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  • Monique Attinger
    Monique Attinger

    Get Your Super Foods: Eating High Nutrition Without the Oxalate

    Reviewed and edited by a celiac disease expert.

    Journal of Gluten Sensitivity Spring Issue - Volume 15, Number 2 (Originally published April 14, 2016)

    Get Your Super Foods: Eating High Nutrition Without the Oxalate - Photo: CC--Lance Fisher
    Caption: Photo: CC--Lance Fisher

    Celiac.com 06/07/2016 - The world of nutrition is currently obsessed with "super foods". Super foods are loosely defined as foods that are extremely high in nutrients – particularly antioxidants and vitamins – and which everyone is heartily advised to add to their diet.

    The problem with this approach is that, while focused firmly on nutrients, we are ignoring anti-nutrients! According to Wikipedia, an anti-nutrient is a compound in food that interferes with your absorption of other nutrients from a food. Most foods have varying amounts of anti-nutrients, toxins and other problematic compounds. A truly healthy diet will include weighing the good against the bad, while maintaining as much variety as possible. Once we have a clearer picture of how a food helps to support our nutrition, we can then decide how to include it in our diet and in what amount.



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    Obviously, certain health conditions mean that certain foods are no longer healthful. For those with celiac disease, this means that grains with gluten in them are damaging to their health. It really doesn't matter how healthy wheat bran is for some – for celiacs, wheat bran is harmful. For those with allergies, you have a similar issue. Foods that may be healthy for some may not be for others.

    Another issue with food and health can be related to anti-nutrients. For instance, in the vegetarian world, we now hear more about phytate – often found in legumes – and how to reduce it in a plant-based diet. Salicylate is another anti-nutrient found in plant foods, and more people are finding that they need to consider this when choosing foods.

    Plants may also contain toxins, which are totally natural to the plant, but not good for you. Wikipedia indicates that a toxin is a substance that is directly poisonous, and capable of causing disease. For instance, some foods may contain naturally occurring cyanide compounds, or even arsenic in various forms. While we may not get enough to cause immediate problems, we certainly don't want to consume a lot of these toxins!

    Oxalate is another toxin present in many otherwise healthy foods. Oxalate poses many challenges for human health. It's a free radical. It promotes inflammation in your body. Because of its biochemistry, oxalate can be stored throughout your body, and can be particularly concentrated at the sites of previous injury, inflammation or surgery. Fundamentally, oxalate can be stored in tissues wherever the cells have taken it up. As a result, if you are someone who is absorbing too much oxalate from your diet, you can be contributing substantial stress to your body.

    Reducing the amount of oxalate in your diet cannot hurt you – you are reducing a totally non-nutritive substance for which the human body has no need and which contributes directly to health issues.

    However, reducing too many food types or nutrients in your diet can have negative impacts. The greater the variety in your diet, the better the chance that you are getting all your needed nutrients. The good news is that you can have a nutritious, high variety diet, and retain "super foods" in your diet which are high nutrition, gluten-free and low oxalate.

    Get Your Fiber

    The preponderance of processed foods in our diets can often leave us with hardly any fiber in our diet! Many gluten-free options are very low in fiber, and this can affect gut health. Fiber is not a direct nutrient for us per se – but it is a needed component that contributes to better gut flora and better health overall.

    Insoluble fiber adds bulk to the stool and promotes regularity. Most of us are not getting enough of this fiber, and as a result, can develop poor motility and constipation.

    Given that many whole grains are not good alternatives for those on a gluten-free diet, and the bran of many grains are actually high in oxalate, how can we get more healthy insoluble fiber? The good news is that one nutritional powerhouse is not only full of healthy insoluble fiber – it's also a plant source of Omega 3's. So a great solution to lack of insoluble fiber is flax seeds.

    Flax seeds can be eaten whole – but to really get the best benefits from this super food, it's best to grind your flax. Keep whole flax seeds in the freezer to preserve their freshness, and don't grind until just before using them. The recommended daily serving (which will also provide some soluble fiber) is two tablespoons.

    According to the Mayo Clinic, the right fiber goes much further than just regularity. If you increase soluble fiber, it can help reduce both blood sugar and cholesterol. Soluble fiber creates a gel-like material in the gut, and some research indicates that it may help to feed our gut bacteria.

    The benefits of soluble fiber are well known when it comes to cholesterol. The recommended food to get more soluble fiber is oats. However, whole oats are high in oxalate, and the oat bran has confusing test data.

    The solution? Psyllium! Pysllium is the medicinal ingredient in the popular product, Metamucil. Psyllium contains both soluble and insoluble fiber – and research on it shows that it can help to reduce cholesterol as well as normalize blood sugar. You can add it to baked products (but adjust the liquids), or sprinkle on foods. It's virtually tasteless – although you might find it does add some thickness or texture to liquids or foods.

    Fruits and vegetables are also good sources of both soluble and insoluble fiber and many are lower oxalate. Cabbages, lettuces, onions, cucumbers (with the skin) red bell peppers, orange, mango and grapes are all good low oxalate sources of fiber in your diet.

    Fruits

    There is no shortage of healthy options in fresh fruits that are also low oxalate, but the blueberry holds a special place among even the healthiest fruits.

    Research shows that blueberries are one of the most antioxidant rich foods available, and are included in most lists of super foods. Blueberries are one of the highest rated foods on the ORAC scale. The ORAC scale was developed by researchers at Tufts University, and is the measure of Oxygen Radical Absorbance Capacity (hence the abbreviation ORAC). What this really means for you is that the higher something ranks on the ORAC scale, the more antioxidants you are getting.

    Blueberries are stars on this scale, with an ORAC value of 4,669 per 100 grams, according to Superfoodly.com. Wild blueberries rank higher than cultivated ones – but you can't go wrong with any blueberry.

    Another fruit that ranks very high in ORAC is the lowly cranberry. While very tart (and difficult to eat raw), cranberries are second only to blueberries in antioxidant levels. To reduce the acidity of the fruit, and make them more palatable, cook with water and some honey. Cranberries are very easy to cook and make a lovely side dish for fattier meats like lamb. They aren't just for turkey anymore! Consuming these tangy fruits also help to contribute to bladder health.

    For nutrition on the go, turn to golden seedless raisins. While dark raisins are tasty treats, the golden seedless variety is both lower in oxalate and higher in antioxidants. In fact, golden seedless raisins actually have a higher ORAC score than fresh blueberries! Combine that with convenience and portability, and you have an easy way to get more antioxidants in your day. Raisins also make a great treat for kids, because of their sweetness.

    Is the apple a super food? Yes it is! Easy to purchase and pack for lunch, this popular fruit is full of quercetin, which protects cells from damage and is often recommended for those with allergies. Not only is it full of healthy antioxidants, it also has twice the fiber of other commonly eaten fruits, including peaches, grapes and grapefruit, according to the site EverydayHealth.com.

    Veggies

    When looking at veggies, many of the foods that are considered most healthy are also very high in oxalate. Everyone talks today about how healthy the sweet potato is for us: but did you know that a ½ cup of sweet potato can have over 90 mg of oxalate in it? For people trying to eat a low oxalate diet, a single serving would be more oxalate than they should consume in a whole day!

    However, while avoiding high oxalate foods, you do need to eat color and variety to get your needed nutrition. If you want a lower carbohydrate, orange veggie – consider the kabocha squash. Not only does this lower carb, low oxalate veggie work as a substitute for many recipes that require sweet potato, it also has a very good nutrient profile. Self Nutrition Data lists Vitamin A and Vitamin C as well as a good serving of Folate, in addition to good amounts of calcium, magnesium, phosphorus and potassium.

    Of course, you want other colors in your veggies as well – and green leafy veggies are particularly known for their nutrition. While spinach would be a bad choice because of extremely high oxalate, you have lots of other greens to choose from. Focus on lower oxalate varieties of kale, including purple kale. The website, The World's Healthiest Foods, lists kale as a food that can lower cholesterol (if steamed) as well as lower your risk of cancer. Of course, kale is part of the cruciferous vegetable family, and these foods have many anti-cancer benefits. Kale is an excellent source of Vitamin K (your blood clotting factor), as well as vitamin A, vitamin C, manganese, copper, B6 and others.

    Don't forget your other brassicas while you are focusing on kale! The cruciferous veggies also support our bodies natural detox processes, which is very valuable in today's world where we are exposed to many environmental toxins. Broccoli is another low oxalate brassica that is good for you, whether you are eating the mature broccoli heads, or feasting on broccoli sprouts. Note that broccoli sprouts do have an edge over their more mature cousins – they might just taste better, and given that they can be added to a sandwich for some satisfying crunch, might be easier to work into your daily diet. Research gives the sprouts a further edge in cancer risk reduction and some research indicates they may actually help to prevent stomach cancer.

    Another excellent leafy green is the lowly turnip green. Turnip greens are very high in calcium, and are even lower in oxalate than kale. A cup of cooked turnip greens will also get you more than 100% of the RDA for vitamin K. In addition, you'll get vitamin A, vitamin C, folate, copper, manganese, calcium, and vitamin E. Each serving will give you 15% of your daily requirement for B6.

    When thinking of deep red veggies, go for red cabbage. This versatile veggie is very low in oxalate, and that lovely red color means that it has even more protective phytonutrients, according to World's Healthiest Foods, than its green sibling! One serving of red cabbage delivers more than four times the polyphenols of green cabbage.

    Fats and Oils

    You can't read on super food nutrition anywhere and not run into the avocado. A great source of healthy monounsaturated fat, the avocado has also been linked to reduced risk of cancer, as well as lowered risk of heart disease and diabetes. While we think of avocados as a fatty food, they are actually a good source of fiber, with 11 to 17 grams of fiber per fruit! You'll also get a dose of lutein, an antioxidant recommended for eye health.

    Web MD says that lutein is a potent antioxidant, which is found in high concentrations in the eye. The combination of lutein and zeaxanthin (another antixodant) help to protect your eyes from damaging, high energy light. Some research indicates that a diet high in lutein and zeaxanthin may reduce the risk of cataracts by as much as 50%.

    Coconut oil is another excellent fat that can benefit our bodies in a host of ways. Doctor Oz lists a number of benefits, including supporting thyroid health and blood sugar control. This may be related to the form of saturated fat that is found in coconut oil, called lauric acid. Lauric acid is a medium-chain triglyceride. This kind of fat actually boosts immune system, and has antibiotic, antiviral and antifungal properties. It may also be a tool in your weight loss arsenal. A study in 2009 actually showed the eating 2 Tablespoons of coconut oil daily, allowed subjects to lose belly fat more effectively. Even better news for those who are following a low oxalate diet: both avocado oil and coconut oil have zero oxalate!

    Nuts, Seeds and Legumes

    Unfortunately, many foods in this category are high oxalate – and so won't qualify for our super food list. While you might be able to have a couple of walnut halves, or a similar amount of pecans, nuts are generally just to high to have in servings of more than 3-5 pieces.

    However, if you are looking for a superfood in this category, look no further than pumpkin seeds! Pumpkin seeds are an excellent source of vegetable-based protein, and are another portable food. A great snack for the health conscious can be made with raisins and pumpkin seeds – both are low oxalate, and the protein of the pumpkin seeds will help you to stay fuller longer. According to LiveStrong.com, a handful of pumpkin seeds will give you over 8 grams of protein. At the same time, pumpkin seeds are low in sugar, and provide you with fiber as part of the carbohydrate in them. You will also get vitamin A, vitamin B, vitamin K, thiamine, riboflavin, niacin, magnesium, calcium, iron, manganese, zinc, potassium, copper and phosphorus in that small and compact package!

    If pumpkin seeds don't qualify as a super food, it's hard to say what would!

    When it comes to legumes, many are stars for protein, but one of the best options is the red lentil. Lentils in general are easier to prepare than other types of legumes – they do not require the soaking and preparation time that many legumes do. At the same time, they are powerhouses of nutrition, with molybdenum, folate, fiber, copper, phosphorus and manganese all at more than 50% of your daily requirement. One cup of cooked lentils will also give you 36 % of your daily need for protein, according to World's Healthiest Foods. And all this nutrition is provided in a food that is virtually fat free and low in calories. You cannot go wrong!

    As an added benefit, some studies have found that eating high fiber foods like red lentils may reduce the risk of heart disease. The more fiber, the lower the risk of heart disease.

    Fish

    We are always hearing that we need to have more fish in our diets. It seems sometimes that not a week goes by when we are not hearing that we should be eating less meat, and getting less fat – with the suggestion that more fish would benefit us.

    When you think of the super food of fish, you have to think of salmon. Salmon is a fatty fish, and it's one of the best sources available for omega-3 fatty acids. In today's world of processed foods, omega-3's are one of the nutrients that we don't get enough of.

    Your best bet with salmon is to get wild-caught fish. Farmed salmon do not have the same nutrient profile, which may be related to the kind of food they are fed. Along with the decreased nutrient profile, studies have indicated that farmed salmon contains significantly higher concentrations of a number of contaminants (including PCBs, dieldrins, toxaphenes, dioxins and chlorinated pesticides) than wild caught salmon.

    World's Healthiest Foods states that a 4 ounce piece of Coho salmon will get you 55% of your daily requirements for omega-3 fats. On top of that, you'll get more than 50% of your daily requirement for vitamin B12, vitamin D, selenium, vitamin B3, protein and phosphorus, as well as other B vitamins and minerals.

    Omega-3 fatty acids will provide you a host of benefits, from reduction of inflammation, to better brain function. Omega-3 fat is also heart healthy, and can contribute to a reduced risk of heart attack, stroke, high blood pressure and other cardiovascular disease. Research indicates that eating salmon at least 2 to 3 times a week will give you the best benefits.

    Spice it up

    Spices can be a bit tricky, if you want to keep your oxalate low. Many spices – while tasty – are very high in oxalate!

    A great example of this is turmeric. A staple in most curry recipes, turmeric is extremely high oxalate – so while it has a reputation as a super food, it would not be a good choice if you are trying to keep your oxalate low.

    So what is your option if you love to eat foods spiced with turmeric? Well, the easiest approach is to stock your spice rack with a health food store supplement; cook with curcumin extract! While it may seem a bit odd at first, if you buy a curcumin extract (which is the extract from turmeric), you can get the flavor and leave the oxalate behind.

    While not technically a "food" when you cook with a supplement, you certainly get all the benefits of the original super food – turmeric – without the downside of oxalate.

    Another highly beneficial spice is cinnamon. Research clearly shows how helpful cinnamon is for managing blood sugar. However, ground cinnamon is an extremely high oxalate spice. So how can you get the flavor you want, while avoiding the oxalate?

    One solution is to cook with a cinnamon extract that you buy at the health food store! One brand known to be low oxalate is Doctor's Best. It is a dry extract in capsules – simply break open the capsules and use the contents in your dish. This allows you to get all the therapeutic benefits of the extract as well as the taste.

    You can also cook with essential oils and culinary oils – but use them carefully. Essential oils can be very strong and can irritate the tissues of the mouth and digestive tract. One drop of good quality essential cinnamon oil will replace as much as 1 tablespoon of ground cinnamon. Culinary oils are made for flavoring – follow the directions on the product that you buy. Either way, you will get the taste – and you avoid the oxalate.

    Enjoying Your Food!

    As with anyone who wants to eat a healthy diet full of super foods, the trick is to focus on the best nutrition, and get lots of variety. While some foods may not be as "super" as others, if you are making colorful meals, with healthful selections from across the spectrum, you'll be doing your body a favor with flavor!

    Where Does Oxalate Go?

    Once you have eaten oxalate, you have to excrete it through urine, feces or sweat. But what happens if you don't? A study on rats was able to trace where in the body a dose of oxalate remained. The scientists used a special carbon molecule – carbon 14 – in the oxalate they gave to the rats, so that they could find the oxalate wherever it went in the body.

    What they found is that if the oxalate was not excreted from the body, it was stored everywhere:

    • 68% in the bones
    • 9% in the spleen
    • 8% in the adrenal glands
    • 3% in the kidneys
    • 3% in the liver
    • 8% in the rest of the body

    These results are in direct opposition to conventional medical thinking, that oxalate only affects the kidneys. It clearly shows us that the whole body – but particularly the bones, key glands and detoxification organs – are all affected. This is another good reason to reduce the amount of oxalate in your diet!

    Is Spinach Really That Bad For You?

    A relatively simple study in the late 1930's looked at rats fed a diet that was only adequate in calcium. To bring the levels of calcium up, the rats were given spinach, equaling about 8% of their diet. While most of us think of spinach in terms of iron, it is also relatively high in calcium. The results of the study were shocking:

    • 47. A high percentage of rats died between the age of 21 days and 90 days
    • 48. The bones of the rats were extremely low in calcium (despite adding it to the diet through the spinach)
    • 49. Tooth structure was poor and dentine of the teeth poorly calcified
    • 50. For these animals, reproduction was impossible.

    Researchers concluded that not only did spinach not supply the needed calcium (because of the oxalate), but the spinach also rendered the calcium from other foods unavailable. What we know now is that oxalate is a mineral chelator – and rather than delivering minerals, it was robbing them from the rats.

    Getting Your Vitamin K

    Vitamin K is a very important nutrient. Life Extension indicates that new research from 2014 links vitamin K to longevity. In fact, the highest intakes of vitamin K reduced the likelihood of dying from any cause by 36%! So, you definitely want to get vitamin K in your diet.

    However, most of us think that we need to eat high oxalate greens – like spinach – in order to get good amounts of vitamin K. Nothing could be further from the truth! Kale, collards and turnip greens are all higher in vitamin K than spinach, and they have a fraction of the oxalate.



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    Thanks Monique for this article. Just curious if you found anything about ground flax seeds containing cyanidosides? I was grinding and eating them for their omega-3 content but was somewhat perturbed to find evidence they (like tapioca) have a cyanide problem, which over the long term might be additive?

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    On 5/27/2017 at 1:03 PM, Guest Bret said:

    I'm trying to find info on oxalate content of broccoli sprouts. Is there a potential risk of any kind consuming 3 to 4 ounces of raw broccoli sprouts daily? The studies showing benefits had subjects consume large quantities.

    I have also been trying to find info on oxalate content of broccoli sprouts. Some websites say it's high but they don't mention the values or links. The curious thing is that broccoli seeds are higher in sulphoraphane levels than broccoli sprouts. And at least one source says that broccoli seeds are quite low in oxalates. ( 2 mg in 1 tablespoon). 

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    On 6/20/2020 at 6:10 PM, Guest tangomarty said:

    Avocados are high in oxalate, contrary to what is stated in this article. Be careful with portion size. 

    I am aware that avocados are VERY HIGH in salicylate (which, which combined with high oxalate, is believed by some to be the cause of many aliments, and it could be possible that some of the symptoms of toxicity of either could overlap), but I have not found one source which states that avocados are high in oxalate.  And I have been researching plant toxins for a while.  (Avocados do have some oxalate, but very little.  Maybe the seed or skin has a lot of oxalate --- different parts of the fruit have different chemicals --- but not the flesh itself.)

    If you got kidney stones from eating avocados (and you were avoiding oxalate for a long enough time --- that your body was able to flush out all stored oxalate) BUT YET you STILL got kidney stones, then, are you sure that they weren't uric acid kidney stones (which https://www.mottchildren.org/health-library/tw9534 says are caused from "Aspirin products (salicylates).")?  For those reading this who are not aware, there are different types of kidney stones.  (And if it turns out that you did have uric acid kidney stones, AVOID sardines like the plague and try to drink lime juice --- but of course rinse your mouth afterwards to minimize tooth decay from the acid.)

    I personally do not eat avocados because of its salicylate content, despite how much I LOVE their taste. (Maybe that's why it bothers you too?)

    Just as a test, eat any food which is on a high salicylate foods list.  Then, take a little B6 and vitamin C and see if that makes you feel relief.  If so, salicylate is the culprit.  (You have what's called "salicylate sensitivity" or maybe even "salicylate intolerance" if you get very quick (and HARSH) reactions to high salicylate foods.)

    And whoever is reading this finds that salicylate is their problem (and not necessarily oxalate), be aware that aspirin is salicylate in a pill . . .

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    This article was interesting and valuable, but it says broccoli is low oxalate.  I came to this article only after the reality that everything else I just found says that broccoli is high oxalate.  In fact my whole search began about broccoli and its oxalate content.

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    OK... 68% of oxalates stored in the bones... that's a big WOW!  Does anyone know whether it's bound to calcium as it is for kidney stones. Or whether more calcium in the diet would displace it? Or basically how does one shift the oxalates from the bones? Thanks in anticipation.

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  • About Me

    Monique Attinger

    Monique Attinger, the main author of this article, works as "Low Ox Coach" to support those who want to follow a low oxalate diet. Both Monique and her co-author, Karla Wiersma are moderators of the support groups, "Trying Low Oxalates", which are found both on Yahoo Groups and Facebook. Through these groups, Monique and Karla have supported more than 18,000 families in their journey to reducing oxalate in their diets. Monique and Karla, with Susan Costen Owens and Patricia de la Garza, are part of International SciBridge, VZW, a non-profit in Belgium dedicated to exploring the role of oxalate outside the kidney. International SciBridge is pursuing a variety of projects, which will move research forward in the understanding of chronic disease.


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    The cancer concern, according to most studies, is most prevalent in long-standing UNTREATED celiac disease. Gastrointestinal cancer, such as lymphoma, even with this increased risk, is still noted as relatively rare according to Nancy Lepid, celiac disease and gluten sensitivity Expert. Yet people with celiac disease may have a near two-fold increased risk of coronary artery disease compared with the general population, according to research to be presented at the American College of Cardiology's 63rd Annual Scientific Session. This study is the first to look at the association between celiac disease and coronary artery disease and adds to the evolving understanding of how systemic inflammation and autoimmune processes might influence cardiovascular disease development. Data also showed a slightly higher risk of stroke among people with celiac disease compared to controls. Time and time again it is repeated that celiac disease is a chronic inflammatory condition of the digestive system that can damage the small intestine, eventually interfering with the absorption of key nutrients. People with celiac disease are unable to tolerate gluten because gluten is thought to trigger an immune and inflammatory response in the gut.
    Did you know that researchers found a significantly higher prevalence of coronary artery disease among patients with celiac disease compared to the control population (90.5 percent compared to 5.6 percent, respectively)? Data showed a similar trend among younger patients those under age 65, (WOW!) That is younger!?!) Compared to those without celiac disease (4.5 percent compared to 2.4 percent). This is an important study because it highlights a specific patient population who might be at higher risk for coronary artery disease, even in the absence of traditional cardiovascular risk factors, according to R.D. Gajulapelli, M.D. , clinical associate at the Cleveland Clinic and co-investigator of the study. "Our findings reinforce the idea that chronic inflammation, whether it's from an infection or a disease, can have an adverse role in coronary artery disease and heart health in general."
    I was urged to have bowel scopes every five years when I was diagnosed with celiac disease and dermatitis herpetiformis, but I was never informed of the increased risk of coronary artery disease, or that people with celiac disease were slightly more likely to have high cholesterol. Dr. Gajulapelli himself said: "We were surprised by the strength of the association of the high prevalence of coronary artery disease, "Especially" in younger people. Patients and doctors should be aware of this association. If celiac disease affects an estimated 1 in 133 Americans, but experts believe upwards of 80 percent of people with celiac disease are under-diagnosed or misdiagnosed with conditions such as lactose intolerance and irritable bowel (often called the "Catch-all" diagnoses when a physician does not know what is wrong with a patient). Previous research shows celiac disease has been on the rise and is four times more common now than it was 50 years ago. The only treatment for celiac disease is adopting a gluten-free diet.
    So you believe that these rapidly growing numbers are directly related to earlier or better diagnosis, or the education of physicians today? I prefer to believe that it is the better education of the family physician with regard to the signs of celiac disease.
    To close I wanted to surprise you with some statistics with regards to the sales of gluten-free products, which in 2010 reached $2.6 billion, and were expected to exceed more than $5 billion in 2015. This year, with the increase in prepackaged gluten-free foods and the marketing restaurant guidelines one could estimate that it will be well over $15 billion. Celiac patients used to have to prepare everything from scratch, but we are quickly buying into the boxed fast-food "celiac generation".


    Yvonne (Vonnie) Mostat, RN
    Celiac.com 01/11/2017 - Did you know that Advertising has "Cottoned onto us?" In December all the magazines are about baking, foods, cakes and bakes, candies and calories. If you are not aware of what "Cottoned up" actually means, it means that even if we have celiac disease, gluten sensitivity or dermatitis herpetiformis, they know that in December, prior to Christmas, we are geared up to baking tasty, sweet, gluten-free treats. And in January we are into healthy eating, like natural soups, low calorie warm and nutritious eating, cost saving ideas, because we have just gone through Thanksgiving gluttony and Christmas eating.
    At one time we celiac people did not have the options that we have today. It was white rice bread from the freezer of the store, full of frosty tops, and vague cookies that cost $3.00 each. Now we have so many options we can get fat too, starting with Thanksgiving right up to New Year, when the new magazines come out with calorie cutting ideas, weight loss regimes, and a stringent diet!
    Did you know that celiac disease affects people differently? According to the The University of Chicago Celiac Disease Center: "There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease have no symptoms at all. However, people without symptoms are still at risk for some of the complications of celiac disease". For example, my 19 year old grandson's girlfriend has celiac disease, and she likely had it all her life. She was tested for celiac disease because she had "tummy aches before I write exams". That was it! Fortunately she had a bright mother who took her to the doctor and asked for the simple blood test for celiac disease. Sure enough, after doing the blood test and undergoing the biopsy of the jejunum, she had celiac disease.
    She was not skinny because she was 18 and growing, she was skinny because of malabsorption and eating her daily breakfast of cinnamon toast, and her usual lunch of peanut butter and jelly sandwiches. I am a little wary of the biopsy of the jejunum because as a nurse I found several discrepancies in the testing process. I have seen where a gastroenterologist who did failed to biopsy the correct area and told patients that they were negative for celiac disease. The patients became quite ill and the test was repeated by another gastroenterologist, and the test proved positive for celiac disease. In other words, the two patients did indeed have celiac disease.
    Did you know that the Head of dermatology at the University of British Columbia recommends Dapsone as the drug of choice for clearing up dermatitis herpetiformis? It is called the “Golden Standard” of treatment, which he teachers to all his students of dermatology. I had three biopsies of the lesions on three different places in my body. It was not until the fourth biopsy that they acquired a Positive for dermatitis herpetiformis. It is very difficult to obtain punch biopsies of the DH. But if they put you on Dapsone for four days the lesions begin to clear up almost immediately. It took longer for the lesions in my scalp to go away, around six month, and four days for those on the other parts of my body to disappear. And they were so itchy (as any of you with DH know) that I actually contemplated cutting all my hair off. I tried Quellada liquid thinking it might be fleas, bed bugs, or some other strange skin disorder. "A little learning is a dangerous thing", that is what they say to all nurses.
    Those of you who are newly diagnosed with DH and placed on Dapsone, please remind your doctor if he has not already told you that Dapsone can cause anemia. I was advised to take 2,000 Units of Vitamin C daily because it helps significantly with the anemia.
    According to an article by Lisa Fittterman in the Winter 2016 issue of Allergic Living magazine, a 28 year old California Mom was stymied by her child's reactions and celiac outbreaks because they are so vigilant about reading labels when shopping. The culprit was a new generic controller inhaler for her asthma. The Mom looked up the medication on the Internet and saw the word, "Starch". She says the drug turned out to contain gluten as an additive. She hit roadblocks at every turn.
    With celiac disease now affecting 1% of the people in North America, "drugs can present a distressing unknown". What is an excipient they ask? Inactive ingredients used as binding agents tent to give bulk and allow them to absorb water and disintegrate. They are derived from foods such as corn, potato or wheat starch. Independent investigations have shown that wheat starch is used less frequently than the other two because it doesn't bind well." When you ingest a new drug without knowing what it contains it is like walking down a road blindfolded says Sue Newell, the Canadian Celiac Association's manager of operations. "We teach people how to read labels and cut through jargon to identify every ingredient - but with prescription drugs they can't do that...they may need to take drugs, but they don't feel safe."
    The US. Based National Foundation for Celiac Awareness (NCA) released in the Fall of 2014, almost 25 percent of the 5,625 people with celiac disease and gluten sensitivity reported having experienced gluten-related symptoms to medication. Patients and health–care providers said this has led to anxiety and non-compliance in taking drugs. Both Canada and the U.S.A. Food and Drug Administration have national standards of less than 20 parts per million (ppm) of gluten for a packaged food to claim to be gluten-free, but the requirements for food labeling do not apply to prescription or over-the-counter drugs. In May 2015, the FDA denied the request of a citizen's petition to either ban gluten as an inactive drug ingredient or require that its presence be labeled. The FDA said that "No oral-drug product is expected to contain more gluten than the amounts potentially present in foods that can be labeled 'gluten-free' under the FDA's food-labeling regulations."
    It is far from an official requirement in Canada. The Canadian Food and Drugs Act sets the regulations for labeling gluten and allergens, but the focus has been far more on food. A Health Canada spokesperson says that the 2014 plain-language labeling initiative additionally makes it necessary for pill package inserts to list ingredients. But Newell of the CCA says these listings are not as transparent as they sound. Though the protein is not often present in our medications, the bad news is that finding out for certain may take the skill of a detective or a sleuthing pharmacist.
    It is time for the celiac and gluten sensitive community, to unite and fight, write letters, speak to their pharmacists and repeat the fact that the person ordering the drug is "A brittle celiac," and all drugs need to be researched by the pharmacist prior to filling prescriptions.
    Steve Plogsted, a pharmacist with a special interest in tracking gluten, suggests: "Watch for the word 'STARCH' as an excipient on a medicine, as it's the only likely culprit to contain gluten. If the word is there, try to drill down through the manufacturer as to what kind of starch. If it is wheat, you will need to avoid it."
    One man took a stand for gluten-free drugs. Michael Weber was diagnosed with celiac disease on 2004, and immediately adopted the gluten-free diet to protect his health. BUT, after taking a generic for only a few days, the resident of Eastchester, New York, was distressed to find he was again developing symptoms, such as the dermatitis herpetiformis skin rash he had incurred before the condition was discovered. It turned out the pills contained gluten as an inactive ingredient. Shocked to find this undeclared exposure after he had been so careful, Weber contacted the FDA, but he was informed that the manufacturer wasn't braking any rules by not stating gluten's presence overtly. In 2008, Weber filed a citizen's petition requesting that the FDA either ban gluten outright in medications, or require manufacturers to label for the protein. Then, for seven long years, he got politicians to write letters of support, and made follow-up inquiries, but he received no replies.
    Finally, in 2016 the U.S. consumer protection group Pullback Citizen filed a lawsuit to elicit a response from the FDA. Last May the agency issued a 21 page decision that denied the request for a ban and stated that manufacturers already needed to identify gluten as an intentionally added inactive ingredient to any drug that is taken orally. The FDA said it did, however, plan to issue "draft guidance" for industry regarding gluten in drug products, but no time-line was given. FDA spokesman Stephen King explained the decision in an interview saying that if people with celiac disease are doing well on a gluten-free diet, they "should" not be harmed by the very low amounts of gluten potentially present in oral drug products. Conversely, if they aren't doing well, "we would expect {them} to consult with [their] physician about ways to further reduce overall exposure to gluten. Such efforts might first focus on the diet as the most significant potential course for oral gluten exposure."
    But Katie Einspanier, Weber's lawyer through Public Citizen, criticized the ruling as nothing more than a super-technical reading of the petition since the FDA's response focused on the possibility of gluten itself being an inactive ingredient. "The most likely scenario for gluten in drugs is that gluten is simply a natural component of another inactive ingredient and not separately added as an inactive ingredient." Weber is considering whether to draft a new petition with more precise language. We will keep you informed regarding this one man's fight for gluten-free drugs. He needs to be cheered, and we all need to sit down at our computer and help by writing to pharmacists, the FDA, and the College of Pharmacy.


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