn to cook differently! We (YOU) can recreate almost anything!!

My 27-year-old daughter was diagnosed by endoscopy biopsy last fall (I was diagnosed about 9 years ago and her older sister about 5 years ago). Her symptoms were the usual in our family... severe GI distress, etc., but hers have escalated dramatically to include mouth ulcers, skin rashes, and other things. She's cut dairy and grains out of her diet and is living on about 3-4 kinds of protein (turkey, chicken, shrimp) and about 5 veggies. One doctor thought she might have interstitial cystitis, so she cut out all the foods that make that worse. Her primary care doc sent her to an allergist and everything except the obvious gluten issues came up negative. She was sent back to her GI doc who had her in tears.

When he found out she'd been doing internet research (and who doesn't when they're trying to figure out what the heck is going on???) he said, "Oh great... you've been doing internet research. Why don't YOU tell ME what you have??" DD burst into tears and said she's just trying to learn more! She'd actually wondered if she wasn't suffering leaky gut... she seems to have all the symptoms people have listed there.

He told her she should not cut grains out of her diet and that rice is fine and quinoa should be eaten too. EVEN IF THOSE TWO THINGS CAUSE ALMOST IMMEDIATE DISTRESS??

He practically accused her of doctor shopping... okay, he said, she's lost weight (like 25 lbs. in 3 months), but she's being too dramatic, he said. Damn good thing I wasn't with her... I'd have kneed him you know where.

Now I understand better why people aren't diagnosed for years and years... and WHO wants to be crapping 10 times a day???

In my own research on this (awesome) board, I've sent her the contact info for Dr. Char Glenn in Portland, who seems to be a really good doctor. Other than that... I want her to fly to NYC to see Dr. Green!!

Whew... rant over. I feel better... thanks!

I saw those... and some from another company on here. They are SO pricey!! THREE handmade matzohs for $23??? The other company's are more than $2.00 PER matzoh! I've missed matzoh... but will have to miss it for a while longer, I fear!

My celiac daughter lives in South Philly. She just told me about a group of celiacs she found on meetup.com. They'd planned an appetizer party, but it had to be postponed because of all the snow you got! I'll see if I can get more info from her. She was completely psyched to meet up with fellow celiacs and spend an evening w/ yummy food she didn't have to scrutinize!

Edited to add... talked to my DD, who told me it is meetup.com and the group is Philadelphia Gluten Free Potlucks. Sounds like fun!!

I've been gluten free for more than 7 years and have finally come to the conclusion that my body has recently decided it has no more use for alcohol! I love a glass (or 3) of red or white wine or an ice cold vodka and tonic w/ extra lime or a very dirty martini or a frosty frozen peach margarita ... but the repercussions (urgent and explosive) the next morning are just not worth it anymore!

Anyone else had to give up all booze??

My tastes have totally changed over the years I've been gluten free. I don't bake much anymore... can't reconcile myself to the cookies and the flavor of cakes we can have. I want crunchy chips way more than candy/cookies anymore.

I've had several episodes in my life of flashing lights... sort of in a circle. The first time I had it I was in a grocery store and I kept blinking my eyes to see if it would go away. I wondered if it might be an "aura" and I was going to have a seizure or something!! About 20 min. later, the circle of flashing had reduced to maybe 1/4 of a circle. I ended up going to my ophthalmologist, who asked me if I'd experienced a wicked headache afterward? I hadn't. He told me it was an ophthalmic migraine... w/ no headache. I've had it maybe twice since that first time... in about 15 years.

Welcome! I love it here. You can find an answer to ANY question you ever had!!

My daughter was a vegetarian for many years... not for moral reasons... just because she didn't like meat. When she was diagnosed with celiac, she went back to meat cause she was afraid she wasn't getting the protein she needed. She was surprised to find how much she liked it and missed it!

Does dairy bother you too? Cause there are sour creams on the market that are gluten free.

Again... welcome!!

It sure can!!

I've been gluten free for years... and just recently, I've been reacting to everything it seems! I've cut myself back to only fresh foods... mainly lean meats, fruits and veggies. I'm wondering if my body isn't finally rebelling against all the carbs and grains (albeit gluten free ones) I am totally addicted to!! I'm taking a break from them for a while and have noticed improvement already!

I did "real" fried chicken using the flour blend I usually use (Analise Robert's mix of brown rice flour, potato starch, and tapioca flour), but we prefer soaking it in buttermilk and then dipping it in crushed Doritos Cool Ranch chips w/ a little taco seasoning added and baking it. It's delish!

Poultry seasoning is really just a mix of several different spices and should be gluten-free. What does the label say?

I just googled gluten free puff pastry the other day and was intrigued by the recipes there. I vowed to try it soon!! One post had photos that really made it appear doable!! I don't see any companies in the States.

  On 2/16/2010 at 5:14 PM, tarnalberry said:

Clearly, there is some ... misleading or misinforming going on here. If the donors are on a gluten free diet, they're not going to have high levels (unless they've got refractory sprue).

And the POSSIBILITY of being accepted and MAYBE earning up to $500 is not NEARLY enough to make me eat gluten so my antibody numbers are up!

Here is the response I received when I emailed explaining that my last blood work showed normal levels of antibodies because I was keeping a gluten free diet:

"Thank you for the information you have provided below. Given this information, unfortunately you would not be a suitable candidate for our programs. I am happy to hear that staying gluten free but the donors in our programs are also on a gluten free diet, but they still have very high levels for Celiac. Not everyone qualifies for our programs because everybody has a different immune system.

We do thank you for your interest in the programs and wish you the best."

I signed up and received an email today asking for my latest bloodwork showing antibodies. The last time I had them done (actually only the second time... first time, before going gluten free, they were off the charts), they were completely w/in normal limits... cause I was gluten free!!

I'll email them back and tell them that... but I don't expect to hear much from them again. Weird.

Chilis now has a gluten free menu... it's mostly stuff they already offer, minus the bun, etc. We've eaten there several times and ALWAYS make friends w/ our server and explain my issues carefully. I've never had a problem.

Open Original Shared Link

The gluten free/allergy menu is on the left at the bottom.

I love corn and rice chex... and any cereal that's not so sweet (can't stand fruity pebbles)... but I have to stay away from cereal because I have no willpower whatsoever when it comes to portion control. I can eat 10 times the recommended portion for a serving!!

I don't have access to Whole Foods (or Trader Joes or ANY stores that carry neat gluten-free stuff), so I order Pamela's bread mix from Amazon. I also order my Tinkyada pasta from there too. Ordering both at the same time makes shipping FREE! I know you can order Udi's bread, but I hear it's expensive!

A loaf of Pamela's bread makes awesome sandwiches. I toast the bread first and sammies hold together (you know what I'm talking about if you've tried to make a sandwich w/ a lot of gluten-free breads... they totally crumble!). I usuallly slice and package the bread in 2 slice packages and freeze 'em. You can also use the mix to make some pretty good bagels.

Nut Thin crackers are good. Before those, I always used the Chinese rice crackers usually available in most regular groceries.

Keeping to a gluten free diet is hardest for those who don't cook or don't like to cook and those who eat out a lot... cause eating out is difficult. Plus, the stuff you can order online is pricey. That's why you have to embrace cooking. If you do... then the diet is not hard... challenging sometimes, but not hard.

And you know you HAVE to stick to the diet... difficult or not. It's the only treatment and the only thing that will make you feel better and allow your body to heal.

Just learning how to cook a little differently, you can have:

Meats

Veggies

Fruits

Rice/other grains

Pancakes/waffles

cookies/cakes/bread

... and just about anything else you want. If you google "gluten free anything" you can find a recipe for just about anything! What ya can't have is prepackaged junk food. Ya just can't.

Good luck!!

My husband's son used it and it REALLY helped his acne and surely prevented more scarring. It is a scary drug because of the serious side effects, but it's a miracle one for kids w/ bad acne.

AND as more people learn about us and our issues, new and better breads and things like that will come out and restaurants will "GET" it and we'll be able to do lots more stuff!

I packed my lunch every day. I either made a sandwich w/ my gluten-free bread and took some chips and an apple, or I took leftovers from last night's supper and nuked it at work (in glass containers only!).

I was diagnosed by blood tests. My doc told me my levels were so high, he didn't see a need for biopsy unless eating gluten free didn't help my digestive symptoms. I started researching online and by the time the dietary nutritionist from the hospital got back to me, she said I had way more info on celiac than she did!!

I only wish I'd found THIS place sooner!! Here is where you can find an answer to ANY question.

Actually... looking back on it, she had the IC symptoms before the celiac ones. She had a uterine cyst removed and thought that would be the end to her pelvic pain. It was at that time she was diagnosed w/ celiac and she went immediately and pretty easily gluten-free. The pelvic pain continued and, in researching IC, she could put a face to the almost instant pelvic pain she experienced after drinking OJ.

Even if she doesn't have IC... the gyno/uro doc told her to keep to the IC diet, which she's trying hard to do, until physical therapy can retrain her bladder. It's really getting her down as she comes to terms w/ having to always eat at home and/or have her own food w/ her at all times.

The celiac disease she wasn't upset about ... she's been dealing w/ my ceilac and my middle daughter's for years ... and she lives in Portland, where there are fabulous gluten free bakeries and restaurants. But the pelvic pain and the feeling that her bladder wasn't emptying completely led her to a diagnosis of IC. She's now really bummed, cause an IC diet makes a gluten-free diet look like a piece of cake.

She ended up at a gyno/urology specialist who completely pooh-poohed an IC diagnosis. She told her that the information she found on the internet was simply sites looking for donations! (I told her that if her IC could be cured... she'd happily give them $$!!)

Anyhow... she was so upset. There aren't specialists after this highly specialized doctor and she felt blown off and dismissed!

Luckily, the doctor prescribed physical therapy and she found herself w/ an awesome woman who believes she can absolutely help her and had all sorts of really good naturopathic ideas. She's still following the IC eating regimen and is, at least, more encouraged.

I've seen IC discussions on the board. Any IC sufferers out there who can give me words of encouragement I can pass along?

My husband and I are starting to eat Paleo. I've been having consistent intestinal distress even tho I've been gluten free for years. We're eating meat, veggies, and fruit for better health reasons and because I'm thinking that the carbs I love so much and maybe dairy are part of my intestinal woes.

I'm assuming the good fiber will help my loose bowels rather than make them worse. Can anyone on the Paleo diet tell me of their experiences in giving up grains and carbs?

Missing bread was/is one of my biggest woes... baking homemade bread was one of my greatest joys. My second greatest joy was EATING it!! I will still take a piece of good bread and take a good long "wiff" of it's wonderful aroma!

The bread mixes are pricey, but I order Pamela's (the best I've found... I make it into loaves, rolls, and even bagels!) from Amazon. They ship 6 mixes and by ordering in bulk, they're cheaper than buying in stores. The same goes for Tinyada pastas that I also order. (Amazon's having good sales on gluten-free food right now!) You only have to spend $25 and shipping is FREE!

My local (and only) healthfood store asked me if there were any gluten-free products they could order and carry for me and I had to tell the really nice guy that ordering from Amazon was a lot cheaper than the prices he'd have to charge, so I'll keep ordering!!