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My wife has Celiac Disease. I started this website as a way to record some of the information that I am learning along the way, and to help others who suffer from Celiac Disease by having a dependable resource for that information.
Every once in a while, I stumble upon something in the crowd funding sites. This time, it’s on the IndieGoGo site. It’s a campaign for something called the TellSpec. That doesn’t really tell you much. Especially anything about why it might be revolutionary for Celiacs.
Try this on for size:
You want to know what’s in your food before you buy it, before you order it, and before you eat it – because your health depends on what you eat.
Many foods contain chemicals and allergens that we want to avoid. But it can be difficult to know whether these chemicals and allergens are in your food or not. How can you tell if your food contains the nutrients you need? What about things like sodium, gluten or trans fats that you might be trying to avoid? Food labels can give us some information if they’re available, but they are not always intelligible and some ingredients may not even be reported.
We have invented a system called TellSpec combining a spectrometer and a unique algorithm to tell you the allergens, chemicals, nutrients, calories, and ingredients in your food.
It’s small enough to fit on a keyring. It communicates with your cell phone. You push a button, it uses it’s spectrometer to get a reading off of the food, then sends that reading to a server. That server puts the reading through it’s database, and returns a list of ingredients based on that reading.
Potentially, you could take a reading off of the food you’re about to eat at a restaurant, and know, nearly instantaneously, whether it contains any gluten. If it delivers on that, it really would be revolutionary for anyone with Celiac Disease.
Of course, it will depend on just how sensitive it really is. It can find the gluten in a slice of whole wheat bread, but can it find the gluten from a cross contamination? Can it determine if the soup you’re about to eat was thickened with flour? Can it tell you whether the seasoning on your steak contains gluten? If it’s sensitive enough to do those things, it will truly be one of the most revolutionary things to happen for Celiacs in years.
Right now, you can contribute to the campaign and receive a TellSpec before they’re made available to the public. It requires a $200 contribution, and only until about 195 more of the $200 contributions are made, then it will be going up to $250. I didn’t see anything that indicated how much the price would be once it was available to the public.
With Halloween less than a week away, you’ve likely started thinking about all the candy your kids are going to get and how to sneak some of the gluten free halloween candy out of their pile and into yours. What you also are starting to think about is the tasty desserts that will abound after dinner, and how you’ll make them gluten free.
Our friends over at Udi’s Gluten Free (and really, any Celiac sufferer’s friend) were thinking the same thing. So they sent us over a little care package of gluten free goodies to see what we’d come up with for great tasting desserts. Unfortunately, the stuff was just too tasty and none of the items lasted long enough to become desserts, but we had some great ideas anyways!
The treats in our Udi’s Halloween Treats package
As you can see on the right, we got pretty spoiled with good stuff. There’s a loaf of Udi’s Cinnamon Raisin bread, a box of Udi’s Chocolate Chia Muffin Tops, a bag of Udi’s Vanilla Granola, a box of Udi’s Snicker Doodle cookies, and a box of Udi’s Dark Chocolate Brownie Bites.
Some of our favorite ideas were to make a nice bread pudding out of the bread. Cinnamon and raisins are staples in bread pudding, so that was the first idea that popped into my head. Udi’s has a nice recipe for a Maple Raisin Bread Pudding on their site. It’s not commonly thought of as a dessert, but I think you could make some very good french toast dipping sticks with these. A nice dusting of powdered sugar, and some syrup or sweet whipped cream to dip them in.
Udi’s granola is a pretty versatile staple in our house. We use it all the time mixed into a cup of yogurt, but I think it would make an excellent topping for a fruit crumble. A little brown sugar, melted butter, and some Udi’s granola sprinkled liberally over your favorite crumble recipe. Yum. A simpler use might be just putting it directly onto ice cream or frozen yogurt.
The dark chocolate brownie bites are a pretty tasty dessert by themselves, but I really want to try them warmed up at the bottom of a bowl of ice cream with some fudge drizzled over the top. They’re just the right size for making the popular cake pops with as well.
Snicker Doodle cookies are a pretty universal treat. They’re good as is, but they can be used in all kinds of desserts. Crumbled, they make a great crust for a cheesecake, or pumpkin pie. They go well with ice cream and are one of the key ingredients, along with the Chocolate Chia muffin tops, in Udi’s recipe for Snickerdoodle Ice Cream Chocolate Whoopie Sandwiches. Which brings us to the muffin tops. As I just mentioned, they lend themselves really well to whoopie pie sandwiches. Frosted orange, they become pumpkins.
With the abundance of gluten free products on the market now, eating gluten free isn’t the bland wasteland that it used to be. Companies like Udi’s are pioneers in making gluten free food that tastes as good, or better, than it’s wheat based brethren. Whatever your plans for Halloween, make it a safe one. Not only on the streets, but in the kitchen as well.
A recent study, published in The American Journal of Clinical Nutrition, tested 15 different cultivars of Quinoa for both gluten and for any immune system response to the Quinoa in Celiac patients. The results:
Fifteen quinoa cultivars were tested: 4 cultivars had quantifiable concentrations of celiac-toxic epitopes, but they were below the maximum permitted for a gluten-free food. Cultivars Ayacuchana and Pasankalla stimulated T cell lines at levels similar to those for gliadin and caused secretion of cytokines from cultured biopsy samples at levels comparable with those for gliadin.
What does that mean? Well, really not much. 4 of the cultivars had testable levels of gluten, meaning their test had results. However, all of those that returned those results were below the 20ppm which is used as an acceptable level of gluten to be called gluten free. Further, of the 4 that had testable levels of gluten, only two of them caused any sort of reaction at all in the patients.
They conclude by saying that more testing needs to be done.
Obviously, I don’t think the results of this study are anything to panic about. Of the 15 cultivars tested, all had below 20ppm results. I’m not sure if there’s a way to avoid the 2 cultivars that cause some reaction. As the NFCA noted in their article (here) on the same study, it serves as a good reminder to check the labels of anything that you’re planning on eating to make sure that the ingredients are gluten free, and have had as few chances of cross-contamination as possible.
Huffington Post is reporting on a study that was published in the Journal of the Academy of Nutrition and Dietetics where they used green banana flour to make pasta with some surprising results.
For the study, researchers had study participants (50 of them without celiac disease, and 25 with celiac disease) compare whole wheat pasta made with eggs, with pasta made from green banana flour, egg whites, gums and water.
Both the testers with celiac disease and without celiac disease said that the banana flour pasta was overall better than the whole wheat pasta.
Gluten free pasta that tastes as good or better than wheat pasta? Sounds yummy! As a non-celiac, I’ve found that I prefer the rice pastas to the wheat pastas anyways, but I can’t help but think that the green banana pasta would be even healthier for you.
Now, how long before this stuff hits the shelf, do you think? The research was done in Brazil, so it could still be awhile before it hits U.S. stores. Things just take longer here, it seems. Would you give it a try?
If you’re not aware, the pizza maker, Dominos released what they are claiming as a gluten-free crust about a week ago. Part of the release is an endorsement from the NFCA. It also comes with a huge disclaimer about the potential for cross contamination and states that people who have Celiac or who are eating a gluten free diet should not eat the crust because of that cross contamination. The endorsement by the NFCA is an “Amber” endorsement. Basically, an endorsement that it might be ok for people who are slightly gluten intolerant to try it. And an endorsement of the fact that Dominos tried.
The group behind the 1in133 organization says yes, they tried. They tried to dupe a whole bunch of people who have to eat gluten free into trying to eat a pizza that they claim is gluten free. They tried to dupe a whole bunch of people out of money and make them sick at the same time. 1in133 has started a petition to ask NFCA to stop using the Amber endorsement altogether. In short, they want an endorsement from a gluten free advocate to actually mean that the food is gluten free and isn’t just a good try.
I’m signing it. And you can too.
Sign the petition and tell NFCA to ditch the Amber endorsement.
Dr. John J. Zone M.D.
University of Utah
Skin Manifestations of Celiac Disease
Starting off by polling the crowd on different skin disorders and whether they are related to Celiac or not. Seems to be quite a few who likely have DH (Dermatitis Herpetiformis), but maybe don’t know it.
Auto-immune diseases “travel in families”, if you’ve got the genes for one, you may get other auto-immune diseases that are in the same “family” of auto-immune disease. You may not have Celiac, but may have a thyroid disease. About 20% of Celiac sufferers will have thyroid disease.
Over a lifetime, women eat pounds of lipstick. What you lick, you swallow. What you breath in, you swallow. Shampoo; there is no evidence that gluten in your shampoo will affect you, through absorbtion. Unless you have a sore or lesion in your scalp. Gliadin is too large to be absorbed through the skin.
Don’t assume that it can’t be transferred however. Anything that hits a mucous membrane is likely to be absorbed. So, transfers from shampoo to hands to mouth, eye shadow that gets in the eye, etc, can be absorbed and could affect you.
HLA and Celiac Disease
90% of CD and DH patients express HLA DQ2
9% express DQ8
1 in 3 people who were self diagnosed Celiacs, were tested and did not have the gene, and could not have had the disease. (From a study of 69 people Dr. Zone tested in his lab)
It’s a lifetime disease, take the test and be sure.
DH is a cutaneous manifestation of cd that is best diagnosed by identifying granular IgA in dermal papillae. All DH patients have some degree of CD and DH patients are likely to reflect the entire spectrum of histological and clinic CD in adults.
*Editors note. I had an appointment to keep, so had to leave the conference a bit early, and so missed the latter few minutes of Dr. Zone’s session as well as the last session of the day. Once I get a bit of time, I’ll be doing some quick articles on some of the vendors (new good food!) and on the conference overall.
Dr. Joseph A Murray
Mayo Clinic (mayoclinic.org)
Complications and outcomes of celiac disease
What happens after diagnosis
-key role in gluten in celiac disease was unknown. Therapy was low fat diet and vitamins
-Death was common
-emaciation due to persistent diarrhea
-dehydration and severe malnutrition
-high mortality in childhood
-mortality was approximately 36%, now, at about 0.4%
Howland, and 3-stage diet was done in 1929 and excluded carbohydrates rigorously. Was beginning of suspicion that there was something in carbohydrates. Before Gluten was discovered.
Because of villi damage, and inability to digest other foods after damage, many other foods have been blamed for symptoms. Carbohydrates aren’t to blame, Gluten is.
-After description “wheat factor”: Mortality ~1%
-Malignant Lymphoma in CD (1957,1962)
-Cancer: big killer
-Death during adulthood
-Celiac not used as cause of death
Outcome is better now.
-recognition of gluten intolerance as a chronic and persistent order.
-discovery of gluten as the environmental factor responsible of celiac diseas
Self injury, willful ingestion of gluten is possible reason for increased mortality ratio.
Anger, denial, etc are part of the grieving process, but working towards an acceptance stage is necessary. Mental symptoms like ataxia are common symptoms and can cause psychological regression through process.
Patients die often from cardiovascular reasons. It’s no longer ok to just avoid gluten. You must avoid gluten healthfully. Be aware of ingredients other than gluten. Especially those high in salt, sugar, fat.
Older patients should get pneumonia shot at 50 and likely again at about 65 as risk of respiratory issues is higher in celiac. Shingles shot is important.
Lymphoma in Celiac
— Italy: increased risk of 3%
— Europe: increased risk of 2.6%
Standard of Care
-strict gluten free diet
Gluten free diet could be protective
-Improvement seen in biopsies after just a year
-Children heal faster, adults heal slower
-Healing is gradual, not all at once.
-Failure to heal can cause further issues
-Warren Air Force Base Cohort
-Increased mortality rate of 4X in those with undiagnosed celiac
In another study, patients with undiagnosed celiac after age 50 had virtually no increased risk of mortality.
Only about 5% of undiagnosed celiacs will be diagnosed.
DQ2/8 test positive does not mean that you have Celiac.
-Gluten Free diet “changed the game”
-diagnosed celiac disease is associated with modest excess mortality
How to convince relatives to be tested?
Carefully. They don’t have a choice in whether they have Celiac or not, but they have a choice in whether they know or not.
Thanks Dr. Murray!
Dr. Peter HR Green MD
Gluten Related Disorders
-Gluten Sensitivity (non-celiac)
-exercise induced wheat allergy
-Gluten Free product consumption has increased over time and currently is higher than low carb and low fat diet.
-only 8-12% due to celiac disease of gluten sensitivity
-not recognized as an entity by physicians
-Symptomatic response to gluten withdrawal after both celiac disease and wheat allergy excluded
-May have positive anti-gliaden test
Mmmm. Pictures of small intestines. Villi, Epithelial cells, and microvilli. Pictures of atrophy, and inflammation.
Pathogenesis of Celiac Disease
-Wheat, Rye, Barley very closely related.
-Rice and Oats closely related to each other, but not to Wheat, Rye, and Barley.
-~10% first degree relatives
-Need HLA DQ2/8
-only accounts for 50% of genetic influence
-other genes (there are many)
-Celiac Disease in Childhood
–Breast feeding is protective
–timing of gluten introduction (later is better)
–cesarean section (increases risk)
–GI infections (increased risk)
Pathophysiology of celiac disease
-Gliadin is incompletely digested by gastric, duodenal, and pancreatic secretions.
Prevalence of celiac disease
-Common, affects about 1% of population
-about 5% in South African
-increased 4-5X in 30 years
-Finland 2.4% of elderly
-Sweden 3% children aged 12
Rate of diagnosis
The Old “CD” Epidemiology
-rare disorder typical of infancy
Modes of presentation (predominant presentation)
-0-2 years Diarrhea
-2-4 abdominal pain
-Women diagnosed 2-3X more commonly
-Exceptions children and elderly
-screening studies show about equal among genders (women go to doctor more often, men usually sicker when they are diagnosed.)
Showing signs of dental enamel imperfections. Enamel is developed by age 7, and can be seen as a record of childhood health. Association between dental enamel imperfections, canker sores, and Celiac/Gluten intolerance.
-reduced bone density is common
-improves on gluten free diet
-increased fracture risk
-Drugs shouldn’t be considered as first line reflex, GF diet and calcium supplement first.
-Exclusive of vitamin (B12,6,1,E) and copper deficiency and vitamin B6 toxicity
-suggests B6 in multi-vitamin be no more than 100% daily recommended intake
Serologic Tests in Celiac Disease
-antigliadin antibodies lgA, lgG (Not used anymore)
-Deamidated gliadin peptide (DGP) antibodies
-Currently the diagnosis requires villous atrophy
-life long diagnosis requiring an expensive and restrictive diet
-some people may have + blood tests and not as yet have atrophy
-take 4-6 biopsy pieces
-chance of diagnosis increases as # of pieces are taken during biopsy
-adherence to guidelines is greater in midwest (44.6% take 4 or more)
Burden of Disease
-3% of non-celiac have autoimmune diseases
-10% of celiac have autoimmune diseases
-early diagnosis of Celiac may reduce risk of developing autoimmune diseases
-adherence to GF diet reduces risk of developing autoimmune disease
High interest in medication.
-Older patients and men most interested
-Those with lower quality of life
-those that eat out often
Do people with celiac require increased cancer screening?
Breast and Gynocological cancer is reduced. Thyroid cancer is increased, don’t suggest any additional radiological screening. Higher in those diagnosed later in life, and those with malabsorbtion. Good physical examination that includes regular blood tests, rectal exam, and fecal exam is recommended. Colon cancer is not increased. Adhere to GF diet.
How often should children have blood test?
Recommend that children get screened. Differs based on guidelines. Do gene test using cheek swab. If they don’t have the gene, then giving them other blood tests, etc, are not necessary. Blood tests in gene positive should be done every 3-5 years. If kids are doing fine, closer to every 5 years. Kimble cheek swab.
How many people are the diagnosis tests missing?
Tests are pretty good. Maybe 15% can test negative for anti-bodies. Villous atrophy without anti-bodies and non-positive genes isn’t Celiac. Any doubt, seek a second opinion. Biopsy is retained.
I keep getting sick, and test positive for anti-bodies, is it Refractory Celiac?
If you have anti-bodies, that suggests that you are getting glutened. You’ve got to work out where the gluten is coming from. Have seen some people with very low anti-bodies that just never go away. See a nutritionist.
Is there a higher risk of auto-immune in people with gluten sensitivity?
They think that those with gluten sensitivity are less likely to get auto-immune disease. However, they are more sensitive to gluten than those with celiac. And usually don’t have anti-bodies. If anti-bodies are positive, biopsy is suggested, or possibly more pieces taken.
Alternative to drug therapy for osteoporosis?
GF diet, calcium supplement, regular bone density tests.
Enamel Hypoplasia a warning sign that children should be tested?
Yes. There can be other causes, but testing is recommended.
A little gluten once in a while ruins all your work?
Not necessarily. Accidents happen, contamination happens, etc. People on a gluten free diet reduce mortality. Cheating, purposefully eating gluten, are bad. But, accidental glutening happens.
How soon on diet before blood tests improve?
About 70% see improvement in about 1 year. Anti-bodies reduce at a rate, not all at once. So should be reducing. If still positive after 2 years, you’re still getting gluten. Should be normal at 2 years.
Necessary to use GF body products?
They think that internal ingestion is necessary. Skin products and shampoos should be ok, as long as you don’t eat them. But anything that can accidentally be ingested (e.g. lipgloss) should be avoided.
What is difference between wheat allergy and intolerance?
Allergy is immediate reaction to product. Celiac is an autoimmune response.
To receive the Celiac Disease Center’s educational materials, current research and announcements, please email Cynthia Beckman (cb2280 [at] columbia.edu) your complete contact information (Name, Address, Phone, Email)
Thank you Dr. Green!
Co-Manager, Gluten Intolerance Group of Fargo/Moorhead
Co-Chair of the Conference
“I am a delicate flower”
Has Celiac, and DH
Has stumped teams at major medical centers including Mayo.
Talking about what it means to be Celiac.
The case of the crabbies, that newly diagnosed Celiac patients get.
You are the captain of this ship!
It’s ok to mourn, this is an EXTREME change. Cry, have a fit, whatever, then get up go. “Buck up, buttercup.”
Educate yourself. (Websites, resources, support groups, blogs, newsletters, etc.)
Not one little bit. You can’t be a little bit pregnant. You can’t eat just a little bit of gluten. According to Dr. Joseph Murray, eating 1 cookie in a month does the same damage as eating gluten all month. The longer you go Gluten Free, the less it takes to affect you.
If you’re the only Gluten Free eater in your house, isolate your food. Have utensils of your own. Use paper towels to clean. Rags and sponges can cross-contaminate.
Don’t get in a cooking rut. Try new recipes, batch cook, eat at home more often. Gluten sneaks in. Gluten on the lips is gluten contamination. Sex is GF! Gluten on hands, dig in bag of chips, or dip gluten in dip.
Eating GF is cheaper than before.
New mainstream products help.
Buy in bulk at stores and online.
Buy with a buddy and split the cost
www.mambosprouts.com – coupons for GF items.
Sign up for newsletters
Coupons sites, like coupons.com
Keep GF items separate.
Talk to the host regarding your dietary needs.
Offer to bring a dish to pass that is safe. Go first in line.
Make a GF treat that will amaze the masses, proving that you don’t have to give up taste to be GF!
Don’t struggle alone!
Join a listserv, read a blog (like this one!), create a blog, and find a gluten intolerance support group.
Make sure your bosses and co-workers are educated
Ask HR if your employer participates in FMLA
Have open discussions of understanding and expectations
If you don’t like your doctor – Get a new one!
Be your own advocate!
The Gluten Challenge is Diagnosis Suicide
Take out the gluten, see how you feel?
Body is glad you took out the gluten and will let you know that.
Pros of Gluten Challenge
-if a “cure” comes out
-likely covered with insurance.
Cons of Gluten Challenge
-Might not stomach being back on gluten for 6 weeks to get the diagnosis
Some items will never be enjoyed again.
Some will surprise you and show up GF.
Manufacturers change recipes to accommodate the GF community, by 2015, GF industry will top $15 Billion.
Be in contact with a manufacturer and ask that they tweak the recipe for a product to make it GF, case in point – Rice Krispies became GF after General Mills created GF Chex.
Don’t throw away recipes.
There are flours, buns, muffins, premade and mix pizza crusts, candy, crackers, cookies, Bisquick, Chex, Betty Crocker, soups, soy sauce, salad dressing, alfredo sauce.
Gluten Free Labels
Read every label every time!!!
Label doesn’t say? Find the contact info and contact manufacturer. You’ve gotta know!
www.ceceliasmarketplace.com (Grocery shopping guide by ingredients)
Road Tripping and Travel.
Pack ready made food, for easy meals.
Be aware of Airport rules & regulations
Research places along the route
Websites like www.urbanspoon.com lists GF restaurants by city and suburbs
Visit www.glutenfreepassport.com you can have gluten intolerance dietary needs translated into different languages. (almost 29 languages)
Dine out during a lull time
Call during down time, 2:00 pm is best.
Ask about the ingredients, and prep.
Check the website, for GF menu online.
Bring hand sanitizer when using anything community. Shakers, ketchup, mustard, etc.
Keep silverware on a napkin and not the table.
Be an advocate. For yourself. And for others.
Average time for a symptomatic person to be diagnosed is 4 years!
A child will see an average of 8 pediatricians before being diagnosed.
Only 35% of newly diagnosed patients had chronic diarrhea, proving it isn’t the prevalent symptom as assumed.
It would take 935 cruise ships to hold every American with Celiac Disease
4,400 Boeing 747 planes
US Cellular park would be filled 55 times
3 million people have Celiac Disease. 97% don’t know it.
Educate those around you.
Good friends and family WANT to help, WANT to learn
Creat a GF favorites list
Give them amended recipes
Help educate them on how to cook GF
If someone makes something you can’t eat, or that makes you sick, take the time to tell them. They want to help, help them help you.
Maintain your humor!
Seriously, when can you talk about poop this much and not get weird looks?
We know how to say quinoa right!
Who else would understand “I have been glutened so bad, I am afraid to sneeze?”
You can tell someone this gluten free food product sucks, you are saving them alot of money.
Who else can buy a $9 brownie mix, spend an hour mixing and baking it, take one bite, and throw it out?
At the end of the day.
It could ALWAYS be worse
You have an answer and new GF friends, recipes, ingredients, cookbooks, and knowledge
Someone knows what Celiac Disease or gluten intolerance is because of you
maybe other family members have been diagnosed
It is challenging and expensive, but manageable and cheaper every year!
GIG Education Conference
November 4th, 2011
Speaker: Chef Aaron Flores
Chef Aaron is from Finn & Porter and Embassy Suites Washington D.C. Convention Center.
Started as Sous Chef as Disney California.
One person who has a food allergy, is “worth” 7 other customers. Through word of mouth, etc, they will bring 7 others to the restaurant.
Was the Chef in charge of the beta program for the Disney Worldwide Gluten Free program.
From video: (www.youtube.com/watch?v=QjdA22wAIYc)
What they use for GF cooking.
Independent grills, for bread items. Isolated prep-kitchen area for GF that includes pans and tools that are isolated based on allergy. Isolated pans specifically for casein-free as an example. Area is only used for the allergy fee cooking.
I eat what I want Hospitality. Restaurant chain that Chef Flores is starting that will be entirely Gluten Free. (and Cupcakery!)
He’s showing us some of what will be on the menu. Crab cakes, Steak with fried onions, filet mignon on the fire, pear and walnut salad.
In a blender
1 clove of garlic
2 cups olive oil (or canola oil)
1 cup white vinegar
salt & pepper
1/2 tsp xanthan gum
Blend to emulsify
Optional additions for Chicken
Add chives and use as a marinade for beef.
Talking now, about creating the world’s largest gluten free cake for 1 in 133 (see banner in sidebar). Cakes were baked at Whole Foods and trucked in to Finn and Porter. Started build at 9pm, finished layers and frosting at 5am. 5pm, last piece put on the cake. The head of the FDA attended and admitted to making a mistake. Started the discussion that is ongoing on what the regulations will be to certify for Gluten Free. Guinness world record at 17 feet and one inches.
He and his sun are writing a book, Gluten Free with my Daddy and me. Portion of proceeds to go to GIG kids camp.
Rocky Road Peanut Bar
In double boiler (pot with hot water, with mixing bowl over top)
1lb chocolate chips
1lb butterscotch chips
1/2 cup butter
2 1/2 cup peanuts
1 1/2 package mini marshmallows
1 small jar peanut butter
mix until melted. In a pan, line with parchment paper. Put in pan and press down.
You can be jealous now. We all get one!
Thank you Chef Flores!
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