The Gluten Syndrome: a neurological disease


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The Gluten Syndrome: a neurological disease

  1. 1. DISCLAIMER: This publication is intended as a general information resource for gluten-intolerant individuals. It is NOT intended for use in diagnosis, treatment, or any other medical application. Please consult your physician for professional medical advice and treatment. The Gluten Syndrome: a neurological disease versely affect the nervous system. contributor to the Journal of Gluten This New Zealand physician esti- Sensitivity ( He also mates that the Gluten Syndrome maintains a blog on his website affects approximately 10% of the ( and is in population —a startling statistic. the process of opening what he is call- Dr. Ford will speak Saturday, No- ing his “E-Clinic” where he can help vember 7th on the subject of the neu- individuals through his website. rological effects of gluten sensitiv- Dr. Ford (MD, MB, BS, FRACP, ity. This general meeting is from Assoc. Professor) is in the US on a 9:00 to noon, at the Pima Commu- speaking tour that includes the CSA nity College District Office Cam- Conference, NASPGHAN Annual pus, 4905 E Broadway, Bldg C. Meeting & Postgraduate Course (located just east of Swan, directly (presenting continuing education for behind TGI Friday’s. – Please see pediatric gastroenterologists) and map schematic p. 2 or our website three other speaking engagements in at www. SouthernArizonaCeliac- the US. The demand for his presenta- ) tions underscores his credibility as a A world-renown expert on what he medical doctor, research pioneer and Dr. RODNEY FORD terms the Gluten Syndrome, Dr. champion of those with symptoms of Ford continues to expand his gluten intolerance. SACS is fortunate Gluten just causes gastrointestinal knowledge base through treating pa- to have a speaker of his professional and skin problems, doesn’t it? Not tients at his Christchurch, NZ stature. according to SACS general meeting clinic. A prolific author (over 10 Please join us to listen to this very speaker, Dr. Rodney Ford who hy- published books including The Glu- important message, and take time to pothesizes that gluten can also ad- ten Syndrome), Dr Ford is a regular See Nov speaker page 2 The following Abstract published online April 30, 2009 in Medical Hypotheses Journal, presents a brief synopsis of the lecture he will present: Hypothesis: Gluten causes symptoms, in both a combination of cross reacting antibodies, im- celiac disease and non-celiac gluten-sensitivity, mune complex disease and direct toxicity. by its adverse actions on the nervous system. These nervous system affects include: dys- Many celiac patients experience neurological regulation of the autonomic nervous system, symptoms, frequently associated with malfunc- cerebella ataxia, hypotonia, developmental de- tion of the autonomic nervous system. These lay, learning disorders, depression, migraine, neurological symptoms can present in celiac and headache. patients who are well nourished. The crucial If gluten is the putative harmful agent, then point, however, is that gluten-sensitivity can there is no requirement to invoke gut damage also be associated with neurological symptoms and nutritional deficiency to explain the myriad in patients who do not have any mucosal gut of the symptoms experienced by sufferers of damage (that is, without celiac disease). celiac disease and gluten-sensitivity. This is Gluten can cause neurological harm through called “The Gluten Syndrome”.
  2. 2. GFFF coordinator needed for 2010 Chapter 15 Notes them until the GFFF event. It’s not a Celiac disease affects twice as difficult job as SACS has the forms many women as it does men, and you need to get started, and we will this statistic becomes even more then supply a list of vendors to upsetting when you consider that you. There will also be plenty of help according to the Association of and backup if you have questions. Family History of Autoimmune This job requires maybe one or two Diseases and Autism Spectrum hours a week until about March, and Disorders, children who are born then it will be a bit more time con- from mothers with untreated suming as we approach the date of the celiac disease are 3 times more GFFF itself. likely to have autism. To learn Most of the initial vendor contacts more: see this website: will be made via email and then possi- bly followed up via phone call. Our gluten-free-health/women-and- Vendor Coordinator needs to have celiac-disease/ Internet access in order to send reports Pres. CHERYL WILSON speaks at How long can that bottle of to SACS, as well as make contact the September 26 general meeting ketchup stay in your with vendors. If you don’t have email Do you want to be part of the access, you can still assist the Coordi- fridge before it goes bad? This GFFF’s 2010 ‘A’ Team? Then we nator by volunteering to make phone site lists all kind of foods NEED you! SACS needs someone to calls, so let us know. Two people can and how to keep them fresh be the Vendor Coordinator for our share this important job. longer as well as when to get rid April 24, 2010 GF Food Faire here in Please contact Cheryl Wilson (520- of them. If you have a question, Tucson. 298-5551 or email: click on the particular picture, You will be reporting to President if you can join the team. and a whole list of stuff appears Cheryl Wilson as you make contact It is critical that we get started con- with vendors and then follow up with tacting vendors as soon as possible. Sunflower Farmers Market has opened a Northwest side market at 3860 W. River Road (Orange Nov Speaker (Cont. p. 1) Don’t forget to bring your GF good- ies to share and maybe plan to pur- Grove and Thornydale intersec- invite your medical providers friends, chase some raffle tickets to help sup- tion, where Thornydale becomes family and anyone else who you be- port SACS. The ‘meet and greet’ por- River). They have a decent selec- lieve might benefit – which would tion of the meeting will be from 9- tion of GF products and organic include everyone. Please do NOT 9:30 with the presentation starting meats and produce. Phone: (520) miss this opportunity to learn from a after that. ( If you wish to bring a GF 204-1787. Sunflower’s corporate world-famous researcher and an ac- snack, remember to bring the label, the website lists the location as complished, entertaining presenter. box, or an ingredient list to accommodate ‘Marana’, but don’t expect to As always, this lecture is free and those with multiple food restrictions. find it there. open to everyone. SACS provides the coffee and tea.) CSA/USA: 877.272.4272, 9 a.m. to 4 p.m. Central Time. Their Map to Nov. 7 meeting URL is: Membership changes? Notify us via the website or call 520.495.4829. Email the website if you wish to be added to or Pima College Dist. Office Campus removed from our email notifica- 4905 E. Broadway, Bldg. C tion list. Located behind T.G.I. Friday’s Restaurant SWAN N 1/3 mi. S BROADWAY (2)
  3. 3. Planning a GF Halloween By DIANA KNOEPFLE - SACS’ Cel-Kids Coordinator Uh oh. It is October, and here her sister, friends, and the accompa- Here’s to a happy and safe Hallow- comes Halloween! Here it comes, nying adults on Halloween night. As een. All families will do what each is followed by all those other confound- this group goes door to door, she does comfortable with, and I hope that ing food –centered holidays for the not really want her father to hold her these suggestions will help. Below is GF, like Thanksgiving and Christ- back when the other children go up to a short list of the many GF commer- mas! a house that is not designated GF. She cial Halloween candies available and Halloween especially can be hard does not want to be different, and has some web sites with more candies for children who are GF. Friends talk said so. What do we do about this listed. For further help or information, of going door-to-door for Trick or conflict in food safety versus what the do feel free to email me at Treating, there is candy at church neighbors are handing out? . Harvest festivals, and parties at At home, we stand ready with Cel-Kids Tucson 2009 GF Hallow- school. Chances are, a lot of the many, many bags of commercial GF een Commercial Candy List: candy offered is NOT GF, yet the par- candy, a short list of which is in- Airheads Pops ent does not want to deprive the GF cluded in this article. Some is handed Airheads Whistle Pops child of the freedom of experiencing out as children come to the door with All Tootsie brand candies the Halloween holiday the way a their parents, but approximately half Clark Bar child should. What to do? And which of each bag is saved for when our Dum Dum Pops candies ARE GF? own happy group comes back to our Extra Gum Having dealt with this for a number house. My husband, who accompa- Farley’s Atomic Fireball of years now, we have developed nies our daughter, makes sure that no Farley’s Jawbreakers Hershey’s Kisses (milk chocolate) what our family is comfortable with candy is eaten while the children are Hubba Bubba Gum for our GF child. There are basically out. Jelly Belly Jelly Beans two approaches to this problem. Both Jolly Rancher Hard Candies of these ideas can help make the Trick Jolly Rancher Lollipops or Treating experience more enjoy- Just Born Hot Tamales able for the GF child and her parents. Lifesavers Fruit , Pops, Gummies A common suggestion for this di- Necco Wafers lemma that one finds on the Internet, Nestlé Baby Ruth is to take some pieces of GF candy to Nestlé Nips the home of “designated” neighbors Nestlé Butterfinger (not Crisp or Stixx) ahead of time, perhaps the day before, Nestlé Raisinettes letting these neighbors know what the X Then, of course once home, like Peeps Marshmallow Candies child’s costume looks like or have a any other family, the inspection of Skittles ribbon or badge on the costume. On candy for tampering begins. At this Smarties Halloween, have the GF child Trick time, our GF daughter begins sorting Starburst Fruit Chews or Treat only at those neighbors, that her collected candy into a known GF Swedish Fish way it is a sure thing that the child pile, and the not GF pile. Sweetarts comes home only with GF candy. After this, she is allowed to trade Welch’s Fruit Snacks This idea does have merit, as children the latter pile for the candy bags of Wonka Pixy Stix sometimes are tempted to sample commercial GF candies that have Wonka Laffy Taffy Wonka Nerds along the way. It may give the parent been saved for this purpose. She hap- Wonka Fun Dip, Fun Dip Sour of the GF child peace of mind. This pily chooses what she wants instead, Wrigley Spearmint Gum procedure will work best when the adding it into her GF pile. She thinks Wrigley Doublemint Gum child is young, and is not so aware of this is great fun, and it gives her the York Peppermint Patties feeling “different”. freedom to accompany her sister, GF Candy List Web Addresses: Our GF daughter has just turned six friends, and father around the 1. years old. She is a Trick or Treating neighborhood. Additionally, this gluten-free-halloween-candy-quick-list- veteran in our child-friendly method is helping her to learn to keep 2009/ neighborhood. Of course, not all the a gluten lifestyle on her own. Her fa- 2. glutenfreefoodshopping/a/GFcandies.htm people in our area know this is a GF ther will eventually take the non-GF 3. child coming to their door, nor may pile in a bag to work, where it quickly gluten_free_mom/2009/10/gluten-free- they recognize her in disguise as she disappears. Poof! Halloween magic, halloween-2009.html takes her flashlight and goes out with and all involved are happy. (3)
  4. 4. CD’s itchy cousin, DH ancestry and afflicts about porosis. Another 20% may have one in every 10,000 people, atypical CD symptoms but a full 60% roughly 10-15% of all CD have ‘silent CD’ with no gastric patients. The mean age of symptoms at all. Fewer than 10% onset is in the 30s (40.1 have the anemia common to CD. years for men and 36.2 For an accurate diagnosis, doctors years for women) but it has should look for patients’ unexplained appeared in people from itchy eruptions, especially with in- ages two through 90. volvement of forearms, knees, but- Childhood onset DH is tocks and scalp. The lesions typically rare. While CD is more form small herpetiform (herpes-like) prevalent in women, men clusters of fine blisters (vesicles), with DH outnumber symmetrically clustered classically women by two to one. on both elbows, knees, and/or but- Since DH is an expres- tocks. DH sufferers are among itchi- sion of CD, virtually all est of ALL patients. patients must have the gene DH is diagnosed by presentation of HLA types: DQ2 or DQ8 papulovesicles (small blisters) and but 90% of DH patients abraded skin on the elbows, knees, Dr. GERALD GOLDBERG calls on an audi- express HLA DQ2 while buttocks and scalp. A skin biopsy ence member during a lively question- 8% have DQ8. Like CD, will show immune system cells in the answer period after his illustrated lecture. just having the genes does area between the inner and outer skin not mean you have DH. with the blister extending to the very Tucson dermatologist Dr. Gerald Also, as with CD, there is a familial lowest level of the skin itself. Pres- Goldberg prepared and delivered a link with 10% of first degree relatives ence of granular IgA (reactive anti- fascinating talk on Dermatitis Her- of DH having CD or DH. bodies) in the petiformis (DH), the fairly rare skin DH is an extremely itchy A full 60% of small, nipple- manifestation of CD, for our Septem- skin condition, but over 90% DH patients like protrusions ber 26 general meeting. His collabo- of DH sufferers also have evi- of the inner ration with leading USA DH re- dence of gluten-sensitive intes- have ‘silent layer of skin searcher, Dr. John Zone, Chairman of tinal damage- ranging from CD’ with no GI surrounding the the Dermatology Department at the mild to severe loss of intestinal blister is essen- University of Utah School of Medi- villi. However, only about symptoms at tial to a correct cine, brought us the latest findings, 20% of DH patients have the all even diagnosis. In treatments and statistics. Because of GI symptoms of CD and the fact, once the the value of this information, Celiac severity of their skin disorder though their lesion has been Digest will summarize the content in has no relationship to the se- gut is suffer- scratched to the more depth than usual: Dermatitis Herpetiformis was first verity of their gut damage. They may be covered with DH ing continu- point of bleed-ing by the pa- discovered/described in 1884 by Dr. lesions but have a relatively ous damage tient, the diag- Louis Duhring, a dermatologist at the healthy intestine or vice versa. nosis cannot be University of Pennsylvania, but it Like all CD sufferers, the severity of made from that area. took another 83 years until DH was the symptoms is not necessarily A definitive diagnosis is made by tentatively linked with CD in 1967. linked to the internal damage labeling of antibodies or antigens in Only 19 years later, the link between wrought by the disease. This makes the skin sample with fluorescent CD and DH was established via im- strict adherence to the GF diet im- dyes. False negatives may occur if munology studies. Blood tests to perative. abraded skin is biopsied or if the pa- identify CD and DH markers for both Only 10-20% of DH patients have thologist reading the slide is inexperi- the skin and the gut became widely the textbook symptoms of CD - diar- enced. available in 2003. rhea, pale and foul-smelling stools, Both CD and DH are hard to diag- Just as in CD, DH is most common severe abdominal distention, malnu- nose because the blood tests available (4) in people of Northern European trition/weight loss, anemia and osteo- See DH Lecture page 5
  5. 5. DH Lecture (continued from P. 4) to us today show a high frequency (up to 20%) of false negatives. The true incidence of CD is much higher than the existing blood screening tools suggest. However, there has been an increase in diagnosis re- cently, not only because of ease of performing blood tests to confirm a diagnosis, but also because of an ab- solute increased prevalence of CD in the greater population. Dr. Joseph Murray proved this with his study of blood samples taken from Army re- cruits 60 years ago. (See Sept. issue of Celiac Digest) Diseases associated with DH in- clude thyroid abnormalities, and per- nicious anemia. Addison’s disease is uncommon but known and T cell Dr. Gerald Goldberg answers SACS’s member Emily Shipsey’s ques- tions after the lecture. Dr. Goldberg stayed until he had talked to eve- lymphoma (a type of cancer) preva- ryone who wanted his medical advice. lence is increased. There is some in- formation to suggest the lymphoma is reversed by a GF diet. The link of Since DH clears rapidly on Dap- Dr. Goldberg practices at Pima Der- osteoporosis with DH is unknown. sone (a sulfonate antibiotic also used matology (5150 E. Glenn Street, Ph. Conditions like immune linked skin/ to treat leprosy) and suppresses in- 520.795.7729) and provides adult, mucous membrane diseases (such as flammation in the skin, many DH pediatric and cosmetic dermatology non-male pattern hair loss, psoriasis, patients choose to take Dapsone as well as laser and skin surgery. and oral canker sores) have been re- chronically and not restrict gluten Check out his website at http:// ported to reverse with a GF diet. intake despite knowing that gluten is and see videos However, some of these diseases causing their condition and destroy- and before/after photos which may simply be caused because of the ing their intestine. Also, long-term demonstrate his surgical expertise. same genetic pre-dispositions which use of Dapsone is not without side allow the CD and/or DH. Or, as Dr. effects, some of them serious. Dr. Goldberg said, they could be caused Goldberg sees those people who re- Mark your by chronic stimulation of the immune system by gluten. fuse to follow a GF diet as an oppor- tunity to study the long-term meta- calendar Dr. Goldberg summarized the op- bolic and immunologic effects of CD (See SACS Leadership box Page 7 for tions for treating DH in order of their in the absence of a GF diet. phone numbers/email addresses ) preference: He clearly stated that treating DH ● A Gluten-Free Diet with drugs without addressing the 2009 ● A Gluten-Free Diet underlying cause, Celiac Disease, is October 30-31: 32nd Annual CSA Con- ference, Erie, Pennsylvania ● A Gluten-Free Diet neither smart nor healthy. Dr. Goldberg says most dermatolo- Dr. Goldberg finished his lecture Nov. 7: 9:00 a.m. to noon General Meet- gists, including himself were trained with a public service announcement ing - Pima College, Dr. Rodney Ford. with the mantra of “Patients will not concerning the danger of sun expo- Nov. 13: 11:30, GF Lunch Bunch at Lo- adhere to a GF Diet”, or the “Life is sure and skin cancer. He treated his tus Garden, 5975 E. Speedway. too short not to eat bagels!!” philoso- audience to some sobering photo- NO ROUNDTABLE FOR NOV/DEC phy. graphs of skin cancer/sunburn vic- Dec. 11: 11:30 GF Lunch Bunch. TBA Dapsone taken orally, while it tims, which served as an incentive to 2010 might subdue the symptoms of DH, cover up, limit exposure during mid- Jan. 27: 1 p.m. Roundtable, Ward 6 City does NOT affect the GI disease pro- day and to wear sunscreen. Hall, 3202 E. 1st St gression. Patients can also use topi- SACS appreciates his concern, his Feb. 27: 11 a.m., SACS’ Annual Potluck cal steroids and should avoid any expertise and his professionalism. Dinner, First Free Evangelical Church, foods containing iodide. 4700 N Swan Road. (5)
  6. 6. GF Not Gluten Freaky: Got it? Get it? Good. By NAOMI POE @ just as much as you did when “You’re always flying off with some So here you sit, with something you were first diagnosed. In fact, you new fad diet!” funky called gluten intolerance. You might still be grieving your- “Don’t think I’m going to change our know it’s serious because you feel self. Never being able to eat gluten Thanksgiving menu, just to suit your like you’ve been run over by a train again may not seem as big a deal as needs!” most days… and because your doc losing a pet or a loved one… but in “I can’t believe how expensive this is! just told you, “Look, get off the glu- reality, it is. Our culture intertwines This is just a scam – a big ripoff from ten or die,” in so many words. You food and love so tightly into tradition people trying to make money from certainly understand the need to stay and memory that the thought of us!” away from the Scary Four: Wheat, changing is horrifying. “What kind of loving G-d would do (non-GF) Oats, Rye, Barley – but this to me!?” how do you communicate that need 2. Denial—Coping with the idea of effectively to your family and dying or losing someone is a hard friends? concept to grasp. The mind can only Some of them look at you like handle so much new information. It you’ve got a highly contagious virus can only adjust so quickly. When too that you’re just waiting to pass on. much change is afoot, our survival Some of them snort and laugh it off mechanisms kick in. The mind just with an asinine comment or 10 about shuts down – refuses to accept the you and your freaky diet fads. Some new data. At this stage, people often Avoid of them pat you on the back and make convince themselves that you heard having a mac ‘n cheese, ‘because it’s made the doctor incorrectly, that the doctor Celiac Pity Party with white flour, not wheat.’ And may have misread the test, or that the some just stare in horror – after all, whole thing is just some sort of cos- Here are the five stages of celiac everyone knows that they always mic misunderstanding that will grief. bring the peach pie to the picnic. And evaporate with the morning fog. De- 1. Anger—When control is taken they have to bring the peach pie! And nial often looks like this: from a person, he or she tend to get the peach pie is your favorite. You “That seems like a really low number. angry. Sometimes really an- always eat peach pie! YOU DON’T If the tests were really bad, wouldn’t gry. Sometimes people direct the an- the numbers be higher?” LOVE MY PEACH PIE!???! HOW ger toward the person they blame for “But the Doctor said you had a mild COULD YOU DO THIS TO ME??? Ahem. upsetting the order of things -that intolerance, right? That means you’re would be you -or the doctor who If you’re wondering why people not really extremely allergic, so a threw this in their face… or even the little won’t hurt you, right?” seem to freak out about this new dis- Almighty. Anger gives an illusion of “Maybe they gave me the wrong ease you’ve got, and you’re wonder- control – A person can storm and rage test.” ing how to help them help you, and pull the silent treatment, and it you’ve come to the right place. “Maybe you ate too much gluten be- helps the pain, at least temporarily. In fore the test and it skewed the re- The truth is, your loved ones are celiac disease this looks like: grieving the loss of their former lives sults.” “I think all these tests are just for doctors to make more money, for the drug companies.” “But you don’t look sick. They must be wrong!” 3. Bargaining—When the brain has had time to reconsider the new infor- mation – when reality continues to hammer it with inescapable data, it will adjust by seeking out ways to understand and make sense of the new data. Often the brain will seek cultural cues to help formulate coping strategies. Most cultures have an un- (6) (6) See Celiac coping page 7
  7. 7. 2. Denial: Be firm, but stay calm. New Life Spacer Combat denial with data, not emo- tion. Continue to state what you know to be true. Be consistent in living a GF lifestyle! 3. Bargaining: Once again, be firm but polite. Stick to the truth. This is the time to introduce cooperative strategies that don’t compromise your health - offer to bring GF pasta to a meal, take the initiative in calling ahead to make arrangements. Show your love and reinforce your relation- ship with your loved one. 4. Depression: Be supportive. Look for the bright side. Encourage the per- Celiac coping crying, fatigue, and feelings of sad- son to look for coping strategies. Find ness. They realize it is inevitable and and share encouraging stories. (continued from P. 6) begin focusing on feelings of great 5. Acceptance: Enjoy this new life derlying philosophy – we’ll call it loss. Often, during this stage people and all it has to offer. Bring your The Law of Returns. This theory says will say: loved ones into this new life that good things happen to good peo- “Life’s not worth living if I’m going with joy. Always show your grati- ple. When someone does something to be a freak!” tude in words, actions, and acts of good, they earn a reward. When “You’ll never be able to enjoy normal service. someone does something bad, they food again!” 6. Seek out Others… and help them reap a consequence. This can also “I’ll never get better.” make this journey, too. apply to interpersonal relationships. 5. Acceptance—This is the final In China this is known as Guanchi, in stage of mourning. Accepting the fact Leadership Contacts Russian speaking countries it is that the loss has occurred and cannot known as Blat. In our culture, the be undone. The person experiences concept is expressed as, ‘you scratch closure and can now move on with my back, I’ll scratch yours.’ The idea their life. It is at this stage that people is that anyone can turn a situation to begin to make adjustments to life- their good (or to a mutually accept- style. Attitudes improve, and often the e. s w ny sit able outcome) with a simple exchange person becomes proactive in seeking thi on a of favors or compromises. solutions to challenges brought to his eb The idea that loss is somehow re- or her attention and to adjusting to the lated to mistakes or wrong actions is new life. This looks like: o em ct inf very deeply ingrained. You or your “Maybe I could try that new gluten- loved ones may believe that this ‘bad’ free pasta!” ail a has happened because of a misstep or “We’ll use another recipe that does lea cont misbehavior. You may believe that not use canned tomato soup.” prayers or actions may negate this “Did you make sure to call ahead and se ers one situation. Bargaining often looks like: let them know it has to be gluten “ If only you hadn’t overeaten so free?” ead ph ,p much bread, you wouldn’t have devel- People move in and out of these oped an allergy.” stages of grief – some faster than oth- ’s l l and “If only I hadn’t had you vaccinated” ers. Sometimes a person will regress “If I pray hard and fast every Satur- to an earlier stage of grief. Eventu- i SA r ema day, perhaps G-d will take this bur- ally, though, most people are able to den from us.” move to Acceptance. CS “If we just eat a little gluten – only on In your interactions with your loved Fo holidays! -perhaps it won’t cause ones, ask yourself, “What stage of damage.” grief does this sound like?” 4. Depression—Once people realize 1. Anger: Be patient. Let your loved that there is nothing to be done about one vent. Don’t take their venting their state, they become depressed. personally, either! Remind yourself This stage involves despair, constant that this, too, shall pass. (7)
  8. 8. Too busy to bake for the holidays? Remember, we can ship your order via UPS Overnight to Tucson.