Gluten-Free Girl and the Chef: how connections led to chocolate chip cookies

13 March 2008

how connections led to chocolate chip cookies

This afternoon, a fellow writer and food-lover friend spotted something on the menu I might like. A crispy duck salad with green lentils, red cabbage, winter pears, and some kind of creamy vinaigrette. Before I could even coo over the idea of it, Jess looked up at the waiter and said, “Does have that any kind of bread in it? Or any kind of wheat at all?”

I thought for a moment that she was trying to go gluten-free. Later, I realized she was simply asking for me. (And every time someone takes care of me, I love that person more.) The waiter said, “I don’t believe so, but I’ll check.”

Before I left, I said, “I think I’d want one of those too, but it can’t have even a speck of wheat in it.” (Looking at the description of the dish, I wasn’t worried about rye or barley.)

“Oh,” he said, a smile lighting up his face. “I’m learning all about this. My mom has to do that too!”

“Celiac?” I said, as I looked up at him.

“Yes!” he seemed excited that someone knew what his mother is suffering.

“Me too. How long?”

“Just a month. She’s having a hard time.” His face naturally shadowed with sadness.

I pulled out my wallet, fished out my business card, and said, “Hey listen, I write a website all about this, and I have a book. If you think it will help your mom, give her this.”

He seemed genuinely thrilled. In fact, he thanked me several times throughout the meal. As he left, I looked at Jess, a bit sheepish I had just promoted my work like that. But she put me at ease immediately. “Changing one life at a time, eh?”

That’s what it feels like sometimes.

(And by the way, Cafe Presse, where we had lunch, is one of my favorite spots in Seattle for lunch. Great food, fresh ingredients, a French feel. That salad was simply transcendent. I’ve eaten at Presse many times, and every waiter has understood the gluten dilemma. Plus, they make incredible pommes frites, and they only fry those in the oil in the kitchen. No cross-contamination. I may not have experienced any cliché pregnancy cravings, but this baby seems to love Presse pomme frites with fresh aioli.)

I’m amazed, every day, at how deeply we affect each other, and we often don’t know it.

Every time those of us who are gluten-free speak up and sing out our story (instead of silently sulking), we’re changing people’s minds.

I like to joke, these days, that part of my job is talk about my intestines in public. (“What happens when you have any gluten by mistake?” someone asks me, and I start into the descriptions.) I’m not complaining. It’s a hilarious gig. And I have always thrived on absurdity. But most of us aren’t that thrilled with disclosing the details of our “disease” in public. Some elect to stay home instead.

By the way, I have to interrupt myself: I rarely say that I have celiac disease. I don’t have a disease. This is simply the way my body was built, imprinted in my DNA long before I was born. The same may be true for Little Bean, and this baby is still four months from coming into the world. If you define yourself by disease, you might not want to talk about what happens to you if the chefs slip and give you some breadcrumbs by mistake. But me? I explain, in clear terms, because this is simply who I am, and I want to be well.

When I talk about gluten and what will happen when I get some, I never know who might be listening.

Several months ago, in O’Hare airport, in the security line, I started talking to an older gentleman from Georgia. We bantered about something, and he asked me what I did for a living. When I told him about my writing, and the book I had just been in town to promote, his eyes went wide. Turns out he was one of the nation’s leading diabetes educators, and he had been wanting to learn more about living gluten-free. Maybe he bought my book. Maybe someone else who needed the story found out about it from him.

Look, I know how lucky I am. After a lifetime of dreaming about it, I was offered a book deal. When I look over at the copy of my book sitting on the mantelpiece of our fireplace, I want to giggle. But that’s not the point.

We can all do this. Those of you who are gluten-free, have you noticed how much more widely discussed this is these days than three years ago? When I explain my work now, to someone in grocery stores or airplanes, someone always says, “Oh, I know someone with that.” If someone else is next to you, in the aisle with the gluten-free flours, looking puzzled? Strike up a conversation. Maybe you’ll spark someone to create a truly great gluten-free bread. (And then ask for the recipe.)

To quote, in part, Robert Kennedy: “Each time a person…acts to improve the lot of others…(s)he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples can build a current that can sweep down the mightiest walls of oppression and resistance.”

In other words? Maybe some day each person in this country with celiac can be well. (And eat something like that crispy duck and lentil salad. As Jess said, as we were desperately trying to find any shreds of crispy duck skin still clinging to the bone, “Oh my god, I want to eat my fingers.”)

Changing lives one person at a time. It may be the only way anything happens.

It’s even better when it’s someone you love.

Our friends Nina and Booth had us over to their lovely home for dinner the other night. The Chef loves it when other people cook for him, so he can sit back and relax. But what made me happier still is that, sitting in their kitchen, I knew I didn’t have to explain anything about how to make food for me safely.

You see, the two of them have a gluten-free kitchen now too.

Nina and I met through our dear friend Judy. The two of them went to elementary school together, grew up together, and have stayed friends through every tumultuous and glorious year. Judy was actually the director for my Food Network spot, and she became my friend as soon as we were done shooting. When she came to Seattle last year, to film more spots, she introduced me and the Chef to Nina and Booth. Kismet.

Nina and I started rollerblading around Greenlake in the burgeoning spring air. We talked fast, with our hands (thank goodness we had balance in our bodies) about writing, options for films, translating memories into words, and editors. You see, Nina is a fabulously talented children’s book author. (Little Bean will be the proud owner of all of Nina’s books.) We spoke each other’s language, without need for translation, immediately.

And of course, we talked about food. We never stopped talking about food.

Booth, her husband, had once run a seafood exporting business, bringing Pacific Northwest fish to Japan. Together, they had run a successful coffee company in Atlanta, before that. Nina and Booth know all the best places to find exquisite bites of food, and they were generous in sharing names.

(Some of you who have been reading for awhile might also recognize them as our friends who live half the week on The Island, which we love.)

Soon after we met, Nina started reading this site. Booth did too.

And yet, it took us all at least six months before we realized: “Wait a second. Does Booth have celiac too?”

One day, as we sat in the coffee shop near my old home, I listened as Nina talked about how horrible Booth was feeling. Starting somewhere in the fall, after a long, arduous solo backpacking trip, he had started to descend. Terrible lethargy, headaches, sleepless nights, and this awful aching feeling in his feet. Soon, he could no longer ride his bike. He had been to doctors, who wanted to diagnose him with gout, or thought he had some form of arthritis. When the strange rash appeared, the doctors tried to give him salves for that.

Each one was addressing the individual symptoms. No one looked beneath it to see if they were all connected.

I had been hearing about and witnessing Booth’s pain, and his understandable struggle with this. No one seemed to understand.

Why did it take me nearly four months to ask, “Wait, does he have any digestive troubles?” (You see? I talk about intestines.)

I’ll leave Booth’s personal bathroom issues alone. He’s not writing this piece. But I will say this: what Nina told me confirmed the idea that had been sparked.

Let’s see. He’s Irish. He spends a lot of time in the bathroom, always has. He loves beer, but it makes him kind of sleepy. He can’t sleep through the night, uninterrupted. Headaches. Sudden onset of pain and a terrible rash after a traumatic event….

“Nina, I think he might have celiac. Have him tested.”

She read more about it. (Fans of this site, they never thought it had pertained to them.) Booth did too. They went to the doctor.

And the doctor did the blood test, misread it, said he showed a “weak positive” and congratulated him on not having celiac. Disappointed at not having a diagnosis, he went gluten-free for a week anyway.

The next week, I met Nina and Booth at the grocery store in Ballard. Booth’s eyes were wide open, light for the first time in months. His skin looked clear. He stood up straighter. And Nina looked happier with him than I had seen in a long time.

I glowed. As we slowly walked through the grocery store, I pointed out the places where gluten can hide, and suggested some cereals and flours. But mostly, I found myself beaming. That I could help my friend find health? Better than a book deal.

Booth had started sleeping through the night. He hadn’t taken any ibuprofen in 24 hours, after months of guzzling them down every four hours. Clearly, he felt better.

His rash didn’t go away, though. In fact, it flared even stronger after a few weeks. It nuzzled into vulnerable places and itched so ferociously that he could barely sleep at night. One night, in desperation, he drove to the emergency room. The doctor there took one look at him, listened to his story, and examined his rash. “You have celiac,” he said. “This is dermatitis herpatiformis.”

Finally, a diagnosis.

Booth still struggles. The rash hasn’t disappeared completely. (For those of you reading with DH, how long did it take you to stop suffering with it?) He still wonders, sometimes, if he really does have this. How could he have lived as long as he did and not known this was his body?

That was my question when I was diagnosed as well.

But he’s committed. Call it whatever you want — gluten clearly doesn’t do him any good. And after we began talking, and he started to live consistently without all those problems plaguing him, he began suggesting to the members of his family that they be checked out too. The mother who suffered colon cancer. The sister with some of his same ailments. The brother who had never been well. His three sons, one of whom spent time in Iraq and could not eat a meal without throwing up and having horrible stomach pains. (The Marines refused to believe that anything was wrong with him, and did not investigate.) They have started listening. One of his sons has gone gluten-free with him, entirely. Always a lover of food (he began cooking seriously at 11), Chris is now one of the assistants at the Chef’s restaurant. He’s thrilled to be working at a place where he can put his hands on the food and not worry about growing sick. In turn, he’s feeding other people who are amazed to be eating gluten-free in a restaurant.

Those ripples are extending outward.

So when Nina and Booth fed us, the other night, I didn’t have to examine any packages for her, to detect hidden ingredients. Everything in their home was already gluten-free. We sat in their capacious kitchen, the warm light falling down upon us, eating kalamata olives, Manchego cheese with quince paste, and rice crackers. Nina worked on the chicken curry, Booth cooked the jasmine rice, and we all laughed together. Everyone in the room felt well.

The curry was stunning. The eggplant bharta kicked our sinuses with its spiciness. Even the non-alcoholic fizzy grape juice tasted good to me.

But the best part of the meal was at the end. With a proud flourish, Nina brought forth a plate of chocolate chip cookies. For the first couple of months they were both eating gluten-free (she eats with him, after all), Nina relied on mixes. It’s how I started too. But when I showed her more flours, and told her how I combined them, she started playing.

And just that week, she had invented chocolate chip cookies that made them both howl with delight. Hands grabbed for them that night, and then reached in for more. These weren’t specialty cookies. These were just damned fine.

After months of not having a taste for sweets, something awakened in me. Still-warm, crumbly chocolate chip cookies, the chunks of chocolate melting against my teeth, the whole grains in the flours as generous as the light in the kitchen had been, the dark sweetness of Muscovado sugar — all of it shared with friends.

Little Bean began dancing in my belly.

Isn’t it amazing? How much we all mean to each other?

NINA'S BETTER THAN WHEAT FLOUR CHOCOLATE CHIP COOKIES

Nina and Booth gave me permission to tell their story here. And Nina kindly gave me her recipe, so that everyone can have great chocolate chip cookies.

I take no credit for these. I stand in awe. These are all hers.

1 cup teff flour
1/2 cup sorghum flour
1/2 cup ground flaxseed
1/4 cup sweet rice flour
3/4 cup Muscovado sugar
3/4 cup white sugar
2 sticks butter- softened
2 eggs
1 tsp baking soda
1 tsp salt
1 1/2 tsp vanilla extract
1 bag Ghirardelli BITTERSWEET chocolate chips
1 cup chopped walnuts

Preheat oven to 375ºf.

In a large bowl- put in softened butter. Blend in sugars. Mix in eggs and
then add vanilla. Mix all dry ingredients together, and blend into wet
mixture. Blend in chocolate chips and nuts. Put heaping teaspoonfuls onto
cookie sheet.

Bake for 10 minutes.

Remove to cooling rack.

78 Comments:

At 9:56 PM, Anonymous said...: My niece diagnosed my celiac disease. I never had the blood test because it was over three years ago, and the doctors all said, "You DON'T have celiac." I went gluten-free anyway.

My joint pain went away. My restless legs syndrome went away. My migraines went away. My immunity got a lot better, and more...

My celiac was triggered or got worse with each pregnancy. (I am not complaining, though. I would not trade them for anything.) I am in my forties now, and my cholesterol, triglycerides, blood pressure, blood sugar, good cholesterol, are all ideal in terms of numbers. I wonder if the gluten-free diet has something to do with it.

I like when you tell these stories of how people, including yourself, found out they had celiac's and got better. Thanks for sharing about Booth.

Sho (Shoshanah)
At 10:29 PM, Linda said...: Thanks again for a lovely post - my own version of dermititis was diagnosed as Rosacea - you know the red, blotchy look like bad acne, it responded really well to an over the counter cream called Prosacea. that and staying away from wheat, but when some sneaks in the cream clears it up.
At 1:18 AM, NotBlogginGirl said...: After 8 years gluten free my DH is still here though, (like you), I am spectacularly sensitive (to the point where standing in the bakery aisle makes me ill). It's ten thousand times better than it was, and gets better every day, so I keep telling myself it will just take more time - and stick to long sleeves and trousers. Totally thrilled this year as my legs are clear - back to the short skirts!

The rule of thumb my doctor uses for telling when it will clear up is to take how long you've had it (in days or weeks), plus 10%. There are a couple of drugs that can be used to kill the itch and clear it up faster - but most of them are highly addictive, incredibly unpleasant, or just plain ineffective. On the upside, because it reliably flares within 7 days of a whoops, it makes it dead easy to tell whether that lousy day last week was just a bad day, or a gluten episode. . .

Booth and Nina should also be aware that he may be skin-sensitive to gluten as well - which may be why his skin hasn't yet cleared up. They should check all of their bath and shower products, skin care, lip gloss, toothpaste, sunblock, and Nina's makeup. And handing out gluteny sandwiches at the neighbourhood picnic is probably a no-no as well . . .
At 2:18 AM, Thalia said...: Lovely post, as usual, but one line of it bothered me. Fresh Aioli for the pregnant lady? Not a very good idea. Lay off the raw eggs for now, yes?
At 4:41 AM, Adele said...: A friend of mine see's her condition as a dis-ease. She ia 'at ease' when she eats the proper things for her body. She is at 'dis-ease' when she puts something into her body that it doesn't like.

Good energy, Good Karma!
At 4:59 AM, Gina Perry said...: Wonderful post - I love hearing stories like this. And maybe I'll give GF chocolate chip cookies another try...

In terms of spreading the word about Celiac, I was amused to see it make it to a game show (who wants to be a millionaire - a person who has celiac cannot eat A,B,C,D foods?). I was a little saddened that the player had NO clue whatsoever. However, his lifeline - a doctor, got it right!
At 5:57 AM, mark and jie said...: I was diagnosed with DH in October of 2007, so about 5 months ago. I have gone "more or less" gluten free, in that I don't eat anything I know to have gluten, but I still eat out.

In any event, still dealing with the rash on my elbows, knees, backside, and face (basically bad razor burn). I use a corticosteroid topical to basically keep the rash in check. I also take an anti-histamine (Zyrtec, generally) before I go to bed. This really, really, really helps me sleep the night through, and I very highly recommend it. Without it, I would occasionally wake up with uncontrollable itching.

Anyway, my dermo tells me it will take between 6 - 9 mos for my DH to clear. I'll let you know...
At 6:55 AM, Anonymous said...: The dermititis on my hands came and went for almost 2 years after going GF. It's severity fluctuated with my level of gluten exposure & stress. For me, it was the last symptom to fade away...and it's reappearance is my first cue that I've been exposed to Gluten. (Dang that play dough & finger paint.)
At 6:59 AM, Tara Barker said...: I saw the photos of those cookies over on Flickr and was wondering (longingly) who made them and if we'd see a recipe soon. Thanks Shauna & Nina!
At 7:36 AM, Dk's Wife said...: You know I have a very dear friend with Celiac, and it always makes me happy to prepare her a gluten free dish on occasion. MOF I always do it for her birthday! Hugs to you!
At 7:45 AM, Amanda said...: I appreciate so much the work you and others do to encourage gluten-free alternatives, and educating us on ways to eat wonderfully and satisfyingly.

Although I am not celiac, I have something called PCOS and resulting diabetes. It's important for me to eat low-carb and whole-grain with no sugar. I find that gluten-free recipes are best for me, because I can easily convert them to sugar free. GF menu options are my best solution when eating out.

So you help even more people than you think!
At 8:15 AM, Dana said...: I found out I had celiac when I kept drastically losing weight while nursing my daughter. I had to wean her at 8 months and didn't get diagnosed until just after her 1st birthday. I was scary thin. She's 12 now and not a celiac, so only I have to be careful. But I'm the healthiest I've ever been and as long as I don't get obsessed with the numbers on the scale it's all good.

I call it celiac DISEASE just to clarify that it's not an allergy, which is the natural assumption, when encountering strangers.

I read your post recently about your pregnancy and this makes sense that maybe that's why it took me a couple of years to conceive. Congratulations and the best of health to you and your baby!

Thanks for all the great recipes too, I've been eating much happier lately.
At 9:01 AM, Anonymous said...: I am six months now without eating wheat gluten, I have 15lbs (35lbs to go. I am starting to feel better than ever I'm 50 years old, I still want to be more energetic but I can see that I shall need to progress slowly. Shauna you book has been life changing now I am prepared to ask for what I need to be well and to celebrate the food that will keep me that way. I can find the personal power to check if things will be ok and ask extra questions rather than take a risk and suffer later.

You go ahead and self promote all you like you are special.
At 9:04 AM, Joy said...: I second what notbloggingirl said about skin sensitivity. I switched to all gluten free makeup when I was diagnosed last fall, but am still finishing up a bottle of gluten-containing shampoo (mainly because it cost so much and I want to get my money's worth...stubborn, I know). My face has drastically cleared up, but if I don't blow dry my hair my head itches like crazy.

As for how long it takes to go away, I don't know if I can be of much help. I was extremely lucky in that I was diagnosed before the rash reached the severity of Booth's. When I do break out, it rarely itches and generally only lasts a day or two.
At 9:38 AM, Fiona said...: can you please tell me what teff flour is?
At 9:38 AM, Anonymous said...: Shauna & Nina,
I'm going to give these cookies a whirl this weekend, however need to eliminate the flax seeds/walnuts due to my daughter's seed intolerance and nut allergy. I'm sure the walnuts are optional but can you suggest a substitution for the flax seeds?? Thanks everso!
Gina
At 9:55 AM, Anonymous said...: We are thrilled to have Shauna "tell our story!" And we are so psyched to hear thoughts about Booth's DH.

Just so you know- I don't wear make-up. Yeah, I'm a hippy chick. I occasionally wear chapstick or Neutrogena lip gloss when I speak. I use moisterizers made by Lush and Fresh. We use Dr. Bronner's Peppermint soap. I've checked our toothpastes. But I like reading ingredients so I'll keep checking everything!

I think the rash will just need time. It's so much better than it was. I wish there was a magic lotion, but we haven't found it yet.
At 10:01 AM, Anonymous said...: I just saw the Teff question. Shauna, do you want to answer it? Teff is an amazing Ethiopian grain, now grown here in the US. (Idaho, I think?) You can order Ivory Teff flour online at the Teff Company site. I buy it at our PCC co-op grocery. I'll let Shauna tell you the incredible properties of Teff!

As far as substituting the flaxseed meal, I'm not sure. I'd have to experiment. Maybe use brown rice flour? The flaxseed meal gives the cookies an incredible texture, and savory nuttiness. But that won't work with a nut allergy! Another thought would be to grind your own quinoa?

Any ideas, Shauna?
At 10:15 AM, Anonymous said...: Andrew, Fiona, and Lucinda,
Teff is a dark millet flour. I have seen Bob's Red Mill packages. Have yet to see it in bulk though, even at the co-op.
At 11:50 AM, Anna said...: Does Booth still eat dairy? I'm guessing that if he cuts out ALL dairy and sugar his DH will go away - this did for me what no prescription cream could ever do. Dairy is a major inflammatory, especially in terms of skin problems. As for the choc chip cookies... earth balance is a great sub for butter and agave syrup and/or xylitol are wonderful sugar subs. It's tough going GF and dairy free and sugar free but it's worth it to not be itchy and blotchy all the time. Good luck!
At 11:51 AM, Anonymous said...: I've been gf for over 10 years and the DH took the longest to leave. I remember the rash under my fingernails from back when I was a preteen! And somehow the rashes on my hands got worse when I was making my living as a baker -- imagine that!

Now if people ask me what happens if I unintentionally eat gluten, I tell them that I will have 1-3 days of digestive hell and then a few days later the rash will appear and last anywhere from 3 weeks to 3 months.
At 12:05 PM, Vittoria said...: I think it's so wonderful that you are able to educate so many people. I try as much as I can, but some just won't listen (I"m sure you've had your share of those as well).

A agree that my 'condition' is not a disease or condition at all, it's just the way I was made. Beside avoiding gluten, my body and I have decided that most simple carbs are out too. That's just how I am. Although, when having the gluten free conversation at restaurants I find people pay better attention when you say celiac 'disease'

My final diagnoses also came from a severe bout or DH, several emergency room visits, prescriptions and months of misery I recovered. I would say that from the onset of symptoms until the itching and rash was mostly gone and I could return to 'normal' life was about 9 months, with persistence of a few spots for up to a year or more. After 2 years, it's always my skin that gives me the first warning sign that I've been contaminated.

I found that even after the itching and systemic symptoms disappeared my skin would not heal (I've had open wounds of one sort or another all my life until now). I found a great dermatologist who finally found the answer. I wrote about it on my own blog: http://deliciouslygflifelessons.blogspot.com/2008/02/case-of-itchies.html,

Note: As a child I was always told I had eczema, but nothing ever seemed to work.

I hope that helps Booth, or anyone else out there.
At 12:09 PM, Vittoria said...: I'll add to notbloggingirl also, that I too am skin sensitive to wheat, and yes, oatmeal products as well. All those oatmeal baths to calm the chicken pox? Only makes the itch worse. At least I can tell from a quick patch test what lotions I can or can't use. I try to stick to things with ingredients I recognize and can pronounce.
At 12:24 PM, CeliacChick said...: Hello!

I get DH. It took me awhile to figure out that grain alcohol from wheat triggers it. Now they say that grain alcohol is "ok", but many still have issues with it. I am one of those people. The other thing is I would drink an alcohol like vodka or tequila thinking "oh it's from potatoes or agave". I learned the hard way and by process of elimination that only good quality tequila (i.e. Patron) is 100% agave or polish vodka (Luksosawa or Chopin) are 100% potato. It's cheaper to mix in grain alcohol. Anyhoo...hope that helps.
One more thing- after going gluten-free I had to then figure out that dairy and corn also gave me allergic rashes.
Also, Evening Primrose oil totally soothes my skin with or without a rash. Just buy the capsules at a health food store. It won't make it go away, but it soothes it.
At 12:47 PM, Anonymous said...: Hi Shauna,

I have been gluten-free for just over a year, a vegan for just over three weeks, and my DH still bothers me. I remember, as a kid, waking up during the night because my hands were scratching my insanely itchy legs. I actually have patches of scars across the tops and sides of my thighs from night-time scratching when I was a child and teenager. Ugh.

The itch still bothers me sometimes, but not as badly as before. Last night, I woke up scratching again, don't know what triggered it this time! The time differs from person to person, but I really hope that Booth's will clear up SOON!
At 2:08 PM, Anonymous said...: There's never been a better time to be gluten free, thanks to you, Shauna, and all those who spread the word about eating gluten-free in a positive way. How lucky we are to live in a time when requesting a gluten-free dish in a restaurant isn't always met with a blank stare or the comment "No, there's no wheat in that sauce, it's just plain white flour!"

I too never refer to myself as having celiac disease, for the same reason--I'm a person, not a disease. But here's a pet peeve: referring to ourselves as having "celiac". At risk of pedantry, the word "celiac" means "of, pertaining to, or located in the cavity of the abdomen". So to say "I have celiac" is (forgive me everyone who says it) nonsensical, and I cringe a bit every time I hear it. The condition that we have is "sprue". "Sprue" means "a chronic disease ... caused by defective absorption of nutrients from the intestinal tract." So what we have is sprue, of the celiac type. (There's also a condition called tropical sprue, which is not triggered by gluten ingestion. The cause is unknown, but may be an infectious process.)

I know I'm fighting a losing battle in trying to get people to use accurate words to refer to our condition. The inaccurate usage is probably permanently embedded in the vernacular. And the most important thing is to raise awareness about sprue and how a gluten-free diet for those with it is life- and health-enhancing, if not indeed lifesaving.

Thanks for the opportunity to get up on my soapbox and ventilate a bit!
At 2:20 PM, Anonymous said...: Great blog, Shauna! I've spent my entire week off staying close to home. You've encouraged me to go to the only bar that serves RedBridge beer tonight!

Very helpful comments on DH. I didn't know I could get it by handling wheat. I cook professionally, for others, so it happens daily. My hands look awful. Think I'll start wearing gloves all the time.

About TEFF - I just got a Black & Decker coffee bean mill. It's a large size and was the same price as the smaller grinders. It does a great job grinding up my quinoa. I like the hearty texture of quinoa in baked goods.
At 3:13 PM, Anonymous said...: On the subject of celiac word of mouth-- A friend of mine just told me that her neighbor's nephew was just diagnosed. The neighbor didn't have a good understanding of what it was or what to do for her nephew. Luckily, my friend knew all about it because I yap about it so much. She said it felt great to be able to explain it.

Thanks for sharing the info on Nina's books! They look darling. I just ordered two of them for my nephews.

Kelley
At 3:52 PM, Anonymous said...: Working in a bookstore I get all sorts of folks. My favorite, however, are the customers I find wandering in the food allergy section. I usually spot them drearily walking along staring at titles, lost. I stop and ask if they need help, most say no and I can see somewhere inside they seem ashamed of the allergy. I mention my allergy and ask again if they need help and they always take it. We become kindred spirits in that aisle.

I've been amazed at the number of gluten sensitive people I've met in the past few months.

I always ask them if they're new to the diagnosis and if they are recommend your book. I explain that it's going to be hard at first but it's certainly not the end of the world. That point is driven home once they've read your book.

I've sent home at least 10 copies of Gluten Free Girl since January, I see those customers back in the store a few weeks later looking happier, lighter and full of life. Mostly they come back to buy more GF cook books but I've had a few come back to say hello and let me know how they are.

I feel wonderfully lucky to be able to have little connections with folks. From the dad I spoke with about his gluten intolerant son to the middle aged woman who had just faced her doctor and learned her diagnosis we are all tied together.
At 4:05 PM, Anonymous said...: On your friends rash, has he looked into testing for other food sensitivities? My daughter has several food allergies, including gluten, and it manifests mostly on her skin in itchy rashes. An antihistamine helps tremendously for both the itch and the clear up (stop the itch and it gives the spot an opportunity to heal).

I certainly don't know a whole lot about celiac as we deal with other allergies & sensitivities, thus I don't know a whole lot about DH, but if I were to suspect, I'd check other foods in his diet.

Knowing the dietary changes that we have had to make with daughters sensitivities we began eating more of the stuff that she could eat. It could be that Booth is eating more of something that he responds to, thus the exaggeration after cutting out gluten.

Something to consider.
At 4:40 PM, Shirley said...: Oh, Shauna, that is wonderful that you have been able to help your friend (and help a few others recently)! I consider that one of the best things about having gluten intolerance--being able to help others find out they have issues and go gluten free successfully. We all have a mission to promote awareness. So many folks out there are still suffering with gluten issues and have no idea.

Regarding DH, my son gets the rash. His first time was at age 17. It was all over his torso and he couldn't go to the pool without his shirt--not cool. So, he went gluten free and it disappeared after three weeks. His dermatologist had biopsied a lesion, but had done it incorrectly I later found out (you have to biopsy near the lesion, but not the lesion itself). He was mostly GF for a year and then resumed eating gluten. He has been tested for celiac, but it is negative. Yet he does test positive for gluten sensitivity. Now 20, he knows he has issues with gluten, but has a hard time staying GF. However, when his rash returns, he goes GF and it disappears. I am sure the healing power of youth and lack of years of gluten damage allow him to heal so quickly. I worry about him, but know he has to decide to go GF on his own.

I hope your friend is also reviewing all the products that touch his skin, not just what he eats. That is a definite requirement with DH. He should look at shampoo (often contain wheat), shaving cream, soaps, lotions, etc.

Thanks so much for Nina's cookie recipe. Looks yummy and healthy. I have a great, tasty recipe, but it calls for rice flour. This one looks much healthier.

Best to all!
At 4:43 PM, Anonymous said...: From the Clan Thompson site, an article on DH (http://clanthompson.com/news_archives_story.php3?story_id=2&category=Interviews&category_id=5):

"There is no proven relationship with other foods in dermatitis herpetiformis. Many patients, however, have reported that some foods that do not contain gluten seem to make their disease flare. The best advice is to avoid any such foods that are identified, although we do not understand what the relationship to the skin disease is. The mineral iodine is known to make the disease worse. For this reason foods and supplements high in iodine should be avoided. Table salt which is not iodized should be used. This can be found in most grocery stores with the other salts. Avoid kelp and other seaweed products, and do not use sea salt. If you take any nutritional supplements, examine them carefully to avoid any iodine-containing ingredients. Some vitamin and mineral supplements contian iodine."

I have read in several places that in addition to gluten people with DH also need to avoid iodine for a very long time until the rash is completely cleared up. It was even in an article in the Orange County Register here in California about a year ago.

Shauna, I love your blog, your recipes (my kids are extremely grateful for your muffin recipe - it's been modified in many ways now) and your book. And it's nice to see a fellow East L.A. county girl doing so well.
At 4:53 PM, alane said...: Shauna, You have me stumped. What is muscovado sugar and why does the recipe call for that over any other sugar?
At 5:02 PM, Anonymous said...: Hi - just discovered your blog and am so enjoying it. I am going to look for your book as well. I was diagnosed after my daughter's birth in 1999 - what a relief! I so agree with your one person at a time. What I find amazing is how many times you will find a person who has all the symptoms but has not yet been diagnosed. I can't tell you how many times I have had said to someone - tell your doctor to test you and it turned out they were celiac or wheat intolerant. Unfortunately (or fortunately) I live in the Bahamas now and have lost about 12lbs since I arrived (no gluten free products at all so no carbs for me :-) I think I will survive.
At 6:13 PM, Aubrey said...: I love your blog - I am helping a very good friend work through her gluten issues with your help, and it is wonderful. Thank you.

I have something that will help Booth and his rash - my version of payback for all of your wonderful words. (It's what I do for a living...) Please email me (beadyeyed2@aol.com).
At 6:16 PM, The Peanut Butter Boy said...: Lots of crazy flours here, looks a little complicated and involved for me, but they look great. I wish I could just try one! Certainly could use a dash of pb for good measure =)

- The Peanut Butter Boy
At 7:07 PM, Anonymous said...: Mmmm Muscovado. The reason I used that sugar in the cookies as opposed to the normal brown sugar that most recipes call for, is because Muscovado has a deep, mysterious molasses-like flavor that makes the cookies taste rich and carmelized.

You can just use brown sugar- which is the standard that Nestle's Toll House Cookies set eons ago. I just have found that since we went gluten-free that trying new things makes up for what we gave up.
At 7:41 PM, Anonymous said...: Wait! No xanthan gum?!?!?!

:)

I'm trying these this weekend! Thanks.
At 8:16 PM, Britta said...: Hi! I've never commented here, for whatever reason (I've been intimidated, I'll admit)... But I thought I'd say bravo for sharing a friend's recipe that has to be the best chocolate chip cookie I've ever had, gluten-free or not. I was diagnosed in December and couldn't have made it through these last couple of months without you. As someone who cooks and is in the food industry, I appreciate more than anything your willingness to experiment, your emotional connection with food, and the way you tell it (I'm also a writer).

Also, I'm wondering what you say, exactly, to those you need to tell about having celiac. I'm still struggling with what/how much to tell so that the people feeding me/caring for me know what I can and can't have. Just curious. I can't wait to run into you at one of your many events.

Thanks for all do--the ripples you've sent into the world are so needed.
At 9:50 PM, Silliyak said...: It's late, so I didn't read all the comments thoroughly, but if your friend is suffering, I was given Dapsone for the itching after my initial diagnosis. It's not for the faint of heart, and he'll want to get off it ASAP. Briefly, it "ages" the red blood cells and can lead to anemia. You have to have blood tests weekly for awhile if I remember correctly at first.
As for celiac becoming more recognized, I agree, and it doesn't feel like a fad, i.e. this months NEW SPECTACULAR SCARY threat. Thanks for everything you've done.
At 10:51 PM, Anonymous said...: DH takes up to three or more years to go away, post-diet-switch. The antibodies lodge under the skin and don't leave unless flushed out in a rash (non-scientific explanation, but functionally true).

By the way, having celiac disease is a disqualifier for military service. Your friend's son would have to leave the military if he got a positive diagnosis. MRE's aren't gluten-free, and neither are military kitchens.
At 1:37 AM, Anonymous said...: Wow-I can no longer stay silent! I've been lurking for quite some time now...enjoying the verbage and the things we have in common. I too married in my early 40's (for the first time), a man that has a gluten allergy and is the chef of the family. We are both RN's and it has been quite the journey-learning about the disease and how to live on a day by day basis w/ this issue.

Thank you for your efforts to increase public awareness-w/ humor and personal vignettes. We both look forward to what you have to say! Best wishes w/ the little one...we hope to follow suit!

Marla & Jack
At 5:43 AM, Jenny said...: A great story, but one little comment struck me as the cutest thing you wrote:

that you had a copy of your book on the mantle.

I LOVE it!
At 8:20 AM, Anonymous said...: I would have to ditto what CeliacChick said about evening primrose oil. EPO is a natural anti-inflamatory, and I rub it into muscle aches, and it works better than Ben-Gay. I rub it into my legs when my restless legs flare up, and it works like a charm. I also swallow three EPO capsules daily.

I will add that a good dosage of probiotics can be helpful for us. Probiotics seem to help protect the intestines from the effects of food allergies.

Sho
At 9:03 AM, Let Them (not) Eat Cake said...: I don't normally leave a comment, but I do have a DH persepective to add to the fray! My DH appeared on the tops of my toes about two weeks before my scheduled appointment with a gastroenterologist (whereby my Celiac diagnosis came about). I thought that they were blisters from my shoes. Then I thought "ew, this is some fungal infection" and used an antifungal cream. That made the DH angry. I don't recommend it :)

Then I went to my family doc (two days before the fateful gastro appt) and he biopsied it. The funny thing was that he called me the day after I was suspected to have Celiac, with an explanation of "We don't really know what it is, but it's something inflammatory." Suddenly, it all made sense. With my eyes bleary from scouring the internet for all things Celiac in the past 24 hours, I made the connection!

Since I hadn't had it too long before I cut out gluten (maybe a month?), it didn't take long to go away, maybe two months to heal completely. I have recently begun to get it on my hands as well, but I've also found a few items that I thought were safe that I react to. It seems to be a reliable barometer for glutenization!

Celiacchick- I had a similar experience with vodka. I would have a mixed drink about every Friday night, then notice on Sunday or so that I would break out on my hands and just feel a little out of sorts. I finally figured out that pattern, and it's been fine ever since.

Also- my mom is awesome, and she made me a GF version of her famous cut-out sugar cookies for Valentine's Day (heart-shaped, pink frosting, etc.). I started feeling a little weird the next week as I devoured the cookies, so after a little searching I found out that the vanilla extract she used contains gluten. The company even said yes- it DOES contain gluten.

I know that both the vanilla and grain alcohol "myths" have been supposedly debunked, but I just want to warn you that they definitely still bother me!

I apologize for the length :)

Lindsay

P.S. I remade a batch of the cookies with GF vanilla. Heavenly.
At 11:33 AM, Jenn Sutherland said...: I love that this is a place where we can discuss our bodies openly! And I've never ever had a discussion about "the rash" in the 7 years I've been sharing my new food life with the people I love!

Mine cleared up within a year of going GF - I never was really conscious of its connection to gluten before it went away - it just always seemed like my hands and inner elbows were angry and blistery in the winter...which is when I would consume more gluten, when the farmer's market wasn't available.

I am struggling with a bit of a flare up of it at the moment - one cracked/blistery finger & a bad patch on my elbow that itches like mad...but I can pretty clearly trace that back to an evening out at a restaurant I hadn't previously cleared for safety, and though the waiter assured me my food would be safe, I see now that it wasn't. Oh well - its a good reminder of why I eat the way I do, and it will clear up in a week or so. I don't medicate for it, though - just work on cleansing my body more thoroughly.
At 4:36 PM, Anonymous said...: I'm the Dad of 4 year old girl who has Celiac's with DH.

I've read your blog for a while now, honestly? Mostly looking for recipes. I don't have Celiac's, I live a 99% GF life but I don't "have to".

Today, your post brought tears to my eyes. I don't have to have Celiac's to KNOW what you're talking about and I am so, so glad you write in a way that makes even me realize what it's maybe like to have Celiac's.

Please don't ever stop what you're doing and keep pushing forward with the movement.
At 11:10 AM, Anonymous said...: The island post is a favorite..I read it again yesterday. The texture on top of those cookies looks perfect!
At 12:22 PM, a kelly said...: I'm crying as I write this...connections, yes, connections...
I'm thinking of my GF Angel who asked the simple question: "Have you ever tried taking gluten out of your diet?". She was the new girl on the shift. That was last May. I feel like I have my life back. Imagine. One simple question.
And one day she came in and announced "I found Gluten-Free Girl".
Both of us have blogs now...hers is AMAZING!. Her first post was a cake named after ME!
And here's another cake that is the best I have ever tasted:
http://barrenwheatfield.wordpress.com/2008/02/28/vanilla-cake/

It's a wonderful gluten free life!!
alex
At 4:04 PM, DorianTB said...: Hi, Shauna! Just wanted to let you know I've been enjoying your Web site, and I just finished reading your GLUTEN-FREE GIRL book. I loved it! Not only was your story helpful and encouraging to a fledgling gluten-free gal (and writer -- business article ghostwriter by day, fiction writer by night :-)) like myself, but your writing style is a joy to read. You describe food with the kind of joyful lyricism that some people reserve for their lovers -- *brava!* Today, Booth's story struck a chord with me. I knew celiac ran in the Irish side of my family, but I never felt the symptoms of celiac until around 2002. At first, only barley and rye seemed to cause my symptoms, ranging from mild heartburn to severe stomach cramps, as well as joint pain, rashes, mood swings, and crushing fatigue, in exacerbating my migraines. I never thought it might be full-blown celiac disease until last year, when I got serious about following the Weight Watchers program. I began using my food journal to write down symptoms alongside the food entries. I soon realized that all wheat products gave me those symptoms. This was in January, and the soonest they could schedule an endoscopy for me was April, but I didn't want to feel sick and miserable for months, so I read everything I could find about celiac, as well as consulting friends who had it. When I began following a gluten-free diet, I felt a million times better--and when gluten got into my system through accident or carelessness, I felt even worse than I did before going gluten-free, which at least told me I was on the right track when I was steering clear of gluten. I only hope avoiding the stuff won't screw up my test results! By the way, what's the best way to store homemade gluten-free bread? I've been freezing or refrigerating it, which seems to work, although I always have to be careful that the airtight containers I keep the bread in doesn't collect too much condensation. But enough rambling -- thanks for sharing your experiences with the world and helping us gluten-free girls (and boys, for that matter) to live full, happy lives, Shauna, and good luck to you, The Chef, and Little Bean!

Dorian
At 4:14 PM, Lauren L said...: Hi Shauna,
This is my first time leaving a comment even though I read your blog avidly and read your book immediately after it came out! I had this enormous need to putter around in the kitchen yesterday, and after reading your post and seeing that recipe, I went immediately to the kitchen and made those cookies. (Going GF has made my pantry more well-stocked than ever, and so luckily I had everything on hand!) Please tell your (genius) friend how fantastic these cookies are!! My partner (who is not GF but who, wonderfully, eats mostly GF on my behalf) has cheerfully tried all of my GF baking concoctions (even the very first ones...which were not so tasty), but when I make chocolate chip cookies, he usually has just one and calls it a day. "It's not personal," he'll say, "it's just that I can't get the memory of that Tollhouse recipe out of my head." But these--these he ate up in moments. And get this: I had frozen half of the dough to have on hand, and when I came home this morning after running some errands, I found he had eaten some of that, too! Thank you, thank you for this delicious recipe! Anything with teff and flaxseed has my whole-hearted approval. We GF folks need as many whole grains as we can get.

Also, congrats on the little one!
At 4:29 PM, Anonymous said...: Hi, Shauna! Just wanted to let you know I've been enjoying your Web site and I just finished reading your GLUTEN-FREE GIRL book, and I loved it! Not only was your story helpful and encouraging to a fledgling gluten-free gal (and writer -- business article ghostwriter by day, fiction writer by night :-)) like myself, but your writing style is a joy to read. You describe food with the kind of joyful lyricism that some people reserve for their lovers -- *brava!* Today, Booth's story struck a chord with me. I knew celiac ran in the Irish side of my family, but I never felt the symptoms of celiac until around 2002. At first, only barley and rye seemed to cause my stomach cramps, joint pain, rashes, mood swings, and crushing fatigue, as well as exacerbating my migraines. I never thought it might be full-blown celiac disease until last year, when I got serious about following the Weight Watchers program. I began using my food journal to write down symptoms alongside the food entries. I soon realized that all wheat products gave me those symptoms. This was in January, and the soonest they could schedule an endoscopy for me was April, but I didn't want to feel sick and miserable for months, so I read everything I could find about celiac, as well as consulting friends who had it. When I began following a gluten-free diet, I felt a million times better--and when gluten got into my system through accident or carelessness, I felt even worse than I did before going gluten-free, which at least told me I was on the right track when I was steering clear of gluten. I only hope avoiding the stuff won't screw up my test results! By the way, what's the best way to store homemade gluten-free bread? I've been freezing or refrigerating it, which seems to work, although I always have to be careful that the airtight containers I keep the bread in doesn't collect too much condensation. But enough rambling -- thanks for sharing your experiences with the world and helping us gluten-free girls (and boys, for that matter) to live full, happy lives, Shauna, and good luck to you, The Chef, and Little Bean!

Dorian
At 8:02 PM, Vittoria said...: Just a quick not to Let Them (Not) Eat Cake: I've had the DH since I was very young, always diagnosed as exzema and I scratched my the tops of my toes so hard that I still have scars (that was 20yrs ago)
At 11:56 PM, Coach Laura Reifel said...: Shauna, you little devil! I go away for a family reunion and get caught up in teaching (final exams this week), and look what happens. Actually, after I met you and read your story and the story of your nephew, I had no doubt that you and the Chef would become parents, and expected a pregnancy announcement. I know it's hard on your end to hope and be uncertain but I was certain.

I hope that the rest of the pregnancy goes smoothly and can't wait to see a picture of Little Bean in person (or will s/he be like a celebrity child- pictureless?)

When I was pregnant I never had morning sickness, never threw up but I couldn't stand the thought of uncooked meat. I could eat it but could not walk through the meat isle of the grocery store and had to have hubby cook it (or buy it precooked). Funny.

Actually, foreshadowing celiac, I had a doughnut once when pregnant and had such bad stomach pains that I thought I was going to die! Spent 6 hours curled into a pregnant woman's fetal position. I thought it was the grease, but maybe it was the wheat. And once threw up after having pasta. Now I wonder, as I had celiac symptoms since I was 19 or so.

I've been fending off hordes of Girl Scouts this past week. I was a GS as a kid and always bought cookies. This year, in an attempt at education, I said "No, we all have celiac at my house- do you know what that is? We can't have any wheat- it makes us sick." Two of the moms indicated that they knew what it was but the kids all gave me blank stares. As I walked away, one said "No wheat? That is awful!" and I just had to laugh, because it's not awful, thanks in part to Shauna's recipes!

~Laura
At 8:39 AM, Gluten Free...licious! said...: OMGosh, I didn't know there were so many that suffered from DH.

Here's my DH story. I was about 6 months pregnant with my third child. I beleive this is the point where my Celiac was "triggered". I had always had "intestine" troubles, but chalked it up to IBS. I developed the rash which eventually covered my entire body, of course being pregnant, they would not give me anything, except the reassurance that it was a normal part of pregnancy and would go away after I delivered. I was miserable, the itching was so intense. I tried every cream on the market & OH yes, the Aveeno bath....I cried alot, would not go out because I was embarrassed by the way I looked. Thank goodness my family was supportive. I delivered, six weeks later the rash is still there. My OB/GYN didn't know at his point and sent me to a dermotologist. I was in the office all of 3 minutes, he told me it was eczema & gave me creams. None of which helped.

Then like a miracle I happened across an article in a parenting magazine about a mom and son who had Celiac. Every symptom matched mine including the skin rash. I phone my family doctor immediately & asked for a blood test. It came back positive and he sent me to a GI who did the biopsy. I was so excited for a diagnosis, however the biopsy came back fine. I had done so much research on the Celiac since reading the article, that I truly wanted to have it, so I would know what was wrong with me! He sent me to another dermatologist. He took one look at me and said I know it's NOT ecezema. Luckily he was familiar with Celiac and DH. He did some biopsy's and they came back positive for DH. Yeah, a diagnosis! My rash was so bad that he put me on Dapsone. To take this you have to be closely monitored by a doctor. I immediately went GF. In about 1 week the rash started to disappear & the itching was lessened. I continued the Dapsone until I was pretty much clear, then went off of it. Now, I'm just completely GF. I do have a patch on my right leg, right about my ankle that flares up. I have a prescription cream that I use on it when it does. I have to be very careful in reading ingredients not only on food, but also soaps, shampoos, make-ups, lotions, etc. It was hard to get used to at first, but know I feel so much better, I would never go back to gluten or wheat!

Thanks also for what you are doing. Celiac awareness has come such a long way since my diagnosis and that was in Jan of 2004!!!!

Lisa
www.glutenfreelicious.blogspot.com
At 9:57 AM, Shannon B. said...: You always write so lovingly about the world.

Do you think the reason that so many Celiacs believe it's a disease has to do with how often it's misdiagnosed? I know that the diagnoses process can usually be the most painful, once you know though, the journey can be strange but rewarding and many Celiacs have become empowered to help others (such as you have). I think those uncertain years (and depending on the severity of the diagnosis process) can have a powerful effect on the way people think about their bodies.

Celiacs are definately on my mind a lot lately. I work for a social networking site, Zeer, that is about to launch in late April/May. We are a product review & ratings site and right now we specialize in food products. We also have food communities. I've been trying to figure out how to make the community as helpful as possible to all food communities, including Celiacs. Though my journey began when I was at my old job (a travel company and I did a lot of research on traveling with food allergies) working for this company has really put me in touch with struggles of Cecliacs and other people with food intolerances.

It's funny, once you fall in with this community (whether you're researching it or have a loved one diagnosed or are Celiac yourself), you can't help but have a new lease on life. Celiacs have to be some of the strongest, most inventive, understanding people. I think once people glimpse a Celiac life, they can't help by want to share the experiences with others and try to improve the conditions for all people who love food :D
At 10:32 AM, sweetpea said...: Just made these cookies, they are the best ever! I have not worked with Teff before, what a gem! I am going to make them again this weekend when I go visit my brother in VA, who is also a celiac. NINA IS BRILLIANT and featuring a recipe from a good friend, well what a nice idea.
At 1:48 PM, Anonymous said...: More DH comments (and THANK YOU for mentioning it). After first going GF the rash improved within a few weeks, but then started to flare up much worse. I even had to go to the emergency room twice because my legs would swell up and I was so miserable I thought they might be able to help. No creams or antihistimines seemed to help and my doctor and I were apprehensive about Dapsone. It is now about 15 months of GF and things are 95% better.

I think some of it was mistakes about what had gluten (had to call my chapstick company to find out that the vitamen E was from wheat oil), and others was not speaking up clearly enough when others wanted to prepare food for me (you literally have to watch them prepare the meal and explain not to use that butter, cutting board, etc). Iodine did make it worse, so I avoided seafood and salty foods.

Those with DH are said to be more sensitive to gluten so have to be extra careful about contamination, shampoos, etc. Speak up for yourself ("yes, I really am that sensitive") and double check EVERYTHING. Ice packs and baking soda baths soothed my outbreaks when they were bad.

Also, as a resource, someone in the UK started a website: http://www.dermatitisherpetiformis.org.uk/ that might be helpful. Wonderful recipe resources on the web of course! Thank you Shauna. I'll try to have a sense of humor about answering questions about what happens if I get glutened, I'm usually very embarrassed about A RASH. Excited to get to wear short sleeve shirts again this year, I didn't expose my arms or legs outdoors ONCE last year :(

Thanks again and TAKE CARE everyone!

~Michelle
At 2:56 PM, Anonymous said...: My daughter Thanks you and Nina for these wonderful Chocolate Chip Cookies! At 5 she doesn't want fancy food... she wants the same food she used to eat... and I want foods that all the kids will eat and LOVE. We are farely new to this GF world and I use a lot of mixes, I am slowly learning to bring in my own flour combos. Baby steps... that's what its all about. On another note, I am fairly confident I also have celiac... I am debating whether to just go on the diet with my daughter or get tested first. If the tests are often WRONG... then what is the point? My daughter's first test when she was 9 months old was negative. Now she is finally healthy, but it took 5 years to figure it out. My youngest is 3 and has recently started with vomiting after eating, complaining of tummy aches and having bathroom issues. Maybe our whole house should be GF and not just K3. I enjoy reading your blog and hearing not just your story but all those that share on your site.

Cheers!- Jamie
At 4:10 PM, An artist name... Danielle said...: zShauna,

"Congratulations"~ about "little bean"... you are such an inspiration to me, realizing all things are still possible! May you and the chef have many more blessings to come.

I believe I might of started with "tropical sprue", while living in the South Pacific for eleven years. I do think my pregnancy triggered my "celiac"...
almost like getting gestational diabetes, but it didn't disappear after the birth. It wasn't until three years later, it was confirmed twice by a simple blood test that I indeed had "celiac sprue". Oh well, if that's my only problem then I am doing better then most!

A great product for "celiacs" is the calming lotion and the super sensitive lotion by California Baby. I also believe in unscented goat's milk soap. It helps to balance the skin's own pH level. Goats are grass fed and by chemistry more alkaline.

I have personally realized it's more then avoiding "gluten"; it's balancing one's pH level in what I eat, drink, and apply to my body.

Good Luck,
Danielle
At 6:38 PM, Anonymous said...: Great to hear of a table-side diagnosis, or at least, suggestion thereof.

DH is rarely the first symptom that patients with celiac come to their doctor with, but since almost nothing else causes it, it usually shouts out the diagnosis, but not the eloquence of the culinary treatment that Shauna prescribes.

They're a great example, these cookies, of culinary medicine: fabulous flavor folded into great health.

Warmly, and keep up the great work,
John
At 2:26 AM, Anonymous said...: Thanks, Nina, for the recipe. They are some of the best GF cookies I've ever made. Even my non-GF husband thought they were good ... and he expects a lot out of a cookie. (I cut back the sugar by 1/2 cup and found them plenty sweet enough. Someone mentioned Agave syrup. How could all that liquid be added to the recipe?)

Shauna, if with a bit of instruction your friend can make cookies that taste like these ... drop by our place any time your in the neighborhood!
At 12:05 PM, ChronicBabe - Jenni Grover said...: First, you're right: the recipe rocks. I made the cookies last night and they are absolutely delicious. With that chocolatey praise out of the way, I commend you on a fantastic post about the impact we can have on others when we speak frankly about our conditions. Like you, I usually don't announce to people that I have fibromyalgia, but I also don't hesitate to speak openly about it if the subject comes up - with friends or with strangers. Thanks for reminding folks that it's ok (heck, better than ok, try terrific!) to speak openly about their experience.
At 4:37 PM, Anonymous said...: I was diagnosed with celiac disease one year ago. I am 48 years old. I was on so many medications for my ulcerative colitis, arthritis, creams for my rashes etc etc etc. My doctor was on vacation during a particularly terrible flare-up. I had a different doctor look at me, introduced himself, really listened to my symptoms and said "you have celiac disease". He explained it somewhat. Told me there was very little information available, but there was "some" on the internet. Within a week I was feeling better than I had ever felt. I was hospitalized at 6 weeks old and it was diagnosed as lactose intolerant and ulcerative colitis. I feel free! I am not totally better - yet - but know it will take a while to undo the damage and I am realistic that some of the damage is permanent. All I know is that I am glad that my doctor was on vacation! He has since embraced the diagnosis, somewhat, but isn't totally satisfied yet! Give him time! I love your website. It gave me hope when I had none. I am a single mother of three children. We are all eating gluten free - because I am not a short-order cook! Your recipes have put a smile back on my 16 year old twin boys faces! They were missing some of the sweets. I've learned to use herbs through this site as well. Thank you so much. In my area of the US (midwest) there is very little available in stores and the doctors in my area have no clue. I have showed them many websites and asked them to become educated so they can help others who are needlessly suffering!
At 6:33 PM, cjkuehl said...: I made Nina's cookies this weekend for my boyfriend. They were a huge hit! We both loved the chewy texture and had a really hard time letting them cool enough to get firm before we ate them. We used dark brown sugar so they still had a bit of the molasses-y flavor but they turned out much darker than the cookies in your pictures. Many thanks for the wonderful recipe!

I brought some to work for two celiac co-workers and was declared "Holy Mother of Baked Goods"! Now my office manager and laboratory technician know where to go to find your wonderful recipes: )

Thanks for sharing!
Carole
At 12:20 PM, Anonymous said...: I just Love the Internet and how we can all share and help each other... Thank you for your contribution!
At 3:40 PM, Dr. Stephen Wangen said...: Shauna,

It is good to hear how you were able to help your friend Booth. As you probably remember from our support group meeting, many of my patients went for a long time (until they saw me) before getting a useful diagnosis. Some of them got a lot better on a gluten-free diet, but a few find that it is not enough. That persistent rash could be another food allergy. I see that quite frequently. Usually a little fine tuning is all the person needs to get back to 100% healthy. As always, thanks for writing a great blog and educating people everywhere you go.

Hope to see you again soon.
At 9:09 AM, Kristin said...: Hi, I am a lurker on your blog. I just got diagnosed with celiac after a stomach biopsy a month ago.

good blog. being gluten free isn't that hard so far, i think perhaps because i feel so much better when i don't eat it. chocolate chip cookies are a problem for me. i have just been substituting 1/2 teff and 1/2 buckwheat flour for regular flour and it works pretty well.

i basically gave up trying to eat gluten free bread because i haven't found one that is really bread, per se, and i realize that i would rather have rice or some sweet potatos anyway.

i am just blathering now but i love reading your blog, just to know that you are out there "doing the deal", as they say...
At 3:55 AM, vegetablej said...: Hi Shauna and The Chef:

Congratulations on adding to your family. I'm sure the little one will be growing up with finely-tuned taste buds. :)

I'd like to add my voice to those saying that likely Booth is suffering from another allergy that he hasn't identified. In my case it is avoiding both gluten and dairy that keeps my hands clear. I can have the tiniest bit of dairy but more than that makes my hands crack immediately, and the gluten causes the terribly itchy rash that makes life miserable.

Perhaps you might remember(from my blog) that I spoke about being on strong steroid creams for around 45plus years before I discovered a cure after reading your website and deciding to remove gluten foods as a test. It was the happiest "accident" of my life.

I clearly remember the intense itching and lack of sleep. What used to work for me was using a topical "numbing lotion" marketed as a first aid or insect bite remedy. In Japan we have one called "Una Cool" that works very well. It contains menthol as well as the numbing agent. It stings when it goes on but is entirely worth it to get a little relief. You might need to re-apply it fairly often during an acute attack. I wanted to share this tip as it made sleep possible some nights when nothing else worked.

Good luck to Booth and all the people commenting about their skin problems. I empathize most deeply; may you all get clear soon.
At 8:27 AM, Shauna said...: I love this community. Thank you so much for sharing your stories. Never having suffered from DH, I didn't realize what misery it was until I met Booth. And now that I've heard your stories, too.

I've learned so much.

Thank you, everyone.
At 9:30 PM, Sarah said...: Darn! I was just visiting my mom in Seattle and passed up going to Cafe Presse. That salad sounded amazing! I was curious (as I am pregnant as well - congratulations BTW!) about the aioli. I have been craving it on roasted potatoes, but I was told to stay away from raw eggs. I have a friend with organic free-range chickens, so I usually make it with those eggs. What's your stance? Thank you! Sarah
At 11:20 PM, cccconnoisseur said...: After weeks of poking around blogs and websites i was so inspired that I decided that Shauna's will be my first post ever.

I do not have celiac disease but I have many of the symptoms that celiacs suffer from. I confess that until reading this blog i had no idea that celiacs suffer from the terrible itchy rashes. I feel for those of you who have it. I'm allergic to poison oak and i grew up in the woods so i had it all the time and often woke with blood under my nails.

i gave up wheat and dairy after i developed hashimotos (thyroid disease) and rosacea and just plain got sick of being sick all the time. My life changed. I could sleep, I woke clear headed and perky, my skin was great and my joints felt great...and the bonus was that i shrunk--I was no longer so "puffy."

however, I have fallen off the wagon many times much to my regret and mostly because i LOVE to bake! So, finding blogs like yours are real life motivators. thank you shauna for your site and all of you for posting.

But my name is not chocolate chip cookie connoisseur for nothing. I'm obsessed with finding the perfect recipe. I made ninas cookies tonight and while i really like the recipe (the dough is delicious!), I was wondering if other people find teff flour grainy (also darkens the dough)? Anyone tried a different flour that still makes chewy cookies? I love that the recipe has flax seeds in it. Makes me feel almost virtuous.

btw, i chop my own "chips" making a mix of 1/2 bittersweet and 1/2 semisweet. you can't beat great chocolate!

Ruth
At 8:32 AM, Anonymous said...: Just wondering if Ruth the "CCCC" is using Ivory Teff flour. There is also brown Teff, and there is whole grain Teff, which is brown as well. I bake with Ivory Teff flour. It is not as white as white flour, but certainly in league with whole wheat. I believe that the Muscovado sugar darkens the dough more than the Teff. I've been baking since I was a kid- and I'm in my mid-forties now. I've experimented with most of the alternative flours and nothing works like Teff if you are gluten-free.

I'm working on pie crust now. I just made my first crust that did not need eggs to hold together. The main ingredient was Teff flour, of course. Sure it is slightly sand (think Pecan Sandies- remember those cookies?) but it has properties that no other gluten-free flours do.

I'm glad you like my dough... let me know if you do discover an alternative to Teff.
Cheers and happy baking- Nina
At 8:14 AM, Unknown said...: I made the chocolate chip cookies over the weekend and I have to say mine weren't the greatest. They were very dark and spread out flat all over the cookie sheet into one big cookie! I used dark brown sugar because I couldn't find Muscovado anywhere. I used Teff flour that I found at the health food store - I didn't know there were different kinds of Teff flour? It looks like whole wheat. Also used ground flax seed. The texture was very grainy/nutty. When I brought them into work in a baggy they just fell apart into cookie crumbs. Any suggestions out there?
At 10:50 AM, Anonymous said...: For Theresa- Little things do make a big difference in baking. Muscovado sugar is a much better binder than dark brown sugar. It is worth seeking out. Ivory Teff flour can be purchased from the Teff Company online.

The only other thing I've discovered about baking is that using previously frozen butter will make cookies spread. I only use fresh butter and let it soften, do not melt it before mixing it with your other ingredients.

If you try again with the ingredients listed- it should work like a charm. The cookies will have a sweet nuttiness- the ground flax seed meal does add that, and of course walnuts do, too.

Don't be discouraged!
At 7:12 PM, Anonymous said...: New to your blog and saw some comments about chocolate chip cookies. My daughter has Celiac and we use Annalise Roberts book, Gluten-Free Baking Classics for all of our baking needs. Her recipe for chocolate chip cookies is fantastic -- dare I say better than the gluten ones (a little lighter). They also received a rave review in Gourmet mag. All of her recipes are incredible -- cakes, muffins, biscuits, cookies, etc. It's available on Amazon. I don't even mention that they're gf. Her book is a life-saver for my little 5 year old.
At 4:29 AM, Anonymous said...: I'm also very sensitive to wheat/gluten too. I've never been officially diagnosed either. However, I did some research regarding my heart condition I've had since birth and found out that wheat/gluten sensitivity is extremely common. Anyway, I saw your posting regarding chocolate chip cookies that are made with teff flour. I just wanted to post about a wonderful baker whose gluten/wheat-free cookies I just bought and tried yesterday. We ordered her Vegan Peanut Butter Cookies and they are AMAZING!! Seriously, I also have to admit to them also already being almost gone too! ;) I don't eat a lot of desserts because of being sensitive to wheat. I admit to having become frustrated with my lack of options, but it's been possible for me to have the pleasure of meeting this young woman who is a professional baker and also wheat/gluten-free too! I also want to add that she's such a wonderfully sweet person!! : ) I can't say enough good things about her. Here's a link to her website for more information. She bakes ALL of her desserts with fresh ingredients and from scratch too! Her name is Sunshine and she makes items especially for those of us on special diets such as (gluten/wheat-free, lactose intolerance, vegan, and/or vegetarian) she even has a cookie recipe for children/adults who are allergic to peanuts as well. Finally, she makes cakes and breads too! I'm so excited to be eating my first birthday cake in close to 10 years because of Sunshine!!!

http://www.sunshinesbest.com/
At 4:32 AM, Anonymous said...: I'm also very sensitive to wheat/gluten too. I've never been officially diagnosed either. However, I did some research regarding my heart condition I've had since birth and found out that wheat/gluten sensitivity is extremely common. Anyway, I saw your posting regarding chocolate chip cookies that are made with teff flour. I just wanted to post about a wonderful baker whose gluten/wheat-free cookies I just bought and tried yesterday. We ordered her Vegan Peanut Butter Cookies and they are AMAZING!! Seriously, I also have to admit to them also already being almost gone too! ;) I don't eat a lot of desserts because of being sensitive to wheat. I admit to having become frustrated with my lack of options, but it's been possible for me to have the pleasure of meeting this young woman who is a professional baker and also wheat/gluten-free too! I also want to add that she's such a wonderfully sweet person!! : ) I can't say enough good things about her. Here's a link to her website for more information. She bakes ALL of her desserts with fresh ingredients and from scratch too! Her name is Sunshine and she makes items especially for those of us on special diets such as (gluten/wheat-free, lactose intolerance, vegan, and/or vegetarian) she even has a cookie recipe for children/adults who are allergic to peanuts as well. She also makes various breads and cakes too! I'm so excited to be eating my first birthday cake in over 10 years soon because of Sunshine.

http://www.sunshinesbest.com/

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13 March 2008

how connections led to chocolate chip cookies

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