queenofhearts

It definitely sounds like you could have celiac disease. I would stay on the diet for awhile if I were you. Like someone else said though, it can be harder without a firm diagnoses, but not impossible. If it makes you sick when you eat it after being gluten free then you won't want to repeat that scenerio all the time. I had borderline blood results and it has taken me a year to figure it all out and I am finally feeling 100% great. It takes awhile to figure everything out. My son also has celiac and he is two. You may want to find a good doctor that will test you.

Leah,

That sounds alot like me too. Friends didn't realize I was sick and I thought it was just my lot in life to struggle and be fatigued all the time. It is easy to be gluten free when you feel great and it is improving your health dramatically. SO happy you finally know what you were suffering with for so many years. My mom is 55 and I want her to be tested, but she swears since she doesn't have D she doesn't have it. She has had C for years and always had lower energy then most people, seems up and down emotionally, etc.

So far she hasn't found a doctor to test her and she isn't persuing it. Very frustrating.

Monica

It's so great to hear the success stories, really gives me so much hope! You mention your mom-- I strongly suspect my sister is Celiac but when I brought up the subject she was NOT interested in following up on it! It's odd because she's had other food issues, had chronic yeast for a while & ate a very limited diet for that. Maybe she just can't face more restrictions.

I'm curious-- were you diagnosed first or your son? Maybe pediatricians are a bit more tuned in to Celiac. But thinking back, I am sure I had it even as a kid, & nobody brought it up that I know of. (Haven't grilled my mom on that one-- I don't want to make her feel too guilty if doctors did mention it.)

Leah

I hope all goes well. This happened to me once & we never did find out what set it off. Terrible hives all over & my eyes swelled the size of tennis balls & turned red as beets. My throat felt hot & tight too. It's a pretty scary feeling.

The hives lasted for a good while after the reaction is controlled, but in my case they did not return. Hope the same is true for you!

This was long before I was diagnosed... now I wonder if gluten was involved.

Hope you feel better soon.

Leah

Im wondering if anyone knows if creme fraiche is gluten free?

Also I'd LOVE some tips on gluten free veggie dips. My daughter is turning 3 on Sunday and we want to

have a completely gluten free party!!

Thanks

If the creme fraiche is real, it is gluten free, but I'd still look at the label if it's a commercial product in case of stealth stabilizers, &c.

You can make your own creme fraiche-- it tastes even better than the commercial kind & you'll know it's safe:

One Cup Heavy Cream

1 Tablespoon Buttermilk

(I Tablespoon Sugar- Optional)

Combine the Cream & Buttermilk in a jar with a tight-fitting lid & put it in a warm spot, as you would with yeast dough. Let it sit for 12 to 24 hours. Ultrapasteurized cream may take longer. It should be thick but still pourable. Flavor as desired & chill. Whisk lightly when ready to use. Oh so yummy!

If you are in too much of a hurry for "home brew" you can also approximate it:

One cup heavy cream

1/4 cup sour cream

(1 Tablespoon sugar)

Whisk together until soft peaks form.

Ironically, I had a bottle of the 500mg NatureMade chewable vitamin C cc704 on the table behind me while reading this post. Printed on the bottle "No chemical solvents, yeast, or gluten".

Hmmmm... that does give one pause. Thought I'd found the one honest company... now I don't know what to think! Sigh.

here's an email i got from Laney, who places the wine/beer orders at Fowler's, a gourmet cafe/grocery at Brightleaf Square in Durham, NC. FINALLY!!!!!

paula

------------------------------------------------------------------------------------------

Hey Guys! I'm excited to introduce a new brewery that I've been waiting for a long time to come to NC. One brew, GLUTEN-FREE, and great!! Lake Front Brewery!!!

Hi Paula,

I'm off alcohol until my liver enzymes get back to normal (newly diagnosed) but I live in Raleigh & would love to know any other local tips you might have to offer!

Nice to know I'm not alone here!

Thanks,

Leah

Hi Melodi,

I can definitely relate to the decades of misdiagnosis (I'm 50!), though my symptoms were a little different. I'd go ahead & get biopsied by a good GI specialist if I were you, since I think most people take that kind of diagnosis more seriously. Even though my family & friends are basically supportive, some seem to think I'm being a bit extreme in my gluten avoidance. (Worrying about cross-contamination, starch in my aspirin, &c.) It really helps to have an "official" diagnosis, in my case.

One strange thing I've noticed... I've always hated to talk about my ill health, always dreaded coming off as a whiner or a wimp, so I spent many years just not mentioning my aches & pains, chronic diarrhea, fatigue, anemia, miserable periods, brain fog... the list goes on... trying to be a good sport about what I thought was just my lot in life. So now that I finally have an answer & hope for true well-being, a lot of folks seem to be thinking, "but you weren't even sick!" They seem to think I'm giving up all the delicious things I love, carefree eating out, easy, cheap grocery shopping, food sponteneity-- just for the heck of it!?! They don't understand what an incredible blessing it is to have hope at last!

I'm only 2 weeks into the diet & have made some mistakes with meds & supplements, licking envelopes, &c., so I'm still symptomatic, but whenever I think that I may someday soon have real energy & a pain-free body, I cry tears of joy.

In my opinion it was most definitely worth the unpleasantness & expense of the endoscopy to have an answer at long last!

Best of luck to you,

Leah

p.s. You have found a fantastic resource in this forum. I don't know how I'd have made it through the last two weeks without these folks!

Actually, the coconut oil I use for general purpose baking comes from Walmart. I buy it in 31.5 ounce tubs for $2.67. It is refined and flavorless. I also have virgin coconut oil I buy on the internet (Open Original Shared Link), but that has a wonderful coconut flavor that doesn't go with lots of things.

I've found coconut oil sold in natural food stores to be more hit than miss. Some brands taste really awful. Try the Walmart stuff.

Thanks so much, eKatherine! I'm discovering lots of fascinating new ingredients in the 2 weeks since being diagnosed. I thought I was an adventurous cook before, but this is a whole new kind of adventure!

The Camden Grey sounds like something I'd like to try too, since my family loves the flavor of coconut.

What a great new resource this board is!

Thanks again,

Leah

I've been shocked at the number of unhelpful, evasive, even dismissive replies I've received from manufacturers in response to queries about gluten in their products. My response from Nature Made was a refreshingly clear and specific one, so I thought I'd give them a shout-out.

It's nice that there are some good guys out there!

Leah

Date: June 8, 2006

From: Marissa Reyes, Consumer Affairs Department

Subject: Reference #194663

Dear Leah:

We recently received your e-mail regarding Nature Made products. We

appreciate your question concerning the gluten content of this product.

We are aware that many consumers are concerned about gluten in their

diets. Although the majority of our Nature Made products are gluten free,

there are a couple of Nature Made products that contain gluten. Nature

Made products that are not gluten free include the Chewable Vitamin C 500

mg (cc 704) and Chewable Calcium Fruit Flavor (cc A352). The Nature Made

Iron 65 mg tablet is gluten free.

If you are not sure if your chewable supplements are the ones that are

mentioned above, you can find the formulation number (cc #) listed on the

upper left hand side of the label. It will be listed as a cat # (ie: cat

704).

If you have any further questions regarding your Nature Made products,

please reply with the lot number (located near the expiration date) and/or

cat number and we will be pleased to assist you. We hope you find this

information helpful.

We thank you for contacting us and hope that you will continue to use and

enjoy Nature Made products with complete confidence.

Sincerely,

Marissa Reyes

Consumer Affairs Representative

Pharmavite, LLC

MR:194663-06

I tried your brownies last night, made with butter since we have no dairy issues. They were a big hit with my husband & son-- neither Celiac-- both liked them very much! I made them in a 9 x 13 pan since my family goes for brownies on the chewy side. Crispy outside & deliciously gooey within. The chocolate chips are a yummy addition. I added some walnuts too since we're nut nuts.

I may actually try them sometime with the coconut oil if I can find some-- we also love coconut-- does the flavor come through or is it more neutral? Do you buy it from an Asian market or from a health food store?

Thanks for a great recipe!

Leah

I realise now that I really could have sent it back without coming off as a jerk. Still a little self-conscious about this I guess. Also, I hated to cause more trouble for the waitress, who was really being very solicitous & kind about it. (She did actually apologize for the cookie when I pointed it out to her!)

For the more assertive side of my personality, check out my post to CoverGirl! (In Products.) I thought they had some nerve to direct people to Celiac.com in one message, then completely pooh-pooh the lipstick problem in the next!

I still don't understand why they couldn't even tell me whether the lipstick contained outsourced fragrances!

Oh well,

Leah

I thought you might be interested in the following exchange with Cover Girl-- I'll admit I was getting a little ticked off by the final message! (They are in reverse order.)

Hello Monika,

I can tell you are unwilling to help me with this product, & that's a pity, because I'll be forced to change brands now & to post a brand warning on Celiac.com.

Are you aware that as many as 1 in 133 people have gluten intolerance? It would be very nice to have our needs taken seriously by your company instead of getting a dismissive brush-off.

Let me ask you a personal question: do you ever wear lipstick when you eat? Do you ever lick your lips? If you do either you are "ingesting" cosmetics. Perhaps your "advising physician" is male & doesn't really quite understand that lipstick is put on the lips.

Is the physician you consulted a Gastro-Interologist? Many non-specialists are far from up to date on Celiac issues. I myself was misdiagnosed for over 20 years before a specialist finally pinpointed the source of my symptoms.

Please forward this letter to a company executive & let me know her/his name.

I hope you, too, "have a beautiful day"-- in my opinion it is a beautiful thing to learn something and to attempt to help others.

Yours very sincerely,

----- Original Message -----

From: <covergirl@custhelp.com>

To: <curiouser@mindspring.com>

Sent: Wednesday, June 07, 2006 4:01 PM

Subject: Thanks for Contacting CoverGirl. [incident: 060601-000256]

Subject

---------------------------------------------------------------

Hi, I've just been diagnosed with Celiac disease & must avoid all products co...

Discussion Thread

---------------------------------------------------------------

Response (RightNow Administrator) - 06/07/2006 04:01 PM

Hello Leah.

I wish I had that information to share with you. I'm sorry but we don't However, as mentioned before, we sought advice from physicians; they told us it would be very unlikely a person with Celiac disease would have a reaction from a trace amount of gluten coming into contact with his skin or hair. This is because wheat, rye, barley and/or gluten generally cause symptoms when they're ingested. Since our beauty care products are designed to be used externally on the skin, their use shouldn't be an issue for someone with this disease.

Have a beautiful day!

Monika

CG Team

P. S. Moisturize, protect, and glow! Introducing new Olay Touch of Sun facial moisturizer with SPF 15 protection, and a touch of sunless tanner! Your color builds gradually with each application to give your skin a sun-kissed glow. Olay...love the skin y

Customer - 06/05/2006 10:31 AM

Thank you, I appreciate your understanding & extremely cautious response.

I would prefer more specific information, though. Could you please clarify

for me whether Outlast lipsticks contain the outsourced fragrances you

mention? One of the many things I like most about Outlast is that it lacks

the unpleasant "perfumy" taste of some lipsticks.

Many thanks,

Leah

Leah Palmer Preiss

Illustration, Calligraphy, Puzzles & Curiosities

curiouser@mindspring.com

www.leahpalmerpreiss.com

----- Original Message -----

From: <covergirl@custhelp.com>

To: <curiouser@mindspring.com>

Sent: Monday, June 05, 2006 9:58 AM

Response (RightNow Administrator) - 06/05/2006 09:58 AM

Thanks for contacting Cover Girl, Leah.

We know Celiac is a serious disease, so we want to give you clear information regarding the use of our beauty care products. If wheat and/or gluten aren't directly added to a product by us, these ingredients won't be listed on our packages. Like many companies, we often purchase the scents for fragranced products from outside suppliers, and the components of these substances are proprietary information belonging to those companies. Therefore it's possible that a very small amount (generally parts per million) of gluten may be present.

Since gluten sensitivity can vary among people, it would be best if you consulted with your physician about the use of all types of consumable goods, if you haven't already. You might even consider using one of our fragrance free products that doesn't list gluten or wheat extracts on the label.

Thanks again for getting in touch with us. I hope this response has been helpful to you. For more information about Celiac, you may want to check out Open Original Shared Link and Open Original Shared Link

Hope this helps.

Val

CG Team

Customer - 05/31/2006 10:35 PM

Hi, I've just been diagnosed with Celiac disease & must avoid all products containing gluten, wheat, barley, rye or oats.

This is a serious condition & I've been warned that some lipsticks are not gluten-free. I so love your Outlast lipsticks, I fervently hope they are safe! But I need to know for sure. If not, please advise of any substitutes.

Many thanks,

Leah

Auto-Response - 05/31/2006 10:35 PM

Title: Lipsticks contain lead rumor

Link: Open Original Shared Link

Title: Research involving animals at P&G

Link: Open Original Shared Link

Title: How to make CG Outlast last.

Link: Open Original Shared Link

Question Reference #060601-000256

---------------------------------------------------------------

Product Level 1: CoverGirl

Category Level 1: What's in it?/Ingredients

Date Created: 05/31/2006 10:35 PM

Last Updated: 06/07/2006 04:01 PM

Product Name:

Product Version:

[---001:003521:13638---]

Yes, I thought I would be safe with creme brulee, because it was a nice place & didn't seem the sort to add ersatz stabilizers to the custard. But that garnish, oops! Next time I will probably have the nerve to send it back but this is so new to me, it took some guts just to talk to the waitress about it, & she was being so nice... didn't want to make a fuss or embarrass my dining companions... guess I'd better get over that!

Thanks for the tips,

Leah

Well, I took the plunge & went out for sushi. Brought my own soy, avoided eel, crab, "spicy" & anything with tempura or sauce... (all my erstwhile favorites of course! So it goes...)

Went out for dessert to a different restaurant & was so excited when the menu listed flourless chocolate cake... until the waitress checked with the chef & sure enough the pan was dusted with flour... so I ordered creme brulee after again checking with the chef-- still feeling quite hopeful as the waitress was being very helpful & patient-- & it was served with a pirolline cookie stuck to the caramel! Sigh. I took off the top & gave it to my husband & ate some of the bottom part, with misgivings.

It's hard to know if I got away with it really, since I'm only 2 weeks on the diet & still have symptoms. But at least I dared to get out of the house!

Leah

Here's one on about.com that is naturally gluten-free!

Open Original Shared Link

And a couple others that would need tweaking...

Open Original Shared Link

Open Original Shared Link

I'm a southern girl (born in Texas, grew up in NC) & our hushpuppies were always pure cornmeal , like the first recipe above. I'm glad you reminded me of another treat I can still enjoy!

Do be careful of the ones in restaurants though since most of those do have wheat.

Leah

One of the gluten-free recipes has all purpose flour as an ingredient and it doesn't say all purpose gluten-free flour, so read ingredients before you get your heart set on it.

Good caveat-- were you searching with other limitations too? I found that when I searched with multiple limitations (mine were gluten-free & vegetarian) some flour-containing recipes came up, but when I did gluten-free alone, none did. Don't quite understand how THAT works, but that was my experience. (????? I'm no webmaster!)

There are some fantastic-looking recipes without flour, so it is worth a little sorting out.

Leah

You can have soy sauce. San-J makes a gluten free soy sauce. It says wheat free, but it is ok. I personally use Braggs liquid aminos which is unfermented soy sauce and is gluten free. It is better for you if you suspect you have candida overgrowth as I do. It tastes great.

That's great news, thanks!

Leah

This isn't Mexican, but I found it once in a barbecue cookbook--- Masa biscuits-- use your favorite biscuit recipe, but substitute Masa for half of the flour. When I made these I was still eating wheat, but I'm sure you could adapt it to a gluten free version. Makes a tasty & tender biscuit, especially good with apricot jam.

Also, for a party once I made little tamale pies, patting tamale dough into mini-muffin tins, filling with various yummies like black beans, sauteed peppers, cheese... then steam-baking in a water bath. (As you do with custards.) They were yummy & much faster than tamales. Can't find the recipe now but I was probably winging it as I do a lot of that!

I'm newly diagnosed so I'm looking forward to lots of experimentation in the kitchen... if I come up with any more masa ideas I'll post them.

Buen provecha!

Leah

What a find!!!! Bless you for alerting us to this site! My mouth is watering already!

Leah

Jessica, you give me hope! Even if the cake didn't get eaten, just having made it was a triumph. I'm a baking fiend & newly diagnosed Celiac. After reading your post I just ordered the Annalise Roberts book & can't wait to bake from it! Thanks for being so adventurous-- you inspire me!

Leah

I'm a newly-diagnosed Celiac & lifelong avid baker. For me baking was a combination of comfort, love & art-- a near-obsession. When the doctor told me what I had, despite feeling hopeful about my health at last, I cried for a long time, mourning what I thought was the end of baking for me. Then I dried my tears, searched my public library's website, & requested every gluten-free cookbook they had. Two weeks later, I've made 3 kinds of cookies, two breads, a pizza crust, 2 different recipes for biscuits, & a cherry coffee cake-- I'm gaining weight! I can't say every recipe was a success, but thanks to Bette Hagman & her great formulas & explanations I'm learning how to approximate the tastes & textures of recipes I loved, as well as learning new ones. My most exciting moment so far was baking BH's 4-flour bread. It really gave me hope! Sorghum flour seems to be a key ingredient-- that light, springy texture & toothsome crust that I thought was history is back! My son absolutely loved it too.

I'm definitely going to buy this book, & probably some of her others too.

Another great discovery thanks to this forum was quinoa-- a texture very similar to wheat berries-- I'm going to try to develop a recipe using the whole grain, since I used to love wheat-berry bread.

Funny, what I thought would be the hardest part about being Celiac now seems more of an exciting challenge. Expensive though! Anybody know of a source for bulk flours that might be cheaper? (I've already discovered that rice, tapioca, garbanzo & potato flours are WAY cheaper at the local Asian market than at Whole Foods, but haven't found sorghum, brown rice, or whole (unground) grains there.

Happy kitchen adventures to all!

Leah

Just made my first batch of quinoa & discovering this grain is definitely one of the major compensations for losing wheat! I tasted it plain first just to get acquainted, but I'm going to use it next in an Indian dish with peas-- normally I would use rice but I'm all excited about my new discovery & I think this will work great! I love the chewiness, & the flavor is delicious. I can think of so many ways to use this! Definitely I'm going to try it in some bread.

Thank you all so much! What an adventurous journey this is turning out to be... The Mexican quinoa salad sounds fantastic I'm going to look up that pilaf too.

You folks are the best!

Leah

I put a cup of quiona and about 2 cups of water in a small pan, bring it to a boil then simmer for about 10 to 15 minutes. There is very little water left and the quiona will be tender and the germ will be visable as a white ring. Some quionas need rinsing before cooking but I use Ancient Harvest and except for a quick rinse when I put the water in I don't do anything else. I think it also would work quite well in tabouleh and as a replacement for couscous. I really miss baklava and tamir, I was a middle eastern chef for quite a few years and love the food. Baba ganoush is easy to make yourself at home. You just put the cooked eggplant and much the same stuff as for hummus in a blender and whoosh away. I've got some wild grape leaves growing in my yard and am impatiently waiting for them to get big enough to use for dolmas, yum. Make sure you also try buckwheat, its safe and if you like cream of wheat cereal it comes real close. Happy cooking.

Thank you for all the great ideas! I have grapes in my garden too & have toyed with the idea of making dolmas in the past, but since there is a fantastic middle eastern restaurant/bakery/deli nearby I always thought it would be more practical just to buy them. But now I'm motivated to try-- the leaves are quite large already. (I live in the south-- NC.)

I am thankful that I like to cook & to experiment in the kitchen. This would be a whole lot harder if I had to depend on others to do the cooking! I really feel for Celiac college students, constant travelers, & others who don't have kitchens at hand (or who just hate to cook). Even with Whole Foods & Grand Asia Market in our area, there isn't a whole lot to choose from ready-made. I was heartbroken when I found out about soy sauce! Cuts out a lot of otherwise great ready-made options.

Thanks again for all your help. I can't wait to try the quinoa!

Leah

Thank you all so much for your help & encouragement. I would feel so lost without this forum. After this morning's posts I went right out & bought some quinoa & millet at Whole Foods. In my baking experiments so far I've really missed the chewiness of the whole-grain breads I was used to, so I'm hoping I can approximate it with exotic grains.

Ravenwoodglass, how did you cook the quinoa for your salad? Is it basically like rice? Your salad sounds so delicious. One of my first thoughts when I was doing the mental "Goodbye Tour" of foods I loved was "Oh no! No more tabouli!" & yes, I'll miss pita too. Thank goodness baba ganouj is still okay! (Though I'm a little worried about cross-contamination at my favorite Middle Eastern deli.)

Again, heartfelt thanks to all!

Leah

This is quite reassuring. It's enough to cope with just ridding my world of gluten-- adding lots of meat seemed completely unnatural to me!

Thank you so much. This forum is a lifesaver!

Leah

A sort of theoretical question for all you wonderful helpful people:

I've just this week been diagnosed with Celiac (at the age of 49) & it came as such a surprise to me because all my life it has seemed like starches were the ONLY thing I could digest easily. I was a vegetarian for many years and although I now eat fish & poultry two or three times a week, the very idea of eating beef or pork still makes me feel ill. I've always been okay with eggs & cheese & yogurt, though milk itself sometimes bothers me. (I have always loved rice too, including those rice cakes everyone seems to hate!)

When busy or stressed I've gone for weeks at a time with very little other than bread or crackers, peanut butter & fruit & veg to eat. I have to remind myself to eat protein-- have no natural appetite for it as others seem to.

Now reading some of this material I see that many people are recommending a diet with lots of protein, especially meat, & few starches of any kind. I feel sort of choked just thinking about so much meat... do you think my distaste for meat & preference for starch is some sort of cruel trick my body has played on me all these years? What is the deal? I've heard some Celiacs crave gluten-- WHY? I'm very curious & want to understand how this disease works...

If I force myself to eat meat will I start to like it? All I can think of is childhood meals when relatives would beg me to eat more meat & I was just so miserable... Ugh!

In the week since my diagnosis I've already tried lots of alternate flours (I love to bake from scratch) & I have a feeling I could be pretty happy with them after some more experimentation, but I'm beginning to think my starch preference could actually be a symptom of some kind. It's absolutely eerie how many of my "discomforts" (some of which I never even thought of as illnesses before, because "that's just the way I am") turn out to be classic Celiac symptoms.

Any thoughts?

Many thanks,

Leah