• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Member Statistics

    72,192
    Total Members
    3,093
    Most Online
    Sharon Routsis
    Newest Member
    Sharon Routsis
    Joined
  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
  • 0

    TIPS FOR CELIACS - BY ANN WHELAN


    admin


    Ads by Google:




    ARTICLE CONTINUES BELOW ADS
    Ads by Google:



    The following article was published in The Sprue-nik Pres, Volume 9, Number 1 January 2000, Published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan. Members receive this newsletter, a shopping guide, and a new member packet full of articles and useful information. Mail-in subscriptions are welcome. For subscription information, send a note to tccssg@yahoo.com.

     

    Ann gave us TIPS: Five food tips, five health tips, five quickie tips, and five things to look forward to, always in a Lets Be Positive mode.

    Food Tips:

    • Concentrate on what you CAN eat, not what you cant. Try not to blow the gluten-free (gluten-free) diet out of proportion. If you take processed foods out of the equation, you can eat almost anything: fruits, vegetables, beans, meat, fish, rice, corn, etc. When you eat plain food, you start to really taste food the way you never tasted before. What we can eat is good for us.
    • Get used to the fact that you have to do more cooking and baking. Turn this factor into an asset and become a good gluten-free cook. Eat
      simply. For breakfast Ann eats eggs, yogurt, fruit, Jowar (sorghum) Jo Crisps Cereal, or even vegetables.

      For lunch you can eat leftovers. Leftover rice mixed with a vegetable is always a good idea; you can keep bags of frozen peas,
      corn, or broccoli in the freezer. One of Anns favorite lunches is to put plain peanut butter on a rice cake and slice apples on top.
      For snacks try fruit, Jell-O, or home-popped popcorn, all of which can be quickly prepared.

      In a restaurant, first check the menu to see what you can eat without question, what you might be able to eat if you ask questions, what youd better stay away from, and what you might want to look into a little bit. Try not to make an issue of it and dont be embarrassed or afraid to ask questions. Ann says she figures whatever the gathering is for, its not to discuss her diet

    • Forget about getting dietary advice from your doctor. A gastroenterologists primary job is to diagnose your illness and then send you on to a dietitian and a support group. Please dont get mad at doctors for not knowing all the details of the gluten-free diet. Dietitians, too, may not know a lot about the gluten-free diet. We celiacs need to partner with dietitians to get them up to speed and help those we educate teach other dietitians. There are many pieces of the celiac pie that need to be improved, and adopting and educating dietitians is an important step toward getting more reliable
      information to more people.

    • Join a support group. The best place to get information about the disease and the gluten-free diet is from a support group because the leaders and members deal with diet issues every day. Celiacs need to support their group leaders and volunteer assistance. Ann says she feels strongly about all of us giving something back to society for the richness that we have managed in our own personal lives. So if you are really interested in making celiac disease your thing, you can volunteer to work with a support group

    • Accept that there are very few absolutes and very many points of disagreement about what is and is not gluten-free or what is and is not appropriate for celiacs. We know with certainty that the things we should not eat are wheat, barley, rye, oats, spelt, triticale and kamut. The next thing we need to find out is where those grains actually are, not necessarily where they might be. We should have a basic diet we can rely on before we waste valuable time and effort looking for needles in haystacks. In her research Ann has discovered that a lot of the things we celiacs believe but have
      never checked out are not necessarily true in the real world. Misinformation takes hold in the celiac community and then we are left trying to disprove something that should never have been proposed in the first place. In other words, we are left trying to prove a negative.

      For example, research shows that canola oil is gluten-free, so it should be appropriate for any celiac except those with a special sensitivity to it. Since it is gluten-free, any sensitivities to canola oil cant be gluten problems. But it has been publicized that canola oil is not appropriate for any celiac, so everyone (especially food vendors) has been forced to decide what to do about this product, which actually happens to be a healthy oil. Canola oil did not belong on any list of products that all celiacs should avoid in the first place. Celiacs need to make their own judgments and realize that no one can tell them what they cannot eat without explaining and/or proving that it is dangerous. You have to do the best you can with the diet, but try to stay away from any gluten-fearing paranoia that exists. Try to know your sources and the reasons why you should be avoiding something.

    Health Tips:

    • Eat a varied diet, which will provide a wider variety of vitamins and minerals for better nutrition. Iron, calcium and folic acid are the three nutrients most frequently malabsorbed by celiacs, so be sure you eat the foods that contain them.
    • Whatever your age and whatever your sex, do get a bone density test. Many celiac experts say that most celiac patients have some degree of abnormal bone loss, often serious, at diagnosis. If your doctor is not up to speed on celiac disease, you may have to firmly request the simple, noninvasive bone density test. The treatments for osteoporosis include hormone therapy and some new drugs, primarily Fosamax.

      There are 10 million Americans today who have osteoporosis, and 18.5 million more who have some early signs of osteoporosis. The cost of treating these problems is enormous. Yet if a person has osteoporosis and also has hidden celiac disease, and is taking osteoporosis medications and eating calcium-rich foods, the treatment will probably not be optimum if the patient is malabsorbing the calcium she is eating and perhaps even the medications. Since the celiac connection to osteoporosis is the malabsorption of calcium, treating the cause of the malabsorption--the gluten-free diet --needs to come before consideration of Fosamax or other drugs.

      Celiacs need to eat dairy products because they are a prime source of calcium. Calcium, which has such a strong connection with osteoporosis, is one of the most malabsorbed nutrients in celiac disease. Some celiacs have difficulty eating dairy products because of associated lactose intolerance, but it is extremely important to get dairy products into your body in whatever way works. Of all the dairy products available, one of the best is yogurt; its low fat, easily digested (even for some who are lactose intolerant), and readily available.

    • Have an annual physical exam that includes a complete blood count (CBC) and stool testing, according to Dr. Joseph Murray of the Mayo Clinic. He thinks you should have thyroid testing every other year, but if you already have thyroid disease, more frequent testing might be advantageous. The experts also say you should have serology antibody testing once a year to test for compliance with the gluten-free diet. A positive result almost always means some gluten has been inadvertently ingested. Dr. Murray says you then have to: Check your diet, check your diet again, and check your diet a third time. He also recommends taking one good multi-vitamin a day that includes 100 percent of the recommended
      daily amount of B-complex vitamins, iron, folate and other vitamins and minerals.

      Whatever other supplements you take will depend on your own personal needs. You will need to investigate the possible gluten content in everything you ingest, including (and especially!) vitamins and medications. We have to be careful of everything that goes into our mouths, but especially of anything we take every day.

    • Encourage your first-degree relatives to get screened for celiac disease. Usually these relatives are not comfortable with your request because they dont want to follow your diet, but 10% of them will probably have celiac disease, and of the 10% who have it, 50% will have no symptoms but will have flat intestinal villi.

      How can we get our relatives tested? First of all, dont make an issue of your diet around them. Make them drool over the delicious gluten-free dishes you are eating. Keep the current complexities about the diet to yourself. And dont nag!

      If you can, send donations to the University of Maryland Prevalence Study, which is testing first-degree relatives (and others) to try to find out what the true prevalence of celiac disease is in the United States. If it turns out that celiac disease is not rare, then the FDA and food manufacturers will have to pay more attention to our problems. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St., Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc.

    • The very best thing you can do for yourself is to have a life beyond celiac disease. Dont let having this disorder stop you from doing anything! Make sure you have other interests. Make sure you exercise. Make sure you get out and eat with gluten-eating people. Make sure you travel. Make sure you stay all-around healthy.

    Five Quick Tips:

    • Buy your own toaster or toaster oven. This is an easy way to avoid cross contamination.
    • Try not to complain about the cost of gluten-free products. They are expensive for a reason. The manufacturers have to pay more to get supplies, pay more to process the food, and they have to pay more to market it because they dont have normal marketing avenues. We have to pay more because we have to order a lot by mail.

      It helps to remember that we usually dont have to take expensive medications as treatment for gluten sensitivity and, unlike medications, the foods we eat have no side effects.

    • Buy a bread machine. When you bake your own bread, it is ultimately cheaper than any ready-made bread. Plus it usually tastes better.

    • Not everyone can do this, but it helps to avoid processed food. Even when you investigate products over the phone or get a letter from the manufacturers or consult some of the commercial product listings that are available, you are still not totally sure the product is safe. Life is simpler and safer when you avoid processed foods--or eat them as infrequently as possible.

    • Remember that Europe is well ahead of the U.S. in dealing with celiac disease. We know physicians there have been diagnosing celiac disease for a longer time
      and celiacs have been on a gluten-free diet longer in Europe than here. Yes, several European countries do allow a small amount of wheat starch in international products, but their research has not shown an increased morbidity or mortality rate in their celiac population. Ann says she tends to think of this when she hears Americans going nuts about potential (versus actual) trace amounts of scientifically immeasurable gluten in certain ingredients.

      Unfortunately, we dont have our act together in the U.S. when it comes to celiac disease and the gluten-free diet. All U.S. celiacs have a lot in common and we all need to pull together, not apart, for our common good.

    Five Things to Look Forward To:

    • A good possibility that doctors will be able to diagnose celiac disease without the biopsy in the years to come.
    • The Celiac International Conference in August 2000 in Baltimore. Those who attend can plan a nice east coast vacation around the dates (August 10-13) if theyd like.
    • gluten-free food that gets better and more varied as the number of vendors grows. Hopefully our specialty foods will be more easily available locally. In the meantime, ask your supermarket managers to stock specific products in their stores. You might be surprised at how quickly they agree to do so.
    • More awareness of celiac disease, especially in terms of research, doctors understanding, availability of gluten-free food, and interest from the federal government and FDA. We need to make celiac disease a household word because it impacts so many peoples lives.
    • A united U.S. effort to support celiacs!!


    0


    User Feedback

    Recommended Comments

    Guest Mike Anderson

    Posted

    In theory oils should be gluten-free, but I have found in reality there is, in some cases, cross-contamination issues.

     

    For example, the company Spectrum makes many oils but only notes in a small section on their website that 'Spectrum's culinary and essential oils share common filler equipment with our Wheat Germ Oil. Although gluten is found in seed fiber and not in seed oil, Spectrum's Wheat Germ Oil is raw and unrefined, and thus carries with it the possibility of minute or trace amounts of gluten in the oil.'

     

    Only after I bought their oil and tried it did I find that the hard way.

    Share this comment


    Link to comment
    Share on other sites

    Hi ..this article doesn't provide any information about multivitamin syrup..I am having problem to get a multivitamin which is gluten free. It should be such that it is available in any part of world..means it should be intentional product

    Share this comment


    Link to comment
    Share on other sites
    Guest sharon krukewitt

    Posted

    My husband has been newly diagnosed with celiac disease and I am trying to learn as much as I can so i can take good care of him . Your info was very easy to understand and also very comforting. We are a little overwhelmed right now. Thanks, Sharon

    Share this comment


    Link to comment
    Share on other sites
    Guest Gisele Rappaport

    Posted

    Your article was clear and helpful. I was just diagnosed with celiac last week. It's comforting and will help me have a positive attitude.

    Thank you

    Share this comment


    Link to comment
    Share on other sites

    I just got diagnosed with celiac disease (this morning actually) and am really excited to notice the difference after changing my diet. I looked at my pantry to bring food to work and realized I have no gluten free food! Does anyone have tips or anything for easy foods to bring to work (we have a fridge luckily and a toaster and microwave) and also how do I shop on a budget?It's so expensive at whole foods and such. Anything helps!

    Share this comment


    Link to comment
    Share on other sites


    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoticons maximum are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • Popular Contributors

  • Ads by Google:

  • Who's Online   0 Members, 0 Anonymous, 404 Guests (See full list)

    There are no registered users currently online

  • Related Articles

    admin

    The following report comes to us from The Sprue-Nik Press, which is published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan (Volume 7, Number 6, September 1998).
    The degree of mucosal damage varies from one celiac patient to another. Also, the amount of the small intestine that is affected also varies, with the damage usually progressing from the beginning of the small intestine and then moving downward toward the end of the small intestine. This may explain the variable symptoms in different patients. For example, when a significant portion of the small intestine is involved, diarrhea, malabsorption, and weight loss result. When damage is isolated to only the top portion of the small intestine, the only affect may be iron deficiency. (Incidentally, when iron deficiency is not corrected by iron supplements, it is highly likely that celiac disease is the cause of the deficiency.)
    Gluten in a celiacs diet causes the immune system to produce gliadin antibodies in the intestine. Some of these leak into the bloodstream where they can be detected in blood tests. These blood tests are useful for screening for celiac disease, though a small intestinal biopsy remains the gold standard for diagnosing celiac disease (celiac disease).
    There are few diseases for which diet and nutritional issues are more important than for celiac disease. At this time, the only known treatment of celiac disease is the removal of wheat, barley, rye, and oats from the celiacs diet. On the surface this sounds simple, but complete removal of dietary gluten can be very difficult. Gluten-containing grains are ubiquitous in the Western diet. Also, grain-derived food additives such as partially hydrolyzed vegetable protein [and modified food starch] are widely used in processed foods and oral medications. Content labels are often vague or incomplete regarding these additives.
    What further complicates matters is a lack of significant experience on the part of physicians and dietitians in the dietary treatment of celiac disease. This is mainly because there are so few celiac patients for anyone practitioner. Therefore the best sources of dietary information for a new patient are other knowledgeable, more experienced celiacs.
    It is very important that the diet be followed with full and strict compliance. Celiacs, especially if theyve had active celiac disease for a longtime, are at higher than normal risk for GI malignancies.(Fortunately, compliance to a good gluten-free diet returns the risk of malignancy and life expectancy to that of the general population.)Another complication of long-term untreated celiac disease is bone loss, which maybe irreversible in older patients.
    When a large portion of the small intestine is affected by active celiac disease, the result can be a generalized malabsorption problem, resulting in deficiencies of water- and fat-soluble vitamins and minerals. Folic acid deficiency is particularly common in celiac disease because, like iron, it is absorbed in the upper small intestine [where the highest concentration of celiac-related damage generally occurs]. Folic acid is necessary for DNA replication, which occurs in cell turnover. So a deficiency of folic acid can impair the regenerative ability of the small intestine. Vitamin B12, also essential to DNA synthesis, is not malabsorbed as commonly as folic acid.
    Magnesium and calcium deficiency are also common in active celiac disease, because of decreased intestinal absorption AND because these minerals tend to bind with malabsorbed fat which passes through the system. It is particularly important for doctors to assess the magnesium status of celiacs, because without correction of a magnesium deficiency, low levels of calcium and potassium in the blood cannot usually be corrected with supplements. In severe cases, magnesium supplementation should be done intravenously because of the tendency of oral magnesium to cause diarrhea.
    Supplemental calcium generally should be provided to celiacs, possibly with vitamin D, to help restore tissue and bone calcium levels to normal. The exact dose of calcium is not known. Dr. Fine usually recommends 1500-2000 mg of elemental calcium per day, divided into two doses, for several years and sometimes indefinitely. [4], [5], [6]
    Zinc is another mineral that often becomes depleted in patients with chronic malabsorption. Zinc supplementation (usually the RDA via multi-vitamin and mineral supplements) helps avoid skin rashes and restores normal taste.
    Up to 20% of celiacs will continue to experience loose or watery stools even after going on a gluten-free diet. Sometimes this is due to inadvertent gluten in the diet, but a recent study at Dr. Fines medical center showed that in these cases other diseases epidemiologically associated with celiac disease are present.[7] These include microscopic colitis, exocrine pancreatic insufficiency, lactose intolerance, selective IgA deficiency, hypo- or hyperthyroidism, and Type I diabetes mellitus. When diarrhea continues after beginning a gluten-free diet, a search for these associated diseases or others should be undertaken and treated if found.
    The use of cortico steroids has been advocated in celiacs when the response to the gluten-free diet is sluggish or absent. This is necessary more often in older than in younger patients. However, pancreatic enzyme supplements (prescribed by a doctor) may be needed to help digestion and resolve ongoing malabsorption in some patients.
    The endomysial antibody blood test is highly accurate and specific for detecting celiac disease. However, the current method of detecting these antibodies involves an operator looking through a microscope and observing the antibody binding on monkey esophagus or human umbilical cord tissue substrates. The correct interpretation of results is highly dependent on the skill and experience of the technician interpreting the fluorescence pattern through the microscope. Moreover, determination of the amount of antibody present relies upon repeat examinations following dilutions of the blood serum, with the last positive test being reported as a titer.
    A new discovery was reported by a research group in Germany.[8] The antigen substrate of the endomysial antibodies has been identified. This allows the development of a new test that can detect and measure serum endomysial antibodies in one, chemically-based test run [thus greatly reducing the potential for human error and significantly reducing the time needed for each test--ed.] These new tests should be available for clinical use shortly.
    In a recent study, Dr. Fine found that the frequency of positive stool blood tests was greater in patients with total villous atrophy relative to partial villous atrophy, and all tests were negative in treated patients without villous atrophy.[9] This suggests that fecal occult blood may be a non-invasive and inexpensive method of following the response of the damaged intestine to treatment. Also, it should be noted that the high frequency of positive tests due to villous atrophy will decrease the accuracy of the tests when used for cancer screening in this same patient population (which is how these tests are normally used by health care providers).
    There have been two recent reports touting the lack of deleterious effects when 50 grams of oats per day are added to the diet of celiac patients. Although this finding is exciting for celiacs, both studies possess certain limitations. In the first study, published by a Finnish group, the exclusion criteria for symptoms and histopathology were somewhat strict, so that patients with more mild forms of celiac disease seemingly were selected for study. And though no damage to duodenal histology occurred after one year of oats consumption, no physiologic or immunologic parameters of disease activity were measured. Furthermore, several patients in the treatment group dropped out of the study for reasons not mentioned in the article.[10] The second and more recent study involved only 10 patients, studied for twelve weeks. The favorable results of this study must be interpreted with caution because of the small sample size and short study period.[11] Even the one-year treatment period in the Finnish study may be too short to observe a harmful effect, as it is known that small intestinal damage sometimes will not occur for several years following there introduction of gluten to a treated celiac. At the worst, an increase in the incidence of malignancy may result from chronic ingestion of oats, an effect that could take decades to manifest. Therefore, this issue will require further study before oats can be recommended for the celiac diet.

    3. From the September 1998 newsletter of the Houston Celiac-Sprue Support Group, a chapter of CSA/USA, Inc. 4. Ciacci C, Maurelli L, et el, Effects of dietary treatment on bone mineral density in adults with celiac disease; factors predicting response, Am J Gastroenterol, 1997; 92 (6): 992-996.

    5. Mautalen C, Gonzalez D, et al, Effect of treatment on bone mass, mineral metabolism, and body composition in untreated celiac patients, Am J Gastroenterol, 1997; 2 (2):313-318.

    6. Corazza gluten-free, Di Sario A, et al, Influence of pattern of clinical presentation and of gluten-free diet on bone mass and metabolism in adult coeliac disease, Bone, 1996; 18 (6):525-530.

    7. Fine, KD, Meyer RL, Lee EL, The prevalence and causes of chronic diarrhea in patients with celiac sprue treated with a gluten-free diet, Gastroenterol, 1997; 112 (6):1830-1838.

    8. Dieterich W, Ehnis T, et al, Identification of tissue transglutaminase as the autoantigen of celiac disease, Nat Med, 1997; 3 (7):797-801.

    9. Fine KD, The prevalence of occult gastrointestinal bleeding in celiac sprue, N Engl J Med, 1996; 334 (18):1163-1167.

    10. Janatuinen EK, Pikkarainen PH, et al, A comparison of diets with and without oats in adults with celiac disease, N Engl J Med, 1995; 333 (16):1033-1037.

    11. Srinivasan U, Leonard N, et al, Absence of oats toxicity in adult coeliac disease, BMJ, 1996; 313 (7068):1300-1301.

    Jefferson Adams
    Celiac.com 10/28/2009 - Celiac disease is a T cell-mediated autoimmune disease, and a number of clinicians have described up-regulation of T-bet and phosphorylated signal transducers and activators of transcription (pSTAT)1, both of which are key transcription factors for the development of T helper type 1 (Th1) cells, in the mucosa of patients with untreated celiac disease.
    A team of researchers recently used transcription factor analysis to examine whether celiac patients up-regulate T-bet and pSTAT1 expressions in peripheral blood
    and whether such up-regulation may be associated with celiac disease activity.
    The research team was made up of G. Frisullo, V. Nociti, R. Iorio, A. K. Patanella, D. Plantone, A. Bianco, A. Marti, G. Cammarota, P. A.  Tonali, and A. P. Batocchi of the Department of Neurosciences at the Catholic University in Rome, Italy.
    The team used flow cytometry to analyze T-bet, pSTAT1 and pSTAT3 expression in CD4(+), CD8(+) T cells, CD19(+) B cells and monocytes from peripheral blood of 15 untreated and 15 treated celiac disease patients and 30 controls, and longitudinally in five celiac patients before and after dietary treatment.
    The team measured the results using enzyme-linked immunosorbent assay (ELISA), interferon (FN)-gamma, interleukin (IL)-17 and IL-10 production by peripheral blood mononuclear cell (PBMC) cultures.
    Patients with untreated celiac disease showed higher T-bet expression in CD4(+), CD8(+) T cells, CD19(+) B cells and monocytes and IFN-gamma production by PBMC, than either treated celiac patients or control subjects.
    CD4(+)T cells, B cells and monocytes from untreated celiac patients showed higher pSTAT1 expression than either treated celiac patients or controls. Only in monocytes from untreated patients showed increased pSTAT3 compared with treated celiac patients and controls. Data from longitudinal evaluation of transcription factors corroborated these findings.
    Flow cytometric analysis of pSTAT1 and T-bet protein expression in peripheral blood mononuclear cells could be useful and sensible markers in the follow-up of celiac disease patients to evaluate disease activity and response to dietary treatment.
    Being able to spot celiac disease early is key to achieving optimal outcomes for celiac patients. The development of simple, reliable, low-cost tests is key to that effort. Stay tuned for more developments regarding celiac disease testing, screening and diagnosis.
    Source:
    Clinical & Experimental Immunology, Volume 158 Issue 1, Pages 106 - 114


    Dr. Vikki Petersen D.C, C.C.N
    Celiac.com 11/26/2012 - This article originally appeared in the Autumn 2011 edition of Celiac.com's Journal of Gluten-Sensitivity.
    I speak to many people from across the country, and internationally, who contact me requesting help. The issues they face are summarized into three categories:
    individuals with celiac disease who do not have their disease under good control; those with gluten sensitivity who remain less than healthy despite their gluten-free diet; individuals, and this is a big one, who are convinced that they have a gluten problem, due to self experimentation, but who are unable to get any corroboration or support from their doctors. Having been immersed in this field for almost twenty years, it is frustrating not having a laboratory test that will reliably state whether someone has celiac disease or if gluten sensitivity has been ever present.
    The good news is that this situation has improved. It’s not perfect, but it’s better than it has been, and I wanted to share this data with you and those you care about.
    These newly available tests can have a big impact on those who need a diagnosis, as well as those who are already gluten-free but want to know why they are not enjoying the good health they desire.
    I have no affiliation with either of the labs I mention so there is no conflict of interest in my recommendations.
    The first lab, Cyrex Laboratories, is the newest lab specializing in gluten intolerance in the US. It currently offers four different profiles. There is a fifth one coming, hopefully very soon, that is also very exciting and a description of it follows.
    I will provide the data that the lab lists in their brochure for each test along with my personal opinion as to its benefit and use. Here at HealthNOW Medical Center we have been utilizing these tests for almost five months—the lab just opened in January after three years of research and passing governmental licensing requirements.
    Array 1: Gluten Sensitivity
    “This is a saliva test which is recommended for patients who:
    Are suspected of having mucosal abnormality Have relatives with celiac disease Have type 1 diabetes Have autoimmune thyroid disorder Have relatives with autoimmune disorders, especially, multiple sclerosis, diabetes and arthritis.” This is an easy screening test for those who wonder if they have gluten sensitivity or celiac disease based on their own symptoms or symptoms in their family.  As a saliva test it’s very easy to perform (no blood draw is needed) and it’s the least expensive of all the tests offered.
    When utilizing saliva, a test is only as accurate as the strength of the salivary immune system. Due to this limitation, the lab also measures this as part of the panel. In the past, labs would not include this measurement, sometimes resulting in false negative results—something we all wish to avoid.
    Array 2: Intestinal Barrier Integrity Screen
    “Intestinal barrier integrity plays a vital role in the overall health and well-being of patients.  This blood test is recommended for patients who:
    Have gut dysbiosis, which appears to be resistant to standard therapy Are suspected of having intestinal mucosal damage Complain of food allergy and intolerance Present multiple symptom complaints (including chronic fatigue syndrome) Suffer from abnormal immune cell count and function (including autoimmune diseases) May suffer from depression or neuroautoimmunity [including such conditions as: thyroid disease, arthritis, myocarditis, dermatitis, endocrinopathy, osteoarthritis and pernicious anemia] ” Healing a leaky gut is a very big part of regaining one’s health after a diagnosis of gluten intolerance. Gluten has caused damage to the lining of the small intestine and the presence of this damage is thought to be an initiator of the many “non-digestive” symptoms and diseases that are associated with gluten, including autoimmune disease.
    Prior to this test two substances have been traditionally used to measure a leaky gut: lactulose and mannitol. The disappointment of the test lay within the sensitivity, or I should say lack of sensitivity, to adequately diagnose subtle leakiness vs. gross leakiness such as that found in advanced celiac disease and complete villous atrophy.
    Much as an intestinal biopsy can miss the early and more subtle damage to the villi of the small intestine [its lining], so too does the lactulose/mannitol test seem to miss the more subtle changes in a leaky gut.
    This test will detect increased permeability through the cells that line the small intestine, as well as increased permeability between the cells.
    Clinically we use this test as a gauge of how we are progressing clinically rather than as a first tier diagnostic tool. There is no sense in measuring a leaky gut when it’s obviously there. But to prove that a clinical program is producing results or to perhaps show a less than compliant patient that their indiscretions are creating problem, this is an excellent test.
    Array 3: Comprehensive Gluten Sensitivity & Autoimmunity
    “To broaden the view of celiac disease and gluten sensitivity, our doctors can better diagnose the disorder by assessing antibody production against an array of protein, enzyme and peptide antigens.  This blood test is recommended for patients who:
    Have gut dysbiosis—poor probiotic balance Are suspected of having intestinal mucosal damage—this means damage to the lining of the small intestine Complain of food allergies Complain of chemical hypersensitivity Present multiple symptom complaints (including chronic fatigue syndrome and  Fibromyalgia) Suffer from abnormal immune cell count and function May suffer from depression or neuroautoimmunity [see below] Neuroautoimmune patients to consider: thyroid, arthritis, myocarditis, dermatitis, endocrinopathy,  polyendocrinopathy, osteoarthritis and pernicious anemia” This panel is the broadly inclusive blood test designed to measure both celiac disease and gluten sensitivity. Because this test measures several aspects of the protein structure (rather than just the single protein fragment heretofore analyzed), we believe it will take many of the false negatives out of the picture—certainly a welcome change.
    Despite feeling better when removing gluten from their diets, patients like to confirm their own experience with a third party lab test. In the past, lab tests were so riddled with false negatives that we had to encourage patients not to discount their personal experience with a gluten-free diet, despite the absence of correlation with the lab test.
    This approach was not always successful and at times patients returned to gluten simply because they had no lab test to verify the truth. Inevitably they would return to us many months later, feeling worse than ever and ready to, once again, look at a gluten-free diet.
    This panel is more sensitive and specific than any we have had in the past, thereby reducing false negatives greatly. A patient does have to be consuming gluten for this profile to be accurate.
    Array 4: Gluten-Associated Cross-Reactive Foods
    Complete normalization of gut lesions is very rare in adult patients with celiac disease (8%), despite compliance with the gluten-free diet.  This may be due to cross-reactions with an array of foods.  This blood test is recommended for patients who:
    Have gluten sensitivity or celiac disease. Are non-responsive on a gluten-free diet—in other words don’t feel better. Have gut dysbiosis [not enough healthy bacteria and too many unhealthy ones], which appears to be resistant to standard therapy. Have an autoimmune disorder. This panel is very exciting and we are already seeing a dramatic impact on our patients. When one has eliminated gluten (and often dairy) from one’s diet, it obviously takes a big commitment. The last thing such a person might want to hear is that there are other foods they may also need to eliminate.
    Consider this: What if a temporary dietary change of eliminating foods that are confirmed as problematic on a laboratory test resulted in the difference between continued ill health and good health? Now, perhaps, it sounds like a good idea.
    That is exactly what we found in patients who were being extremely vigilant about their diet but still felt “glutenated” or just ill and the cause was not being found.
    Cross-reactive foods are foods with a protein structure similar to gluten’s that, upon ingestion, confuse one’s immune system into thinking that it has ingested gluten. The proteins are confused, one for another, and the reaction is as negative as if one has consumed gluten. This panel looks at twenty five possible foods (mostly in the grain and dairy families) to which one could be experiencing a cross-reactivity reaction.
    While it definitely takes a further commitment to confront more dietary change, our current patients consider it well worth it based on their health improvement.
    Finally, Array 5 that is not yet released, will focus on possible autoimmune reactions occurring from gluten. Autoimmune diseases can be “in the works” so to speak for well over a decade before the body experiences its first symptom. As the third leading cause of death in this country and with no known cure, any forewarning of autoimmune activity would be an excellent tool.
    This test provides another much needed tool for those patients who, although know they are gluten intolerant, cheat on their diet with seeming impunity—meaning they don’t feel any ill effects from having done so.
    Array 5 will be able to reveal what is occurring on a deeper level of the body such that the patient can see where gluten may be beginning to create autoimmune tendencies in certain organs or systems that he or she cannot feel.
    The second laboratory I want to mention is Enterolab. Although Enterolab is not new, they are unique. A few things make them different from all other labs I know about:
    You don’t have to work with a doctor to receive a lab test. Enterolab works directly with the patient on-line. They will send you a test kit after you have paid them and test results are emailed to the customer. Enterolab uses stool testing for their celiac and gluten sensitivity panels. They have a unique technology that allows them to test for these conditions even if the patient has not been eating gluten. They offer genetic testing as well as testing for other food intolerances. Once again, no doctor referral is required. I believe these tests offer benefit not only for those who need a diagnosis but also for those with a diagnosis who are not yet enjoying ideal health.
    I hope you found this informative. Please do feel free to contact me regarding any further questions that you may have. Our clinic, HealthNOW is a destination clinic and we treat patients from across the country as well as internationally. We are here to help.
    To your good health!

    Jefferson Adams
    Celiac.com 01/11/2012 - In an effort to understand how delayed celiac disease diagnosis became the norm for most patients over the last few decades, a research team conducted a study to assess the issue. Their study also looked at how delayed diagnosis affects health-related quality of life (HRQoL) for those with celiac disease, and considered differences with respect to sex and age.
    For the study, the team collaborated with the Swedish Society for Coeliacs to send a questionnaire to 1,560 randomly-chosen members, divided equally by age and sex. A total of 1,031 members (66%) responded. The team first measured HRQoL using the EQ-5D descriptive system, then translated the results to quality-adjusted life year (QALY) scores.
    The team then compared the results against the results from a survey of the general population. There was some good news and some bad news.
    The good news is that, while the average QALY score during the year before treatment was 0.66, it improved after diagnosis and treatment to 0.86, which is  better than that the score of 0.79 for the general population.
    The bad news is that they found the average person with celiac disease faced a delay in diagnosis of 9.7 years from the first symptoms, and 5.8 years from the first doctor visit.
    The team concede that the delay has been reduced over time for some age groups, but contend that it still remains unacceptably long for large numbers of people.
    Untreated celiac disease results in poor HRQoL, which improves or exceeds that of  the general population if diagnosed and treated. Reducing the delay in diagnosing celiac disease will go a long way toward reducing the burden of celiac disease.
    To do so, they say it is necessary to raise awareness of celiac disease as a common health problem, and to intensify diagnosis practices. This may, the note, make mass-screening for celiac disease an desirable option in the future.
    Authors: Fredrik Norstrom, Lars Lindholm, Olof Sandstrom, Katrina Nordyke, Anneli Ivarsson
    Source:

    BMC Gastroenterology 2011, 11:118. doi:10.1186/1471-230X-11-118

  • Recent Articles

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764