CELIAC DISEASE-HIDDEN & DANGEROUS
Celiac disease Is a genetically-based autoimmune disorder in which specific peptides from wheat, rye, barley, spelt, kamut, and triticale [collectively called gluten] trigger progressive destruction of the villi of the small intestines. Gluten consumption can result in deficiencies of certain vitamins and minerals.
DERMATITIS HERPETIFORMIS is an expression of celiac disease characterized by a blistering, intensely itchy skin rash, found most frequently on the elbows, knees, buttocks and upper back. Patients with DH often present with mild or no gastrointestinal symptoms, but villous atrophy occurs in the majority of cases.
Celiac disease is now recognized as one of the most common inherited diseases; therefore first and to a lesser extent second-degree relatives are at a higher risk of having unrecognized celiac disease.
Symptoms
The symptoms of Celiac Disease can occur at any age and the number and severity of symptoms associated with untreated celiac disease vary greatly from person to person. In many cases the disease is silent and is discovered only by blood screening. The presence of obesity or constipation does not exclude the diagnosis of celiac disease.
The following symptoms may occur singly or in combination:
-anemia-iron, folate/vitamin B12 deficiency
-recurrent canker sores
-deficiency of Vitamins A, D, E, K
-easy bruising
-abdominal pain, bloating/cramping/gas
-bone/joint pain
-recurring/persistent diarrhea
-edema of feet & hands
-constipation
-menstrual irregularities
-extreme weakness and fatigue
-infertility in men and & women
-weight loss
-indigestion & nausea
-lactose intolerance
-migraines
-dermatitis herpetiformis
-depression
-elevated liver enzymes
-recurrent miscarriages
-peripheral neuropathy, ataxia, epilepsy with occipital calcifications
Additional symptoms in children:
-vomiting
-delayed puberty
-dental enamel abnormalities
-irritability and behavioral changes
-delayed growth
-short stature
CELIAC DISEASE FREQUENTLY OCCURS IN COMBINATION WITH OTHER CONDITIONS,such as
-type 1 diabetes mellitus
-osteoporosis
-Downs Syndrome
-lymphoma
-Turner Syndrome
-Other autoimmune diseases
-e.g. autoimmune hepatitis or thyroid disease.
Screening for Celiac Disease should be considered if there is a family history of celiac disease or if there are symptoms of celiac disease with any of the above diseases. There is a 10-15% chance of having celiac disease if it is in your family.
Diagnosis
The similarity of the symptoms with those of other diseases often leads to misdiagnoses such as irritable bowel syndrome, lactose intolerance, chronic fatigue syndrome and diverticulosis, resulting in even further delays. Blood tests-According to Celiac News 2010, the IgA-based tissue transglutaminase antibody (TTG)is a highly sensitive and specific teat and is currently the recommended screening test for celiac disease. Both the IgA and IgG are now considered redundant. False negative results can occur with these tests. False positive results can occur but are rare.
An intestinal biopsy, while an individual is on a gluten-containing diet, is required to establish the diagnosis.
A GLUTEN-FREE DIET SHOULD NOT BE STARTED BEFORE A BLOOD TEST AND BIOPSY HAVE BEEN COMPLETED, since it can interfere with making an accurate diagnosis.
Treatment
The ONLY TREATMENT for celiac disease, including those patients with DH, is a STRICT GLUTEN FREE DIET FOR LIFE. This enables the gut to recover and can reduce the risk of developing many of the complications of untreated celiac disease. The services of a qualified dietician and regular follow-ups with a physician are recommended. Join the CANADIAN CELIAC ASSOCIATION and their local chapter for valuable practical information and ongoing support: http://www.celiac.ca
The safety of oats in celiac disease has been extensively investigated. Clinical studies have shown that small amounts of pure, uncontaminated oats are safe for most adults and children. Most commercially available oats are contaminated with wheat, rye, or barley; however pure, uncontaminated oats are now being produced in Canada.
Being diagnosed with celiac disease today is not as bad as it was a few years ago. Foods today are delicious and are varied and abundant. With the help of the experts at your local health food store, you can live a normal and happy life with great-tasting foods. It’s also a great place to pick up information about celiac disease and mouth watering recipes.
Hidden Glutens
It is assumed that, patients with celiac disease, once diagnosed, can eliminate glutens from their diet safely by reading all the labels. For the most part, this is true; however there are some disguised glutens to be aware of.
MODIFIED STARCH: if it is corn, tapioca, or potato starch, it is safe.However we as a consumer do not know if the manufacturer has used wheat starch. Therefore, it is wise to avoid anything made with modified starch.
DEXTRIN: can be made from corn, rice, tapioca, or wheat. Avoid dextrin unless the label clearly indicates from what source its from.
CARAMEL COLOUR: can be made from dextrose(corn sugar), lactose(milk sugar), molasses, invert sugar, or sucrose(beet or cane sugar).These are all safe, but it could be made from malt syrup or starch hydrolysates which may contain wheat.
FLAVOURINGS, EXTRACTS & TINCTURES: Many of these contain grain alcohols. Read labels carefully.
TRITICALE: a grain found in some cereals and flour mixtures. This is a cross between wheat and rye and contains gluten.
SIRIMI: an imitation seaweed containing starch. Be sure to find out where the starch comes from.
CANDY: although companies are required to list all ingredients in their products, they are not required to list anything under 1%. This can lead to problems with celiacs as many candies found may be dusted with wheat flour to prevent sticking.
PRESCRIPTION DRUGS: many prescription and over the counter drugs contain gluten as a filler.Be sure your doctor is aware of this. The best way is to talk to your pharmacist for this very important information. He is a much better source for this info as many doctors still do not have a full understanding of Celiac disease.
SOYA SAUCE: Don't be fooled by its name. Most contain wheat. Choose BRAGG'S Liquid Soy Seasoning or LifeMax Tamari Soy Sauce (comes in 4 flavours).
ICING SUGAR: Many commercial brands contain wheat starch. REDPATH & LANTIC are gluten free.
PEANUT BUTTER: Many brands contain icing sugar. Unfortunately. The companies do not list what starch is used. Choose a brand without icing sugar or make your own at a Health Store that has their own Peanut Butter Machine. Dry Roasted Peanuts are used with no additives. Great tasting and better for your Health.
BAKING POWDER: Some brands contain wheat starch. Choose a brand made from cornstarch. There are Gluten Free Brands on the market. Rule of thumb with some is to use 50% more if the recipe calls for regular Baking Powder. ex.1 tsp. Reg.=11/2 tsp G/F
House Call
Feb/Mar 2010 Issue
Too Much Iron
Celiac disease is linked to a very rare genetic disease of iron overload, called hemochromatosis. (Symptoms include chronic fatigue and abdominal pain, among others.) People with celiac disease who also have hemochromatosis may not know it because the malabsorption of celiac protects them from accumulating too much iron—until they go gluten free. As they change their diet, their intestines heal and their iron levels can rise dangerously. Serum ferritin is the best test to screen for iron overload.
By Christine Doherty, ND
Iron Deficiancy and Celiac Disease
This mighty mineral fights fatigue
Iron deficiency is the most common nutritional deficiency in the world. The World Health Organization estimates that up to 700 million people suffer from lack of this important mineral. Could you be one of them?
If you have celiac disease, you are at risk. (A common manifestation of celiac disease is iron-deficiency anemia.) Vegetarians are also at risk. (People on a strict vegetarian diet have a difficult time maintaining healthy iron levels because vegetable sources of iron are more difficult to absorb than animal sources.) Heavy menstrual periods, pregnancy, any kind of internal bleeding (like ulcers) and certain kidney conditions can also set you up for iron deficiency. Lack of vitamin K can indirectly contribute because it can lead to poor blood clotting, which causes increased bleeding and iron loss.
With its profound impact on energy and even mood, iron has a major influence in determining your quality of life. If your body lacks iron, it has too-few red blood cells and the blood cells it does have are pale and small. Depletion symptoms range from pale skin, light nail beds, brittle nails and rapid heart rate to lack of stamina, depression, cognitive confusion and overall fatigue. In cases of severe deficiency, people develop intense cravings, called pica, driving adults to crunch on ice cubes, for example, and children to eat non-food items like chalk, dirt or paint chips.
A simple blood test checks for iron deficiency, usually diagnosed as anemia. However, if you’ve been iron depleted for a long time (often the case for people with undiagnosed celiac disease), you may be suffering from very low iron levels that won’t be detected by the usual blood test. In this scenario, doctors can assess iron levels with a more sensitive blood test, called serum ferritin. Celiac patients should specifically ask for this test if they continue to have low-iron symptoms after a blood test rules out anemia.
The foods richest in iron are meat, specifically beef, dark chicken and turkey, and lamb. Molasses is a good vegetable source (one tablespoon contains more iron than a 3-ounce steak), as are teff, amaranth, pumpkin seeds, raisins and prune juice. Absorption is enhanced by eating these items along with foods that contain vitamin C, like citrus juice.
Studies reveal that many celiacs are still iron deficient up to a decade after going gluten free. If you have celiac disease, ask your health care practitioner to monitor your ferritin level. Aim for a serum ferritin of at least 45. (Many labs use 10 as a bottom range but people often continue to have symptoms at this level.) If tests reveal your numbers are low, include more iron-rich foods in your diet. You may also want to talk with your doctor about taking an iron supplement.
Supplements are often required to reverse long-standing deficiency, especially in at-risk populations. Many iron supplements contain ferrous sulfate, which can cause stomach pain, nausea and constipation, particularly if taken on an empty stomach. Look for iron bys-glycinate, which is better tolerated. In severe cases of deficiency, iron can be administered at your doctor’s office via a series of injections or IV.
LW
Christine Doherty, ND, is a licensed naturopathic doctor who specializes in food allergies and celiac disease. She lives in the Boston area.
Note that iron excess increases the risk of heart disease and organ damage. Most people, particularly men and post-menopausal women, should not take iron supplements unless prescribed by their doctor. Consult your health care practitioner before taking supplements.
Is Barley (or Malt) Gluten Free?
By Marla Hingley on November 22, 2014 .
Gluten is a protein that is found in wheat (which includes; spelt, kamut, khorasan, einkorn, faro, and emmer), rye, triticale (a rye/wheat hybrid), and barley. Under no circumstance should people on a gluten free diet eat any of the above grains, including barley.
Foods Made From Barley
The following foods are made from barley, or have a high likelihood of containing barley, so be sure to read the ingredient label:
- Beer (although many gluten free options available now)
- Whisky (although safe to consume due to the distillation process)
- Mugicha (Asian beverage)
- Canned or pre-made soups and stews
- Fructan (a sweetener)
- Coffee substitutes/ coffee flavoured powdered instant beverage
Another product you need to be aware of that is made from barley, is malt.
Malt is made using barley grains. The dried grains are soaked until germination begins, at which point they are dried again. This process, known as ‘malting’, allows the enzymes within the barley to turn the starches into sugars (maltose). These sugars are further refined into malt syrup and malt extract, which can be added to a number of edible products and is used to enhance flavor.
Foods Containing Malt
Foods that always contain malt, and therefore are never safe to consume are:
- Malt vinegar
- Candy - Maltesers, Whoppers
- Flavored/chocolate beverage mixes - Horlicks, Ovaltine, Milo
Malt syrup added to bagel recipe
Foods that can contain malt, so be sure to check the label, are:
- Beer (many gluten free beers available now on the market)
- Licorice
- Imitation crab meat
- Chocolate milkshakes (some chocolate syrups can contain malt)
- Brown rice syrup (malt can be added to some brands)
- Dry cereal
Baked Foods (including some types of bagels, pretzels, crackers, cookies, chocolate based foods)
- Soy Milk
Ice Cream
- Pharmaceuticals (including some vitamins brands)
- Granola
A form of malt, maltodextrin, can be made from barley or wheat, as well as corn, potato, or rice.
So how do you know if maltodextrin is made from one of these safe ingredients, or from a gluten containing grain like barley or wheat?
With the new US Food Labeling laws, if maltodextrin is made from wheat it must state that on the product label. Maltodextrin made in the US and Canada is always made from potatoes or corn, however in other parts of the world it can still be made with barley or wheat.
Reading Labels – Words to Watch Out For:
*barley
*malt
*malt syrup,flavouring or vinegar
*wheat or barley maltose
*wheat or barley maltodextrin
Diagnosing Celiac In People With IgA Deficiency
By Dr. Anna Kaplan
There has been significant progress in the development of good blood tests for celiac disease. The same blood tests can be used to screen people at risk as well as help make the diagnosis. The tests are accurate enough that some experts believe small bowel biopsies may not be needed to diagnose CD in children.
The tests measure antibodies in the blood that are targeting specific substances called antigens. One antigen is tissue transglutaminase (tTG), which is present on intestinal cells, and is an “autoantigen” or normal part of the intestinal tract that stimulates antibodies in people with CD. Large amounts of immunoglobulin A (IgA) to tissue transglutaminase (IgA anti-tTG) almost always mean a person has celiac disease.
Antigliadin antibodies tests are not reliable enough to screen people or make the diagnosis of celiac disease
In the past, tests measured antibodies against gliadins, which are parts of gluten. However, antigliadin antibodies tests are not reliable enough to screen people or make the diagnosis of celiac disease.
Researchers learned that people with CD make antibodies against modified gliadins, called deamidated gliadin peptides (DGP). Other blood tests now measure IgA antibody to DGP (IgA anti-DGP).
These are both good tests. There are different commercial kits used to measure the antibodies, and there can be slightly different results from different labs. Some doctors use both tests, some only one, to screen for celiac disease. Not only can these tests help make the diagnosis, but they can also be used to follow progress. IgA anti-tTG levels come down when people with CD follow a gluten-free diet.
However, there is one group of people who cannot be screened for CD with these tests. This is the group of people who have low levels of IgA, called IgA deficiency. Because they do not make a lot of IgA, they do not make enough IgA anti-tTG or IgA anti-DGP to test.
How big of a problem is this? By some estimates, one in 600 people of European descent is IgA deficient. It is also estimated that approximately 1% of this population has celiac disease. These two conditions are related. People with IgA deficiency are more likely to have asymptomatic celiac disease than people without the deficiency. Compared to people who have normal levels of IgA, they are 10 to 20 times more likely to have celiac disease. Research has also shown that IgA deficient individuals and people with celiac disease have similar HLA types, the underlying gene groups that predispose people to develop CD.
These two conditions are closely enough related that many experts recommended checking total IgA levels when doing celiac blood testing. If the results show IgA deficiency and neither of the celiac tests are positive, further evaluation must be done.
There are a number of different kinds of immunoglobulins, or antibodies. IgA is made in the intestine. IgG is made by blood cells that have been activated against an allergen or infectious agent. People who are IgA deficient usually still make IgG.
The only tests being used right now to diagnose celiac disease in people with IgA deficiency are IgG levels to the same antigens. IgG to tTG and IgG to DGP are the two levels that are measured.
A recently published study presented data about these tests from research done in Sweden. The researchers were able to look at information from 488,156 people screened for CD. Of these, there were 1,414 IgA deficient individuals, and of these, 356 agreed to participate in further study. 47 blood donors who were IgA negative served as control subjects; they had no symptoms of celiac disease. Not every study participant had all data collected, including lab tests and surveys, so the information is partially incomplete.
18.8% of the IgA deficient subjects (67) with suspected celiac disease had IgG anti-tTG antibodies, and from 15.7% (56) to 21.3% (76) had IgG anti-DGP, with one brand of test kit finding a higher number. 54 had celiac disease confirmed on intestinal biopsy.
There were also some individuals from the blood donation group who had positive IgG tests, and four went on to have biopsy-proven celiac disease. There were 58 total patients in the study with definite CD. 63% (34) were IgG anti-tTG positive. 52% (28) were positive for IgG anti-DGP with one test kit and 65% (35) with the other test kit. There was no one test guaranteed to give a positive result in patients who actually did have celiac disease and IgA deficiency.
Blood tests for the diagnosis of celiac disease in people with IgA deficiency are not as accurate as those for people who have normal IgA.
One other type of blood test can be done, which is HLA typing, looking for the genes that make a person susceptible to CD. If someone does not have either types HLA-DQ2 or DQ8, they almost certainly do not have celiac disease. Someone with one of these genes, IgA deficiency and negative IgG tests with symptoms or signs of celiac disease may still need small bowel biopsies.
This study confirms that at the current time, blood tests for the diagnosis of celiac disease in people with IgA deficiency are not as accurate as those for people who have normal IgA. In addition, the researchers looked at the IgG levels when people with CD were on a gluten-free diet. They were just as high in some of the individuals on the gluten-free diet as those not on the diet. The researchers noted that this has been seen in other studies. While IgA antibody levels are useful in following people with celiac disease and correlate with their dietary adherence, the same cannot be said of IgG antibodies.
Physicians should order these IgG tests on patients with suspected CD who have IgA deficiency.
It is very likely that better blood tests will be developed in the future, but at this time, all the available information must be considered carefully in IgA deficient individuals with possible celiac disease.
Reference
Ning Wang, Lennart Truedsson, Kerstin Elvin, et al. Serological Assessment for Celiac Disease in IgA Deficient Adults. PLOS ONE. www.plosone.org 1 April 2014 | Volume 9 | Issue 4 | e93180
LIVING WITHOUT’S GLUTEN FREE & MORE
Fortify & Enrich That Gluten-Free Diet
Many conventional processed foods are fortified; gluten-free processed foods aren't. Does it matter?
By Kirstin Boncher
After I switched my family to a gluten-free diet, I noticed that the processed foods we had given up were fortified and enriched, while our gluten-free equivalents were not.
Despite their healthier diets, my children were not getting these micro-doses of extra vitamins and minerals throughout the day that kids on typical diets get.
Given my children’s problems with malabsorption, they were missing out on nutrients they very much needed. Fortified and enriched products help those eating processed foods get important vitamins and minerals. For people on gluten-free or dairy-free diets, the lack of fortification or enrichment in equivalent products can be an issue.
Why Fortify?
Fortification is the process of adding certain vitamins and minerals to processed food products. For example, cow’s milk, a widely consumed staple, is fortified with vitamin D, which aids in calcium absorption. Table salt, another household staple, is fortified with iodine, critical for thyroid function. Many mainstream dry breakfast cereals are fortified with a slew of extra vitamins and minerals.
Enrichment is the practice of adding nutrients back into processed food that are lost during processing. White wheat flour is an example of a staple food that’s enriched. Nutrients lost during the removal of the wheat bran, typically iron and B vitamins like folic acid, riboflavin, niacin and thiamin, are replenished in the flour. Gluten-free flours are not similarly enriched.
“We know that specific nutrients are vital to our health but there doesn’t seem to be a way to get enough of what we need in the typical modernized American diet,” says registered dietitian Geri Brewster, RD, MPH, CDN of Mount Kisco, New York. “That’s why fortification and enrichment become necessary.”
If your special diet has you giving up processed products that are fortified and enriched, make sure the foods you choose are nutrient dense. Eating a wide variety of wholesome, single-ingredient, unprocessed foods is the best way to ensure you’re getting adequate nutrients.
People who obtain the majority of their calories from gluten-free processed products should be vigilant about getting adequate nutrients from other sources and that includes vitamin and mineral supplements.
“Ideally, all our nutrients would come from whole food sources,” says Brewster. For those who must forgo fortified staples (like enriched wheat flour and vitamin-D fortified milk) due to food allergy or sensitivity, she recommends a whole foods diet along with appropriate supplements.
“If you’re eating processed foods, make sure they are as clean and nutrient dense as possible,” Brewster says. “The goal should be to get your nutrients from highly nutritious whole foods and then use targeted supplementation based on one’s bio-individuality to maximize health and minimize the risk of disease.”
Consult a knowledgeable dietitian or physician about supplements and proper dosages.
Freelance writer Kirstin Boncher blogs at ourGFfamily.com MyLifeWithFoodAllergies.com
I'm a celiac and I take a supplement to give me a fairly steady daily intake of needed vitamins and minerals. Most of the food I eat is basic, simple stuff-- fruits and vegetables, grains, roots and legumes, meat and dairy products-- but some of it, like the wine I drink probably a bit too much of, doesn't provide much in the way of nutrition. And I don't think xanthan gum and tapioca flour are high in nutrients, either. For a while, coming off a pre-diagnosis diet, and on recommendation of my doctor, I took an iron supplement as an aid to getting me out of the celiac-induced anemia that lingered after I went gluten free. I think a good approach is to eat nutrient rich foods, and supplement as necessary. To find out what is necessary, it's probably advisable to talk to your doctor about getting the necessary testing done on a periodic basis.
PRODUCTS AVAILABLE IN OUR BAKED GOODS SECTION: SPECIAL ORDERS ON REQUEST.
PIES:
-Pecan-G.F. & G.F./D.F.
-Pumpkin- as above
-Apple-only in the fall & By order
-Lemon Sponge & Lemon Meringue-by special order and they don't freeze[but I will make them for you fresh if you let me know the week before.]
CAKES:
-Flourless Chocolate Quinoa- G.F. & G.F /D.F.
-Chocolate Oatmeal -as above-special order(great cake if you want a large cake)
-Banana-as above; with white or chocolate icing
-Carrot- as above
- Raspberry
-Orange Delight
SQUARES:
-date
-pecan
-butter tart
-lemon
-lemon coconut
-hello dollies[chocolate, butterscotch]
-cherry squares
-grasshopper
-mint nanaimo
-brownies-with or without nuts
-raspberry squares
COOKIES:
-chocolate chip
-peanut butter chocolate chips
-peanut butter
-gingersnaps
-orange ginger
-oatmeal raisin
-oatmeal chocolate chip
-hermits
-skor
-oatmeal crisps
-chocolate chunk shortbread-at Christmas
-shortbread-at Christmas
We also make a MONSTER cookie which is no flour, but uses oats and nut butters.
QUICHES - broccoli, ham,tomato,shrimp,crab,mushroom....all with cheese
This is a list that may be expanded over the Christmas season to include CHRISTMAS CAKES, CARROT PUDDINGS,-----SPECIAL ORDERS ARE NEEDED FOR OUR PUDDINGS.
Drugs & Celiac disease
I have a lot of sinus problems and decided to see an allergist. Since I see the doctor all the time about the Celiac disease, I only go to other doctors when I finally admit I am not going to get better on my own. At the allergist, I discovered I am allergic to dust. Can you believe it? Dust!
I thought maybe it would force me to be a better housekeeper, but that certainly hasn’t happened yet. I explained my problem to the doctor, and he wrote me a prescription for allergy medicine. I thought the problem was solved at that point. I am always careful to take medicine exactly according to the directions. Prescription medicine is serious business. I felt better after a few days, but the strangest thing began to happen. I started getting sick again, but not with sinus problems. I started getting mouth ulcers and bloating and some diarrhea. These are very familiar symptoms for me, because they are the delayed symptoms of my gluten intolerance. I was completely mystified! I take very good care of myself and am so careful to eat only allowed foods. I just didn’t understand why I was having an “attack” as I call it.
Well, I decided to stop and think about anything I was doing that was different from my normal routine. The only thing I could come up with was the sinus medicine I was taking. I had not gone out to eat recently and I cook all my own food using my gluten free ingredients. It had to be the medicine!
You will discover that you have to become a detective sometimes if you have gluten intolerance. It seems sometimes as if gluten is in everything, but it appears under so many names. I had saved the prescription insert that gives the long list of ingredients. It took a while, but I found the culprit. The medicine I was taking had starch for a binding agent. I was taking 2 pills a day and getting a dose of gluten with each one. Granted, it was a small dose but over time it was creating a reaction. I should have known better I guess, but the doctor knew I had Celiac disease because I told him. It just goes to show that you have to take care of yourself and always be on alert. Even doctors make mistakes.
While I’m on the subject, you need to be leery of vitamins and a lot of other over-the-counter hygiene products. You are going to have to do your homework before you go to the drugstore. Otherwise, you might as well plan on spending the next 3 months reading the ingredient lists looking for gluten. I suggest you do what I did. Figure out which products are gluten free and then always stick with those items. I only buy one kind of toothpaste and one kind of vitamin and one kind of nasal spray for my allergies. It is so tempting sometimes to buy some of the other brands. New products seem to come out everyday with great new features. But it’s not worth the risk of getting sick. As long as I stick with the items I know are gluten free, I feel safe.
The lesson I learned is that I can’t ever let my guard down and must always question anything I put in my mouth. I really don’t like having a gluten reaction because it takes a while to completely recover. So be on alert! If you don’t know for a fact that something is gluten free then don’t take it.