Wendy Cohan, RN

I am now collecting information, research, articles, professional papers, and especially, patient stories, for a new project. Many people with food sensitivities and with celiac disease suffer from headaches, or have family members who do. I would love to hear from anyone with an interesting headache "case history" they're be willing to share confidentially, and from any practitioners who have learned something valuable from treating patients for headaches. What do think it's most important for the public to know about prevention, diagnosis, and treatment of headaches? Do you have any books, articles, professional papers, neurology conferences, or research facilities you'd recommend? Help me spread the word that there is help for chronic headaches.Please contact me via email: bewell@wellbladder.com or choosehealth@glutenfreechoice.comThanks for your help with this exciting new project!

Celiac.com 04/01/2011 - On March 10th, Chef Damian Cardone boasted on Facebook that he delights in feeding diners who specifically requested gluten-free meals a variety of gluten-filled dishes instead. He states on his Facebook page that he does not believe in gluten intolerance and that it’s “all in their disturbed little heads.” Clearly, chef Cardone did not attend a reputable institution of culinary arts, where classes in food allergies are now standard, and guest lecturers who are specialists in celiac disease and gluten intolerance are frequently invited to speak to students. Hopefully in the future, dining will be safer, gluten-free guests will be accommodated with creativity and courtesy, and uneducated, malicious food workers like Mr. Cardone will be unable to find employment in the food industry. I am also very surprised by Mr. Cardone’s naiveté, in assuming none of the diners who ate at his establishment would take legal action, and that there would be no repercussion. We are a litigious society, and I certainly hope that once word gets out in the gluten-free community, and make no mistake—it will—that legal action will be taken. I must also assume that Mr. Cardone is not aware of the current correctional institutional residence of a certain bread baker in North Carolina, who also knowingly sold gluten-containing items marketed as “gluten-free” to unsuspecting consumers. When these consumers became ill, they reported this to health authorities, who investigated. Their investigation quickly led to charges, and the conviction of the criminal involved. Most criminals are not very intelligent, and that’s why they are eventually caught, so I hope that Mr. Cardone keeps this in mind. If for no other reason than to save his own skin, this Colorado “Chef” should immediately give up any participation in the food preparation industry. His behavior is not intelligent, and he is not worthy of diners’ trust. This brings up another interesting line of thought regarding food service. Does Mr. Cardone break any other rules? Does he wash his hands after using the bathroom, blowing his nose, or touching raw meat? Does he believe in food-borne illnesses such as Salmonella, E. coli outbreaks, or Clostridium? Does he feed soft cheeses to pregnant women, who may suffer miscarriage due to Listeriosis? People can, and do, die from complications related to celiac disease, which now affects an estimated 1 in 100 people in the U.S. Non-celiac gluten intolerance may affect up to 12% of the population. That means that on a night when he plated 100 dinners, not uncommon for a mid-size restaurant, that 12 of those dinners had the potential to cause a negative reaction in the consumer. Mr. Cardone is apparently unaware that most reactions to gluten are not, in fact, gastrointestinal. Neurological reactions to gluten far outnumber gastrointestinal reactions. Neurological reactions can include: contributing to abnormal behaviors in children with Autism Spectrum Disorder, foggy or disturbed thinking, ataxia (disturbances in gait and coordination), tremors, exacerbating and triggering MS symptoms, muscle weakness, fatigue, depression, bipolar disorder, and even schizophrenia. I personally know and have helped to treat gluten-intolerant patients with all of these disorders. So, Mr. Cardone was partially right. For many patients, it is “all in their heads”, but that doesn’t mean that the symptoms aren’t real, and that they are not caused by ingesting gluten. In fact, Mr. Cardone’s disturbed behavior may be caused by consuming a diet filled with gluten. Perhaps he deserves our compassion, and he needs a medical checkup—Pronto! I am a foodie—a former prep, pantry, line-cook, and pastry chef. I have spent years working at many of the finer dining establishments in Boulder and Steamboat Springs, Colorado. Does Mr. Cardone think that I would willingly have given up making and eating my own gluten-filled homemade croissants, danish, challah, bagels, black forest cake, salmon-en-croute, beef wellington, spanakopita, and baklava if I didn’t have to? Celiac disease nearly killed me, and it caused me over a decade of severe pain, none of which was located in my gastro-intestinal tract. In my restaurant days, I had what I thought was “a cast-iron stomach”, never once experiencing a bout of diarrhea, bloating, indigestion, heartburn, or gas related to my dietary intake. But, eventually my health deteriorated, and eventually I was diagnosed with celiac disease, and all of my extra-gastrointestinal symptoms have subsided on a 100% gluten-free diet. It scares me to think that anyone would deliberately sabotage my health by substituting foods containing gluten for my specially requested gluten-free meal. I certainly hope there aren’t any copycats out there, who are stupid enough to engage in such risky and criminal behavior. Intentionally inflicting harm on anyone is a crime. When dining out, I call ahead, I speak politely to my waitperson and often ask them to communicate with the chef, I eat what I’m served without complaint, I give verbal thanks, and I tip extraordinarily well when my request for a safe, gluten-free meal is accommodated. But Mr. Cardone does not want guests like me in his restaurant. That is his loss, but it is not and never will be his right, to purposefully inflict pain and suffering on other human beings, people who are paying him money to serve them safe food. He is guilty of so many crimes it’s difficult to fathom, and I certainly hope that his days of freedom to continue poisoning diners will end soon. Luckily, the gluten-free community has many other options, and gluten-free diners will learn to avoid any establishment in which Mr. Cardone has any affiliation. Even though Mr. Cardone does not deserve any compassion, I would never wish for him, or anyone, to be diagnosed with celiac disease. It’s just too painful… Author's Note: Thank you to Chad Hines for spreading the word about this occurrence. Mr. Cardone live in Glenwood Springs, Colorado, where he works as a private chef, and also at the Italian restaurant "Florindo's" in Glenwood Springs, Colorado.

Celiac.com 02/21/2011 - After reading this new book by celiac nurse specialist Shelly Stuart, RN, what shines through above all is her true understanding of the complex nature of gluten-related illnesses, and her heartfelt compassion for patients who suffer from them. Her book is extremely well researched and documented. As a registered nurse and celiac herself, Ms. Stuart is able to use her strong patient teaching experience to clearly educate the reader about even very complicated subjects. She provides excellent explanations of leaky gut and the pathophysiology of celiac disease, and she is one of the first clinicians to write in-depth about non-celiac gluten intolerance. Importantly, she makes the point that immune mediated reactions can and do occur in non-celiac gluten intolerance, and backs this up by citing clinical evidence. Another important point made concerns pancreatic insufficiency, which can accompany celiac disease, but few know that this condition can persist even after diagnosis and transition to a gluten-free diet. Her discussion of the many, varied health disorders associated with celiac disease is very comprehensive. One of the most compelling aspects to “Gluten Toxicity” is the many important questions asked regarding the future of clinical research. Ms. Stuart makes it crystal clear that we need to know much more about the physical and mental health effects of gluten-related illness. This can only come about by increasing awareness both within the medical and research communities, and throughout each of our communities. We must all become advocates for greater testing and more accurate diagnosis. Shelly’s personal story, woven throughout the book, adds interest and a personal appeal, but never attempts to substitute anecdote for the hard science she relies on throughout the book. In fact, at first glance, the book seemed rather technical to me, and I thought it would be best-suited for clinicians, but after reading through to the end, I changed my mind. This is an excellent resource, offering really insightful and accurate explanations for anyone suffering from or attempting to treat gluten related illness. Some of you may be familiar with Cleo Libonati, RN, and the book “Recognizing Celiac Disease”, which was one of the first books to comprehensively make connections between a vast array of medical conditions and celiac disease, and back them up with clinical research citations. Shelly Stuart’s book goes quite a bit farther, to discuss the pathophysiology, symptoms, and diagnosis of a huge number of health conditions associated with celiac disease and also non-celiac gluten intolerance.

Celiac.com 02/09/2011 - A new group focused on supporting children with celiac disease and non-celiac gluten intolerance will hold its first meeting this month, on February 19th, in Portland, Oregon. G.I.F.T.S. - Gluten Intolerant Families Teamwork & Support (www.gifts-pdx.org) will meet every other month, on the third Saturday, from 2:00 to 4:00 p.m. in the home of group moderator Wendy Cohan, RN. Meeting in a home environment will reduce costs for membership, but also offer the opportunity to hold cooking demonstrations, cupcake decorating contests, and a summer cook-out, all of which are planned for 2011. Each meeting will feature a speaker, with subjects alternating between short health discussions and more kid-friendly holiday themes and cooking and baking with children. Our first speaker will be Krista Anderson-Ross, ND, who will give a short talk on the important topic of "Nutritional Deficits in Children with Celiac Disease", and how best to address them. We'll follow that up in April with an Easter-themed party with our guest, small business owner of "Fairy Cakes". Our group website: www.gifts-pdx.org is full of information on celiac and gluten related topics, and it includes a bulletin board for sharing tips, recipes, ideas for school lunches and snacks and other parent peer-support ideas. Bring your child, bring your whole family, and help make this group whatever you want it to be. We have a small advisory committee of health professionals and parents of children with celiac disease, but you are welcome to bring your ideas to the table, literally. We plan to hold social gatherings and restaurant outings in addition to regular meetings. For more information, see the website, or email us: info@gifts-pdx.org.

For the past two years I've been busy writing something called, "The Better Bladder Book - A Holistic Approach to Healing Interstitial Cystitis & Chronic Pelvic Pain". IT is now OUT, AVAILABLE, and thankfully, getting GREAT Reviews! This makes me very happy, not because I'll make a bundle (I won't), but because people who need help can now find it. IC is a terrible disease affecting up to 8 million people in the US alone, but millions more suffer from chronic prostatitis, over-active-bladder, pelvic floor dysfunction, and chronic pelvic pain. Finally, the connection between between gluten intolerance and chronic inflammation in the body, which often leads to these kinds of problems, has been docoumented in two separate studies. My book tells you WHY, HOW, and what you can do about it. You can find more information on the book at the following website: www.thebetterbladderbookinfo.com. The best in health, Wendy Cohan, RN

Hi Johnny, I know this is an old post and don't know if you're active on the forum, but I wanted to ask you whether your prostate problems have cleared up on the gluten-free diet/diagnosis with celiac disease. The reason is that I'm writing a book on urinary symptoms and possible relation to gluten intolerance, and looking for "success stories" of men with prostate, urinary, or erectile dysfunction issues that responded positively to a g.f. diet. I have lots of stories from women, but the book also has a section on men's health, and I'd like to include some personal accounts, names changed and privacy protected, of course. My private email is wendylcohan@yahoo.com. I'm a registered nurse and health writer, and take this subject very seriously and confidentially. Wendy Cohan, RN

Hi, I know this post is quite old, but wanted to mention the article I wrote a few months ago for celiac.com called "For Persistent Fatigue on a Gluten Free Diet, Consider Adrenal Fatigue". Also, you should know that guar gum is a good bulk forming laxative, although it's not a bowel stimulant. There's a difference. It definitely will promote regular bowel patterns. You can use guar gum in replacement of xanthan gum in all your baked goods. Guar gum is also cheaper. I also wrote an article that talks more about this, called "Xanthan Sensitivity May be Complicating Your Recovery" last year on celiac.com. I'm not writing to promote myself, but I honestly think these two articles have important information that may aid in your recovery. I've suffered from malabsorption, adrenal fatigue, and constipation, although for some reason I'm rarely anemic. It sounds like you're doing much better now. I hope you're able to keep up the running... Wendy Cohan, RN

Hi, I wrote an article on xanthan gum sensitivity for celiac.com last year. It's fairly common, and unfortnately mimics many of the gastrointestinal symptoms of celiac disease - i.e. gas, diarrhea, and bloating. I have a mild form of it, but some of my cooking class students have severe symptoms from even very minor amounts. It sounds like xanthan gum could be the culprit. Unfortunately, it is very common in gluten free products, and even non g.f. products like ice cream and creamy salad dressings. Guar gum is a very good and also less expensive substitute. Also be aware that whole foods recently recalled some of their gluten free products because they were tested and found to not be gluten free. I just saw this notice on a bulletin board in Boise Idaho, but it was a copy of a newspaper article, so you might be able to track it down. Good luck. Wendy Cohan, RN

Celiac.com 10/19/2009 - Gluten intolerance in the form of celiac disease (a hereditary autoimmune disorder) or non-celiac gluten sensitivity, may affect virtually any part of the body. In it’s involvement in multiple health disorders, gluten intolerance is a major driver of health care delivery and associated costs. While this may seem to be an outrageous claim to make, a discussion of the many ways in which gluten intolerance can negatively affect the body can illustrate this point. So, let’s work our way down from the top… Normal, healthy hair is usually glossy and thick. An autoimmune disorder known as alopecia areata results in abnormal loss of hair, either in patches, or total body hair-loss, and is one of many autoimmune disorders associated with celiac disease. Malabsorption severe enough to cause malnutrition can also result in thin, sparse, fragile hair. One of the outward signs of hypothyroidism is thinning hair and a loss of the outer third of the eyebrow; hypothyroidism is strongly associated with celiac disease. Now let’s look at the brain. There are, unfortunately, a large number of neurological disorders associated with gluten intolerance and celiac disease, including narcolepsy, depression, ADD/ADHD, Autism Spectrum Disorders, and schizophrenia. There are also movement and balance disorders associated with gluten intolerance, including ataxia - the inability to coordinate movements and balance (gluten ataxia, celiac ataxia, some cases of sporadic idiopathic ataxia). In some cases, when symptoms are severe, this disorder mimics other disorders such as Parkinson’s, Normal Pressure Hydrocephalus, and even Alzheimer’s disease. Headaches are a very common symptom of wheat allergy, as well as gluten intolerance. Migraines are common in those with celiac disease and gluten intolerance, as are sinus headaches. These symptoms often decline dramatically after excluding gluten grains from the diet. Sinus problems are common in those with celiac disease, gluten intolerance, and sensitivity to dairy products as well, and are often reversible by making dietary changes. Some people with celiac disease seem to have an altered, highly acute sense of smell – for unknown reasons. Night blindness associated with vitamin A deficiency is reversible when malabsorption is resolved and with the addition of a vitamin A supplement. Xeropthalmia, or chronic, often severe, dry eyes, is also related to severe vitamin A deficiency. It is rare in developed countries, but can be found in some people with malnutrition due to celiac disease. Apthous stomatitis is the name for the mouth ulcers associated with food allergies and intolerances, and is strongly associated with celiac disease and gluten intolerance. Even people who do not have gluten sensitivity get these once in a while but in those with gluten intolerance they are more frequent and especially long-lasting. Dental enamel defects are strongly associated with celiac disease. While they are usually identified in childhood, they can continue to cause problems throughout life, because they often lead to more frequent dental cavities. Halitosis, or bad breath, is a reflection of our internal environment and gastrointestinal health, and is often present in those with untreated celiac disease, gluten sensitivity, or gut dysbiosis – an upset in the balance of our internal microorganisms caused by poor diet and other factors. And, one of the autoimmune disorders strongly associated with celiac disease, and one of the most prevalent is Sjogren’s syndrome, which impairs the normal production of body fluids like tears, saliva, and vaginal secretions Following the path our food takes to the stomach, we can look for effects in the esophagus too. Eosinophilic esophagitis is a rarely encountered inflammation in the tissue of the esophagus which makes swallowing painful and difficult and can result in bleeding ulcerations. When doctors do see it, they sometimes test for celiac disease, since there is a strong correlation. Fortunately, in cases where this condition is caused by gluten intolerance, this painful chronic disorder clears up on a gluten free diet, too. Now we’re getting to the area most people associate with gluten intolerance – the gastro-intestinal system. In the past, celiac disease was usually described as causing gas, diarrhea, bloating, discomfort, cramping, and malabsorption. But as you’ve already seen above, there is a whole lot more to this disorder, and we’re only halfway to the toes. In addition to the above symptoms, the body’s reaction to gluten can cause inflammation anywhere, but a common location is in the illeo-cecal junction and the cecum. This can sometimes be confused with appendicitis, or ovarian pain or an ovarian cyst in women experiencing right-sided lower abdominal discomfort. Irritable bowel syndrome is suspected to affect at least 10-15% of adults (estimates vary). It is differentiated from IBD, or inflammatory bowel disorders (which include Crohn’s disease and ulcerative colitis). But, taken together, there are an awful lot of people out there with uncomfortable gut issues. One fact to consider is that many of those with celiac disease were previously, and wrongly, misdiagnosed with IBS before discovering they actually had celiac disease. Let’s take a look at the urological system. Even though gluten from the food we eat isn’t directly processed here, can it still be affected? The answer is yes. Kidney problems in association with celiac disease are well documented, including oxalate kidney stones. Bladder problems are increasingly shown to be responsive to a gluten-free diet. This is kind of my specialty and I would estimate that about a quarter of those with interstitial cystitis, and many people with recurrent urinary tract infections, have a sensitivity to gluten. Even prostate inflammation in some men can be triggered by eating gluten grains. Sitting just atop the kidneys are our adrenal glands. They have a difficult job, helping to direct our stress response system, our immune system, and our hormone output, and controlling inflammation in the body. Every time we experience a reaction to gluten, and our adrenals respond by sending out a surge of cortisol to help control inflammation, we are depleting our adrenal reserve. When this happens chronically, over time, our adrenal system cannot keep up and becomes fatigued. Symptoms of adrenal fatigue have far-reaching consequences throughout the body, including, of course, feeling fatigued and run down. But, adrenal fatigue can also affect our hormones, our blood sugar regulation, our mental acuity, our temperature regulation, and our ability to cope with food allergies, environmental allergies, and infections. Can the liver, the body’s largest internal organ, be affected by gluten intolerance too? One example is autoimmune hepatitis, in which can be untreated celiac disease can be found in large numbers. Early screening testing for celiac disease is now strongly recommended for patients diagnosed with autoimmune hepatitis. The pancreas, which is key in blood sugar regulation, is highly affected by gluten intolerance. Autoimmune disease triggers the development of Type I DM, and is becoming more closely associated with celiac disease. Testing for celiac disease is now becoming a routine part of examination when a child develops Type I DM, and now that physicians are looking for celiac disease in juvenile diabetes, they’re finding it with greater frequency. Blood sugar regulation problems are also associated with non-diabetes hypoglycemia in those affected by gluten intolerance and appear to resolve with a low-glycemic gluten free diet. So, we’ve covered most of the body’s major internal systems. Now, let’s look at the extremities, our upper and lower limbs, where gluten-associated problems are also found. Ehlers-Danlos Syndrome, a collagen disorder resulting in shoulder, elbow, and wrist joints that dislocate easily (and other characteristics) is a genetic disorder that may also be associated with celiac disease. I had mild symptoms of this disorder as a child, but never knew it had a name until I ran across it recently. With a child who has this disorder, a simple game of swinging a child by the arms, or swinging a child between two sets of their parent’s arms, can result in a trip to the emergency to put their joints back into proper alignment. This is not to say that a reaction to gluten causes this genetic disorder, but that if you have a personal or family history of Ehlers-Danlos Syndrome, and symptoms that may be related to celiac disease, you should consider being tested. Rheumatoid arthritis is another of the autoimmune disorders associated with celiac disease, and often affects the fingers with crippling joint deformation. Other joints in the body can also be affected. Scleroderma is another terribly disfiguring and sometimes fatal autoimmune disorder affecting every part of the body. It is often first identified in the extremities, particularly the fingers. In scleroderma, normal tissue loses it’s flexibility as the body’s autoimmune response produces inflammation and an overproduction of collagen. Collagen is the tough fibrous protein that helps form connective tissues including tendons, bones, and ligaments. Excess collagen is deposited in the skin and body organs, eventually causing loss of function. Scleroderma can be associated with celiac disease. The arms and legs are also common spots for yet another autoimmune disorder, psoriasis, to develop. Some patients with psoriasis are responsive to a gluten-free diet, but unfortunately, not everyone. Another skin condition that often shows up on the arms is dermatitis herpetiformis (DH), although this itchy blistering skin rash can occur in other places as well. Common sites are the backs of the elbows and the backs of the knees, or on the lower legs. Peripheral neuropathy is a disorder that results in numbness, tingling, and sometimes severe nerve pain in the extremities. Finger, hands, toes, feet, and lower legs may all be affected. Although usually associated with diabetes, peripheral neuropathy shows up fairly frequently in those with celiac disease, and is fortunately reversible on a gluten free diet supplemented by B-vitamins and some specific amino acids. Peripheral neuropathy is usually associated with older people, but some of the cases I’ve observed recently have been in very young children who had severe malabsorption issues. Fortunately they healed quickly and their neuropathy symptoms resolved completely. There a few last symptoms related to malabsorption that tend to show up in those with celiac disease or gluten intolerance. Easy bruising and bleeding, either due to a deficiency of Vitamin K, or to an autoimmune platelet disorder, is one. Rickets, or osteomalacia – a softening of the bones in the legs related to vitamin D deficiency – is another. As we said before, inflammation goes along with celiac disease and gluten intolerance, and a common site for inflammation is the lower extremities. Sometimes this can be profound, and trigger doctors to think heart disease, but it’s often unresponsive to Lasix and other diuretics. This condition, too, may also clear up on a gluten-free diet. As for me, I’ll be happy to be gluten-free, from head to toe.

Thanks for your reply, Kyle. I'm sorry for all you've been through. My mother had colon cancer after years of having diverticulitis. Hopefully you've avoided any cancer, which does unfortunately occur at a higher rate in celiacs. I'm glad your wife is a doctor, too. Wendy

Hi Danielle, I've heard of it - had a patient with it in the hospital (I'm a nurse). It took my persistence and multiple doctors and multiple imaging tests to find out what was wrong. The doctor demanded a psych. consult, as they often do when they don't know what's really wrong. I am so glad you were able to get a correct diagnosis. Wendy

Hi, I'm a nurse writing a book on the bladder and other uninary health areas. In my research I ran across a link between chronic prostatitis and gluten intolerance or celiac disease. I've also written extensively in the past on a link between gluten intolerance/celiac disease and bladder symptoms, and am including this informaiton in my book. Adding in some anecdotal evidence on another link, to chronic prostatitis, would strengthen this correlation. I've seen a post or two on the forum about chronic prostatitis, but what I'm really looking for is a first hand story or two or a hundred telling me that going gluten free helped your chronic prostatitis or other urinary problem, in men. I have lots of stories for the book regarding women. Can you let me know what your experience has been? All confidentiality would be protected. I may not even "tell" your story, but just include it in the category of "anecdotal evidence" of a link. Thanks a bunch in advance for anyone willing to tell me their story. It will have the potential to help a lot of other men. Wendy Cohan, RN