It is my belief that for most people a modest level of soy intake, including its protein provides a valuable addition to the diet without undue side effects. There are many people who tolerate soy, who experience difficulties with gluten, dairy, peanut and egg proteins, especially if the soy is introduced into their diets gradually. In commercial food production, soy protein is often used at fairly low levels as a dairy powder, cheese, egg and nut extender/substitute, for price, functionality, natural preservative/anti-oxidant/emulsification properties, natural colour and for nutrition reasons.

Secondly, soy and other legumes contain natural oligosaccharides or complex sugars – principally stachyose, raffinose and vacchyose which consist of various combinations of galactose and glucose molecules – which human beings lack the enzymes to digest. These sugars ferment in the gut, rather than digest, producing gas, flatulence, stomach pains, bloating, diarrhoea and sometimes acute discomfort especially if the fermentation process occurs in the more restricted upper digestive tract. This is often crudely referred to as the “fart factor” and it is often far worse when there has been a rapid change of diet or an overly large amount consumed. There is also some evidence that fructose mal-absorption, for example, can lead to depression and interfere in menstrual cycles in young women. I believe this sugar factor in Soy may be of greater concern than the soy protein issue and one best considered within the FODMAPS (Fermentable Oligosaccharides (fructans, stachyose, raffinose), Disaccharides (lactose), Mono-saccharides (fructose), and Polyols (sorbitol, mannitol and xylitol)) Concept explored in Sue Shepherd’s recent PhD Thesis. Sue, who is both a celiac and a dietician, has taken a strong interest in this field because, along with diabetes, the fermentable sugars issue often overlaps and is associated with gluten sensitivity and celiac disease. These fermentation issues can appear in conjunction with or independently of any gluten issues. The gluten induced gut damage and nutrient mal-absorption exacerbating and feeding off the fermentation issue and vice versa. As with the reaction to gluten there is a wide range of sensitivity and responses to and between these different sugars with some people reacting adversely to all these sugars while others react to some and not others. The degree of and cumulative effects of exposure are also an issue. The response can also depend upon where in the gut the fermentation process occurs: there appears to be more pain if the fermentation occurs in the stomach or the small bowel rather than the colon. The fermentation may occur in one part of the gut, in all three parts or various combinations thereof. There is also some conjecture about the gut-brain axis over sending and misinterpreting the gut nerve signals. While Soy also contains a small percentage of fructose there is not sufficient present for this to become an issue. The fructose content of such staples as onions and garlic, for example, is of far more concern.

Interestingly, neither the protein nor fermentable oligosaccharides appear to be an issue in tofu consumption, where only some of the protein and sugars are extracted from the soy. The fermentation processes used in the manufacture of miso and tempeh, two other traditional soy foods, also seem to overcome the soy protein and fermentable oligosaccharide issues. It appears that the protein and sugar hydrolysis processes that take place in the fermentation that occurs during the manufacture of these products breaks the proteins and sugars down to simpler, more digestible and assimilable forms making these foods easier to digest than, for example, a more minimally processed soy flour. It is also possible and may be desirable to look at fermentable sugar extraction or modification or enzyme or acid hydrolysis during the processing of many ingredients and products.

The third issue with soy is the concentration of the naturally occurring soy phyto-estrogens or isoflavones (plant derived mimic female hormones) which may occur, particularly in the processing of soy isolates where the oil is extracted prior to precipitation of the protein and the skimming off of the carbohydrate/dietary fibre fraction. This produces a product with protein at 86%, moisture at 6% with low ash, fat, dietary fibre and carbohydrate levels where sometimes the isoflavones or phyto-estrogens are also extracted and sometimes not. Where soy isolates are being considered as the base for an infant formula it is extremely important to limit the intake of the phyto-estrogen or plant derived hormone to the absolute minimum. It is also important to note that dairy derived infant formulas also need to be highly modified to make them suitable for human babies.

On another occasion, I was contacted by a young man who was using soy isolate (a concentrated protein) as a body building aid and his protein intake was equivalent to four times the recommended daily protein intake. He was depositing unwanted fat on his thighs and buttocks, his beard growth was patchy and thin – he was demonstrating female characteristics due to the high levels of female type plant hormones he was ingesting - and he was also experiencing genital and irritable bowel type symptoms and from what he said, I also suspect kidney problems. It is my belief that he was consuming excessive levels of protein and using a form of soy isolate which had concentrated rather than removed the phyto-estrogens. There is much to recommend moderation, diversity and balance in all areas of life: an informed dietary restraint enabling the body to take what it wants from the diet and to reject or handle the rest. Over consumption of any particular food has always been problematic no matter how innocuous that food may seem. We and our health reflect our eating and lifestyle habits.

A fourth issue, is that the introduction of genetically modified organism (GMO) foods has brought further complications into this equation. Internationally, various crops including soy, cotton, canola and maize have been genetically engineered to resist the application of glysophate, a weed killer commonly known as “Roundup”, and to kill predatory insects through a built in pesticide in every plant. The writer believes there are serious moral, ethical, logic and safety issues involved in the use of such engineered foods, the benefits of which convey no positive health or nutritional value to the end consumer and which may yet prove detrimental to the consumers’ health and the environment.

For example, Bt pesticide, which is produced from the natural soil bacteria Bacillus thuringiensis, is a potent poison which ruptures the stomachs of and kills any insects which may attack any crop engineered or treated with it. As an integral part of the plant what do these toxins do to the human intestinal tract? In the USA, there are concerns about possible genetically modified gut bacteria as a result of eating such genetically modified foods: about new and difficult to identify and trace immune system health issues. Fortunately, Australia has been slower in its adoption of these genetically modified crops and no genetically modified soybeans have either been allowed into or grown in Australia. Our company only processes Australian grown soy beans, and other non-GMO gluten-free grains and legumes.

However, there are vast differences between the use of Bt spray and the far more concentrated systemic, engineered versions of this pesticide. The latter is an integral part of the plant and, unlike the spray, it cannot be washed off. In whatever form, Bt is a toxin and irritant with allergenic properties. Personally, I have serious reservations about these types of genetically engineered foods: the concept is obscene and I believe that such foods are inherently dangerous.

Genetically modified soy and corn each contain two new proteins with allergenic properties. genetically modified soy has been found to contain higher levels of trypsin inhibitor enzymes (which are a known soy allergen) than conventional soybeans. Skin prick tests, in the UK and USA, have also revealed a more than 50 % increase in allergic reactions to genetically modified soy compared to the traditional product.

There is an enormous, untested and long term potential for such genetically modified crops to create a host of poisoning, allergen, immune system, genetic aberration, genital deformity, fertility, genetically modified gut bacteria, digestive, eczema, inflammation and nutrition problems not to mention the possibility of new types of diseases. These genetically modified foods have been introduced by the same companies which developed DDT and Thalidomide. The fundamental question lingers: “have they got it right this time?” Unfortunately, it may take several generations for these associated problems to manifest themselves and to be identified, just as it did with DDT. Tracing the causes of and the treatment of these insidious problems may be difficult and expensive. In introducing these products we have ventured into the unknown, not only health-wise but nutritionally and legally.

Despite all the above negatives, I still believe that whole bean soy foods eaten sparingly have an important place in a well balanced diet. Many other staple foods including eggs, wheat, gluten, peanuts, dairy products are equally, if not more, problematic just as some fruits and vegetables can be. At the end of day it is usually a question of the balance, of the degree of tolerance for and degree of exposure to each of these foods that is critical and this may vary from individual to individual. It is also my belief that a modest level of exposure is better than total exclusion. For example, I have a mucus issue with milk fat if I over indulge in dairy products but consumed sparingly I can enjoy a thin sliver of cheese without problem.

Alongwith some of our favorite tips and links for preparing delicious gluten-free meals and treats, we've included a list of great gluten-free gift selections to help you get the most out of your gluten-free holiday season.

Once again, for those planning to prepare a gluten-free turkey dinner, here are some helpful tips to help it go smoothly:

• Start your gluten-free holiday dinner with a gluten-freeturkey. Not all brands of turkey are gluten-free. Some contain glutenin their additives—so, as with everything else, check the ingredientsand use our Open Original Shared Link or our Open Original Shared Link to help you shop.
• Demand gluten-free stuffing! Accept no substitute. Don’t risk putting non-gluten-free stuffing in your turkey. Instead, try Open Original Shared Link.
• Top that stuffing with simple, delicious gluten-free gravy from either a Open Original Shared Link, or a Open Original Shared Link. Remember, some bouillon cubes contain gluten, so be sure to use Open Original Shared Link. Tip: Thicken your homemade gravy with either corn starch or arrowroot flour.
• Prepare easy, tasty gluten-free side dishes by browsing Celiac.com's extensive listing of Open Original Shared Link, where you will find side dishes to impress even the snootiest gourmet.
• Nothing says holidays like the smell of baking. Load up on your Open Original Shared Link and other hard-to-find items like prepared Open Original Shared Link  Open Original Shared Link, brownies and baking mixesOpen Original Shared Link.

  Don't forget those gluten-free cookies and crackers. Nothing anchors out the holiday snack selection like a good cracker. Choosefrom a Open Original Shared Link for your family andguests. Pair them with your favorite wines, cheeses, and hors d'oeuvresfor a smashing holiday spread.Open Original Shared Link for Santa!Open Original Shared Link.Open Original Shared Link.Open Original Shared Link and other issues make great holiday gifts. This season, celiac.com suggests Elisabeth Hasselbeck's gluten-free Diet

  Remember, Open Original Shared Link and Open Original Shared Link make great for your gluten-free loved ones.

  Meantime, for those looking for more great gluten-free holiday food and meal suggestions, including celiac.com's Best Ever Gluten-free Stuffing, and Gluten-free Pumpkin Pie, click on the links.

  Celiac.com wishes you and your loved ones a safe, healthy, and happy gluten-free holiday season!
  

  ]]>1569Fri, 11 Dec 2009 15:00:00 +0000https://www.celiac.com/celiac-disease/mom-hits-home-run-with-gluten-free-bread-r1563/Celiac.com 12/10/2009 - A UK mother-turned-entrepreneur is about to notch the one-million loaf sales mark for the gluten-free bread she invented to help her sons’ food allergies.  Launched by Lucinda Bruce-Gardyne in April, Genius bread originally made its debut exclusively at British supermarket giant Tesco, which had just debuted its "Free From" line of products.

  Genius has expanded to other retailers, including Asda and Waitrose, and will make its way into Sainsbury’s in the new year.  Also available in Ireland, Genius is eyeing plans to launch in a number of overseas markets. The bread has "just taken off,” she said.

  Bruce-Gardyne, who previously worked at top London restaurant Bibendum and has written recipe books for food allergy sufferers, began developing her gluten-free bread three years ago, after finding existing products to be lacking in quality. “They were packed with stabilizers and preservatives,” she said.

  Working from her home kitchen in Edinburgh, Bruce-Gardyne spent several hours a day crafting her recipe for bread that looked and tasted like regular, commercial gluten-containing bread. Her effort was not without its challenges. She was "baking constantly," she says, and “I broke my oven twice because of overuse,” she said.

  She teamed up with United Central Bakeries, a specialty industrial baking company, at an early stage of development, and the company now bakes all the bread sold under the Genius brand. She also has the good fortune to have support from Sir Bill Gammell, the boss of Cairn Energy, who suffers from gluten intolerance. Their children attend the same school, and the two met after Sir Bill sampled the former chef’s bread. He has become keen to help commercialize it.

  To date, the business has attracted investment of between $1.6 million and $3.3m and sales are running at about $4 million.  Genius sells an average 45,000 loaves a week at about $4 each. Bruce-Gardyne is optimistic about the company's future. Genius is looking to diversify: “We have 18 new products coming out including pre-sliced bread, rolls and ciabatta” said Bruce-Gardyne. She is also working on a gluten-free croissant. “Nothing will be launched unless it tastes as good or better than the mainstream alternative."

  Will Genius bread make it to America? Stay tuned…

  More: Open Original Shared Link
  

  ]]>1563Thu, 10 Dec 2009 16:00:00 +0000https://www.celiac.com/celiac-disease/a-celiac039s-10-month-progress-report-r1556/Celiac.com 12/04/2009 - It’s been ten months since my diagnosis of celiac disease.  The foggy thinking is clearing.  I remember more and more details of the misery of living a life with gluten poisoning.  Can you imagine having leg cramps so severe that when they finally subsided your legs were bruised?  That was by far the worst pain I have ever experienced. And I would have those cramps four or five times a week. I was prescribed quinine and it didn’t help a bit, however I did not contract malaria.  People would say to me, “You just need to eat bananas.  You have a potassium deficiency.”  They didn’t know I ate bananas everyday to no avail.  The dull pains in my gut I had learned to ignore even though they were constant.  The leg cramps that would come in the middle of the night I could not ignore.

  Other symptoms included extreme fatigue, lightheadedness, vision loss, anemia, and heart papaltations. Throw in depression, panic attacks, and a feeling of impending doom. My blood work was always a frightening revelation.  It even scared my doctor and he’s not even me!  You know it’s bad when the doctor is reading your lab results and both of his eyebrows arch up to the middle of his forehead.  I also had vertigo and balance problems.  The weight loss was extreme.  Gluten had robbed me of nutrients necessary to live a normal life.  I was suffering from malnutrition, although I ate constantly.  Life wasn’t really working out like I had hoped.

  Can you blame me when I say I really hate gluten?  I hate gluten as much as I hate Adolph Hitler.  It is insidious. All of that pain was caused by that little protein called gluten.  It almost killed me.  I won’t ever consciously eat gluten again no matter what drugs are developed to neutralize it.  I feel like the classic jilted lover when it comes to gluten.  I wouldn’t take gluten back for any amount of money.  I would take the drugs only to insure myself in case of accidental ingestion when eating out at a restaurant or something to that effect.   When I am at the grocery store I will not even walk down the bread aisle.  I hate the smell of fresh bread.   I really believe everyone would be better off if they went gluten free.  However, it’s not going to happen. 

  The best thing about celiac disease is that once you eliminate gluten from your diet you start getting better in a hurry. What an exciting journey these past ten months have been!  I have gained 58 pounds.  I feel so strong that sometimes when I walk down the street I hope someone will take a swing at me! Unless he’s a professional fighter I don’t think he’ll knock me to the pavement on the first swing. Maybe I exaggerate a bit, but what I am trying to say is that I have a feeling of well-being that I never knew possible.  I feel so good I want to shout out to the neighborhood, “I FEEL GOOD!” (cue the James Brown song here) “I KNEW THAT I WOULD NOW!” 

  What is exciting is that some of the research is very optimistic.  I recommend reading some of Dr. Ron Hoggan’s articles on the cutting edge discoveries that could possibly neutralize the toxic effects of gluten in celiacs.  Larazotide Acetate could be the miracle drug celiacs and other autoimmune sufferers are hoping for. I think you will be hearing a lot more about breakthroughs in the near future.  I am so grateful for Dr. Hoggan, Scott Adams, Dr. Peter Green, the research team at the University of Maryland, Dr. Alessio Fasano and many others who are lending their brilliance to this puzzling malady.  I marvel at the depth of their knowledge and passion for discovery.  Unfortunately, I am not so gifted.  I can only thank them and reap the benefits of their work.

  Reading Recommendations:
  

  • If you aren’t already familiar with Open Original Shared Link you can subscribe through a link here at Celiac.com. You will find much information and you will be encouraged at the current work being done in this field. 
  • I highly recommend the following books for the newly diagnosed celiac:
    -Celiac Disease and Living Gluten-Free – Jules E. Dowler Shepard (a great personal story honestly told by a smart author, and lots of recipes)
    -Celiac Disease a Hidden Epidemic – Peter Green. M.D. and Rory Jones (lots of science and answers to your questions here)
    -The Gluten-Free Diet – A Gluten Free Survival Guide – Elisabeth Hasselbeck (another honest personal testimony and lots of graphs, charts, and recipes)
    All of the above have done much research and have exhaustive indexes. Well worth the investment.
    
  
  ]]>1556Fri, 04 Dec 2009 13:00:00 +0000https://www.celiac.com/celiac-disease/children-gluten-sensitivity-and-other-food-related-issues-r1537/ Celiac.com 11/03/2009 - Many infants, toddlers and young children are either born with or develop a variety of protein allergies with symptoms including anaphylaxis, intolerance or sensitivity to milk, egg, shellfish, crustacean, peanuts, nuts, sesame seeds, soy and gluten. These symptoms can manifest themselves in a variety of ways including coeliac (celiac) disease (gut damage), eczema, shock, migraines, headaches, crankiness, aggression, depression, listlessness, chronic fatigue, irritable bowel, wind, flatulence, diarrhea, bloating, fluid retention, poor growth patterns, feeling vaguely and sometimes seriously unwell: a general failure to thrive.Unfortunately, we do not understand all the reasons.

  There are nutritional, neurological and hormonal implications, which often go unconsidered, to many of the foods we eat. In some instances, with babies, the problems are transmitted via the mother’s breast milk and there are many instances of babies, for example plainly uncomfortable at being entirely covered in a painful rash due to their reactions to gluten and other foods in their mother’s diets. Such problems are more common where there is a history of asthma, colic, gluten sensitivity and other immune system issues in the family.

  In other instances, the problems may be caused by too early an introduction of solid foods and food types and in some cases by simple over exposure to particular food categories. These issues require awareness and careful observation on the part of the mother to try and relate/identify the problem foods to the problems in the child. In some instances, these problems may also overlap with lactose intolerance, fructose malabsorption and other fermentable sugar issues. There can also be cumulative issues with preservatives and the histamines in chocolate/cocoa and orange juice. Histamines and gluten, either singly or in combination, can both contribute to headache, migraine and behavioral problems.

  I recall one young mother, the wife of a colleague, who found that her normally happy and contented baby son reacted negatively to the coffee, cabbage, curry, chocolate, pasta and occasional alcohol in her diet – all foods his mother enjoyed, particularly the chocolate - by becoming red in the face, grizzly, plainly uncomfortable and often with diarrhea. Fortunately, she was perceptive enough to relate these incidents to her diet and chose to abstain from consuming the offending foods for the duration of the breast-feeding period.

  We had spent some time discussing and theorizing about the underlying reasons.With the coffee we suspected the caffeine. With the cabbage we suspected the nitrogenous (high protein) fertilizers used in growing the vegetable and the sugar content. With the pasta we suspected the gluten and possibly the fructose content of the garlic and perhaps the garlic as an irritant. The curry and chili plainly had an irritant effect and we suspected the histamines in the chocolate.

  Michael, now in his late teens, eats all these foods sparingly but is pleased to avoid them where possible. He thrives on plain, simple meals with careful food combinations. Although not a celiac he is not fond of bread, biscuits and cakes etc and appears to instinctively avoid them. He likes his fruit and, particularly, his vegetables. He prefers to avoid spicy foods, deep fried foods, meat pies and the like where he struggles to digest the combination of meat and pastry: of protein and carbohydrate. He also prefers to avoid consuming orange juice in combination with toast and breakfast cereals: the combination of acid and carbohydrate. He deliberately avoids cucumber, garlic, onion, soft drinks, coffee and alcohol due to sugar fermentation and acidity issues.

  An intelligent, fun loving and well adjusted young man who towers over both his parents and enjoys robust good health, he has learned, with his mother’s support, to select and develop a diet which suits him and upon which he obviously thrives. He is living proof of the adage “that one man’s meat is another man’s poison”: that a single diet does not suit everyone. A lesson many people have yet to learn.

  Recently, via my blogs and Youtube videos I have made “friends” with three young men in their early twenties: one of Hispanic background from California and two from Melbourne. All are coeliacs (celiacs) with diabetes and thyroid complications overlapping with their gluten induced gut damage. All I suspect the result of long term poor food choices exacerbated by having to fend for themselves in early adulthood without the parental support, awareness and perception enjoyed by Michael.

  Interestingly, one of these young men from Melbourne has come to the conclusion that, unless he urgently does something to help himself, he will seriously compromise both his longevity and quality of life if he continues going down the path he has pursued to date. He has come back several times for reassurance, to seek further information and to express his determination to reach 80 years of age in good health. He is slowly, painfully and somewhat belatedly trying to go down the path pursued by Michael and his mother since Michael was a baby: that of finding the diet that suits his individual nutritional and health needs. He is making solid progress with the occasional setback like a recent bout of Ataxia (poor co-ordination, a classic symptom of gluten sensitivity, in addition to his severe gut damage) resulting from the eating of potato chips deep fried in gluten contaminated oil: an all too frequent occurrence.

  In some instances the child may outgrow the problem but in many others the problems or tendencies may be lifelong, for example, in the case of coeliac disease and many forms of gluten sensitivity and as in the case of Michael, recounted above, where many of the food sensitivities of early childhood remain into adulthood. In some other health problems, the degree of exposure to a particular food or food additive may be the issue. A small amount is OK but too much may lead to eczema, mucus, arthritis or headache problems etc. The consumption of such a food needs to be managed carefully. It is my belief that it is often better to eat a small amount of as many foods as possible – to build some tolerance to them - rather than to go down the road of the total exclusion of every offending food. Often, this approach is not only socially desirable but sometimes a necessity where there is limited opportunity to organize the food. In these circumstances, it is important for the dietary challenged individual to be selective and to know and understand their dietary limits and the consequences of exceeding those limits.

  I am a firm believer in the old adage of moderation and diversity in the diet and of gentle shifts in dietary regimes if making any changes. It is possible, for example, and often desirable to reduce the intake of sugar, salt, coffee, milk etc., in the diet and these changes are all best done gradually over a few weeks to enable the body, digestive system and the taste buds to acclimatise to the new regime. The same applies to the introduction of a new food. A gradual introduction of any new food is often more beneficial and pleasant than a sudden change in diet as this allows the body to adjust without adverse and off-putting reactions.

  ]]>1537Tue, 03 Nov 2009 15:00:00 +0000https://www.celiac.com/celiac-disease/soup-kitchens-food-pantries-restricted-diets-r1531/ Celiac.com 10/16/2009 - With the downturn in our economy, it is certainly not news that many more Americans are needing to rely on food pantries and soup kitchens to feed themselves.  It is also not news that restricted diets, especially the gluten free diet, are very expensive.  If you need to eat "special" foods and cannot afford to pay for them, where do you turn?

  I have communicated with several people recently who are in this predicament.  One woman reported that, when she explained her food allergies and intolerance to her local food pantry, they replied, "If you are hungry enough, you'll eat it" - referring to foods that contain unsafe ingredients.  This made my stomach turn.  Although much work has been done in recent years to educate the public about food allergies, intolerance, and sensitivities, clearly there is still more to do.

  So what should someone in this situation do?  It got me thinking.  I called my state's Food Bank to ask if they get requests for special foods due to restricted diets.  I spoke with the food solicitor, who definitely understood the question I was posing.  She said that the agencies that disseminate the food have received requests to meet special diets due to food allergies and celiac disease, but the Food Bank has not been able to meet these requests.  They simply have not received donations of such foods.  I was given the impression that they won't be formally soliciting for allergen-friendly foods, but that they would alert their large network if these foods are donated.

  So who is likely to be the most sensitive to this need and knowledgeable about gluten and the top 8 food allergens?  US!  Those of us who have learned to live without common foods due to the risk of severe illness.  What can we do? 

  1. We can talk to our state and/or local food pantries and soup kitchens and see if they have received requests for gluten and/or allergen-free foods;
  2. We can make donations of special foods and request (even in writing) that these foods be reserved for those who need them;
  3. We can talk to our networks of those with dietary restrictions (local support groups, on line chat groups, family/friends, etc.) and ask them to do the same; 
  4. We can link our local support groups with a food pantry/soup kitchen so that if a request comes in, the support group can try to meet it; 
  5. If there are many request coming in, we can organize a "special" food drive or a fundraiser to purchase these foods, which has the added bonus of educating others and spreading awareness.

  Ideas for gluten free and/or allergen free items to donate include soups, cereals, flours, dried beans, dried lentils, pasta, quinoa, and millet.  Some have the capacity to accept frozen and fresh foods, too.

  The growing number of those of us with celiac disease alone has recently catapulted our community into the lime light.  Let's use those numbers to do some good!

  ]]>1531Fri, 16 Oct 2009 13:00:00 +0000https://www.celiac.com/celiac-disease/hope-for-a-recently-diagnosed-celiac-r1527/Celiac.com 10/12/2009 - It has been 9 months since my celiac diagnosis. It seems hard for me to believe that until January 23, 2009 I had never even heard of celiac disease. I have made up for lost time in the past few months. Hopefully, my story will help others who are newly diagnosed with celiac disease to hang on to hope and be encouraged that things are going to get better – much better as they move into a gluten free lifestyle. 

  In 1971 I had a panic attack. I have never been the same since that day. I won’t go into the details of it because most people know what a panic attack is like.  So I had a complete physical which included blood panels for the first time. When I got the results I found out I had an extremely elevated alkaline phosphatase level (400), normal is 80-130. My first thought was, “What the heck is alkaline phosphatase?”  The doctor was alarmed.  He ran more tests and suggested a liver biopsy.  He thought I might have liver cancer. No liver disease was found. From that panic attack until my celiac diagnosis I was always anxious about my liver. I also fought the fear of more panic attacks.   Nothing was ever conclusive. It just hung out there for over 35 years.  Every time I changed doctors and had my blood tested I went through the same series of tests and concerns. Nothing definitive was ever diagnosed.  Finally, my doctor told me my elevated counts were “normal for me.”

  Fast forward to the year 2003.  Without any reason I lost 20 lbs. over an 8 week period. I thought it was kind of cool to be “skinny”. I had always being kind of “doughy.” When I had a physical I found my alk-phos was now over 400.  I was anemic and more fatigued than ever.  My doctor wanted me to have a colonoscopy and an endoscopy. He said he was more worried about the anemia than the high alkaline phosphate. I had a colonoscopy, but refused the endoscopy on grounds that I couldn’t bear the thought of having a tube put down my esophagus.  What a mistake!  I could have gotten this diagnosis 6 years earlier.  The colonoscopy revealed no disease. When I did finally have an endoscopy in 2009 I was totally sedated and the test took about 4 minutes. It was the easiest test I’ve ever had.  My doctor thought I was depressed and put me on anti-depressants.  After adjusting to the meds I think I felt a little better, but deep down I knew something major was going on.  I figured if I were the President I would be sent to the Mayo Clinic for a couple of weeks and they would find out what was plaguing me. I thought my problem could be found only by the best doctors in the world and it would be at great expense – more than I could afford, so I decided to just live the best I could.

  Before my diagnosis I was not absorbing many, if any, nutrients.  At 6’2” I was a gaunt 156 lbs.  I had rapid heart beat, shortness of breath, fatigue, anemia, terrible muscle cramps all the intestinal issues known to man. Numerous blood counts were way off. The 98 lb. weakling at the beach could have kicked sand in my face all day long. My wife told me she couldn’t look at me anymore. It’s hard to look at someone who is suffering from serious malnutrition.  Everything I ate went right through me.  I didn’t think about it at the time, but as I reflect back on it I know I would have died by now if I hadn’t gotten off the gluten. Now I can see signs of celiac since childhood. I was delayed in reaching puberty until I was a junior in high school. I also had fears that we not reasonable.  There were some things going on neurologically for sure.

  
  I began feeling better within a few days after being diagnosed and going gluten free last January.  My weight began going up, and I just knew the anemia would go away and so would the high alk-phos.  6 weeks after diagnosis (March 2009) I went in for a blood test.  I was convinced the bloodwork would show normal levels in every category. I was proud and giddy.  I couldn’t wait to get the results.  Surprise, surprise!  The blood count for anemia had not changed and the alkaline phosphatase was over 600! What the heck was going on!  At least I felt better.

  I stumbled across a couple of articles on the internet about high alkaline phosphatase in celiacs and possible reasons.  Many celiacs have low calcium and vitamin D, and in some cases it causes high alk-phos.  Without getting too technical it seems that the alk-phos plays a role in bone growth and can go into overdrive when calcium and Vitamin D are extremely low. The solution for us may be in taking lots of calcium and Vitamin D supplements.  I know this is controversial, but I decided to go directly to the source of vitamin D (the Sun) for 15 minutes of sunlight each day.  I also have been taking a great gluten free calcium/magnesium supplement for the past 6 months.  Last week I went in for more bloodwork.  I know I continue to feel better all of the time, but after my last blood work I’m a little nervous about the actual results.  The nurse called me the day after the blood was drawn and told me my count for anemia is now in the low normal range and the alkaline phosphatase is 300!  It had dropped 300 points in 6 months.  I think I’m on to something.  I feel like I’m on the right track and will continue the supplements. I haven’t mentioned how low my cholesterol was in January.  The LDL was 33 and the HDL was 18.  The total cholesterol was 61. The doctor said it was the lowest cholesterol he had ever seen! Now it has gone up to a total of 140!  Something is definitely working!  I think just being gluten free for 9 months has been better than anything else, but I continue to be hopeful about the calcium and vitamin D supplements.

   I have gained 50 healthy lbs. since discovering I’m a full blown, card carrying celiac. I’m working out every other day with weights and I figure of the 50 extra lbs. about 25 of it is muscle and the rest is fat.  Oh well.  I do look better.  My wife can look at me again and I can even look at myself once in a while. I had no idea what it was like to feel normal.  Good things can be found through every struggle. Were it not for these trials I would not have found my faith and learned to trust God. I wouldn’t change that for anything. Everything happens for a reason. I do wonder what I may have done with my life had I been gluten free from birth.  I don’t spend too much time thinking about it, though, since I can do nothing to change it. I consider it miraculous that I could have been in education as a teacher and administrator for 32 years before I hit the wall in 2005.   I’m 60 years old now.  I really look forward to the future. I feel like my best years are ahead of me.

  ]]>1527Mon, 12 Oct 2009 17:00:00 +0000https://www.celiac.com/celiac-disease/hepatitis-b-vaccine-fails-in-half-of-all-celiac-patients-is-it-time-to-re-evaluate-current-immunization-strategies-r1505/Celiac.com 09/21/2009 - Failure of the hepatitis B vaccine in people with celiac disease is common. In fact, vaccine failure occurs in about 50% of all attempts to vaccinate people with celiac disease against hepatitis B. Research shows that age at celiac diagnosis and other factors can influence response rates.

  The August 12 issue of the medical journal Vaccine features a timely article on failure of the hepatitis B vaccine in people with celiac disease, which asks the very sensible question of whether it is time to reevaluate our current vaccine procedures.

  One of the most important signs of non-responsiveness to the hepatitis B vaccine is a genetic marker called human leukocyte antigen (HLA) phenotype DQ2. It's interesting that people with celiac disease often carry these same genetic markers, and that fact is at the center of one hypothesis about why celiac patients are less able to respond to the hepatitis B vaccine.

  A team of researchers recently set out to assess responsiveness rates to the hepatitis B vaccine among patients with celiac disease. The team was made up of S. Leonardi, M. Spina, L. Spicuzza, N. Rotolo, and M. La Rosa of the Broncho-Pneumology & Cystic Fibrosis Unit of the Department of Pediatrics at the University of Catania, in Catania, Italy.

  The team describes the results of a retrospective study on celiac patients vaccinated with three intramuscular injections of recombinant hepatitis B vaccine (Engerix in doses of 10mug at 3, 5 and 11 months of age.

  Their results showed that half of the celiac disease patients (50%) failed to respond to the vaccine course, and that those who did best were less than 18 months of age at the time of diagnosis for celiac disease; that group showed a significantly higher response rate to the vaccine.

  The study confirms that celiac patients have a far higher failure rate for hepatitis B vaccination than healthy control subjects. These results strengthen the call to re-evaluate current hepatitis B vaccine strategies for patients with celiac disease and to assess whether to recommend a course of re-vaccination.

  Source: Open Original Shared Link.

  ]]>1505Mon, 21 Sep 2009 13:30:00 +0000https://www.celiac.com/celiac-disease/celiac-disease-039pre-existing039-firm-cancels-health-insurance-for-girl-17-r1512/Celiac.com 09/18/2009 - Little did the parents of 17-year-old Brianna Rice realize that her February diagnosis for celiac disease would make her into a poster child for insurance reform. That's because when Brianna was first diagnosed, she was covered by health insurance. Thanks to some extra scrutiny by her insurance company, that is no longer the case.



  In the months following her diagnosis, Brianna's insurance company, American Community Mutual Insurance, took a microscope to her medical records and canceled her policy after it ruled that her parents had lied on her application last November.

 American Community not only canceled her policy, effective in May, but also denied coverage all the way back to November 1st, 2008, the day Brianna's coverage began.

  After Brianna was diagnosed with celiac disease in February, American Community initiated a review of her medical files and found instances of dizziness, elevated cholesterol levels, ongoing fatigue and a persistent cough. The family received a letter from American Community dated 12 May announcing their choice to rescind coverage.



  The letter stated that "coverage you applied for would not have been issued for Brianna if we had known this medical history at the time of application."

  

Dale Rice claims the firm cherry-picked the instances from different doctors' visits, and that Brianna had no ongoing health issues. He noted the dizziness to was due to a brief bout with dehydration, the fatigue a result of Brianna staying up late surfing online, and the elevated cholesterol due to an inaccurate test, and said her cough was short-lived.

  
The Rices insist they were honest and forthcoming on Brianna's application and say American Community is trying to back out of covering their daughter because of the February diagnosis.

American Community claims it would not have granted coverage based on Brianna's full medical record.

  
The Rices have lodged a complaint with the Illinois Department of Insurance. "We are livid," said Dale Rice, who, along with his wife, is out of work. "When a private insurer gets legitimate claims and seeks to find excuses not to pay them, they are clearly demonstrating morally and ethically bankrupt behavior."

  Insurance companies look for "anything that they could say 'you didn't tell us about,'" says Rice. "They hope that people just lay down and die and don't fight."

  The Rices are not alone. The director of the Illinois Department of Insurance, Michael McRaith, notes that his department has investigated about 400 rescission-related cases industry-wide since 2005. He calls the rate at which customers have complained about American Community 'alarming,' and calls American Community Mutual's rescission numbers 'cause for concern.' 



  The family's situation shows just how quickly health insurance problems can lead to financial ruin. With their daughter's unpaid medical bills exceeding $20,000 and mounting, the Rices fear losing their home. Brianna's mother, Pat Rice says she has liquidated some of her retirement account to pay bills.



  "The next step is really bankruptcy," her husband said.

  This story should strike a nerve with everyone who has celiac disease, or knows someone who does. I wonder how many people with celiac disease might risk cancellation of their insurance if they lost their jobs?  How many people who obtain insurance in good faith, and later find they have celiac disase, risk being with a 'pre-existing' condition label? It seems to me that a crafty insurance company could make an argument that nearly all celiac disease is 'pre-existing,' especially in older people.

  Let us know your thoughts by commenting below.

  Source: Open Original Shared Link

  ]]>1512Fri, 18 Sep 2009 12:00:00 +0000https://www.celiac.com/celiac-disease/the-coach039s-top-23-tips-for-eating-gluten-free-on-a-budget-r1474/
  1. Plan your meals:  It sounds simple, but it’s one that is often ignored.  Sit down before you do your weekly grocery run.  Know what you are going to make for each meal including snacks.  Find out what’s on sale before you make your weekly meal plan.  Stick to the list when you shop!
  2. Develop a file of dependable, go to gluten-free recipes.  My people report that, when they are short on time, that’s when they are likely to make extravagant purchases.  Take the thinking and guess work out of meal planning by looking through your file.  You can even write down the estimated cost of the meal.
  3. Eat foods that are naturally gluten free found at the regular grocery store.  Corn tortillas are cheap and have many uses, including for sandwich wraps.  Beans are a nutrient-rich starch substitute, as are lentils.
  4. Eat whole foods.  Whether you are gluten-free or not, it is healthier not to eat packaged, processed foods.  Just because a product is marked gluten free doesn’t mean it’s good for you.  Processed gluten-free products often lack nutrients.  Limit these to a couple times per week or less.
  5. Eat foods that are in season.  This means they had to travel less far to reach your grocery store, therefore they will be cheaper.
  6. Grow your own.  Learn how to can and/or jar the extras.  Live in a cool climate?  Some veggies can be started inside.
  7. Make a soup.  Soups are filling, and they are a great way to use up items in the fridge.
  8. Eat more vegetarian and vegan meals.  Eliminating meat from two dinners per week will save you quite a bit of money.
  9. Eat breakfast for dinner.  Make a frittata – cook 3 strips of bacon in a skillet.  Set aside and drain off most of the fat.  Add diced onions.  Cook for 5 minutes.  Add diced red pepper.  Cook another 5 minutes.  Add a package of thawed, drained frozen spinach.  Salt and pepper to taste.  Add bacon back in.  Beat 5 eggs and pour them all over the filling.  Top with cheese and bake at 350 for 8 – 12 minutes, or until the eggs are set.  Serves 2 – 3.
  10. Get creative.  For thickening sauces or gravy, substitute equal amounts of cornstarch for flour.  Mashed potato flakes also make a great, inexpensive thickener and binder in place of breadcrumbs. Xanthan gum is used in many gluten-free recipes to serve as the “glue” to hold the product together; use 2 tsp. unflavored gelatin to replace 1tsp. xanthum gum in some recipes such as cookies. Cornmeal or crushed potato chips can be substituted when a recipe calls for a coating or crunchy topping.
  11. Buy in bulk.  Once you found something you like, save big by buying in a large quantity.  Open Original Shared Link  has bulk discounts and many other ways to save you money. See their "Shop Smart & Save Money!" section on the top-right corner of their site.
      
  12. Create or join a bulk buying group.  Ask around at your local support group, or link up with local folks online.  If you like the same products buy a bulk order and split it.
  13. Cook ahead and freeze meals in individual or family-size servings.  If you are not someone that cooks and you are watching your budget, it makes sense to learn.
  14. Invest in a good vacuum food sealer.  This will help keep leftovers fresh for longer = less waste.
  15. Bake 1-2 times per month.  Things like Pizza crusts, bread, and pie crusts will freeze well if wrapped properly.
  16. Make gluten-free cookie dough from scratch and freeze in a roll.  Cut and bake what you need.  This will curb your desire to buy an expensive mix.
  17. Start a gluten-free dinner swap (like a holiday cookie swap).  Get a few families to cook up a large quantity of gluten-free meals and swap them for variety!
  18. Join a food co-op.  Co-ops are groups who use their purchasing power to get lower prices.
  19. Make your own blend of gluten-free flours ahead of time and store in an air tight container.
  20. To prevent contamination, purchase extra appliances (like a toaster) from Craig’s List or Goodwill.
  21. Track your purchases.  Seeing it in black and white can be very revealing.
  22. Consult with your employer’s human resources department.  Do they offer a flexible spending account (FSA) benefit?  These accounts hold your money pre-tax for medical purchases.  If so, will the FSA recognize gluten free food (and related shipping charges)?  Get it in writing!  If your employer doesn’t offer this benefit, ask them to look into it.  This will save you about 30%.
  23. If you are not using an FSA and you spend a lot of money on medical expenses, consult with your accountant.  Are a portion of your gluten-free food purchases tax deductible?  Shipping charges often can be reimbursed from this account, as can mileage to and from specialty stores.
  
  ]]>1474Tue, 14 Jul 2009 12:00:00 +0000https://www.celiac.com/celiac-disease/overwhelmed-by-the-gluten-free-lifestyle-consider-hiring-a-personal-coach-r1461/Celiac.com 06/24/2009 - If you are like the majority of people diagnosed with celiac disease, it probably took you many years of experiencing debilitating symptoms, talking to multiple doctors who gave you varied theories and diagnoses, thinking that you would never feel better…before you finally got it figured out.  Whether you had a positive experience with your health care professionals or not, hearing the diagnosis can lead to feeling lost and unsure of what to do next.  It can be quite overwhelming.  After all, food plays an important part in our culture – it’s how we share special moments together, celebrate, and nurture one another.  A big sense of loss can overcome someone when they hear that they can no longer eat wheat, barley, rye, and contaminated oats.  Some people say they go through the roller coaster of emotions similar to the grieving process.

  Can you make the necessary lifestyle adjustments to feel better and regain your health?  Absolutely!  Everyone’s pace is different and you need to give yourself time.  Is there a way that may help you to adjust a bit more quickly and with less frustration?  Yes:  consider hiring a personal coach that specializes in food challenges.

  What Is A Personal Coach?
  Coaching is a powerful, ongoing relationship which focuses on clients making important changes in their lives.  Coaching uses a process of inquiry and personal discovery to build a client’s level of awareness and responsibility, and provides the client with structure, support, and feedback.  The coaching process helps clients to both define and achieve personal and professional goals faster and with more ease than would be possible otherwise.   In coaching, the focus is on designing the future, not getting over the past.

  The field of coaching is booming and there are many coaching niche areas.  Business coaching for executives and teams has become quite popular.  Coaching children and teens to help them excel with academics is on the rise, as is parenting coaching.  Many small business owners higher coaches to help them increase revenue.

  Coaching usually occurs in the context of a long-term relationship, where the client’s goals, dreams, and vision drive the action.  The belief is that there are multiple paths to reach a goal, and that the client knows the way (though they might not realize it at the time).  The coach assists the client to become a “change master.”  To this end, coaching and adjustment to dietary changes go hand-in-hand.

  A Personal Coach Specializing In Dietary Restrictions Can Help You To:
  

  • Learn the gluten-free lifestyle - Where to buy gluten-free food, product reviews, how to prepare gluten-free recipes, where to eat out, how to become a skilled label reader, understanding the safe & unsafe ingredient lists, decrease cross-contamination risk, how to set up your kitchen, where to find out if your cosmetics, hair care products, and medications are safe.
  • Develop a support network - Website resources, how to get the most out of your primary care doctor, engaging a specialist such as a dietician or nutritionist.
  • Vary your diet, taking into consideration essential nutrients.
  • Adjust for the financial impact- Learn to live gluten-free on a budget.
  • Brush up on your advocacy and education skills – Practice explaining celiac to friends, relatives, and coworkers, advocate to you/your child’s school, learn how to eat out safely, manage your anxiety.
  • Monitor any ongoing symptoms and known associate health risks - Iron deficiency anemia, osteoporosis, fertility problems, leaky gut syndrome, candida, food sensitivities, other auto-immune disorders.
  • Keep up on the latest research and what it may mean for you – there are many exciting studies happening that may have an impact on how you take care of yourself.
  • Assist with other goals to help your life feel more balanced.
    
  How Does Coaching Work?
  Generally, most coaches have a structure that includes three to four sessions each month, with quick check-ins by phone and email in between.  Coaching sessions can be either one-on-one, in small groups, or a combination of both.  They can be in-person, via phone, or a combination of both throughout the month, which allows for financial and logistical flexibility.  In-person sessions can include shopping, practice with advocating, and cooking.

  A coach will encourage clients to set goals that they truly want, ask them to do more than they have done on their own, help them focus in order to produce results more quickly, and provide the tools, information, support, and structure to help them accomplish more.   It’s like having a personal trainer to assist you with making adjustments to improve your life.

  Who Should Consider Hiring A Coach?
  

  • If you are feeling unsure as to how to adjust your lifestyle around your food challenges.
  • If you are feeling limited by food allergies/intolerance/sensitivities.
  • If you are not sure where to go for information or are overwhelmed by all the information you are finding.
  • If you are restricting yourself from enjoying going out to restaurants, parties, etc.
  • If you are having difficulty sticking to the gluten-free diet.
  It’s important to find someone that you “click” with.  Most coachesoffer a free initial session to help get to know them, and to answerany questions you might have about the coaching process.
  ]]>1461Wed, 24 Jun 2009 17:00:00 +0000https://www.celiac.com/celiac-disease/creating-celiac-disease-awareness-in-africa-r1458/Celiac.com 06/17/2009 - He stands aloof and watches absent-mindedly as the other children queue up for the food. He remembers his mother’s stern warning and the hunger pangs worsen. He knows the even a morsel of the delicious mouth-watering cake will surely make him ill. Meet Mike, he was born with celiac disease.

  Mike’s parents are well-off and highly educated. According to his mother, Mrs. Kintu, shortly after his birth Mike started showing signs and his parents immediately took him to a European hospital for a check-up.  The doctors did an endoscopic exam and Mike was diagnosed with celiac disease. Mike had to stick to a gluten free diet for the rest of his life. Mike’s life was spared.

  Had Mike been born in a poor family, Mike would have eventually lost his life to celiac disease, just like the increasingly shocking numbers of African infants between the very minor age of 6 months and 4 years that die every year—particularly in the East-African region. The acute lack of awareness and subtle ignorance about the disease leads the devastated parents to think that sorcery or envious neighbors robbed them of their little ones.

  Mike is alive today and maintains a particularly sparse diet and survives on such food as vegetables, rice, beans, potatoes, small quantities of red meat, and fresh fruits. Granted, this may seem like a rather healthy and outright fulfilling diet for an adult, however, as fate would have it, Mike is also lactose-intolerant. Essentially, this means that, in lay-man’s language, Mike is allergic to milk in its natural form and all its by-products.

  Celiac disease is a permanent inflammatory disease of the small intestine triggered by the ingestion of gluten-containing cereals in genetically predisposed individuals. It is a lifelong autoimmune intestinal disorder. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. Celiac disease is unique in that a specific food component, gluten, has been identified as the trigger. Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with celiac disease. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains such as rye and barley must also be eliminated.

  Celiac disease was first described in the second century AD by Aretaeus of Cappadocia, a contemporary of the Roman physician Galen, who used the Greek word “koeliakos”, which means “suffering of the bowels”. However, only in 1888 AD did Samuel Gee of St. Bartholomew’s Hospital give the classical clinical description of celiac disease.

  The cause of celiac disease, also known as celiac sprue, or gluten sensitive enteropathy (GSE), is unknown. Celiac disease occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease.

  Celiac disease displays itself with the following symptoms:
  

  • Recurring bloating, gas, or abdominal pain
  • Chronic diarrhea or constipation or both
  • Bone or joint pain
  • Behavior changes/depression/irritability
  • Vitamin K Deficiency
  • Fatigue, weakness or lack of energy
  • Delayed growth or onset of puberty
  • Failure to thrive (in infants)
  • Missed menstrual periods
  • Infertility in male & female
  • Spontaneous miscarriages
  • Canker sores inside the mouth
  • Tooth discoloration or loss of enamel
    
  And many others (to see a complete list go to the Open Original Shared Link page).

  In any case, there is little or no research on this disease in East Africa. The principal ideals behind this article are the commencement of an awareness program, with particular emphasis on celiac disease and any other diseases that are not generally known about in the region. It is important that these are brought to the light and addressed duly by the concerned parties. There is also an urgent need to formally address the problem especially to those that can not possibly afford treatment and are generally ignorant. I am in the process of establishing an awareness campaign concurrently with a patients’ association for celiac disease in East Africa. The association is still in its infant stages and I am appealing for support and any form of assistance.  The name of my association is: Creating Celiac Disease Awareness in Africa.

  Author's Note: The names of the characters in this article have been changed for privacy reasons.
  

  ]]>1458Wed, 17 Jun 2009 13:30:00 +0000