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  • Scott Adams
    Scott Adams

    Celiac Sprue Association Revises its Dietary Guidelines

    Celiac.com 08/10/2001 - The Celiac Sprue Association, under the new leadership of Mary Schluckebier, has recently taken an important step towards eliminating the lingering confusion surrounding its position on gluten-free foods. According to Janet Rinehart, the CSAs "Basics for a Celiac Diet" guidelines have recently been revised to include the following key changes:

    • Canola oil is not mentioned (except where you might assume the connection for "general recommendations for those with a depressed immune system)."
    • Rather than stating that quinoa, amaranth and teff are not safe for the celiac diet, the document now says: "Some celiacs have demonstrated toxicity or sensitivities to the following cereals: quinoa, amaranth and teff."

    Distilled vinegar, however, is still on the CSAs "Low Gluten Items to Avoid List." The CSA still maintains that distilled vinegar and alcohol are "questionable," even if there is no detectable gluten/gliadin in them, and even though the Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF) and the new guidelines from the American Dietetic Association (ADA) all include them on their safe lists . The CSA urges celiacs to ascertain the source of any questionable ingredients from their manufacturers.

    The CSAs new version of their "Celiac Disease Self-Management Chart for the Clinical Diet" advocates:
    • A "self-management" approach to the diet, where the first stage is to eliminate anything questionable -conservative approach. Zero gluten is the goal.
    • The second stage is to develop good methods for questioning products and controversial items/information. Then introduce new items, one at a time, at least two weeks apart.
    • The third stage is to maintain a stable diet, using as many tools as possible. There is also a sample Food Diary Chart to use when beginning the zero gluten diet to track your meal planning (be sure to include brand names for reference).

    According to Janet Rinehart the CSAs new guidelines "are not incompatible with the new ADA recommendations in the later stages." Further: "We can use the CSA diet to start with, and then use the ADA recommendations and those published by GIG/CDF, depending on individual food sensitivities." She urges celiacs and support groups to quite blaming the CSA and instead work together to contribute positively to the success of all celiacs in all groups.



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    You just saved me again. I purchased a product to provide a basic quick supplement meal to my diet as I learn how to live as a celiac only to have an obvious reaction. I was very confused as to why until I read this article. Thank you

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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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    Scott Adams
    Dr. Kelly, who is a refractory sprue specialist, had interesting insights into Celiac Disease. He first described once having a patient say to him that eating at a restaurant or food take out is the gastronomic equivalent of promiscuous and unprotected sex because (you) dont know where food has been, who else its been with, and what you might get from it. Dr. Kelly explained that his job when seeing a patient with possible Refractory Sprue is to first confirm that the patient really has Celiac Disease and is adhering to a gluten-free (gluten-free) diet. He explained that some patients would rather prefer an iron shot than adhere to a gluten-free diet and that sensitivities vary which removes another drive to say gluten-free; however, if symptomatic, he has found that the patient has the motivation to adhere. Hes even had to recruit and train dieticians to take an interest in Celiac Disease. He said that Celiac Disease or Gluten Sensitive Enteropathy is driven by activated lamina propria T-cells to whom gliadin is being presented through their T-cell receptors. In Refractory Sprue, he said that the cells are evident at intraepithelial lymphocytes rather than lamina propria lymphocytes and they no longer require gluten in order to be driven. So, theyre on auto-pilot. He emphasized that this is a rare disease and advised that doctors get a competent dietician to help patient adhere to diet.
    If the concern is that the patient is adhering but is not responding, Dr. Kelly advised doctors to think of other disorders masquerading as Celiac Disease, especially if patient is IgA, EmA (anti-endomysial) negative or if not HLA DQ2 or DQ8 (common Celiac genes) positive. He added that not every flat mucosa consistent with Celiac Sprue is Gluten Sensitive Enteropathy but that there can be a differential diagnosis such as cow protein intolerance. He said that there are unusual immunologic disorders that can be mistaken for sprue or refractory sprue. He said that doctors should consider these if the patient was not IgA endomysial or human tTg (transglutaminase) antibody positive at diagnosis. He explained that the positive predictive value of those tests are so strong that really its in some ways has a higher positive predictive value than even biopsy that you dont get very, very if any false positives at least by the immunofluorescence assay. So, if theyre negative at diagnosis considering other possibilities and this is one instance where HLA typing actually may be clinically useful if you have a patient you think has Celiac Sprue but isnt behaving or responding as you would expect with a gluten free diet and you ask do they really have Sprue. If they are HLA DQ2/DQ8 negative, then the likelihood of them having gluten sensitive disease is much, much lower. He said that serology (blood tests) were helpful but not be relied upon. He said that IG antibody levels against gliadin, or tissue transglutaminase tend to drop fairly quickly usually within 2 to 3 months provided they (patient) were positive to begin with. ...The IgG takes much longer so it tends to be less useful and of course, if they are IgA deficient, they wont be IgA positive to begin with and you cant use then. Even if their antibody levels are high to begin with, and remain high, that to me means that theyre still exposed to the antigen and they still have T-cells. Their lamina propia T-cells are still being driven by the antigen. But if theyre negative, Im afraid that its not particularly sensitive and low levels of gluten exposure may result in symptoms and poor response would not necessarily be identifiable by antibody.... Dr. Kelly said that patients with subtle manifestations of Celiac Sprue who have been previously diagnosed with irritable bowel or host of other disorders are now being more frequently seen. He said that there has been a lot of discussion in the past year about Celiac Sprue being misdiagnosed as Irritable Bowel Syndrome.
    Dr. Kelly also described the circumstance that patients with Celiac Sprue show improvement both serologically (blood) and histologically (biopsy) but their symptoms persist. He said that doctors need to be aware that just because a patient has gluten sensitive enteropathy doesnt mean they cant get another gastrointestinal disorder. He gave examples such as microscopic colitis and what he called a classical association, hyperthyroidism, or something else which could also cause diarrhea and weight loss.
    Dr. MacDonald, a celiac specialist, discussed new insights into the pathogenesis of Celiac Disease. Dr. MacDonald discussed primarily the role that other factors besides the DQ2 (gene) molecule, control the T-cells in the gut mucosa which produce the lesion or flat mucosa. In the genesis of the lesion, he explained how the T-cell immune response in the gut wall results in a gut shape of tall villi and short crypts which results in an increase in mucosa volume with flat mucosa and an increase in mucosa thickness. My husband, a PhD immunologist, interpreted this for me; He said that imagine the villi are the hill and the crypts are the valley. The valley is where things grow. The oldest cells are at the tip of the hill and as cells mature, they get transported up the hill. As damage occurs, the hill gets chopped down, valleys get deeper making more area for cells to replicate. Dr. MacDonald assumed that because the epithelium is turning over so fast in Celiac Disease that the lamina propria, the shape of the gut itself would be turning over, but actually the data says otherwise. The flat mucosa isnt turning over at all, ... a rather stable shape, its not really dynamic, its remodeled. He said that putting Celiacs on a gluten free diet may take them a long time to get better, because it takes a long time for this to go back because this is actually stable, its remodeled....
    Dr. MacDonald explained that gliadin peptides associate with DQ2 and DQ8 molecules putting themselves into the grooves to be seen by T cells. However, he gave an instance where a particular gliadin peptide doesnt fit well into the pockets of DQ2 to be seen by T cells. Tissue Transglutaminase or Ttg deamidates (removes chemical groups on certain amino acids and allows peptide to bind to DQ2) this peptide in terms of glutamine into glutamic acid, gives a negative charge, fits very well into pocket, and binding increases 100 fold. Tightness of the binding ... controls the specificity and strength of the T-cell response.
    Dr. MacDonald also described the case of a woman with cancer who was treated with interferon. He said that she had the endomysial antibodies, was DQ2 positive, and had Celiac Disease; however, he cited that the reason why the Celiac Disease was not found earlier was that interferon alpha/gamma used to treat the cancer may have precipitated clinical Celiac Disease. He added that her son was later diagnosed with Celiac Disease as well. It was also eluded to that a viral infection like a gastrointestinal flu would stimulate or produce interferon alpha.
    Dr. Alessio Fasano from the Center for Celiac Research at the Univ. of Maryland also explained that its not just the gluten antigen and genes (i.e., HLA DQ2 or DQ8) but an added element like that alluded to by Dr. MacDonald such as a viral infection which can result in Celiac Disease. Dr. Fasano described a study performed on North African children who were thought to have symptoms resembling infectious disease with symptoms like anemia and diarrhea were found to have Celiac Disease at the rate of 1 in 18. He said because they have a high consumption of grains and seem to carry a high frequency of the genetic elements, he felt that non-profit organizations may intervene to help institute a gluten-free diet in this Celiac population. Dr. Fasano mentioned a study performed in Southern California which found Celiac Disease in 2 to 4% of people with symptoms or associated diseases and 5% in family members of Celiacs. Dr. Fasano stated that the overall prevalence is 1 in 266 which he said on a global scale, by far this is the most frequently genetic disease of human kind. Fasano said that in the 1970s, it was thought Celiac Disease was confined to the pediatric population but that since 1998 there has been a surge in adult versus child cases. He believes that the disease may have been overlooked in adults because adults have more atypical symptoms like anemia, osteoporosis, abortion that would NOT see a Gastroenterologist but would see an internist, reproductive OBGyn, endocrinologist, etc.
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    Wendy Cohan, RN
    Celiac.com 02/09/2011 - A new group focused on supporting children with celiac disease and non-celiac gluten intolerance will hold its first meeting this month, on February 19th, in Portland, Oregon. G.I.F.T.S. - Gluten Intolerant Families Teamwork & Support (www.gifts-pdx.org) will meet every other month, on the third Saturday, from 2:00 to 4:00 p.m. in the home of group moderator Wendy Cohan, RN.
    Meeting in a home environment will reduce costs for membership, but also offer the opportunity to hold cooking demonstrations, cupcake decorating contests, and a summer cook-out, all of which are planned for 2011. Each meeting will feature a speaker, with subjects alternating between short health discussions and more kid-friendly holiday themes and cooking and baking with children. Our first speaker will be Krista Anderson-Ross, ND, who will give a short talk on the important topic of "Nutritional Deficits in Children with Celiac Disease", and how best to address them.
    We'll follow that up in April with an Easter-themed party with our guest, small business owner of "Fairy Cakes". Our group website: www.gifts-pdx.org is full of information on celiac and gluten related topics, and it includes a bulletin board for sharing tips, recipes, ideas for school lunches and snacks and other parent peer-support ideas. Bring your child, bring your whole family, and help make this group whatever you want it to be.
    We have a small advisory committee of health professionals and parents of children with celiac disease, but you are welcome to bring your ideas to the table, literally. We plan to hold social gatherings and restaurant outings in addition to regular meetings. For more information, see the website, or email us: info@gifts-pdx.org.

    Jefferson Adams
    Celiac.com 01/22/2014 - With many major grocery brands struggling to generate sales growth, and with top gluten-free brands Udi's and Glutino racking up combined net sales growth of 53% last quarter, the writing is on the wall: More and more wheat based brands will be looking to break into the gluten-free market in the next three to five years.
    Boulder Brands CEO Steve Hughes told analysts on the firm's Q3 earnings call that Boulder is seeing "strong, consistent velocity in distribution builds across all channels" for gluten-free products.
    According to Hughes, 5-10% of all wheat-based product categories will be gluten-free in the next three to five years, or else they will disappear from the market.
    Again, as many wheat-based brands struggle for market share, Udi’s remains the fastest-growing brand in the conventional grocery store channel, and retailers are responding.
    Hughes said that Udi's 3rd quarter net sales were up 74% year-over-year, adding that "Glutino net sales grew 29%. Combined, our gluten-free brands increased net sales 53%." Udi's and Glutino now average nearly twenty items on retail shelves, up from about fifteen and a half just a year ago.
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    Hughes wrapped up his presentation by adding that gluten-free items are also gaining a share of the club store channel. He said that they were "...starting to get some testing of bread into the club channel, which could be very meaningful next year.”
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    Jefferson Adams
    Celiac.com 03/28/2014 - Did John F. Kennedy suffer from symptoms of undiagnosed celiac disease? Celiac disease expert Dr. Peter H. R. Green says Kennedy's known symptoms and family history make it likely that America's 35th president did in fact have celiac disease, which remained undetected in his lifetime.
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    He writes that: “John F. Kennedy’s long-standing medical problems started in childhood. In Kennedy’s adolescence, gastrointestinal symptoms, weight and growth problems as well as fatigue were described. Later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine and Addison’s disease. Chronic back problems, due to osteoporosis, resulted in several operations and required medications for chronic pain."
    Greene adds that Kennedy’s Irish heritage, history of gastrointestinal complaints since childhood, diagnosis of irritable bowel syndrome and migraine, presence of severe osteoporosis, and the development of Addison’s disease all point to celiac disease.
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    The occurrence of Addison’s disease in his sister, however, argues for a familial [genetic] cause of his Addison’s disease, rather than an iatrogenic one.
    Source:
    Irishcentral.com.

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    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
    Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
    He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
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