Celi Study Experience

Hi Marian,

     I am happy to share my experience as I love to contribute to the Celiac community.  For the most part I don’t have any privacy issues etc.  Just ask and I will let you know

  First let me share why I love this study:

1.  The medication is actually an enzyme

2.  The study does not ask that you go off the gluten free diet!

3.  The study helps you track your symptoms!

4.  You get free lab work and an EGD (something I have been intending on having done; however, I have had other medical expenses due to foot surgery and I have had to put off).

The study itself is handled in phases and you qualify phase by phase.

The initial phase is an extensive medical history – typical questions that you would have on a questionnaire for a physical.  Then you are asked about your historical intestinal issues, rashes, medication/alcohol use.  Nothing really earth shattering.  Your height, weight, & blood pressure are taken and you have a brief visit with the physician if any clarification is required.  My original biopsy noted that I had intraepithelial gastritis and I thought it may disqualify me from the study and the study coordinator wondered as well.  I believe that was the only reason I met with the doctor.  Oh, and there were consents to read & sign.  I was there 2 1/2 to 3 hrs. and I imagine I will not be there this long for each visit.

The study coordinators were very nice and I felt quite comfortable.  Sonia Collins is kind and very helpful/involved with the Celiac community (although not Celiac).  Sonia also likes the baked goods she receives from the patients to try!  Sonia is also more than willing to share new product information between patients.  Dr. Ennis was quite pleasant as well.  Dr. Ennis family is completely gluten free as his son has Celiac Disease (I always like to see that kind of support).

The next phase of the study was going over the lab results, the diary, & scheduling the EGD (which may be cancelled if I don’t qualify for the next round).  They performed all the labs I was looking for  When I was diagnosed, my doctor bypassed all the important stuff and went straight to the biopsy and the genetic testing (therefore, this was great).  The tests revealed that I was definitely negative for gluten – with the usual trace noted.  I am proud to say that I am very strict with my diet; however, I have a new deficiency:  Folate.  The doctor noted this as clinically significant and recommended a supplement (dually noted and purchased immediately). 

Next, we went over the daily diary.  For some reason I anticipated that it would be a food diary, but it is actually a symptom diary.  The idea of the study is that even someone like myself who is diligent with their gluten free diet is going to get a little gluten somewhere.  Therefore, cheating on your diet is not necessary, recommended, or required.  This initial diary will document the symptoms you have throughout the day.  The questions are related to symptoms you may have had throughout the day; diarrhea, regular bowel movements,  abdominal pain, bloating, nausea, or fatigue.  You go through a practice run with the study coordinator and then the next night you are on your own for 28 days.  I believe as long as you comply with the diary you qualify for the EGD.  The diary is really easy and it is by phone.  The company even sends you a text or will call you daily to remind you!  I was there for 45 min. and my next visit is actually my EGD (unless I fail at my diary and they cancel me).

If my EGD reveals I do not have any ongoing intestinal damage, I believe that will disqualify me moving forward.  Therefore, I may not have an update until the end of January as my EGD is not scheduled until January 24th.  Please feel free to inquire if you have any additional questions/concerns.

The Haze is Lifting!

Hello everyone! I am finally coming out of the holiday haze and want to share a great experience I had this week.  I have many family birthdays this month and 12 of them between Dec 21 - Dec 31st. March is definitely a cold month!

My husband, his twin and my sister's birthdays is December 23rd. A challenging time to celebrate to say the least. This year we went to the  Bru Grill in Lake Forest, CA.  It was an amazing and joyful experience. 4 of us are gluten-free and all 5 of us are dairy-free. Even in the midst of this crowded restaurant, we enjoyed a fabulous meal that was specially prepared for us. The food is great, the service even better, and the place was decorated beautifully.

Though they do not have a specific allergen or gluten-free menu, they have many options.  Let's start with the fact that they have a separate allergen cooking area. Oh yes, all the staff are trained and understand allergies and gluten issues.They have gluten-free flat-bread &  pasta, both which are delicious. The french frier is a gluten-free dedicated fryer, so I ordered a side dish and had french fries for the first time in years. (I only eat a few because I am not used to fried foods and didn't like them as much as I used to) Almost any meal can be convert to gluten-free and, if not, the staff is the first to know. As for dairy-free, none of us had a problem finding exactly what we wanted.

I can't remember a time that we all went out to dinner and were so relaxed and enjoyed a wonderful meal, knowing we were safe.

I hope you have a great go to safe-haven, also. 

Storing Gluten-Free Flours

I am often asked how to store gluten-free flours and what their shelf life is.

1. It is recommended that all gluten-free flour be stored in a air-tight glass container, once it is opened.
2. Opinions vary on whether all gluten-free flour should be stored in the refrigerator. Considered the weather and how quickly you will be using it.
3. Chef Beth Hillson from Living Without Magazine,August/September 2013 issue recommends:
a. White Flours and Starches have very little oil, so they can be stored in an airtight container in the pantry for several months.
b. Whole Grain flours have more oil, so store them in an airtight container:
     In the refrigerator 6 months or     
     In the freezer for 9-12 months.  
              
     Example of Whole Gain Flours:
              Amaranth Flour
              Millet Flour
              Brown Rice Flour

              Quinoa Flour
              Sorghum Flour
              Garbanzo Bean Flour
 
c. Nut flours are very high in fat content and can go rancid quickly. Store in  an air tight container:  
      Examples of Nut Flours: 
              Almond Flour
              Hazelnut Flour
              Coconut Flour

   In the refrigerator 3 months or In the freezer for up to 6 months.    
 
 4. Chef Beth Hillson suggests always bringing your flour to room temperature before using.

Happy Baking!

ARE GLUTEN-FREE BAKERIES ALL CREATED EQUAL?

The simple answer is NO!

In my opinion, the only truly safe gluten-free bakery is one that is 100% dedicated to baking only gluten-free products.  I believe there are 3 kinds of baking facilities we need to review, 100% dedicated facility, a shared facility that follows stringent protocol and those  facilities that may not know the how to properly maintain a safe gluten-free environment.

A gluten-free dedicated bakery or facility is one that only produces products made with gluten-free ingredients and does not ever use any gluten containing ingredients in the facility. There is no possibility of cross-contamination.

Bakeries or facilities that are not 100 % gluten-free, often share a physical space and/or equipment with products produced with gluten ingredients.  This may lead to cross contamination, unless stringent protocols are followed.

Many commercial facilities and small independent bakeries are extremely careful to avoid cross contamination and go through extensive steps to thoroughly clean the equipment and prep area before baking the gluten-free products:

According to The Gluten Intolerance Group (GIG), once flour is used in a facility, it can take up to 24 hours for the flour to settle out of the air and onto a surface. In order to avoid cross contamination, the facilities baking both gluten and gluten-free baked goods need to wait up to 24 hours between baking a gluten item and a gluten-free item. (GIG) For people with Celiacs & Hashimoto’s, even breathing in gluten can set off a reaction.  

The prep area must be scrubbed clean by a “wet cleaning system” before gluten-free products can be baked in the area. Employees cannot bring any gluten food items into the prep area such as; sandwiches, crackers etc. Utensils, tools, and any equipment used to bake gluten-free products need to be carefully stored, in order to avoid exposure to gluten. (GIG)

Not all small mom and pops bakeries are aware of the specific requirements needed to be completed, in order to maintain a safe, cross contaminated free environment for gluten-free baking.

I have come across some mom and pop bakeries that have decided to add gluten-free products in their product list. One in particular started baking gluten-free and dairy-free to increase their sales and knew very little about baking gluten-free and the seriousness of cross contamination. I spent some time talking to the owners, after finding an error on their label for gluten-free rolls. I purchased the rolls from a health food store. My husband loved them, so I went to the bakery to see what else they had.

Much to my surprise and horror, the bakery was filled with gluten products and has been around for many years. Just, being in the bakery made me nervous. They had a small shelf of a few GF products, so I talked with the person behind the counter, who happened to be the person who baked the GF products. I asked about the process they use to bake the GF items.  

Yes, they clean the equipment before baking GF.

Yes, they package the goods before starting to bake gluten items.

No, they do not wait any time between the baking of gluten and GF products.

Next, I asked the obvious question (if you are a GF consultant and a curious person) what ingredients do you use to bake the GF rolls. I realized there was a label on the package of GF rolls, I was holding, but by now I was getting a little concerned.  She kindly rattled off the ingredients. “PLEASE repeat what you just said!” I asked.  “Did I hear the word milk? There is no milk written on the label.” She responded, “There must be a mistake because I use milk to make these rolls.”

This set off a series of phone calls to the owner. At first, the owner denied using milk. By the end of the 2^nd phone call he said, “It is only a little milk, it cannot hurt anyone.” I was shocked and appalled. After we hung up, I wrote a long email to the owners and included several article and websites about dairy allergies and how a drop of dairy can kill someone with serious dairy allergies.

The 2^nd owner called me and we met. She had never heard of Celiacs and did not realize the cross contamination issues that could occur. She had not done any research on gluten issues or allergy related issues. The bakery was failing and she saw gluten-free products as a way to turn the business around. We spoke for a very long time and I gave her as much direction and places to find information as possible. They have since changed the label, use almond or rice milk and have tried cleaning up their act. I see their products in the local health food stores and hope the products are safe for those with food issues.

Many start- up GF bakers need to find a commercial facility where they can bake. Often they partner up with an already existing gluten baker and bake during the off hours. I am very cautious of these bakers because cross contamination possibilities. It is worth contacting these bakers and asking if the use are test kits to test the products for gluten content.  

Until there are stringent rules that can be monitored, it is the consumer’s responsibility to be aware of what they are purchasing and where they are buying it form. 

Please see my post on Dedicated Gluten-Free bakeries in Orange County, CA

Disclaimer:

Persons that are very sensitive to gluten or have other food allergies should review all information in order to make an informed decision

Yeast Unraveled

                            

    

                                                                                                         Yeast Extract was once considered to be gluten-free but after Canada’s new 2012 labeling laws went in to effect, a different picture began to emerge. Canada is a few steps ahead of the United States, when it comes to gluten issues and the labeling laws are no different. Canada requires manufacturers to include, wheat, barley rye, and oats on the allergen label. Suddenly, companies like Campbells Soup and Knorr Soups started  listing “barley yeast extract or yeast extract containing barley” on some of the soup labels. In the U.S., Lipton soups are voluntarily listing “Autolyzed yeast extract (barley). (GF Living p 39)

According to the article, Yeast Extract, in Gluten-Free Living, by Van Waffle, “The Canadian Celiac Association (CCA) set out to determine what “barley yeast extract” means for people on a gluten-free diet.” The research is in the beginning stages but several tests have shown gluten levels above 20ppm. According to an expert, quoted in the article, the gluten count in the yeast extract they tested can range from 20ppm to 100ppm. More research needs to be done to confirm this information. (GF Living p 40)

The United States labeling laws do not require manufacturers to list barley, rye or oats as an allergen, therefore they are not required to add them to the label if it is products such as; in natural flavorings or yeast extract. It is the consumer’s responsibility to protect themselves by reading labels carefully and understanding what they are reading.

Different Kinds of Yeast: 

After reading the article, I decide to learn more about yeast.  I wanted to be clear about the different kinds of yeast, their uses, and where they are derived from.

NON-GLUTEN CONTAINING YEAST FORMS:

  1.     Nutritional Yeast:  Gluten-free yeast derived from beet molasses. It has a cheesy flavor and is often used as a cheese flavoring.  

       2.     Torula Yeast:  Gluten-free, highly nutritious yeast produced commercially. It is from a sugar recovered from the manufacturing of wood products or from processed fruit. It is used as a flavor enhancer. ( Source: Dictionary.com)

3.    Baker’s Yeast: Gluten-free yeast, used for the leavening of breads and baked goods.                                                                                                                                                            GLUTEN CONTAINING YEAST FORMS

      4.    Brewer’s Yeast: Is a by-product of the beer brewing process. It is rich in minerals and is sometimes used in nutritional supplements.   

      5.     Yeast Extract: Also called Autolyzed Yeast or Hydrolyzed Yeast.

Until further research is done and the FALCPA amends the new gluten labeling laws, it is up to the consumer to be aware of what is in the products they are purchasing. 

Waffle, Van, Yeast Extract. Gluten-Free Living Magazine (Number6/2013) 

• According to Gluten-Free Living, “When yeast extract is a by-product of the beer-making process, it contains small amounts of barley protein, a fact that has been long known. When yeast extract is made from baker’s yeast, which uses sugar as a starter, it does not contain gluten.”  Yeast extract can also be a combination of both processes. (GF Living p 39)
• “Unlike some ingredients that are processed to the point that all gluten protein is removed, the protein in yeast extract becomes more concentrated than yeast itself.”   (GF Living p 39)
• Many popular sauces, bouillons, meat dishes, ready-made meals and savory snacks are refined with yeast extract.  (Source: http://www.yeastextract.info/faq)
• Yeast extract is labeled as “yeast extract” in the ingredient list or sometimes included in “natural flavor”. (Source: http://www.yeastextract.info/faq)
• *Natural Flavorings can contain gluten, MSG and/or Autolyzed Yeast (Yeast Extract). 
• Even if the product says no “MSG” it may contain “free glutamate” the active ingredient   in MSG.
• The webpage, http://www.truthinlabeling.org/hiddensources.html) contains a list of,  Names of ingredients that contain processed free glutamic acid (MSG)^1.

Until further research is done and the FALCPA amends the new glluten labeling laws, it is up to the consumer to be aware of what is in the products they are purchasing. 

Waffle, Van, Yeast Extract. Gluten-Free Living Magazine (Number6/2013)

Persons that are very sensitive to gluten or have other food allergies should review all information in order to make an informed decision.