Streams

Finding a Way to Live with Celiac Disease

Monday, April 28, 2014

Jennifer Esposito, actress, founder of The Jennifer's Way Foundation for Celiac Education (JWF) and the Jennifer's Way bakery and author of the book Jennifer's Way: My Journey with Celiac Disease--What Doctors Don’t Tell You and How You Can Learn to Live Again (Da Capo Lifelong Books, 2014), talks about the long road from sufferer to advocate for others with celiac disease and gluten intolerance and her sideline . . .as an actress in shows like Blue Bloods and Rescue Me.


RECIPE: Pumpkin Hazelnut Chocolate Chip Pancakes

Ingredients:

1/2 cup sorghum flour
1/4 cup brown rice flour
1/4 cup hazelnut flour
1/2 cup potato starch
1/2 tsp. Himalayan sea salt
1/4 tsp. xanthan gum
1 tsp. vanilla
1 tsp. cinnamon
1/2 tsp. fresh ground nutmeg
1/3 cup puréed pumpkin
2 tbsp. grape seed oil
1 1/2 tbsp. of maple syrup
1 cup rice milk
1/2 cup water or less depending on batter how thick or thin you like pancakes. Opt for the thicker.
Grape seed oil for pan or earth balance
Choc chips (as many or few as u like)

Directions:

- Combine in a bowl all dry ingredients and whisk out any lumps

- In a medium size bowl mix together all wet ingredients, except the water

- Slowly mix the dry ingredients to the wet ingredients to create a smooth batter Add water a little bit at a time into the batter and mix as you go. NOTE: If you like a thinner pancake add more water, for thicker pancakes add less. (I recommend keeping the batter not too thin or they won’t cook properly)

- Heat your skillet or griddle to medium.  Spoon or pour in your batter to your preferred size. Cook until surface of pancakes have some bubbles and a few have burst, 1 to 2 minutes. Flip carefully with a thin spatula, and cook until browned on the underside, 1 to 2 minutes more.

From the book Jennifer's Way: My Journey with Celiac Disease--What Doctors Don’t Tell You and How You Can Learn to Live Again. Copyright (c) 2014 by Jennifer Esposito. Reprinted by permission of Da Capo Press. All rights reserved.

Guests:

Jennifer Esposito

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Comments [22]

Raquel from Delaware

I may or may not be a Celiac since I hate doctors and therefore avoid them at all costs, and I'm new to the gluten free life, having started March 1st. Does it make me somehow less 'legit' if I'm not a confirmed Celiac? Do I care? Not a whit. I didn't even know what Celiac was or that going g/f was a 'fad'. All I knew was that I'd suffered enough and was going to get to the bottom of this and after going 'this-free' for a few weeks, and then trying 'that-free' for a few weeks, I hit it on my 3rd try - after 14 days of being wheat free with the big symptoms improved by 90% I was pretty certain this was my problem. I'm on a high of feeling so good after so long of feeling so bad, I'm pleased as all heck that I didn't put myself through an ordeal with the medical establishment and saved a bunch of money at the same time, proud to be my own best advocate and I boldly include myself in the g/f community for educational purposes and comraderie whether I'm wanted or not LOL!

Apr. 29 2014 09:01 AM
Dumpling15 from Raleigh NC

Jennifer's outreach has led to such positive changes in my life. Diagnosis is so hard...my ulcer in my small intestine led me to a false negative for celiacs. With out wheat my life is so much better--- well now without gluten in my diet for 2 years. I am now unable to use mascaras, shampoos, etc. But my day to day life is so much better. I am no longer taking allergy pills & mucinex throughout the day. My nails and hair are stronger and growing faster. My brain is so much clearer.

Apr. 28 2014 09:00 PM
Peg

Eating anything made with ground up whole foods is eating processed foods. Flours from whole foods are highly likely to become rancid as time from grinding lengthens, because they contain the living germ cells that die as soon as they are exposed to air. Rancid organic whole grain flours that are prepackaged are not very healthy and can be sometimes very unhealthy.

I didn't listen to the beginning of this segment so I don't know if Jennifer grinds all her flours on site, but it would be good if she does. Also, bakery goods are a Treat. They are not necessary for nutrition and certainly don't have to be an integral part of a meal. So I think it's totally appropriate to charge high prices for an enjoyable sensation. Once you start to eliminate breads, desserts and sweets from your diet, you'll be amazed how sweet that gorgeous plate of broccoli tastes.

If you suspect that you have a dietary problem because of the foods you choose, often the path to "what works for me" can be long and daunting, Once you find a diet that works for you personally, you'll get better and better at preparing your meals efficiently. A whole food diet does not have to be expensive even if the organic options cost more. When you are getting good nutrition, you don't need to eat those huge American portions.

Apr. 28 2014 02:11 PM
nava from Israel

Anything related to cliac

Apr. 28 2014 01:04 PM
Katherine from Brooklyn

Paul, I couldn't agree with you more. Most wheat, soy and corn grown in this country now is GMO. Although I don't have celiac, I have developed an intolerance for gluten, and I suspect GMO foods have something to do with it.

Apr. 28 2014 12:31 PM
Paul

Shannon, read the original comment again. I didn't say there was no Celiac disease before the new varieties of wheat appeared. But there IS something different happening with the new wheat. A different kind of wheat intolerance. It's not Celiac, but people are too ready to assume that it is because there is this label already available. A proper diagnosis, as was well explained on the segment, requires a biopsy of the small intestine. Most of the other tests are unreliable. It is a mistake to simply decide you must have Celiac if you are having troubles with wheat products. It might not be the gluten you are reacting to, but something else in the wheat.

Apr. 28 2014 12:31 PM
shannon

sbugrnutr you are correct that Paul mentioned gluten intolerance. He also stated that he did not know if Jennifer had Celiac or not and stated that it is quite rare in his comments. This is what I was talking about. That is all... I am certainly not an expert on gluten intolerance and I think that medically, we are still unsure what is causing the increase in gluten intolerance. There are many who think that this is causing the increase in Celiac - I tend to disagree with that. It has always been there, the medical profession has simply been ignorant to looking for it.

Apr. 28 2014 12:24 PM
jm

sburgernutr: I make them from scratch and just use the tapioca starch you can find in Asian grocery stores, along with parmesan. The recipes slightly vary, but all contain eggs which is the essential ingredient for the chewy texture. I'm neither celiac nor even slightly intolerant, but I've found that my friends who are sensitive really enjoy these as a treat.

I once made a gluten-free cake from a reputable organic box brand to supplement some conventional cakes for a family reunion. The two celiacs really enjoyed the cake and had a few pieces. I tried it for fun and it tasted like garbage! That's why I take an interest in fun foods that are not only safe for celiacs but also objectively delicious, not just "pretty good for gluten-free."

Apr. 28 2014 12:24 PM
mary from east village

btw, jennifer, if you read these comments, i just saw your interview w/ dr drew. i hope you post that somewhere on your website showcasing how trained doctors often callously overlook gluten allergies. His interview/interrogation really underscores some of the issues with why so many people suffer with the symptoms you spoke of today. Though I can't afford your bakery in all honesty, the way he treats you in that interview does a real dis service to the valuable information you are actually trying to share. Best of luck to you.

Apr. 28 2014 12:16 PM

Shannon - Paul mentioned gluten intolerance, not celiac disease. They are NOT the same.

Apr. 28 2014 12:08 PM

jm -

Cassava actually has very little nutrition in it. It is about as nutritious as eating cardboard or sawdust.

I don't know about Brazilian varieties of cassava, but the variety I ate in the Congo was the "bitter" kind. They had to soak it for three days to get rid of the thiocyanate in that kind of cassava. Even so, there was enough thiocyanate left that it inhibited iodine absorption. As a result, goiters (swelling of the thyroid gland) and even cretinism (severe physical and mental retardation) from iodine deficiency. The area generally was low in iodine but those who ate more of the cassava had higher rates. In some villages near where I lived, a doctor 100% of the adults had goiters.

So while I will sometimes eat those overpriced, cassava, sweet potato, chips because they taste good - probably because of the salt and the psychologically satisfying crunch. I harbor no illusions about them being nutritious. I would assume that it is the CHEESE that makes that bread delicious and provides some nutritional benefit to those who are not allegic to cow's milk proteins.

Apr. 28 2014 12:07 PM
shannon

In response to "Paul" - Celiac Disease was first mentioned in literature in the 1st century AD by a Greek physician so your theory about "new" wheat causing this is incorrect. Celiac disease is an autoimmmmune disease in which gluten triggers an autoimmune response in the small intestines of those who have the disease. It is NOT as rare as you think it is. 1 in 130 people is afflicted with this disease.... there are more people with Celiac Disease than Parkinsons disease, multiple sclerosis, cystic fibrosis and Crohn's disease combined! Jennifer Esposito is someone who has Celiac Disease as am I. I am a medical provider (recently diagnosed with Celiac Disease at the age of 50) who was trained that Celiac Disease is found only in children who have diarrhea and/or failure to thrive. This is why so many people are unaware that they have it. This is also why people like Jennifer Esposito and myself (and many others) are trying to get the word out. There are many people walking around with migraines, chronic fatigue, unexplained infertility, chronic heartburn, diarrhea or constipation, anxiety, depression and even seizures who are undiagnosed with this disease.
So you see... there is so much more to this story than the "new wheat". Those with Celiac Disease also cannot tolerate Barley, Oats or Rye as well. They all trigger the same autoimmmune response within us that makes us at risk for so many things from malnutrition to lymphoma.
I am thankful that there are those out there that are taking this disease seriously and helping to get the word out! Many thanks to Brian Lehrer for helping to get the word out!!

Apr. 28 2014 12:02 PM
Amy from Manhattan

Many kosher-for-Passover products are now prominently labeled gluten-free, & at least some rabbinical authorities actually include gluten-free as a criterion to tell what products can be eaten during Passover. If you can still find Passover products (aside from the ones that are made w/Passover wheat flour), they're a lot cheaper now that Passover is over.

Apr. 28 2014 11:59 AM
Peg

Gluten free bread and pasta are not good for you either. Grinding up anything is PROCESSING. The longer the time between the grinding and the eating (as in pasta products, breads and baked goods) - the less nutrition and more chance for rancidity you get. Eat the low gluten grains WHOLE - as in brown rice - and make sure to eat the ground up stuff only occasionally.

Apr. 28 2014 11:58 AM
Andrea from Manhattan

I understand that celiac disease can be very debilitating and produce a range of symptoms. One question I have always wondered is this: we all get ailments, such as stomach bug, various aches, etc. How does a celiac sufferer know when to attribute an ailment to celiac, and when it's something else?

Apr. 28 2014 11:58 AM
John A from The Munch Haus

Are there fad disabilities? And I'll leave it there.

Apr. 28 2014 11:57 AM
jm

Pao de queijo (Brazilian cheese bread) is a delicious cassava flour-based gluten free recipe that non-celiacs love as well. You can get the mix in the Brazilian section of a place such as Trade Fair, or make from scratch.

Apr. 28 2014 11:55 AM

Paul- that is very interesting. One of my friends recently has had to change her diet because she has gluten intolerance. She also has a peanut allergy, but the specialist she went to said that peanuts have dramatically changed as well and the new varieties have changed in ways that people are allergic not to the peanuts per se but to some of the substances that have been altered with recent breeding.

Apr. 28 2014 11:54 AM
mary from east village

Ive been to Ms. Esposito's bakery a few times. It is ridiculously overpriced and I found the cafe environment a bit soho'ish snobby and the staff rude. But I am a long time east villager and the east village that I knew is no longer around, at least not near this bakery...I wish Ms. Esposito the best though.

Apr. 28 2014 11:52 AM
superfancy

OK -- "Yehuda" brand Gluten-Free Passover Matzohs -- plain, onion, garlic. Made not of wheat but potatoes. World's best potato chips! (I'm not gluten-senstive -- in fact I put extra gluten in my bread. I bought these because they were on sale, of course.) You're welcome ;-)

Apr. 28 2014 11:49 AM
The Truth from Becky

I had no problems until I reached 30!

Apr. 28 2014 11:47 AM
Paul

The recent increase in supposed "gluten intolerance" is actually a rise in a more general wheat intolerance. We don't pay much attention to food production unless it involves literal GMOs, but even though GMO wheat has not yet been approved for public consumption, wheat itself has changed dramatically in even the last few years. Ordinary plant cross-breeding has been used to create new varieties that produce more per acre, and the end product is not at all the same as it was. Some people who do not have actual gluten intolerance are still unable to tolerate these new types of wheat.

I don't know if Jennifer Esposito has "real" Celiac disease or is simply one of the people who cannot handle the new wheat. But the issue of the new types of wheat needs to be mentioned so people who have noticed they have problems when eating wheat products don't just assume that they have a very specific condition that is actually very rare.

The end result is the same, of course. Production volume is everything to the industrial food system. Since the old types of wheat will not be commercially available any more, people who cannot tolerant the new wheat will have to go on a wheat free diet unless they can grow their own heritage varieties of wheat.

Apr. 28 2014 10:33 AM

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