A New Diet Villain

This article discusses the gluten syndrome as "celiac disease "only. See www.theglutensyndrome.net for the other side and supportive research. Some researchers insist the gluten syndrome can damage many many organs and tissues, and particularly the brain and nervous system. In some cases, the villi may be damaged and that subset is the one getting dx'd because the damage can be easily seen on endoscopy, or skin biopsy.

Cellular mimicry is considered often a culprit in the gluten syndrome according to early research. (Meaning the anitbodies the body makes to various glutenins may misrecognize and crosslink with many body tissues due to "look alike" protein sequences in both the gliadin/gluten, glutenins, or wheat and the tissue.) This idea of celiac disease as just one small subset of the gluten syndrome fits the gluten syndrome community like a glove. Unfortunately, many more peopel have been misled by focus on damaged villi only than those who are helped with a positive dx.

Celiac Disease and Hair Loss

01-07-09
Jamie: I was diagnosed with CD in 2000, also in my early 50???s. I am a female. My hair loss began long before I was diagnosed, so I cannot equate it with the gluten-free diet. I suggest, however, it may be somehow related to CD, but I haven???t put it together yet. None of my doctors have had any experience in that area. We suspect it, but we can???t prove it. You are the first one I know of with CD who has the same hair loss issue. I appreciate you speaking out. (I???ve interviewed many people during research on a book I wrote for our community on dealing with CD on a local level.)

I began losing all of the hair on my body when I was in my late 40???s. Dermatologists (and there were many) said it was normal hair loss and that my hair was just going through a cycle. None of the doctors took me seriously. They all said my hair would begin to grow back in a few months. They kept saying this for years. I kept losing my hair. (And the same was true of my maladies before I was diagnosed with CD. It took several years and several doctors before anyone really took my condition seriously.)

Back to the hair loss issue: Finally the dermatologists realized my hair loss was significant. Both sides of my head and forehead are bald. The hair follicles are dead and my hair will never grow back. I wear a wig. (I tried Rogaine for women, and it did nothing for me.)

I finally learned of a hair-loss specialist at Wake Forest University, a dermatologist named Amy McMichael. She is a caring, brilliant doctor. She runs a hair loss clinic on Mondays. 336-716-3926. Since I was an out-of-state patient, it took me a year to get in to see her. (I had two prior scalp biopsies that she reviewed before she treated me.) I have inflammation of the hair follicles, which kills the follicles; therefore the hair that has fallen out will not grow back.

McMichael has been treating me for almost two years now. She prescribed a combination of three treatments: scalp injections of a steroid to reduce inflammation, an oral medication, and a topical foam that I apply directly to the scalp. While this treatment has slowed down the loss, it has not stopped it. My remaining scalp hair continues to thin.

Perhaps if this treatment began at the first signs of hair loss, I might still have enough hair to actually have a hairstyle. No one can say.

I hope by sharing this information with you, it may be able to help. I???m grateful that you opened up a discussion on the hair loss issue. I wish you the best of luck in your search for answers. I, too, will keep up the quest.

Janet

Well done, Karen! We're making great progress in getting people diagnosed who have been sick for years and years. Intelligent articles like this one contribute greatly to our cause! Thank you!

I was diagnosed in August 2007 with Celiac Disease at the age of 51. Since I have changed my diet, I have had a significant hair loss - 80% on both the right and left side of my head and about 50% on the top and back. I have resorted to wearing hats all the time to cover the loss. I have been getting the run around from my gastroenterologist, my hematologist and my family doctor. They referred me to a dermatologist whose office says they don't believe he deals with hair loss. I don't know if this is a temporary or permanent condition or whether it is treatable in my case. After research on the internet, there is a condition known as alopeca areata, which is hair loss and they say it could be caused from the Celiac disease; however, I do not know whether I will ever get my hair back or where I can turn to for the correct diagnosis and treatment. Any ideas, please let me know.

One problem is that celiac disease is hard to diagnose and often is misdiagnosed. I have celiac and was tested for it after years of problems. It came back negative. Well, a couple of years later - I was retested and it came back positive. This happens to a lot of people - we cannot rely on bloodwork alone - it is often intricate and tricky. Not just for celiacs but all bloodwork and other tests. I have heard of countless numbers of people that were diagnosed with RA and had lyme disease - though the lyme disease did not show up until they had been tested for it numerous times.

Medical doctors are so specialized, that they rarely think of the body wholistically. This prevents a number of autoimmune illnesses (especially) from being diagnosed and treated. It also eliminates the possibilities that things such as diet can factor into genetic disorders, etc I have several auto-immune disorders. I am convinced that there is one underlying factor for these (so are some of the doctors I have seen - though they admittedly do not have the tools/knowledge to figure it out). After years and years of misdiagnoses for all of the problems that I have, seeing numerous doctors, etc. I have little faith in the medical community for knowing much of anything that is very complex. Sure - they know a good bit about the striaght to the point cycles of illnesses, especially the common ones they see all the time - obesity, heart disease, diabetes, etc. But I believe there is a huge lack of knowledge of extremely complex conditions - autism, auto-immune problems, ADHD all included. Doctors can help by first admitting that there is a lack instead of acting as if they know everything (ok, maybe this is unfair - not all doctors are like this - but far too many are).

Doctors need to listen to their clients who are listening to their own bodies. Most individuals have the best understanding of characteristics and changes in their own bodies. From listening to their clients, doctors will actually learn more about the complexities of illnesses. Through this, we can progress to a better understanding of individual bodies. But shutting out different ideas as ":wacky, pseudo science" gets us nowhere. Hand washing used to not be practiced among doctors and in the 1840s when Dr.Oliver Wendell Holmes first suggested it - he was oscracized as a "wacky pseudo scientist" too by the medical community. So dismissal of observations made by actual people who are referring to their own bodies and those of their children, is counter productive. We need open minds. All of us.

And btw, it is offensive to suggest that a gluten free diet is torture. Seriously? People are addicted to bad food - they are torturing themselves and disguising it as pleasurable. Tricky - but in our society it is true (becoming true in others too). But eating gluten free is no more torture than, oh i don't know, not smoking cigarettes. Again, open minds, please.

Here's a thought, maybe it's not the gluten that's making (Non-Celiac) people sick. Google "FATTY RUBBISH AND FILTH IN FLOUR" and check out the results.

I also love the "pseudo science" that lists concepts such as "grains are too modern to digest", or "starch" from grains is bad. Newsflash...Celiac is NOT simply a "reaction" to gluten like wheat is to wheat allergy. A wheat allergy is an immediate immune mediated response to wheat, like a peanut allergy. Celiac Disease is an autoimmune disease, it's completely different. It is a dysfunction in the intestines that lets in partially digested gluten proteins. THIS is the problem, the root cause. The root cause is the intestinal dysfunction, not the gluten itself per se. Celiac has become more common due to the shift in intestinal bacteria for various reasons. If Celiacs had normal intestines, they could likely eat gluten just fine like everyone else. As for the starch theory, I'm not denying that might have some merritt as triggers of certain autoimmune diseases, but not because of "grains". As anyone who has taken Nutrition 101 knows, virtually *everything* has starch except meat. This includes NON-grain foods like vegetables. People have taken some science based data and formed it into a giant pseudo science that has no logical reasoning other than fulfilling their own disillusions.

I think that for the *majority* of people with no diagnosed medical reason (I.e. Celiac or other autoimmune disease) to be on a gluten free diet and who feel better, the reason is due to psychological reasons (Placebo effect) and/or the fact that they are eating healthier (less mainstream processed foods). For example, Oprah raves about going gluten free, but supposedly her diet contained (regular) oats and Bocca Burgers, which are NOT gluten free. So obviously going gluten free in and of itself was not the solution to her problems, as she was NOT gluten free. You must be 100% gluten free for the diet to work. I cannot pick and choose what I want to eat depending on how strict I want to be. Many people are just generally sick from being overweight, living in a polluted society, not exercising, and eating processes garbage foods, period. Now everyone thinks they have Celiac. As a person who HAS been diagnosed by an MD with Celiac Disease (severe classical form), my concern is that people will not take me seriously when I say that I MUST be on a STRICT gluten free diet to stay alive. Those without Celiac can go gluten free if they somehow feel it helps them, but unless you have diagnosed antibodies or a medical reason, do not say that you are "Celiac" when you are not.

It's much more than hype. I no longer have the bilateral knee, hip and elbow pain that I have had for years (and I tested negative for celiac disease as well as other rheumatological diseases). For additional information, read Breaking the Vicious Cycle - Intestinal Health Through Diet (Elaine Gottshall BA, MSc) and see the Celiac Foundation's website regarding the symptoms of celiac disease (http://celiac.org/cd-symptoms.php). You'll likely be surprised.

I am so disappointed in Dr. Green for making this statement, how singleminded it is! He actually feels that celiac disease is the only indication for a gluten free diet? He says there is no documented scientic reason for others to be gluten free.

I feel there is a lot of proof out there. I am very disappointed in his response. He says, "It's not defined by any medical diagnosis"????????? I find that very discouraging for sll those who are gluten intolerant.

I seriously think it's time they redefine celiac disease. There are many, many people out here who are much sicker than some diagnosed with celiac, people who must be gluten free too. I honestly feel that which doctors define as celiac disease is the final states of the entire spectrum of celiac. Gluten intolerance being the beginning stages, yet all celiac.

Deb

I have met so many people as I travel, giving lectures, consulting and writing about the gluten-free diet, who have not tested positive for celiac disease, but who try the diet nonetheless, searching for a solution to their health problems, and who find remarkable results when removing gluten from their diets. Many, many people look back at their personal impetuses to eat gluten-free as a multi-tiered blessing. Even a slight emphasis on food quality, on deliberate food planning and preparation, and on creativity in the kitchen brings families together, introduces kids to what is becoming the lost art of cooking and baking from scratch and results, most of the time, in improved health, wellness and attitude. My just-released book, "The First Year: Celiac and Living Gluten-Free" highlights many such real-life stories, and the silver lining of what the uninitiated too often view as torture -- far from it!

I have a patent-pending all-purpose gluten-free flour that I and my customers will put up against wheat-based flour any day for taste, texture and recipe performance. We're simply not suffering ... especially compared to the years of ill health and true physical suffering many of us endured before our diagnoses. My first book, "Nearly Normal Cooking for Gluten-Free Eating" is further testament to the take-it-in-stride attitude most of us eating gluten-free live by. Hundreds of recipes, even family favorites handed down through generations, can be easily adapted by swapping out wheat-based flours with alternatives like my all-purpose flour. Hardly tortuous!

I invite Karen Springen and Dr. Peter Green to see for themselves. I'm happy to treat them each to a free bag of my flour to use to bake for family or friends (without telling them it's gluten-free) a birthday cake, delicious and moist breakfast muffins, tantalizing cookies, a loaf of cranberry bread, scones ... you name it. Then follow up the story with the "torture" they endured of fending off these folks wanting second helpings!

To your health,

Jules E. Dowler Shepard www.NearlyNormalCooking.com

Wow---this is an article that utterly insults the intelligence of people who have gluten intolerance and/or who are trying natural solutions to heal themselves from a variety of problems. Sure, gluten's not everyone's problem, but those of us who feel astoundingly better without gluten in our diets aren't fools or fad dieters. We're not aiming for an ascetic lifestyle; we're aiming for good health. And we now have tests like the ones at Enterolab (www.enterolab.com) to back up our suspicions when our doctors don't find the strict definition of celiac in the poor, basic testing methods.

Sally JPA
http://aprovechar.danandsally.com

Sally

Wow---this is an article that utterly insults the intelligence of people who have gluten intolerance and/or who are trying natural solutions to heal themselves from a variety of problems. Sure, gluten's not everyone's problem, but those of us who feel astoundingly better without gluten in our diets aren't fools or fad dieters. We're not aiming for an ascetic lifestyle; we're aiming for good health. And we now have tests like the ones at Enterolab (www.enterolab.com) to back up our suspicions when our doctors don't find the strict definition of celiac in the poor, basic testing methods.

Sally JPA
http://aprovechar.danandsally.com

Sally

As much as I respect Dr. Green and Dr. Fasano for all their research on celiac disease, they and other doctors need to start looking outside of the celiac box. There are so many people who have resolved major health complaints with a gluten-free diet. In many cases I believe that the standard tests for celiac are actually HURTING people because they are told that gluten is not their problem due to negative tests. It is so frustrating that doctors feel the diet is more torture than feeling sick and having no answers!
Alison
Sure Foods Living (www.surefoodsliving.com)

And as far as torture, that is absurd....torture is feeding your children twinkies, doritos and Mountain Dew until they are 20 lbs. or more overweight.

I have celiac and am finding the GF lifestyle to be a healthier one. Instead of wasting money on expensive speciality GF snacks and treats, I am more drawn to fresh fruits and vegetable, meats, etc. That is the way we were meant to eat. All of this processed stuff is no good. Wheat has only been in our diets for about 10,000 years, which isn't that long. Our DNA has hardly changed in the last 40,000 years...and look at what we put in our bodies today that wasn't part of diets for so long.

As a Celiac patient and Director of The Birmingham Celiac Disease Support Group, I say -- hooray for all of the people who are trying to improve their health by eating gluten free!
In the search for tasty gluten free food, I read a lot about the market trends of this industry. Guess what? Manufacturers looking for a niche market to tap into in this slow economy have realized the huge dollar potential of selling gluten free foods - and the results are that they are manufacturing a multitude of new products - where before we had a very limited gluten free selection. Almost daily now, I can go into a local market and find a new product that is gluten free. Supply and demand has greatly improved our choices with the manufacturers -- so eat all the gluten free food you can America! If you feel better for doing it - great! If not, I thank you anyway for helping those of us with Celiac disease finally get some good food! =) RK birminghamceliac.spaces.live.com

the end of this artivle says that people should not torture their children unnecessarily. This is unfair. Myself and my two children went off glutin this year to combat a miriad of problems. it has help and continues to help on a daily basis. I think many americans like the one who wrote this article, are lazy and do not think that spending a little extra time in your kitchen is fun. My two children get beautiful cakes, muffins, loaves, breads, etc.. all made with glutin free flours from scratch that ake only as much time as a regular recipe. sure we can not just go buy a box cake mix, but put your big parrent attitude on and get in your kitchen this weekend. Make up a batch of the muffin mix posted below and tell me it was not WAY better than most wheat flour muffins. Torture. Please. What a crock. My kids want for very little in the way of foods. all it takes is a small bit of time and a book by BETTY HAGMAN. or look up Karinas kitchen on the web under ' the gluten free goddess'. there are so many easy wonderful recepies out there that are under 30 min. Try one. even if you are a gluten eater, try this muffin recipe. you wont regret it.

Gluten Free Muffin Recipe From My Home

1/2 cup white rice flour (found in your local health food store)
1/2 cup brown rice flour (found in your local health food store)
1/2 cup corn starch
1/2 cup of your prefered butter/margarine
1 1/2 cups any kind of sugar
2 eggs
1 1/4 cup mashed banana, pumpkin, or sweet potato, etc... be creative
3/4 cup of your prefered milk/soy milk/ rice milk, etc...
2 Tsp Baking powder

This will make 12 muffins, or two loaves
spray pans or line with muffin cups and spray.
Bake at 400 for 25-30 min.
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VARIATIONS:
pumpkin chocolate chip
banana strawberry
pumpkin raisen carrot
BE CREATIVE. ALL IDEAS WILL WORK

I hope this helps. :)
thetyrafamily@gmail.com