Wheat Germ Oil

Gluten Free but not Wheat Free?
It is well known in the gluten free community that wheat free does not always mean gluten free. However, it is not as well known that gluten free does not always mean wheat free. Recently, we have discovered several products labeled gluten free that contain wheat. After finding these products, our office decided to investigate further. We found that in almost all of these “gluten free” products wheat germ oil was listed in the ingredients. We wanted to know more; what was wheat germ oil, how could it be labeled gluten free, and was it harmful to celiacs and gluten sensitive individuals?

What is Wheat Germ Oil?
Most frequently used in cosmetics due to its high vitamin E content, wheat germ oil is known scientifically as triticum vulgare. The only oil that is derived from a gluten containing source; wheat germ oil is a fatty acid found in very small quantities within the small embryo of the wheat plant.

Is Wheat Germ oil Gluten Free?
Typically, when wheat germ oil is used it has been refined. The refining process in theory removes all gluten proteins, and therefore would make wheat germ oil free of any gluten proteins. Although it is likely to be a small amount it is possible for refined oils to contain trace amounts of gluten. These trace amounts may be left over from a poor refining method or from cross contamination that may occur during the process. We essentially relate this to a product that is labeled “gluten free” yet made in a manufacturing plant that also process wheat. These are products that we believe should not be labeled gluten free and most often do contain gluten.

Can Wheat Germ oil be Labeled as Gluten Free? 
There are no gluten free labeling laws in the United States. There are a set of “proposed laws” that state products under 20ppm gluten may be labeled as gluten free. Due to the low amount of gluten, these proposed laws would make wheat germ oil a “gluten free” product in the United States. Furthermore, the FDA states, “highly refined oils and ingredients made from highly refined oils are exempt from allergen labeling.” The US Department of Agriculture states “A benefit of refining oils is that the refining process renders them virtually free of allergenic protein”. This would then imply that wheat germ oil is an allergen free product, and exempt from all labeling laws.

Is Wheat Germ oil Safe for Celiacs?
According to celiac centers in the United States and Canada wheat germ oil is not a safe product for celiacs and gluten intolerant individuals. Here at the Gluten Free RN we are in agreement that wheat germ oil is not a safe product to use. We believe that using a product derived from wheat is too big of a risk to take. It is still possible that this product may contain a small amount of gluten, and we believe that any amount of gluten is too much for a gluten free diet. It is also important to remember that there are subsets of people who are both intolerant to gluten and allergic to wheat. These individuals would have a definite reaction to any products containing wheat germ oil.

 Identifying Wheat Germ oil in Products: 
Wheat germ oil is often found in beauty products and may be labeled as tocopherol (vitamin E). Although the amount of wheat germ oil found in tocopheral may be low, it is important to always contact the manufacture to insure their vitamin E is derived from a different source. If the manufacture does not know where their tocopherol is derived from we recommend finding an alternative beauty product. Remember any amount of gluten is too much!

 Wheat germ oil can also be found in edible products including chocolate, and other processed products. Our office has found that these products are labeled gluten free but not wheat free and do include “wheat germ oil” on the ingredient list. Currently we recommend keeping these products out of your gluten free diet. The manufactures may insist that the gluten protein has been completely removed from their wheat germ oil but we believe that is too bold of a statement to make. There are just too many unknowns about wheat, gluten intolerance, and the affects of wheat germ oil on a gluten free diet to allow it to be part of our diets.When it comes to wheat germ oil we will use our golden rule; when in doubt, go with out!


Where is Gluten Hiding in Your Life

We live in America and gluten is everywhere!

Below are just a few of the places gluten can hide…

Your Significant Other:
Can you get gluten contaminated from kissing someone?

The answer is yes.

When my husband reaches over for a kiss… I always have to stop and ask him; do you have gluten mouth? Although this might not seem very romantic, either is the horrible aftermath that will occur if he kisses me with a mouth full of gluten.

Update: Shortly after this post my husband went 100% gluten free. Our entire house is now gluten free including the pet food 🙂 

Gluten CAN be transferred from one mouth to the next! If your significant partner is not ready to make the switch to a gluten free lifestyle they can take a few precautions, to ensure they do not poison you.

We keep mouthwash in almost every room of the house, that way my husband can be lazy, and wash out his mouth no matter where he is. We also tote around a travel size mouthwash, and toothbrush. We also take other precautions in our home. My husband has his own gluten everything! He has his own cupboard, cabinet, pans, utensils, and plates. He also washes his hands after touching anything that has gluten in it.  We also keep gluten free sanitizer wipes in every room in case of any over spills.

Beauty products:
Gluten is hidden a lot of beauty, and cosmetic products. See our cosmetic blog:

Beer and distilled liquor:
Beverages can be tricky. Many people make the mistake of thinking their beverages must be gluten free when in fact they are not. This includes juices, smoothies, milkshakes, and any other beverages. Always make sure you know how your product is made and all the ingredients that go into that product. Some red flag ingredients in beverages are; natural flavors, caramel coloring, added preservative and manufactured in a facility with wheat.

Almost all beer does contain gluten. Luckily, there are now a large number of quality gluten free beers on the market, and the number of safe options is growing. It is also an option to try hard ciders. However, it is important to make sure the cider is labeled gluten free. Not all hard ciders are free of gluten, and wheat!

Most distilled liquors are considered “gluten free”. It is said that the gluten protein is “washed” out of the alcohol through the distillation process. However, not only have we found that many celiacs cannot tolerate grain alcohol, it is also important to be aware of cheap liquor. Several of the cheap liquors do not use a thorough distillation process, and some of the gluten proteins may still be present.

It is also important to be aware of any alcohol with coloring or flavors as these may contain some source of gluten. If you do decide to drink distilled liquor then we suggest sticking to alcohol that is not derived from a grain. Some suggestions are; rice or potato vodka, tequila, and light rum.

Gluten is used in candy to give it those stretchy elastic properties. All big name brand licorice has gluten in it. This includes; Twizzlers, Good & Plenty, and any other big name brands. There are some brands that make “gluten free” licorice, however it is important to read the label every time, and be aware of cross contamination.

Gum is one of those products that fall into the grey category. It is quite possible that most gum does contain some form of gluten. Trident is one company that is listed as being gluten free.

Soy sauce:
Almost all soy sauce has wheat in it.

San-J and Kikkoman are both companies that do make a line of gluten free soy sauces. Their products can usually be purchased at local grocery stores or through online gluten free stores.

Wheat is used as a thickening agent in almost all soups and sauces. Always read the label, and when in doubt go without. Some companies that offer gluten free soups are: Pacific Natural Foods, and The Gluten Free Café.

Salad dressing:
Salad dressing can often have a hidden source of wheat that is not displayed on the label; many companies will use wheat to help thicken the dressing. Some options for salad dressing are: Olive oil, and lemon juice, balsamic vinegar, purchase a “certified” gluten free option or make a different variety at home.

Tea and coffee:
Many people often make the mistake that all tea, and coffee is gluten free. All plain coffee grounds should be gluten free. The problem arises when flavors are added into the coffee grounds or espresso drinks. Often these flavors will have additional ingredients that may contain gluten. If you choose to drink coffee from places other than home, we suggest finding a place that you trust and knowing all the ingredients that go into your drink.

An example of this is Toroni syrup, Toroni is often used in espresso drinks and other flavored beverages. If you look at Toroni’s ingredient list it states that all their drinks are wheat free. However if you dig a little deeper you will find that five of their syrups do contain gluten. Here are the ingredients for their caramel flavored syrup: Pure cane sugar, water, natural flavors, citric acid, sodium benzoate, and potassium sorbate. Most would look at these ingredients and assume this was gluten free. Unfortunately this is one of the syrups that do contain gluten. The other syrups that contain gluten are; Bacon, SF Caramel, Marshmellow, and SF French Vanilla.

There are two issues that come into play when dealing with tea. The first is the packaging. Many companies will use gluten to help the tea bag stay closed, and this gluten can contaminate your tea bag. The other issue is that many companies often put barley into their herbal teas. There are some great options for gluten free tea; Tazo* and Celestial Seasons both have gluten free options.

*Not all Tazo Teas are gluten free. The following teas do contain gluten: Green Ginger, Honeybush, Lemon Ginger and Tea Lemonade.

Deli meat:
Almost all processed meat has some source of hidden gluten in it. When I buy lunchmeat or any other processed meat I always make sure it says gluten free on the label. If you prefer to purchase deli lunch meat, I suggest going to the supermarket when it first opens so all the counters, cutters, and knifes are clean. Then ask the deli person to help you check ingredients. Make sure that they understand that all surfaces need to be cleaned, and that they will need to change their gloves before helping you with your purchase.

Farmland Foods provides a great example of a lunch meat that may have hidden gluten. When looking at the ingredients on their deli meats you will not find any mention of gluten.

Here are the ingredients from one of their deli meats: Pork liver, pork, bacon (cured with: water, salt, sugar, sodium phosphate, sodium erythorbate, sodium nitrite), water, salt, dextrose, flavorings, sodium nitrite.

With a closer look we found this information under their FAQ section on their website we found the following information: Spice formulations from our suppliers and secondary suppliers can change from time to time and still be correct under USDA labeling requirements. Because of this, along with the possibility of cross-contamination from the secondary suppliers to our own main ingredients, we cannot absolutely guarantee that any of our products will be gluten-free.

Wheat free products
When buying processed products it is important to always read the label. If a product claims it is “wheat free” that does not mean it is gluten free. Remember gluten is not just wheat and can come from several other sources. Only buy products that are; wheat free, gluten free and manufactured in a dedicated or clean facility. Always be cautious of products that claim they are gluten free but are also made in a facility with wheat.

All medicine has the potential to contain gluten.

For prescription medicine:
We recommend always checking with your pharmacist, and doctor before talking any medicine. The Gluten Free RN office can also test any medication for $10. If your pharmacist or doctor refuses to help you find the ingredients in your medicine please let us know.

Over the counter medicine:
Did you know that beano contains gluten? It is essential to always read the label on your medicines! However, some medicines will not list all of their ingredients on the label, it might be necessary to call the manufacture to make sure it is safe.  There are also websites that provide extensive lists of gluten free medication. If you chose to use these lists make sure that all the information is up to date.

All play-doh has gluten in it! Here is a recipe to make your own play-doh at home: http://celiacdisease.about.com/od/raisingaglutenfreechild/r/PlayDough.htm

French fries:
French fries from fast food restaurants are NOT gluten free. Nine times out of ten these restaurants will use a common fryer for their fries, chicken nuggets, tater tots, ect. That common fryer WILL contaminated your fries with gluten. We recommend staying away from all fast food. We believe that the risk of cross contamination is just too high. If you are craving burgers and fries it is always an option to make your own at home or find a local restaurant that can adjust to your needs.

*Be aware that not only are McDonalds Fries made in a common fryer. They are also coated with wheat and milk.

Processed food:
To be on a completely 100% gluten free diet taking out processed food may be essential. It is important to remember that even a bread crumb can trigger the same autoimmune reaction as a piece of bread.  Here is a link to an excellent resource on processed food containing gluten: http://glutenfreecooking.about.com/od/gettingstarted/a/hiddengluten.htm

Cleaning products:
It is important to make sure that all of your cleaning products are gluten free. There are several natural cleaning products out there. Both apple cider vinegar and baking soda make great safe cleaning products.


Lapid, Nancy. “N/A.” Celiac Disease – Gluten-Free Diet. 26 Jan. 2008. Web. 09 Apr. 2011. <http://celiacdisease.about.com/>.

Sarros, Connie. “Hidden Sources of Gluten.” Celiac Solution. Web. 09 Apr. 2011. <http://www.celiacsolution.com/hidden-gluten.html>.



Gluten Free Cosmetics

Say Goodbye To Your Gluten Filled Makeup Bag

Do you really need to worry about health and beauty products such as shampoo and hair spray? How about mascara and eyeshadow? Do these products even contain wheat, barley, rye or oatmeal?

The simple answer is ‘yes’ most cosmetic products do contain some form of gluten and can cause symptoms, especially for people that are exquisitely sensitive or have the rash DH.

People with gluten intolerance, celiac disease and dermatitis herpetiformis ARE sensitive to gluten in their personal care products. Everything that is placed on your skin has the potential to enter in your bloodstream. Accidental ingestion can also happen if any gluten containing ingredients are on your skin, hands or around your mouth. Although you might not eat your eye shadow or mascara it does have the potential to get on your hands, and then into your mouth, eyes or nose.

The Gluten Free RN has set out on a mission to find gluten free beauty products. We have formed a list of companies that claim to have gluten free cosmetics and beauty products.

Please use this list of companies as a resource guide for finding products. With the following precautions in mind:

  • We have not tested every product from every company and therefore cannot guarantee that every product is 100% free from gluten.
  • Companies change formulas and ingredients in their products often. When ordering a product we recommend checking the ingredients, and emailing the company for verification.
  • Everyone has different skin. While one product may work for me it might not work for you. We recommend testing products on your skin before purchasing them. Many companies will give away or sell samples that can be used as a tester before you decide to make a purchase.

The Hidden Ingredients

Gluten can be very sneaky and as many of you know appears in all different places. Below is a list of the many ingredients gluten can hide in your beauty products:

  • Avena Sativa (Oat) Kernel Flour
  • Cyclodextrin
  • Dextrin
  • Dextrin Palmitate
  • Hydrolyzed Malt Extract
  • Hydrolyzed Oat Flour
  • Hydrolyzed Vegetable Protein
  • Hydrolyzed Wheat Flour
  • Hydrolyzed Wheat Gluten
  • Hydrolyzed Wheat Protein
  • Hydrolyzed Wheat Protein/PVP Crosspolymer
  • Hydrolyzed Wheat Starch
  • Secale Cereale (Rye) Seed Flour
  • Triticum Vulgare (Wheat) Germ Extract
  • Triticum Vulgare (Wheat) Germ Oil
  • Triticum Vulgare (Wheat) Gluten
  • Triticum Vulgare (Wheat) Starch
  • Wheat Amino Acids
  • Wheat Germ Glycerides
  • Wheat Germamidopropalkonium Chloride
  • Wheat Protein
  • Wheatgermamidopropyl Ethyldimonium Ethosulfate
  • Yeast Extract

Gluten Free Cosmetics Companies

Below is a list of companies that claim to have mostly or all gluten free products. As a reminder: We have not tested all of the products or companies on this list. If you have highly sensitive skin we suggest contacting the company for a list of ingredients and testing their product on your skin. The Gluten Free RN can also test any product for the presence of gluten under 10ppm at our downtown office.

This is box title
Afterglow Cosmetics
This is a 100% gluten free cosmetic company. A woman whose family struggles with gluten intolerance started the company. She knows how severe gluten intolerance is and she is dedicated to maintaining a completely gluten free line.
This is box title
Everyday Minerals
(Email from the company:)
Hello Sam,
Thank you for contacting us.  The Tocopherol  (Vitamin E) used in our Lip Balms and Glosses is derived from Soy.  Other products that do contain the Tocopherol are the Pressed Powders. Our products are vegan based, free of carmine, nuts, lake dyes, fragrance, bismuth oxychloride and parabens.  Our powders consist of: mica, titanium dioxide, zinc oxide and iron oxides.  Our finishing powders vary and some consist of  kaolin powder.

All of these products should work well for you, but you may also want to check a gluten list of ingredients to avoid, since everyone’s skin is different.  We do recommend doing a skin patch test when trying a new product to see if your skin is happy with the product.  If your skin is sensitive to a product then wash your skin with water and discontinue use.

The Product Page does have a tab with the list of ingredients, which you can use for reference before making a purchase. Simply select the product of your choice and then select the Ingredients tab at the bottom of the page to view the ingredients for that product (there will also be a Details and Usage Tips tab).

Please let us know if you have any additional questions.
Everyday Minerals

This is box title
Joelle Cosmetics
This is another 100% gluten free, celiac disease friendly company. They have mineral makeup and are dedicated to providing good quality gluten free cosmetics.
This is box title
This company is a gluten free cosmetic company with mineral products. Their products can be purchased through their website.
This is box title
Red Apple Lipstick
Direct from their website:
We help women, especially those with gluten intolerance and other sensitive allergies, feel great, look great, get compliments and enjoy makeup again! All Red Apple Lipstick products are certified gluten free, paraben free, soy free, dairy free and allergen free. Our lipsticks are also vegan, natural and cruelty free, but you wouldn’t know it, unless you asked!
This is box title
100% Pure
Direct from their website:
Are your products gluten free? If so, where does the Vitamin E come from?

Most of our products are gluten free. We are sensitive to this since we know many people suffer from gluten allergies. One common ingredient that contains gluten is Vitamin E. But the Vitamin E we use is gluten free because it’s derived from cold pressing rice bran.


Enjoying the Holidays Gluten Free

Eating gluten free can sometimes be a challenge during the holiday season. From mother-in-laws to failed recipe attempts many people find themselves overwhelmed and often dreading their gluten free holidays. I don’t believe that food intolerances should stand in your way of a successful celebration. Here are a few tips to stay healthy, happy, and most importantly, full during this holiday season.

When in doubt go without:
Gluten hides everywhere! Never assume something is gluten free, cross contamination is always a risk when eating at someone else’s home. Turkey’s are often made with stuffing inside, gravies are thickened with wheat flour, and it only takes a breadcrumb to trigger an autoimmune reaction. You are the only person responsible for the food that goes into your body. Don’t let someone peer pressure you into eating something that may or may not be gluten free. Trust me, the repercussions are NOT worth it!

Always be prepared:
If you are starving you might eat something that you will later regret. I always pack food in my purse or eat ahead of time so I’m never in desperate need of food. If you know where you will be spending the holidays, give the hostess a call ahead of time and let them know about your allergies or intolerances. If necessary let them know you will bring your own food. If you bring a dish for everyone to share, ask if you can serve up your plate first and don’t plan on going back for seconds. Shared utensils, fallen breadcrumbs, and gluten hands call all contaminate your food.

Offer to host at your home:
If you are able, offer to host the dinner at your home. This way you know what goes into every dish and you can be sure everything is gluten free. If others insist on bringing food, ask them to bring something that is naturally gluten free. Some options are fruit, vegetables, or drinks.

Let someone else do the cooking for you:
If you don’t feel like cooking or don’t have the time, you could always head over to our local gluten free restaurant, Eats & Treats Café. (www.Eats-Treats.com) They offer a wide variety options, including take out, and are always happy to take care of your gluten, dairy, and soy free needs.

With or without food intolerances, I know that the holiday season can be stressful. If you are feeling overwhelmed just try to remember what the holidays are really about. Take time to enjoy your family, friends, and the things that make you happy. When all else fails don’t forget that our local hard cider company, Two Town Cider House is gluten free!


Downs Syndrome and Celiac Disease

Depending on the study, the prevalence of celiac disease in children with Downs syndrome is estimated to be as high as 4-17%, compared with just 1% in the general population. Autoimmune conditions are much more common in DS, celiac disease included. However, the cause for this is still unknown. DS is caused by an extra chromosome 21. It is not a genetic disorder, but often the result of abnormal cell division. The DQ2 and DQ8 genes that are highly associated with CD are on the HLA markers on chromosome 6. Since these genes are present in 30-40% of the US population, the increased prevalence of CD in DS is probably not due to the genes, but to some other unknown trigger.

What we do know is that there is a link between the two. Children with DS are more likely to have “silent” CD than the general population, making it even more difficult to diagnose. Often there are symptoms that go away once on a gluten free diet that weren’t thought to be associated. Most studies suggest a mass screening for CD in children with DS, however, it is not being done. In particular, if your child has DS along with one of the following symptoms, you should get them tested:

  • Any bowel disorder
  • Failure to thrive in reference to Down’s syndrome specific reference charts
  • Abdominal distension
  • Depression or unhappiness
  • Arthritis
  • Rash
  • Thyroid disease
  • Any autoimmune condition
  • Anemia

One negative test is not enough to rule your child for celiac disease, and annual tests are recommended. Finding out your child has celiac disease while they are still young can protect them from future health problems later in life including lymphoma, osteoporosis, and other autoimmune conditions.




A book titled The Gluten Effect makes a few interesting points. In one study of 123 patients with fibromyalgia, 73% were suffering from IBS. While 2% of the population has fibromyalgia, 9% of patients with celiac disease have the condition, much higher than the normal population.

This link actually argues that fibromyalgia is NOT associated with celiac disease because those with fibromyalgia have been found to have decreased serotonin, the argument being that there is a biological underlying issue to fibromyalgia (low serotonin) that cannot be attributed to celiac disease. BUT, in a study from 2006, it was found that those with celiac disease absorb less of the amino acid tryptophan. Tryptophan is the precursor to serotonin and decreased levels of this amino acid are directly related to decreased levels of serotonin (Margutti P, Delunardo F, Ortona E.). Coincidence? I don’t know.

What are the symptoms of fibromyalgia? Fatigue, insomnia, chronic pain, muscle and joint pain, numbness, tension/migraine headaches, memory/cognitive difficulties. Let’s look at some of these in Cleo Libonati’s book, Recognizing Celiac Disease:

75% of CD patients complain of fatigue at their time of diagnosis (including both Nadine and myself). This is primarily due to nutritional deficiencies: iron, magnesium, protein and vitamin C.

Insomnia is due to the reduction of the synthesis of neurotransmitters in the central nervous system. This can result from multiple malabsorptions in CD: vitamin B6, B-complex, magnesium, thiamin, calcium, EPA and especially tryptophan (remember this one? It is needed to make melatonin AND serotonin!).

Muscle pain is common in CD, resulting from multiple vitamin and mineral deficiencies: thiamin, vitamin C, E, K, niacin, pyridoxine, vitamin B12, magnesium or selenium.

Joint pain, or arthritis, is caused by inflammation damaging joints or connective tissues. It is an autoimmune condition, and is thought to have an outside cause. Celiac disease is in fact an autoimmune condition that causes inflammation throughout the body. In celiac disease, when your body is exposed to gluten, in produces antibodies against itself, known as tissue tranglutaminase (TTG for short). These can cause several autoimmune conditions to occur, one of which is arthritis and pain in the joints. Furthermore, there are several deficiencies that can lead to arthritis. Omega-3 deficiency is found to exacerbate psoriatic arthritis, though the reason is unknown. Vitamin C deficiency can cause rheumatic pains in the legs and can cause arthritis that often mimics rheumatoid arthritis.

In a study of patients with celiac disease and migraine headaches it was found that 64.5% had late on-set celiac disease, showing that even though there is a correlation, it might not be due to deficiencies. However, in the remaining 35.5% with childhood onset celiac disease, malabsorption of folic acid has been linked. Migraines are often the result of reduced blood flow to the brain. A gluten free diet has been shown to normalize this blood flow leading to improved/resolved migraines. Just a personal interlude here. While I don’t suffer from migraines, it is something that runs in my family on my maternal side: my sister, grandmother and uncles. I have two genes for celiac disease, one from my mother, increasing the chance that the relatives on that side have the gene, too. While most haven’t gone gluten free yet (I’m still working on them), my sister has. Her mind splitting migraines, that have existed since she was six, have virtually disappeared in the last 6 months that she has been on a gluten free diet.


Hoggan, R. (1996 , July 26). Fibromyalgia and celiac disease. Retrieved from http://www.celiac.com/articles/117/1/Fibromyalgia-and-Celiac-Disease—By-Ronald-Hoggan/Page1.html.
Libonati, C. (2007). Recognizing celiac disease. Pennsylvania: Gluten Free Works Publishing.
Margutti P, Delunardo F, Ortona E. Autoantibodies Associated with Psychiatric Disorders. Current Neurovascular Research. January 2006; 3: 149-157.
Petersen, V, & Petersen, R. (2009). The Gluten effect: how “innocent” wheat is ruining your health. True Health Publishing.


Gluten Free Primer

The gluten free diet can seem overwhelming at first, but with some practice and some simple first steps, you will be on your way to a healthier life. As you start to feel better with your new lifestyle, you will see that the gluten free diet really does become easier with time.

Avoid all gluten containing foods.

This includes, but is not limited to wheat, rye, barley, malt, spelt, kamut, triticale, couscous, wheat starch, beer, oats, pasta, breads, and sweets.

Beware of hidden sources.

Gluten can be found lurking in candies, soy sauce, deli meats, cheeses, envelopes, stamps, chapstick, cosmetics, play dough, toothpaste, mouthwash, medications, vitamins and more.

Check all labels, often.

Many processed foods purchase their ingredients from the cheapest source. That means those chips you love with corn starch in them one month, may contain wheat starch the next. Make sure you check labels every time you purchase packaged food and call the manufacturer if you are unsure about an ingredient. Packaged items claiming to be “gluten free”, but processed in facilities that contain wheat should be avoided.

Check your personal hygiene products.

This is a controversial issue and many healthcare professionals will tell you that your personal hygiene products don’t matter. The Gluten Free RN disagrees. If you have dermatitis herpetiformis, there are small tears in your skin. Putting gluten containing lotions on your skin is like pouring gluten directly into your blood stream.

Check out Dessert Essence and Gluten Free Savonnerie for gluten free brands.

Clean out your kitchen.

Empty your cupboards and give the gluten containing products away. Clean out the utensil drawer. Replace your wooden cutting boards and spoons, your toaster, sponge, and bread machine. If you MUST keep gluten containing food in your house, put it in a separate cupboard on a different counter and away from the rest of the food.

Be aware of cross contamination.

This is especially important if you share the house with gluten-consuming family members. We had a patient once complain that her peanut butter was making her sick. No, it was the breadcrumbs in the peanut butter from her son double dipping his knife while making sandwiches. Ideally, you will have a gluten free kitchen. If that is just not possible, have clearly labeled separate containers for butter, mayonnaise, peanut butter, jelly, honey and anything else that you may need to spread on bread. Separate utensils and sponges and a different toaster are also important.

Furthermore, flour is airborne. If anyone is baking in your house, it is very likely that the flour has gotten onto your gluten free area. You will need to re-sanitize before eating.

Be careful eating out, even at restaurants that have gluten free menus. If they do not have a separate kitchen and are preparing gluten containing items as well, it is very likely that your dish has been contaminated. Avoid anything fried, as they probably fried croutons, onion rings or breaded items in the same oil. Bread may have been grilled in the same area that your chicken breast is on, cut with the same utensils or placed on the same counter.


Myths and Misconceptions

Myth: Children “grow out” of celiac disease.

Fact: Celiac disease is chronic. If you have ever been diagnosed with celiac disease, you will need to avoid all gluten for life.

Myth: You can be “cured” of celiac disease and eat gluten again.

Fact: Celiac disease is chronic and cannot be cured, despite what a physician, chiropractor or alternative health doc may tell you. If they tell you that you will be able to eat “a little bit every once in awhile” after their treatment- they are lying. Turn around and run.

Myth: Only really skinny people have celiac disease.

Fact: Patients with celiac disease come in all shapes and sizes. Damage to the small intestine causes deficiencies and malnutrition. Malabsorption of fat in celiac disease is especially common leading to inadequate amounts of the fat soluble vitamins A, D, E, and K. Calcium and magnesium absorption are also hindered along with essential fatty acids- linoleic and linolenic acid. These deficiencies lead to a feeling of starvation, stimulating appetite. Furthermore, low energy and fatigue, two common symptoms of celiac disease, inhibit motivation to exercise. A gluten free diet in obese individuals with celiac disease commonly leads to a 5 to 8 pound weight loss within the first week! So ditch your notion that going gluten free doesn’t apply to you and your spare tire.

Myth: In order to have celiac disease, you must have diarrhea.

Fact: Have you heard of the “iceberg of celiac disease” yet? The basic premises is the classical symptoms of celiac disease, diarrhea, bloating, and weight loss make up that tiny tip of the iceberg above the water. However, we now know that celiac disease has over 300 associated symptoms and conditions, making it particularly difficult to recognize. Constipation, neurological disorders, fatigue, weight gain, migraines, autoimmune diseases, ADHD, autism and fatty liver disease are just some of the issues making up the huge base of the iceberg under the water.

Myth: It’s an allergy to wheat.

Fact: Allergies are caused when your immune system overreacts to an environmental factor most people can tolerate, producing IgE antibodies to the food. IgE antibodies then bind to the allergen causing immune mast cells to destroy it, releasing histamine in response. The histamine is responsible for the itching, swelling, redness and/or cramping that then occurs. Wheat is considered one of the top 10 allergens, along with soy, dairy, fish and eggs. Allergies lead to quick, defined responses and are something that can be outgrown.

Celiac disease, on the other hand, is an autoimmune disease and can’t be defined in such a cookie cutter fashion. Exposure to gluten causes the immune system to produce antibodies to the protein gliadin as well as auto-antibodies. These auto-antibodies mistakenly damage specific organs and tissues. Common targets of the auto-antibodies in celiac disease are the small intestine, the insulin-producing islet cells of the pancreas, and the nervous system. There are over 300 associated symptoms to celiac disease and reactions to gluten usually do not occur immediately.

Myth: It doesn’t matter if my personal products have gluten in them.

Fact: The information available to this question is completely inconclusive. It has been argued that the gluten protein is too large to be absorbed through your skin. The Mayo Clinic in fact, specifically talks about how gluten in your skin care products does not matter, and suggests that any reaction to such products is only due to an underlying allergy, such as to wheat. However, those with skin rashes like dermatitis herpetiformis have tiny micro-tears in their skin. By putting on wheat germ oil or triticale containing products, they are essentially pouring gluten directly into their blood stream.

I have seen reactions to gluten containing skin products in several of my clients, including myself, over the years. It is my opinion that living gluten free means replacing your personal products as well. Try Gluten Free Savonnerie or Desert Essence if you are interested.

Myth: Celiac disease only affects your gut.

Fact: Dermatitis herpetiformis, insulin dependent diabetes, migraine headaches, osteoporosis, depression, ADHD, rickets, hepatitis, brain atrophy, infertility, thyroid imbalance, cardiac abnormalities, lymphoma, and bronchiectasis are just some of the over 300 symptoms associated with celiac disease. Every organ and tissue in the body can be affected by gluten.

Myth: Celiac disease is common in Europe but rare in the United States.

Fact: Just because you don’t see something does not mean it doesn’t exist. Celiac disease is diagnosed much more in Europe than in the United States. The prevalence of celiac disease in both the US and Europe is currently estimated at about 1%. The Gluten Free RN suspects that this estimate will continue to increase in the next few years.

Myth: Only white people get celiac disease.

Fact: A study by Dr. Carlos Catassi found that 5.6% of Saharawi children had elevated endomysial antibodies, a common marker of celiac disease with 100% specificity. Celiac disease has been reported in Southern Asia, the Middle East, Brazil, West and East Africa, and in South American Indians in Chile. Celiac disease affects all humans, regardless of race, gender or age.

Myth: My test was negative so I don’t have celiac disease.

Fact: One negative test for celiac disease does not rule you out.  First, these tests can give a false negative (see Serological Test). Second, you must be on a gluten containing diet to have a positive test. Third, levels of antibodies in the blood can be cyclic, meaning a patient can have a negative test one month and a positive test the next. Plus, just because you don’t have celiac disease now, that does not mean you won’t get it in the future. Dr. Karin Larsson in Sweden recommends screening children with type 1 diabetes for celiac disease every year for at least 3 years. If you suspect celiac disease, Gluten Free RN suggests you do the same even if your doctor said you are “ruled out”.

Myth: Gluten free food doesn’t taste good.

Fact:It does. Just last night I had chips and salsa, lamb chops with mashed potatoes, and bananas foster over vanilla ice cream. We have been known to eat gluten free fish and chips, cupcakes and cinnamon rolls here at the Gluten Free RN office. I believe that this comment stems from ignorance of what the gluten free diet contains and misconceptions that gluten containing bread needs to be at every meal. It is true, gluten free alternatives to baked items have come a long way and to those who endured the gluten free “canned bread” days of the 1950s- I apologize. But, if you think you won’t eat well on a gluten free diet I challenge you to stop by Andina’s in Portland or Living Earth Bakery in Corvallis. Bon Appétit!

Myth: The gluten free diet is expensive.

Fact: It can be. Yes, gluten free breads do cost more than gluten containing ones, and tapioca and rice flour cost more than wheat flour. In the beginning a lot of people replace their gluten containing foods with gluten free alternatives, which usually cost more. However, there are some tricks that can help you keep these costs down. Make your own breads with a bread maker and buy the “flours” from Big River Grains. It may take awhile to find a good recipe but the warm smell of freshly baked GF bread is worth it. You may realize that you don’t need these packaged alternatives after all. Experiment with other gluten free starches as alternatives to bread at meals. Rice is low cost and easy to prepare. Quinoa is delicious. Even potatoes are versatile, cheap and familiar.

Myth: The gluten free diet is a fad diet.

Fact: True, there have been some claims lately about gluten free as a new weight loss miracle. For some it is, but for others who are underweight or average weight going gluten free have no effect, or actually lead to weight gain. Mostly, I hear this comment a lot from people who have noticed words like “celiac” and “gluten” everywhere recently. I think it is wonderful! The United States is finally recognizing one of the most common autoimmune diseases and taking note that it can actually be completely controlled by diet. This is hard for our Western medicine brains to wrap around, but until are diagnosis rates increase from 3% to 100% in the estimated 1 out of 100 Americans with celiac disease, you will continue to see this “fad diet” increase in popularity.


Quit Gluten

Of course, there is an easier way to test whether you are sensitive to gluten. Going on a completely gluten free/casein free diet for at least six weeks.

Casein is the protein found in dairy. It is similar to gluten and has been found to cause an adverse reaction in those who already have villous damage. Therefore, eliminating dairy from your diet for at least the first six weeks may help promote intestinal healing.

So, six weeks on a gluten/casein free diet. Even if your tests are negative for celiac disease, you have the option of trying a gluten free, dairy free diet for at least 6 weeks to determine if your symptoms improve or resolve altogether. This is referred to as a clinical trial. For many people, this is long enough to start to recover from bodily damage caused by gluten consumption. However, there are some people that require a longer period on a gluten free and dairy free or Paleo type lifestyle in order to feel better. Remember, it takes at least 6 months to a year to heal the intestinal lining.