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  1. Medical Mysteries and Shadowlands the Posterboys Story of how he unlocked help co-morbid Pellagra God being his help from his Celiac diagnosis. May you find the same faith in your life for to Educate is to truly Free! How to determine if it is a complementary or competing diagnosis? It takes faith to free yourself from a comorbidity. Health is like faith . . . you will only do what you believe. And you can have only faith in what you know to do. As some long time members of celiac.com know most/many of my blog posts’ document my trials and tribulations with Low Stomach Acid often being misdiagnosed as high stomach acid today). I have like many of you on this board had severe GI symptom’s culminating in a Celiac diagnosis after 30+ years of IBS and/or NCGS symptom’s. Only to find out that taking BetaineHCL (powdered stomach acid) helped alleviate many of my symptoms’. **** Let me say that this does not negate my positive Celiac/NCGS (really positive blood test only) diagnosis. I am in the medical world something termed a “Zebra” or “idiopathic” would be a more correct term/diagnosis. These GI conditions were happening for an “unknown reason” . . . Low stomach acid being misdiagnosed as HIGH stomach acid instead. Think the “House” TV show which I don’t get to see much anymore but commonly took several “differential diagnosis’s” to determine the correct one. While any of the previous diagnosis had a valid conclusion they ultimately were wrong. (But in TV land . . . . everybody finally gets the right diagnosis and gets better as if my magic it seems) but if you have ever read the Washington post’s “Medical Mysteries” column you know that is far, far from the real world sometimes. https://www.washingtonpost.com/national/health-science/a-bad-diagnosis/2015/08/24/b17606c2-12ac-11e5-89f3-61410da94eb1_story.html Often we/us “‘Zebras” exist in some “shadow land” as described well in this NYtime times article here discussing the difference between “The Damage of Bile Reflux not (Stomach) Acid” http://www.nytimes.com/2009/06/30/health/30brod.html quoting “The symptoms are similar to heartburn, and many sufferers are told they have gastroesophageal reflux disease, known as acid reflux. Yet treatment with popular remedies for acid reflux, like the acid-suppressing proton-pump inhibitors Prilosec, Prevacid and Nexium, fails to work or gives only partial relief. That’s because acid reflux is, at most, only part of the problem. The main culprit is bile reflux, a back-up of digestive fluid that is supposed to remain in the small intestine, where it aids the digestion of fats.” However if low stomach acid continues to be treated like HIGH stomach acid instead . . . no real progress is made and people become locked into a (bad) misdiagnosis. I have been that person. I know what it is like to receive one bad diagnosis after another. Co-morbidity is a real medical condition where more than one disease exists in a person and because of “preconceived notions” one disease is not being treated because the other “Primary” disease is considered secondary to the first. See my blog post about how this “devastating delay” can delay healing in recognizing the correct morbidity. Or can we identify the real/correct diagnosis in the first place. Maybe? Or Maybe Not? I am not saying this will help “All” your problems but it will help your co-morbidity. My co-morbidity was Pellagra occurring with/because of my Primary NCGS/Celiac diagnosis or as I said in another blog post I had Celiac disease and developed Pellagra. Or was it I had Pellagra and was diagnosed as a Celiac? How could I know for sure? I could supplement with the missing ingredient that leads to Pellagra in time. And if I got better then I had addressed a common co-morbidity in celiac disease. See my blog post where I explain how to win this two front war. I have found (digestive) peace praise be to God! Now I don’t’ expect this to work for everyone who try’s it but I didn’t anticipate the amount of resistance or faith it would take for people to consider a valid “differential diagnosis” either. It turns out without faith . . . people can’t get better. I will say it again “Health is like faith . . . you can only do what you believe”. What do I mean by that? Read most any post from Ennis_Tx and he will faithfully tell you about Magnesium. . . though few believe him (often) he faithfully tells it (because it helped him). I didn’t know what was happening at the time. I was witnessing the Pike Syndrome in action . . .until it happened to me. I naively believed . . . tell other’s and they will believe. Not so young padawan . . . you can have the knowledge to help other’s but until they know how much you care . . . they don’t care how much you know. I had come up against the greatest force in the (medical) world)) and maybe the world in general (I speak as a man) . . . inertia/apathy also called “learned helplessness”. Better known as the “Pike Syndrome” (Anybody who has received a misdiagnosis . . .. later on to find out your IBS is now NCGS or your NCGS is now Celiac disease this post is for you. Think if you had received a Celiac diagnosis in the beginning how much suffering you could of avoided over all these years.) Explained well here at a motivational coaches site https://jcrowcoaching.com/2012/02/01/that-pike-experiment-is-downright-chilling/ I will quote short pieces/clips to explain quickly what I mean but read it all for your selves for a more comprehensive understanding of this concept. “Known as the Pike Syndrome, it’s a great, albeit depressing, example of learned helplessness. There’s a pike in a tank of water along with a dozen doomed minnows. Sure enough, the pike darts and snaps and gorges. Poof, the minnows are nowhere to be found and the pike is pretty satisfied. Enter these two exceptionally perky researchers who proceed to lower a glass barrier into the tank and slip in another dozen minnows. Like any self-respecting pike, this fish is thinking “lunch,” and goes after them with gusto. Except he smacks his nose against the glass and comes up empty-handed (so to speak). Again. And again. Finally, the pike sinks to the bottom of the tank, suspends himself in the water and stops trying. That’s when these researchers (and really, they’re so happy they’re scary) remove the glass barrier, freeing the minnows to swim wherever they like. And where they like includes all around the motionless pike, right in front of his nose, even bumping into his head. And the pike? He just sits there and never again tries to eat a minnow. And he starves.” To many times in life there are “invisible barriers” in our lives’ holding us back. . . This is to those who have lost hope or are still searching (hopefully) if you are reading this blog post for yourself or a friend who has developed NCGS or Celiac disease. Gluten is your minnow (with good reason) but if you have Pellagra too (that invisible barrier) can be removed by supplementation. IF your now suffering from Celiac and Pellagra the way I was then taking Niacinamide will remove the Pellagra barrier in your GI quest to get better and find GI peace from Pellagra for yourself the way I have. How do we know if it really can be Pellagra instead? It is as simple as Occam’s Razor. From Wikipedia 1. “Occam's razor is a problem-solving principle attributed to William of Ockham (c. 1287–1347), who was an English Franciscan friar and scholastic philosopher and theologian. The principle can be interpreted as stating Among competing hypotheses, the one with the fewest assumptions should be selected.” The correct diagnosis is the simplest one to diagnose. Pellagra can be simply treated by supplementation. AND (a witness of two is true) IF you have developed a CORN allergy in addition to your gluten allergy you have met the medical definition of Pellagra 75+ years ago lost now to medical history. See Dr. Heaneys’ great blog post summarizing this fact about Pellagra and the 4 Ds. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ I will say it again “The correct diagnosis is the simplest to diagnosis”/simplest to treat in a co-morbid condition. . . where there is some doubt as to the true diagnosis. And supplementation removes that barrier if indeed you have also developed a corn allergy I beg you to consider taking Niacinamide 2 or 3/day (whichever is easier/ with each meal or morning and evening) for 6months to see if your GI problems don’t improve the way mine did after 30+ years of suffering from a Vitamin deficiency. Or if you are still suffering from a “poor prognosis” and poor dietary compliance (seemingly) though you have tried your best (you really have) and are still failing at achieving remission then consider the differential diagnosis of Pellagra is all I ask. Also see this thread about a Celiac starfish/zebra who is suffering still from Pellagra misdiagnosed as Celiac disease (I believe) and is shocked her Ttg levels are still elevated. quoting/paraphrasing from the earlier Pike Syndrome article christina this post is for you. “The thing is, unlike that starving pike, we have the power to change our perspectives, challenge the accuracy of our beliefs, and question our views. It’s not necessarily easy. Sometimes it takes an outsider to help . . . .who will push and prod and challenge. If we’re lucky something inside of us nudges at our unconscious until we move, and try, and change our views”… /belief(s) about our/your bad diagnosis. You will only know if you try! I pray you will have the faith to try! If it could help why wouldn’t you at least try? You are not a Pike! As always 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen Change is not easy . . especially if you have developed/are suffering from the Pike Syndrome I grant . . . but possible with education for with education comes understanding. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (Pike/sufferer still suffering), by the comfort wherewith we ourselves are comforted of God.” Posterboy by the grace of God, *****Note: I have said all I have intended to say. I speak as a man. Badly misquoting Romans 10:14 How then shall they change their stars/diagnosis in what they have not believed/heard? and how shall they believe in what they have not heard? and how shall they hear without a preacher? Romans 10:14 "How then shall they call on him in whom they have not believed? and how shall they believe in him of whom they have not heard? and how shall they hear without a preacher?" I have spoken/preached to other’s still suffering with/about a diagnosis I did not receive that helped me. I hope it helps you too the way it did me. Pellagra – Like Celiac Disease has existed in the Shadowlands as a Medical Mystery for way too long! Find out which is the correct diagnosis is by supplementing with Niacinamide 3/day for 6 months I beg of you until BURPING two hours after a meal is your new normal and the “Natural Order of Things” have been restored. If this has "Piked" your interest you can read best how to take Niacinamide by reading this blog post. You are not a Pike! You can decide for yourself. Knowledge is power! Now that you know what else Celiac Disease could be what will you do with this knowledge? Will you sink to the bottom of the tank or try to bust through that glass barrier (which isn’t there) but in your mind if Pellagra is now being diagnosed as Celiac disease and the doctors have badly misdiagnosed this Medical Mystery (Pellagra) and you have been found to exist in the Shadowlands of Medicine. Then there is hope! This is not as far off as it might sound on a first hearing. See Season 2 Episode 22 “Forever” listed as episode 44 see link below of the medical TV drama “House” the “Differential Diagnosis” /Final Diagnosis was Pellagra for the Episode on Celiac Disease. https://en.wikipedia.org/wiki/House_(season_2) Feel free to comment and add your success stories when you begin burping w/o bloating for the first time in years and years so others too can be helped from your experience. Like I am sharing now. Praise bee to God if you have considered what I said and are willing to try it (taking Niacinamide) for yourself or your little pike if you are a parent and still searching for answer's for your little one until . . . burping is their/your new normal. I only know it helped me. I can't be the only one. If I am let it not be because I did not share! A witness of of two is true! Both you and your tyke take it (Niacinamide) at the same rate/amount 2/day or 3/day (whichever is easiest) and you will begin burping together -- a confirming sign that the Vitamin is making a difference and Pellagra is fading away into medical history for you in approx. 3 months. 2: 7 “Consider what I say; and the Lord give thee understanding in all things”
  2. Celiac.com 10/08/2012 - Since 2004 when Congress passed the Food Allergen Labeling and Consumer Protection Act, sufferers of celiac disease have awaited some sort of finalized action from the FDA to set a rule for gluten-free labeling. The FDA proposed a gluten-free food labeling rule in 2007 and since then, there have been multiple open comment periods for it, but as of yet, there has been no finalized action to control gluten-free labeling in food products. In an effort to expedite this process, “Jennifer I” of Sebastopol, CA started a petition on the White House's official website. Part of the concern driving this petition stems from the fact that for many, the gluten-free diet is one of necessity, not of choice. 'Gluten-free' has become something of a new marketing buzzword, as the diet's popularity has grown dramatically in recent years. This makes labeling more important than ever: companies seeking to cash in on a growing market may be tempted to cut corners and label products as gluten-free, when in fact they are not. Supposedly, the FDA will be finalizing their rule sometime this year. Whether or not they stick to that time frame, this petition is a quick and easy way of putting more pressure on the federal government to finalize a gluten-free labeling rule. Source: https://petitions.whitehouse.gov/petition/finalize-standards-gluten-free-labeling/SsmdZh3C?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl
  3. 4 egg whites -- whip till stiff, but not dry 4 egg yolks -- beat till light and creamy 1 cup sugar beat in to yolks Add to yolk mix: 1 cup potato or rice flour 1/8 teaspoon salt 2 tablespoons lemon juice 1-½ tablespoon vanilla Topping: ½ cup brown sugar ½ teaspoon cinnamon ½ teaspoon cocoa ½ cup rice flour ¼ cup chopped nuts 3 tablespoons butter Fold egg whites into the batter. For topping, blend softened butter with sugar, nuts, cinnamon, flour, cocoa. Bake in greased and floured 9-inch round pan. 325 for 20 minutes, then 350 for 15 minutes. Version #2: In a classic mother-daughter moment, I wanted to make the coffee cake for my mom over thanksgiving. She had to help, and then tinkered with the recipe a bit, so this is what Ive now ended up with ... the blend of flours really makes a difference and I think the extra egg-and-a-half [?] has made it more moist. Traceys Variation on the Shipman Coffee Cake: 5 egg whites -- whip silly 5 egg yolks + 1 total egg -- beat till light and creamy 1 cup sugar -- beat in to yolks Add to yolk mix: ½ cup Lentil bean flour [from Indian grocer] ½ cup rice flour 1/8 teaspoons salt 2 tablespoons lemon juice 1-½ tablespoon vanilla splash of Baileys * Topping: 3 tablespoons butter, melted impatiently in a skillet ½ cup sugar a whole bunch of cinnamon ½ cup rice flour 1 cup chopped nuts Fold egg whites into the batter**. For topping, blend softened butter with sugar, nuts, cinnamon, flour cocoa. Bake in greased and floured 9-inch round pan. 325 for 20 minutes, then 350 for 15 minutes. *Yes, I did call Baileys and they assured me their Baileys + Cream is totally gluten-free ** mom would like it known that folding egg whites into batter is a lost art form. Impatience does not work here, or else youll poof all the air out the egg whites. Shes convinced that if you take the time and do it right, young lady that the coffee cake will poof to well over 4 inches. With the kitchen gods on her side, her patient folding resulted in a nearly 5 inch tall coffee cake that spilled over and trashed her brand new oven. [size does matter ] *** for leftovers -- if any -- wrap in wax paper, then a Ziploc baggie to keep in moistness. Enjoy!
  4. This article appeared in the Winter 2005 edition of Celiac.coms Scott-Free Newsletter, and is an edited excerpt from Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living. Celiac.com 01/11/2005 - Even the most seasoned wheat-free/gluten-free eater (forgive the pun—"seasoned eater") may feel a little uncomfortable venturing out of the home. Its true that your risk of getting unsafe foods does increase when you leave home, but most people agree that the life experiences of eating at restaurants while traveling, or even just the social aspects or convenience of eating at a restaurant on any given day or night, are well worth it. In reality, when you eat at restaurants, some chefs will "get it" and work to ensure a safe meal for you, and others wont. Going to restaurants isnt really about eating as much as it is the ambience, the company, and, well, okay—the convenience. Focus on those primary reasons for going to a restaurant, and make the food secondary, even if theres very little you can eat. If youve heard me speak or read my books, then youve followed my advice and stuffed yourself before you left the house, so youre not hungry anyway. Defensive Dining Its been said that the best offense is a good defense, which probably applies to restaurant excursions as well as it does to the football field. Im not encouraging you to be offensive; in fact, quite the opposite. Its not, after all, the waiters or chefs responsibility to accommodate your diet. If they do, be prepared to leave a big tip, because their job descriptions definitely do not include understanding the intricacies of this diet. Nor should you fill them in on all the minutiae surrounding the diet. A brief education is all they should need, because you should already have narrowed down the choices on the menu that look as though they might be safe, or at least may be prepared in a way that would make them safe. Its okay to ask that your food be prepared in a special manner—people do that all the time even when they are not on a special diet. Most important, you need to be aware of specific foods and ingredients to avoid when eating out. Some things are more likely to be okay than others, and you should make it easier on yourself by choosing items that are more likely to be wheat-free/gluten-free. Plan Ahead Your days of eating at Italian restaurants with ease are probably behind you (although many Italian dishes are made with polenta, which is gluten-free). Pizza joints: also not likely. Chinese: possibly. Dont set yourself up for disappointment by selecting restaurants that will fill you with frustration by the very nature of their menu selection. Instead, choose restaurants with a large selection, or choose a restaurant based on its ethnicity or culture because its likely to offer more wheat-free/gluten-free foods. Thai foods, for instance, are often gluten-free, since they use fish sauce instead of soy sauce for a lot of their marinades and seasonings (although some fish sauces can also contain wheat). Study your ethnic foods so you know the ingredients they contain and can make good choices when it comes to restaurant selections. Knowing what to order is just as important as knowing where to go. Consider, for instance, an American-style restaurant like Dennys or Sizzler. For breakfast, youre better off contemplating the eggs (beware: many restaurant eggs are from a mix that contains gluten), hash browns (be sure to check), and bacon (check again) than you are the Waffle-Mania, even if it is only $3.95. For lunch or dinner, you can almost always find a restaurant that will offer you a burger (no bun), fries, and a salad (no croutons). Be aware of things that are likely to be problematic. For instance, most sushi is okay, but some of the products, such as imitation crabmeat, usually contain wheat, while other sushi items can contain soy sauce, which usually also has wheat. Cajun cooking often uses beer to cook shrimp and other shellfish, and of course beer is off-limits on a gluten-free diet. Make it easier on yourself by choosing foods that are more likely to be safe for you. What you end up with may not be your first choice, and you may find yourself longing for the days when you could order from a menu with your eyes closed. Dont whine about what you cant have, and focus on the things you can. Remember, eating out isnt about the food. Its about the atmosphere, the company, and the fact that youre not cleaning up. Talk to the Waiter and Ask the Right Questions Sometimes talking to the waiter is an exercise in futility. If you realize this is the case, either order what you deem to be safest, order nothing at all, or leave. A cooperative waiter or waitress, on the other hand, is your first line of defense in keeping bad food away. Make friends. Be kind. Tip well. After youve picked what you think could be a safe menu selection or could be made into one, ask questions. Dont be shy; its not rude or uncommon for people to ask questions, even when theyre not accommodating a restrictive diet. Ask if the hamburger patty is 100 percent beef or if it has fillers; ask if the eggs are all-egg, or if they have fillers; check to make sure the fries arent coated with breading, seasonings, or anything else that would make them off-limits. Check sauces and marinades; even if you mention that you cant eat wheat or gluten, people rarely realize, for instance, that soy sauce usually contains wheat. Once youve made your menu selection, the waiter isnt dismissed. At this point it gets a little awkward because youve probably already asked a lot of questions, but there are a few more to ask, because how the food is prepared is also important. You need to make sure that the hamburgers arent grilled on the same rack as the buns, and that the croutons arent just plucked out of your salad, but rather that they were never put in. You even need to ask about the oil the fries are cooked in, because if theyre cooked with breaded foods, you really shouldnt eat them. At this point, even the most patient of waiters is likely to be giving you a stiff smile with that "Is there anything else youd like to know?" expression. Offer to talk to the chef, if it would make things easier. Chefs, although not often educated in the fine art of accommodating restricted diets, are usually interested in them nonetheless, and are usually quite fascinated when you talk to them about the wheat-free/gluten-free diet. Each time you talk to a chef, youre educating him or her and making it easier for the next wheat-free/gluten-free patron who comes along. Do Your Homework Many national chain restaurants have lists of their wheat-free/gluten-free products available by phone or on their Websites. Collect lists from your favorite restaurants and fast-food chains, and keep them in a folder for future reference. You may even want to consider putting them in a three-ring binder that you keep in the car. Once youve done all the work to find restaurants that work for you, by all means dont worry about getting in a rut. Theres nothing wrong with "tried and true" when your only other option is "guessed and now Im sick." Dont get too complacent, though, because just like products at the grocery store, menu items at restaurants sometimes change ingredients. Check frequently, and remember that even if you think its safe, if something makes you sick, dont eat it! BYOF (Bring Your Own Food) It probably wouldnt be too cool for a group of eight to walk into a lovely Italian restaurant, with everyone carrying their entire meal in a brown paper bag, simply to enjoy the ambience. But if you go to a restaurant and bring a small amount of food with you—even if its the main course—its certainly not rude. Some (but not many) restaurants have regulations about preparing food, and are allowed to serve only foods that theyve prepared. Most, however, have no problem if you bring in your own pizza and ask them to heat it for you. If you do bring your own food, make sure you its wrapped in aluminum foil to avoid contamination during the heating process. Pizza ovens, for instance, sometimes have convection fans that can blow the flour from other pizzas around the oven, contaminating yours. If you bring bread and ask them to toast it for you, theyre likely to put it in the slot of a toaster, contaminating it with "regular" crumbs and ruining your pristine bread. In that case, you might want to explain that it cant be put in a toaster, but if they have a toaster oven or broiler (that isnt blowing flour around), that would be wonderful. If youre asking them to microwave something, of course, theyll just remove the aluminum foil. The most important thing to remember if youre bringing your own food is to leave a big tip. Sprechen Sie Gluten? When eating at restaurants of different cultures and ethnicities, its a good idea to know the language, especially if the restaurant is staffed by people who speak a language other than your own. Learn the important words to best communicate your special needs. For instance, in Spanish the word for flour is harina, but that can refer to corn flour or wheat flour, so you need to know that the word for wheat is trigo, and corn is maize. Some restaurant cards come in a variety of languages. Additionally, some Websites offer translation capabilities. Tipping Im aware of the redundancy in my continuous references to tipping and the importance of being extra generous at tip-time, but I believe it bears repeating. When it comes to asking people to accommodate the gluten-free diet, it seems imperative that we express our gratitude to those who generously oblige our requests. As awareness of this diet increases over the next few years, it will be more common for restaurateurs to understand these restrictions and accommodate them. Anything we can do as a community to enhance their understanding and acceptance will benefit us all in the long run. Have fun! Now that youre armed with some basic restaurant realities, remember rule #1: Have fun! Dont live your life in a bubble just because you have a dietary restriction. Bon appetite!
  5. Celiac.com 07/21/2004 - Tonight the U.S. House of Representatives, under the leadership of Rep. Nita Lowey (D-NY), passed the Food Allergen Labeling and Consumer Protection Act (S. 741). This landmark legislation will require the top 8 food allergens [milk, eggs, peanuts, tree nuts, fish, shellfish, wheat and soy] to be listed on food labels by January 1, 2006. The bill also requires the FDA to develop rules for the use of the term gluten-free on product labels by January 2008. The One Voice of the Celiac Community has been heard ! American Celiac Task Force actf@fogworks.net
  6. The House of Representatives has, once again, acknowledged celiac disease. It has passed the funding bill for the Department of Health and Human Services (HHS), which includes the NIH. The report language detailed below was included in that legislation. This language serves as guidance from Congress to the NIH to focus on certain issues (in this case celiac disease). A special round of thanks is due Representative Nita Lowey (D-NY) for her tireless efforts on behalf of the celiac community. Further thanks go out to Representative Ralph Regula (R-OH), Chairman, House Appropriations Subcommittee on Labor-HHS-Education, for his leadership on this important bill. We now wait to see what happens with the Senate version of the funding bill, and whether it is passed before the Congress adjourns later this month. HR 5006; Passed House on Sept. 9, 2004 House Report. 108-636 "Celiac disease.--The Committee commends NIDDK for recognizing the lack of understanding, and under-diagnosis of the genetic, autoimmune disorder, Celiac disease (celiac disease), and for including celiac disease in the NIH Consensus Development Program for 2004. Although readily diagnosed in European countries, it takes on average eleven years for Americans to be properly diagnosed. Delays in diagnosis place individuals at risk for osteoporosis, anemia, miscarriages, and small bowel cancer. Current evidence demonstrates that celiac disease is the most common genetic disorder in the world, with a treatment-- strict, gluten-free diet--that can be managed almost exclusively by the individual, or family. Education about celiac disease is needed for health care professionals and patients. The Committee encourages NIDDK to coordinate informational and educational programs directed at health professionals, patients and the public to raise awareness and understanding about celiac disease, and the need for early diagnosis." A copy of the report is available at: http://thomas.loc.gov/cgi-bin/cpquery/R?cp108:FLD010:@1(hr636): Allison Herwitt Co-Chair, Legislative Project American Celiac Task Force
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