Celiac.com 08/03/2019 (originally published 07/12/2010) - My daughter’s voice revealed her repugnance as she pointed to my legs.  “Mom, you have those ugly, red spots on your legs again! What are those things? Why do you get them?”

I sighed and looked down.  Once again, the familiar vacation pattern was emerging.  After two or three days of hot weather and lots of walking on hard surfaces, little pinhead sized red spots would start appearing on my lower legs.  The spots would increase in number and in size until my legs seemed to be a giant blood blister.  I had no answer to my daughter’s questions.  

After the previous vacation, I had taken a picture of my legs and later shown it to my doctor, but he only shrugged his shoulders, stating that my guess was as good as his.  Actually, I did have a theory.  Most vacations also caused pain throughout my entire body.  Many nights I lay awake with tears running down my face after everyone else was asleep.  Just turning in bed made me groan.  The only place that didn’t hurt was a nine-inch square area on my chest.  However, I desperately tried to hide my health woes from my family.  I took 10-12 aspirins each day to mask the pain.  My theory for the purple dots was that I had thinned my blood so much from taking so much aspirin that blood was seeping from my capillaries.

Even after I was diagnosed with celiac disease eight years ago, my theory did not change.  After embracing a gluten-free lifestyle, the ugly spots stopped marring my legs while on vacation.  At that time I rationalized that my prior vacation diet consisting primarily of gluten-rich food such as sandwiches, pizza, cakes and cookies had caused the intense pain, so my self-diagnosis of aspirin poisoning still seemed appropriate.

Recently, however, my now-grown daughter and I sat in front of my computer, doing a Google search to try to determine what was causing some bumps on her scalp.  As we clicked on one of the links, a photo popped up, and both of us instantly pointed at the screen.  I gasped, “That’s just what I used to have!” at the same time that she was saying, “Mom, I remember when your legs looked like that!”  We had accidentally located a site describing purpura.

As it turns out, if I had ever gone to a doctor when the red bumps were obviously covering my legs, he would probably have diagnosed me with ITP, Idiopathic Thrombocytopenic Purpura, which is characterized by a low platelet count, normally functioning bone marrow, and the absence of a diagnosis of a disorder that would cause loss of platelets.  If they had known that I had celiac disease, the diagnosis would have been Secondary TTP, Thrombotic Thrombocytopenic Purpura, because there is evidence that gluten is a trigger for this condition.  (Refer to Dr. Ron Hoggan’s article, Thrombocytopenic Purpura and Celiac Disease, published on 7-26-1996.)

The really surprising result of my internet search was the implication that the intense pain I felt during vacations might not have been solely the systemic result of ingesting gluten.  Purpura can also cause bleeding in the internal organs.  I was aware that there were times when I would have blood in my feces, but I had no way of knowing if other organs or muscles were affected.  If the high levels of gluten were indeed causing internal bleeding, I am extremely fortunate that I never experienced a hospitalization as this condition can be acute or even fatal.

Perhaps you are wondering why I did not seek immediate medical attention when my legs were covered with horrible red bumps, there was blood in my stools, and I was suffering constant pain.  The answer is simple:  I did not trust doctors to be able to find out what was wrong with me.  A lifetime of bad experiences had taught me to go to the doctor only for “normal” ailments such as respiratory infections or a sprained ankle, but to leave out any mention of the myriad of “invisible” ailments that I had experienced since childhood.  Only when a particular problem was causing a major life-style interruption did I dare to broach the subject with a physician, and then only in a limited manner.  Fortunately for me, I had developed a very high pain tolerance and a very positive attitude toward enjoying life in spite of any physical limitations, so I was able to get by pretty well until a perfect storm of circumstances brought me down.

Unlike many people with celiac disease, symptoms during my early years were primarily systemic rather than gastrointestinal.  It is only now, with hindsight perspective that these seemingly unrelated symptoms connect to indicate gluten sensitivity.  The earliest reaction I can recall occurred around age three when I would often think that cows or soldiers would be coming across the field to storm my grandparent’s farmhouse.  At the time, my family thought I was having nightmares because my parents had recently divorced, and I lived half of each week at the farm with my father and the other half of the week in town with my mother’s family.  Now I realize that the high-gluten diet at the farm was causing heart palpitations and pounding in my ears, a real sound that only a child would interpret as the sound of invaders.  By elementary school, I was often teased for preferring to read rather than run and play with other children.  Now I know that the reason I would become so fatigued and nauseated from the heat was a direct result of gluten poisoning.

Being heat intolerant was actually a major problem until my diagnosis.  My parents often thought I was just being lazy and that I complained about feeling badly to get out of doing outside chores.  At summer camps, I became very creative at avoiding participation in any activity done in full sunlight.  My friends loved to lie in the sun, but I wondered why they thought it was so pleasant.  It never occurred to me that the pounding headache, the nausea, and the feeling that my heart was going to explode was something that only I experienced.  After I married a very adventurous man, summers included active vacations.  It usually took at least three months to recover fully from just one week’s holiday.  

My gastric symptoms worsened in my teens, and flared up seriously from time to time.  At least once a week I would spend an hour in the bathroom, moaning with the pain of what I now know is a spastic colon.  Those episodes would leave me so weak that I would have to go to bed afterwards.  Finally, I started to realize that something was very wrong with me and began to voice my complaints.  At seventeen, I was hospitalized for three days for extensive and often painful testing.  The doctor did note that I had the colon of a sixty year old, but still concluded that there was no reason to be concerned because I was just a typical, emotional teenager of the 70’s whose angst was causing a few stomach problems.  

It is difficult to describe what that diagnosis did to me.  The pains I felt were invisible to everyone else, and apparently even to the medical testing procedures.  My doctor and parents thought that I was inventing all this just to get attention.  The fear of being labeled a hypochondriac was greater than my fear of the pain.  It seemed that my only recourse was to just learn to live with it, whatever “it” was.

Over the next twenty years, I experienced a wide variety of symptoms but I never considered that they could somehow be connected.  (For a full list of symptoms, see the box below.)  Applying some strategies from Psychology classes and church led to the development of some great coping skills.  By focusing on the needs of my husband and children, I could turn down the volume of my body’s cries for attention.  By emphasizing the joys of life, I could overlook the minor pains.  By visualizing the acute pain as riding a white-water river, I could choose to relax and let the pain “float” me to the next place of calm water.  Using a daily session of Bible reading and writing in my prayer journal was my therapy to overcome depression.  The natural vitality of youth carried me through those years in what I optimistically considered to be reasonably good health.

However, early-onset menopause started in my late thirties.  With it began a rapid downward spiral in my health.  Those natural hormonal imbalances seemed to corrode the fragile façade that covered my infirmities.  At the same time, the pace of our lives accelerated from busy to chaotic as we entered into our teenagers’ world of sports, school clubs, and endless other social, community and church activities.  During those years my energy was sapped with what I sardonically referred to as “terminal fatigue.”  The straw that broke the camel’s back was our decision to purchase a custom built house.  Along with the understandable stress of learning the ABC’s of home construction while orchestrating the lives of busy teenagers, I also chose to faux finish most of the rooms in our new house.  During the cold months of January and February in 2002, I spent at least 30 hours each week mixing and applying paint in unventilated rooms.  The central heat was not yet operational, so the professional painters used a smelly, forced- air, propane heater.  Because I was so pressed for time, most of our meals were sandwiches from fast food restaurants.  As soon as the painting was complete, we made the exhausting move into our new home in mid-March.

It immediately became apparent that my health problems were reaching a critical level.  Even after the unpacking was completed, each day I still had to lie down every few hours.  Continuing to substitute teach two or three times a week,  I was so completely drained at the end of school that I had to lie down for the rest of the day.  By now I was an expert at hiding my illness from most people by clever tricks of body language.  If my legs felt too leaden to keep up the pace a friend was walking, I could stop to point out some “important” thing that caught my eye so I could rest a bit.  I practiced lifting my sagging shoulders and smiling a hello when people came my way.  Those tricks could not deceive my family, though.  My mother and husband both feared I was dying.

One particularly bad day, I dragged myself out to my nurse practitioner, who was also a family friend, and said, “Jack, check to see if this is diabetes.  If it is not, don’t worry about it; no one will ever figure out what this is.”  That statement was like waving a red flag in front of a bull, and Jack replied, “No, Jane.  We WILL find out what is going on here!”  

The initial series of tests seemed to indicate that I had Lupus, even though the lab tests had borderline values.  I have since learned that many of the symptoms of systemic celiac disease are very similar to SLE.

Then we discovered that my thyroid was under performing even though the lab tests were within normal limits.  According to Broda O.  Barnes, MD, PhD, lab tests aren’t sensitive enough to determine low-thyroid function when the hypothyroidism is secondary to a primary illness.  A reliable do-it-yourself test is the Barnes Basal Temperature Test.  Place a thermometer on the bedside table and immediately upon wakening take your armpit temperature.  It is very important to not sit up or move much.  If the temperature is 97.8 to 98.2 F, the thyroid is functioning normally.  Even a fraction of a degree lower indicates low thyroid function.  I took my temperature two days in a row and it averaged 95.3 F!  Within five days of starting thyroid meds, I felt significantly less tired.

The next stop was a visit to a neurologist to evaluate leadenness in my legs that made walking difficult as well as the intermittent numbness and tingling in my feet and hands and sometimes across my right cheek.  As soon as I described my symptoms, the neurologist shook his head and scowled, “That cannot happen.  At whatever place on the spinal column that there is a problem, the numbness would be consistent below that point.  There cannot be numbness in random places like that.”

Those words were like a slap across my face!  Again, a doctor would rather believe that I made up an impossible set of symptoms rather than look for a way to solve the mystery.  In typical fashion, I didn’t argue with him.  I just shut down.  He completed his exam and his tests but I already knew it was an exercise in futility.  Now, after years of being on a gluten free diet, I realize that the neuropathy is somehow a result of the spastic colon.  After a lifetime of suppressing the discomfort, I literally no longer feel abdominal pain when the colon is in spasms until it reaches a high enough level that I will suddenly collapse from the shooting pain.  The intensity of the spasms is in direct proportion to the area of the neuropathy; toes and finger involvement indicate mild spasms whereas numbness across the cheek, below the elbow and below the knees means things are getting bad.  The size of my bowel movements always confirms the neuropathy diagnosis of the intensity of the spasms.  [Note:  Nutrasweet Artificial Sweetener also triggers the neuropathy.]

The next specialist was a gastroenterologist who diagnosed the celiac disease.  I had presented to him only the symptoms of blood in my feces and dumping diarrhea, fearing that disclosing any more symptoms would label me again as a hypochondriac.  When the doctor was explaining the results of my colonoscopy, he commented that I had an extremely spastic colon.  Jerking my head around, I snapped, “How did you know?  I did not tell you that!”   He looked very confused that I would not have told him about such an important symptom, but even then I could not bring myself to trust him with more information.  This month, because I am now virtually symptom free, I finally found the courage to present him the list of previous symptoms with an explanation for why I had withheld important diagnostic facts.  He looked shocked at the sheer number of symptoms, which made me glad I could report that I was now substantially symptom free.

I take some comfort from knowing that my experience has been instructive to my doctors and will perhaps make the journey easier for others who have undiagnosed celiac disease.  The life-style change was difficult, and for a year I grieved the loss of my favorite foods as if a close friend had died.  But the results are astounding!  Now that I have been gluten free for several years, my children marvel at the change in my energy level.  Last summer, our family had a July vacation to Texas during a heat wave where the temperature soared to 112 degrees one day, yet I never missed one activity and felt well at the end of the trip.  While we were playing miniature golf one afternoon, I looked up to see my daughters smiling broadly at me, and they exclaimed, “Wow, Mom!  Look at you!”  

Although I am now 55-years-old, I look and feel younger than I did twenty years ago.  Because of the benefits of a gluten-free diet, along with the discovery of Z-coil shoes for problems with my feet, I am like a new woman!  Out of my 70+ previous ailments, I now only have the allergies and those mild, easily manageable symptoms related to the hiatal hernia, tinnitus, and Sjogren-like dryness (these last three are linked to celiac disease and might not be a problem if I had been diagnosed earlier).   

Recently, I was carrying a 19-inch TV down the stairs, and my younger daughter rushed to help me with the load.  When I cheerfully declined her help, she stepped back and declared, “Who are you, and what have you done with my Mom?”  May all who embrace the gluten-free life-style have such spectacular results!

Summary of All Previous Health Problems:

• Abdominal Pain
• Acid Reflux
• Allergies (seasonal, mold, chemicals)
• Alpha-1, Anti-Trypsin Deficiency
• Anemia
• Arthritis/Joint Pain
• Bladder/Kidneys Infections and Pain
• Blood in Feces
• Bloating
• Brittle Nails
• Colon Polyps
• Cystocele
• Depression 
• Diarrhea/Constipation Cycles
• Dry Eyes
• Dry Mouth
• Dry Nasal Passages
• Dry Vagina
• Dumping Diarrhea
• Ectopic Pregnancies (2)
• Extreme fatigue
• Eye Pain, right side with migraines 
• Eye Sensitivity to Make-up and Lotions
• Face Aches
• Facial Rash (similar to lupus rash)
• Feet/Ankle Swelling
• Fibrocystic Breasts
• Foot Pain
• Frequent Headaches
• Frozen Shoulder
• General Malaise
• Generalized Weakness
• Gout
• Hair Loss
• Heart Palpitations
• Heat intoleranc
• Hiatal Hernia
• Hoarseness
• Hypoglycemia 
• Hypothyroidism
• Hysterectomy
• Infertility Problems
• Insomnia
• Irritable Bowel Syndrome/Spastic Colon
• Lack of Concentration
• Legs Buckle
• Low Grade Fever
• Lung Congestion
• Memory Impairment
• Mental Confusion
• Mid-Back Pain
• Migraines, Primarily Right Side
• Mouth Ulcers
• Muscle Weakness
• Muscles Spasms in Back
• Nasal Congestion
• Nausea in Varying Degrees
• Neck Stiffness
• Neuropathy in Feet and Hands
• Night Sweats (non-menopause)
• Numbness and Tingling
• Occasional Asthma
• Plantar Fasciitis
• Puffiness/Fluid Retention
• Purpura
• Rectocele
• Right Cheek Numbness and Tingling
• Shortness of Breath
• Sore Tongue
• Stomach Pain
• Stomach Polyps
• Tinnitus
• TMJ – Temporomandibular Joint Pain
• Vaginal Discharges/Yeast Infections
• Various Localized Pains
• Weight Gain
• White Coating on Tongue

Celiac.com 06/29/2019 (originally published 07/12/2010) - We all grew up hearing the saying, “An apple a day keeps the doctor away.”  As it turns out, this saying is based in truth.  Eating more fruit really does make us healthier.

Fresh fruits provide many benefits.  Most fruits act as a natural laxative because they contain roughage and fiber.  They are bursting with vitamins and minerals and are very low in sodium.  The various bright colors of fruits are pigments called phytonutrients, which are extremely potent antioxidants and help protect your body against cancer-causing free radicals.  Some fruits (tart cherries and apples especially) help reduce inflammation and lower cholesterol and triglyceride levels.

The USDA recommends four to five servings of fruit per day.  Whew!  That’s a lot.  Few of us manage to consume that much.  There are supplements on the market, but you don’t get the same nutritional value as when you eat the fruit itself.  And natural fruit is a great source of energy to keep you going throughout the day.

To gain the most benefit from eating fruit, it’s best to eat a wide variety.  Now, you can find almost any fruit you like all year long… But is it wise to buy that fruit?  

In America, strawberries ripen in the spring, watermelons in late summer.  But the grocery store shelves have these items throughout the year because they are imported.  More and more, food experts are advising us not to buy imported fruits and vegetables.  Many of the countries where we get our fruits have very lax rules and regulations governing food production.  Only a minuscule percentage of the imported shipments are inspected.  Mike Doyle, director of The University of Georgia’s Center for Food Safety says, “The FDA doesn’t have enough resources or control over this situation presently.”

In an average month, the FDA detains about 850 shipments of imported foods for issues ranging from filth, to unsafe food coloring, to contamination with pesticides, to salmonella.  And that’s with just 1.3% of the imports inspected.  As for the other 98.7%, it’s simply not inspected, much less detained, and goes directly into our food supply.  

A safer approach is to buy U.S.  grown fruits when they are in season… and something good is always in season.  Instead of getting the exotic fruits (lychee and star fruit come from S.E.  Asia), find new ways to incorporate the more familiar, home-grown fruits into your diet.

For breakfast, your options are many.  If you like pancakes, add mashed banana, shredded apples, or pureed pumpkin (which is technically a vegetable) to the batter.  Do you have muffins or sweet breads with your eggs?  When making the batter, stir in shredded or mashed fruits, raisins, dried cranberries, or even crushed pineapple.  Make a smoothie with blueberries, strawberries, bananas and milk.  Broil peach halves with a little cinnamon to have with breakfast.  Whether you’re having a cold cereal or a bowl of hot cereal, add berries or sliced bananas.

At lunch time, add pineapple tidbits to chicken salad or fold fruit into cottage cheese or yogurt.  If you’re making a PB&J sandwich, add sliced bananas.  Shred an apple into your coleslaw.  

Mid-afternoon, when you crave something to cut the hunger pangs, grab a piece of fresh fruit.  Other choices include making a trail mix of mixed nuts and mixed dried fruits, eating a small container of applesauce, or dipping fresh fruit slices into a cream cheese dip or peanut butter.

When you make the salad for dinner, use spring mix field greens and add sliced kiwi, berries, diced peaches or nectarines, mandarin oranges, melon balls, or whatever fruits are in season.  Stuff pork tenderloin with dried apricots and prunes.  Add grapes or orange slices to your baked chicken.  Bake fish with lemon slices and serve topped with a fruit salsa.  Top servings of ham with grilled pineapple slices.  Add apples or dried cranberries to your yam dishes.  Make pear sauce (same as applesauce but using pears instead of apples) as a side dish.

Finally, don’t forget to incorporate fruit when it’s time for dessert.  If you’re baking cookies, fold in raisins, dried cranberries, or chopped dates and substitute applesauce for some of the butter called for in the recipe, or make banana cookies.  Add thinly sliced peaches, apples, bananas, or blueberries or raisins to bread pudding.  Stuff apples with a little brown sugar, raisins, and a drizzle of honey and bake.  Kids love baked bananas—slice the banana in half, spread with peanut butter, honey and a sprinkling of chocolate chips; wrap in foil and bake.  Top ice cream or a slice of gluten-free cake with strawberries or a fresh cherry topping.  In the summer, make a fresh fruit bowl of assorted melons; add toasted coconut and toss with apricot nectar.  Or put fresh fruit in a blender, add a little fruit juice, then freeze in cups for homemade popsicles.

Gluten-Free Tropical Fruit Shake

The recipe below is from the Gluten-free Low Carb 10-Day Menu.

Ingredients:

• 1 ripe nectarine, pealed and pitted
• 2 tablespoons frozen pina colada mix (non alcoholic)
• 1/2 banana, frozen
• 4 strawberries, frozen
• 6 ice cubes
• 1-1/4 cups cold water

Directions:
Combine all ingredients in a blender and blend until smooth.  Yield:  1 serving. 

Celiac.com 06/28/2019 (originally published 07/12/2010) - The report by R.H. Wasserman titled “Vitamin D and the Dual Processes of Intestinal Calcium Absorption“ is very important.  I have some writing to do (and corrections to make) as a result of reading this.  It helps to explain why dogs don’t suffer from clinical osteoporosis.  It’s obvious that there are processes taking place in the ileum of humans that do not take place in the dog.  

This came up as I was counseling an Internet acquaintance concerning his osteoporosis.  He was not improving with conventional therapy and was also suffering from chronic lymphocytic colitis.  I knew that the ileum actively absorbs calcium but the numbers in the study above were news to me.  I’ve been telling people for years that one of the biggest difference between a person doing well after gastric bypass vs.  crashing and burning had to be the health of their ileum and now I understand a little more as to why this is the case, especially when it comes to bone density.  So, I’ve turned my attention to the health and wellbeing of the ileum.

I have assumed for years that one of the biggest factors in humans is dairy products.  So much points to that.  But…is it the casein and other dietary glycoproteins causing villous atrophy that does it OR is there something IN the milk that is doing it? We know that Mycobacterium paratuberculosis can be involved in Crohn’s and that it can come from milk, even when pasteurized.  Are there other pleomorphs that are doing this?

I like to point out that, of the “big 4” foods, only dairy is of animal origin and that it is “public enemy number one” for a reason: It not only contains damaging lectins, loads of estrogen, and casomorphins (BCM7) but is a veritable petri dish of microorganisms.  In fact, they now know that the bovine leukemia virus can cause leukemia in primates.  What about mycoplasma, mycobacteria, and the myriad of pleomorphic bacteria is contains, some of which could take up to a year to culture out (e.g.  mycoplasma).  I’m working on a paper that deals with the zoonoses associated with cow’s milk.

So…I still contend that dairy is one of the biggest culprits in Crohn’s and other chronic diseases of the lower intestine but these are likely to be more examples of “syndromes”, in which resident viruses and bacteria (including those viruses in the DNA) react to chronic insults like gluten, dairy, etc.  and other man-made components of food along with newly acquired viruses and bacteria, some of which are coming from vaccines.  (Gotta wonder about those weaponized versions of mycoplasma floating around.) Also, there is no place like the gut for secondary infections.  

Here is the application I am wondering about: Could antibiotics help a person with osteoporosis, knowing that pleomorphic bacterial infections are showing up in other areas of “autoimmune” disease, such as rheumatoid arthritis, scleroderma, and sarcoidosis? The process appears to be the same in all cases: The residential viruses and bacteria are all involved in adaptive processes throughout the body.  They are reason for inflammation, as they react to immune challenges being brought against the cell.  Once this process escalates and the immune system crashes, the bacteria become a significant secondary problem requiring specific treatment (see www.bacteriality.com and the “miracles” that are occurring using long-term doxycycline, etc.).  

As long as the immune system remains competent, these individuals can still be rescued by employing nutritional therapy, holistic approaches and avoidance of the obvious insults (food lectins, preservatives, pollutants, cigarettes, etc.).  Vitamin D3 therapy would be crucial here for both calcium absorption and immune competence.  But the dog, once again, may give us a clue as to which aspect of D3 is the most important in the pathogenesis of osteoporosis.  I believe that the average dog is woefully deficient in D3, with their dismally high incidence of cancer being a leading indicator.  Why wouldn’t they be low? They convert sunlight to D3 much less efficiently than humans, are covered with fur, and spend most of their time indoors.  If and when we start measuring their D3 levels, we will likely be stunned at their low levels.  And yet…they don’t suffer from clinical osteoporosis.  Is it because they don’t live long enough? Hey, they get everything else.  So again, I am wondering more and more about the immune aspects of osteoporosis in humans.

Once the patient crosses the line and their immune system becomes incompetent (which is when many present initially), bad things happen.  They go from subclinical to clinical, from bad to much worse, or from “stage two” (“autoimmune” diseases) to “stage three” (cancer).  We know now that pleomorphic bacteria are involved in cancer, which makes perfect sense.  They were involved in the adaptive processes from the start (through their influence on the cell’s mitochondria) and play a vital role in determining when the cell (and the viruses it contains) finally decides to form a tumor to escape further insults.  This process is taking place all over the body in every tissue we have.  So…this must be happening in the ileum, where they now say 70-80% of the calcium is absorbed.

Could antibiotics of the right type be of help when these immune incompetent individuals need rescuing, even in cases of refractory osteoporosis? Certainly, we should try to avoid their use for as long as possible but we have to be realistic sometimes in what the patient or the owner of a pet is willing to do.  Those who are into holistic medicine can avoid this last ditch effort for the longest time, even indefinitely.  But if the last ten years have done anything for me, they’ve made me a realist.  Sadly, most people want a quick fix.

Source: 

• Wasserman RH, Vitamin D and the Dual Processes of Intestinal Calcium Absorption,  J.  Nutr.  134:3137-3139, November 2004

Article Corrected 07/01/2019 - The original article was corrected as it referenced a study linking the measles portion of the MMR vaccine with ileum damage in humans, however, this study was retracted.

Celiac.com 06/20/2019 (originally published 07/12/2010) - Autoimmune diseases taken together are the third leading cause of death in the US.  The list of autoimmune diseases is long and varied—M.S., type 1 diabetes, lupus, Hashimoto’s thyroiditis, rheumatoid arthritis, Sjogren’s, and fibromyalgia to name just a few.  But the autoimmune disease celiac, unlike all the others, has a unique feature—it’s the only autoimmune disease where the exact trigger is known.  Gluten is the trigger for celiac disease and when that trigger is removed the body stops destroying its own small intestine.

Why is this profound?  Two reasons:

1. There is no other autoimmune disease where the exact trigger is known.
2. Gluten and the damage it causes to the small intestine may very well be the root cause of other autoimmune diseases!

We have appreciated the interesting phenomenon where people “develop” gluten intolerance at different ages.  It used to be perplexing because it was assumed that if the problem was genetically driven, as soon as the body received its first gluten “insult” damage should begin to occur.  When patients stated that they felt perfectly fine until a certain age, it was thought that the damage had probably begun far earlier but the patient had just not noticed.  What we have come to realize is that a genetic propensity plus the presence of gluten in the diet are only two of the three necessary constituents of the puzzle—the third is damage to the small intestine.

A completely healthy, intact small intestine seems to be quite able to defend itself against gluten.  But once damage has occurred, the gut becomes “leaky” and not only can digestive complaints result but symptoms arise in other body systems.  There has been proof for many years that the intestine is not the only tissue targeted by the immune reaction to gluten.  The prime example of this is a disease called dermatitis herpetiformis where the gluten sensitivity manifests primarily in skin, with only mild or no intestinal involvement.  Now, more recent research reveals that perhaps a vast number of autoimmune diseases may also involve an immune response to dietary gluten as well as its consequent autoimmune reaction to tissue transglutaminase.  This may be the main immunologic cause.  [Note: Although we typically think of tissue transglutaminase as an enzyme in the gut, it is, in fact, an enzyme found throughout the body.  This is perhaps another reason why gluten has such far-reaching effects in other systems of the body.]

The substance that dictates the permeability between the barrier cells that line the small intestine is called zonulin.  Increased zonulin causes the intestine to become leaky, thereby allowing substances to leave the intestine that normally shouldn’t.

Research has shown that in patients with celiac disease, gliadin activates zonulin signaling, leading to increased intestinal permeability.  But how does this extend to other autoimmune diseases?

Dr. Alessio Fasano performed a brilliant study on rats that were genetically predisposed to develop type 1 diabetes.  The premise was that if the gut was not affected negatively by zonulin and remained intact and healthy, then perhaps the auto-antibodies made against specific cells of the pancreas that create diabetes would be prevented from leaving the gut and thereby stopped from causing damage to the pancreas.  Sure enough 2/3 of these rats who were highly predisposed to develop diabetes did not!

This study was the first time that an autoimmune disease was prevented by blocking intestinal permeability.  It further puts a new face on the entire concept of how and why autoimmune disease develops.  We’ve always thought that the genetic predisposition was an overriding characteristic of autoimmune diseases that overshadowed any effort to sublimate it.

This study opens a new field of investigation into the relationship between the health of the intestine and the basis of many diseases.  Imagine if the “unknown trigger” of autoimmune disease turns out to be gluten and its effect of creating a leaky gut!

It is for this reason that I am so passionate about early diagnosis of gluten intolerance.  Whether it be celiac disease or gluten sensitivity, the effect that gluten imposes on the integrity of the small intestine has far-reaching implications.  I see it clinically in my patients on a daily basis, but the above research puts a point on it that we must consider seriously.  

A study from Italy showed that the longer gluten sensitive people eat gluten, the more likely they are to develop autoimmune diseases.  They found that in childhood celiacs, the prevalence of autoimmune disease rose from a baseline of 5% at age 2 to almost 35% by age 20.  Imagine if screening of all children for gluten intolerance resulted in reductions of future autoimmune diseases!

I am currently working on a program with my patients who are gluten intolerant to restore their small intestines to the healthiest possible condition.  This is important from the obvious viewpoint that optimal digestion and absorption is critical to good health.  But it is also vital from the perspective of understanding and managing zonulin and its long-term effects on health.

I would recommend that you take the following steps to ensure that you are doing everything you can to restore your small intestine to optimal functioning.

Have a comprehensive stool analysis performed to ensure that no pathogenic organisms (bacteria, amoeba, parasites, etc) are present.  Such a test should also measure the effect of your body’s enzymes to see how effectively your food is being broken down and absorbed.  It should also assess the health of your intestinal bacteria or probiotics.  

Eliminate dairy foods from your diet.  There is considerable evidence to suggest that consuming milk from other mammals is not conducive to good health, especially in our digestive tracts.  The inflammation that dairy can cause could well be contributing to a leaky gut, despite the elimination of gluten.

Once you have taken the above steps, see how you’re feeling.  Some patients require supplements such as glutamine, quercitin, reduced glutathione, N-acetylcysteine, omega 3 fatty acids, and vitamins A, E, B and zinc to help the intestinal lining heal fully.  

Once the above have been done, have a lab test performed for leaky gut.  It’s called a lactulose/mannitol test and will show whether large molecules are crossing the intestinal barrier.  This is a non-invasive, non-drug test.

Just to reiterate: encourage parents you know to have their children evaluated for gluten intolerance.  The more we can affect an early diagnosis, the healthier our future generations will be.

Last but not least, show your doctor this data.  There is still too much ignorance in our profession about gluten and its broad reaching negative effects.

I hope you find this information helpful.  Many of the steps mentioned above are best administered with the help of a clinician so let me know if I can assist you to find someone in your area who can help.  

References: 

• Scandinavian Journal of Gastroenterology. 2006 Apr;41(4):408-19.
• Annals N Y Academy Science. 2009 May;1165:195-205.  “Tight junctions, intestinal permeability, and autoimmunity: celiac disease and type 1 diabetes paradigms.”
• Clinical Gastroenterology & Hepatology. 2005 Apr;3(4):335-41.  “Permeability, zonulin production, and enteropathy in dermatitis herpetiformis.”
• Gut. 2003 Feb;52(2):218-23.  “Early effects of gliadin on enterocyte intracellular signalling involved in intestinal barrier function.”

Celiac.com 06/14/2019 (originally published 07/12/2010) - Xanthan gum derives its name from the strain of bacteria used during the fermentation process.  This bacteria is known as Xanthomonas campestris and is the same bacteria responsible for causing black rot to form on broccoli and cauliflower.  These bacteria form a slimy substance which acts as a natural stabilizer or thickener.  When Xanthomonas campestris is combined with corn sugar, the result is a colorless slime called xanthan gum.

Xanthan gum is a polysaccharide used as a food additive and rheology modifier.  It is produced by fermentation of glucose or sucrose by the Xanthomonas.  (Wikipedia)  Xanthan Gum is considered a polysaccharide in scientific circles, because it is a long chain of three different forms of sugar.  What’s important to know is that all three of these natural sugars are present in corn sugar, a derivative of corn syrup.  It does not contain gluten.  

Xanthan gum is also used as a substitute for wheat gluten in gluten-free breads, pastas and other flour-based food products.  Those who suffer from gluten allergies should look for xanthan gum as an ingredient on the label.  

It is used by people who are allergic to gluten to add volume and viscosity to bread and other gluten-free baked goods.  It is a natural carbohydrate.  Xanthan gum helps replace the gluten in a recipe and aid in binding and thickening recipes.  It is an essential ingredient in gluten free baking.  

Many people with Celiac disease and gluten intolerance have reported an allergic reaction to xanthan gum.  Symptoms include bloating, gas, stomach cramps, diarrhea, skin rashes and itching.

If you have an issue with soy or corn, it is likely you will have a problem with xanthum gum as well.  Safe alternatives would be karaya gum, agar and carrageenan.

Celiac.com 06/13/2019 (originally published 07/12/2010) - Celiac disease, also known as celiac sprue or gluten-sensitive enteropathy, is a condition characterized by chronic malabsorption and damage to the small intestine mucosa when gluten is consumed.  Once diagnosed with this disease, a person must adhere to a life-long diet free of gluten.  Symptoms that may occur when a person with celiac disease ingests gluten include gastrointestinal discomfort such as pain, vomiting, bloating, diarrhea, inflammatory skin rashes, fatigue, hair loss, mouth sores, and loss of dental enamel.  Long-term complications may include decreased bone density, infertility, and lymphoma of the small intestine (Ciclitira & Lamont, 2009).  There is a documented association between celiac disease and other conditions such as type I diabetes (Gale, 2008); however more research is needed to understand the nature of these relationships.  Sometimes even strictly adhering to a gluten-free diet may not eliminate all symptoms and prevent the long-term complications particularly for those with more severe cases or refractory celiac disease.

Another unique aspect of celiac disease that warrants attention is that many patients are misdiagnosed or have gone through lengthy procedures to identify their illness (Kostopoulou, Walsh & Delaney, 2009).  Epidemiological studies suggest that celiac disease occurs in approximately 0.5%-1.0% of the U.S. population, yet the disease continues to be under diagnosed.  One explanation for the rate of undiagnosed cases is limited knowledge regarding the clinical presentation of celiac disease among primary care physicians (Kostopoulou et al., 2009).  Celiac disease has a range of symptoms, which can vary dramatically, and silent cases with atypical symptoms that are not manifest in overt gastrointestinal symptoms may be overlooked.  

Awareness of celiac disease has dramatically increased over the past decade.  This is likely because an increasing number of clinical studies have focused on improving the diagnostic tests and treatments for this disease.  However, research has just recently begun to address the psychological and quality of life issues associated with having celiac disease.  The purpose of this article is to provide some information on the psychological symptoms associated with celiac disease, the motivators of effective management of this disease, and strategies that may be useful in preventing the negative psychological consequences that are often associated with celiac disease.  

Psychological Symptoms

Research has uncovered numerous psychological symptoms that accompany celiac disease, ranging from anxiety and depression to increased risk for eating disorders and schizophrenia (Leffler, Dennis, George, & Kelly, 2007).  Other related conditions include decreased affect, known as alexthymia, and migraine headaches.  Although one might assume that some of these psychological issues could accompany any chronic health condition and be explained by the stress and adjustment involved in managing a chronic disease, celiac disease presents unique mental health challenges.  The nature of this disease interferes with the absorption of essential nutrients and amino acids necessary to maintain adequate levels of serotonin and puts one at risks to experience a “depressed” state characterized by malaise, fatigue and flattened mood.  Indeed, there appear to be both physiological and psychological contributors to the mood changes associated with celiac disease.

Some research suggests that gastrointestinal diseases such as celiac disease are correlated with certain personality traits/dispositions (George et al., 2009).  Personality features, such as being anxious, interpersonally sensitive or prone to depression are often present prior to the diagnosis of celiac disease and may exacerbate the disease.  Indeed, a person with celiac disease who struggles with stress and anxiety may allow these emotions to impede with consistent engagement in dietary adherence and exercise, both of which are important to live well with celiac disease.  Clearly, it is critical to address the psychological issues associated with celiac disease.  This can be done by including stress and anxiety reduction exercises and/or counseling as critical parts of the treatment of celiac disease.

The extended time and diagnostic procedures often needed to arrive at an accurate diagnosis of celiac disease can also have a psychological toll on individuals with this disease.  For instance, frustration, mistrust of doctors, feelings of powerlessness, hopelessness, and resistance to adhering to providers’ treatment recommendations are among possible reactions at some point during the celiac diagnosis process.  In fact, stress and psychological diagnoses are sometimes given in the absence of a biological explanation for patients’ symptoms of celiac disease.  It is not uncommon for patients to go through the stressful process of “doctor shopping” before they are accurately diagnosed with celiac disease.

The importance of family support cannot be underestimated in the process of diagnosing and managing celiac disease.  Research shows that having the support of one’s family and friends plays a large role in how well one manages their chronic illness (Dimatteo, 2004).  In fact, one study found that consistent support from a loving, cohesive family can increase adherence to medical advice, such as to eat a healthy diet, nearly two-fold.  These studies underscore the importance of informing one’s family of a celiac disease diagnosis and asking for their support in managing the disease, especially when first diagnosed (Gallant, 2003).  Often times, family members may have little to no knowledge of a disease such as with celiac disease, and learning about the disease together can improve both your own control over it and the support you receive from your family.  Navigating the process of learning about celiac disease and the gluten-free lifestyle together will help family members better understand the unique challenges of living with celiac disease.

Motivators and Barriers

Engaging in healthy eating, including eating gluten free foods, and engaging in regular moderate-to-intense physical activity are central to successful management of celiac disease.  However, sustaining the occurrence of these behaviors over time requires motivation to engage in these behaviors and awareness of strategies for overcoming the barriers to the occurrence to these behaviors.  Specific motivators for engaging in healthy eating by individuals with celiac disease include the following: (a) experiencing or being made aware of the severe symptoms that come with this disease as a result of unhealthy eating, (b) having family members and friends who buy and eat healthy foods, including gluten free foods (i.e., family and social support), (c) and being a part of a celiac disease advocacy group.  It is also noteworthy that personal traits such as conscientiousness and valuing of health predict adherence to a gluten free diet (Edwards, Franko, Leftler, Dennis, & Blom-Hoffman, 2009).  Additionally, there is research evidence that knowledge regarding a gluten free diet and being involved in a celiac disease advocacy group also predict adherence to a gluten free diet (Leffler, Edwards-George & Dennis et al., 2008).  

Specific motivators for engagement in routine moderate-to-intense physical activity by individuals with celiac disease include the following: (a) awareness that routine physical activity is a great way to reduce and prevent stress and stress related migraine headaches, (b) having a partner (child or adult family member or friend) with whom to engage in physical activity, and (c) participating in walking groups and dance classes in one’s community that are convenient.  More research is needed to evidence the impact of routine physical activity on the symptoms of celiac disease, as the empirical findings from such research will likely serve as additional motivators for physical activity among individuals with celiac disease.  Exercise could potentially offset the risk of fractures and decreased bone density associated with celiac disease.

Health Self-Empowerment Theory

Management of celiac disease requires that individuals with this disease feel empowered to do so under whatever conditions that exist in their lives (.e.g., without family or friend support ).  According to Health Self-Empowerment (HSE) Theory engaging in health promoting behaviors such as those necessary to manage celiac disease requires motivation to engage in these behaviors, perceiving control in relation to these behaviors, self-praise of these behaviors when they occur, coping skills for effectively dealing with stress and depression that often result in unhealthy eating and not exercising, and having a sense of responsibility for one’s own health (Tucker, Butler, Loyuk, Desmond, & Surrency, 2009).  Support groups and short-term counseling are ideal venues for promoting these HSE Theory variables.  Psychologists who work in primary care centers are perfectly suited to provide this counseling; however, individuals living well with celiac disease are also ideally suited to lead such support groups.  Below are some example strategies for applying HSE Theory to patients living with celiac disease:

• Identify an interdisciplinary health team that works collaboratively with the patient in managing the disease.
• Empower patients to learn about celiac disease so they are knowledgeable about their role in managing the disease.
• Involve the patient in reading and understanding lab, serology, and endoscopy results.
• Encourage involvement in support groups and activism related to celiac disease.
• Teach self-praise in response to healthy choices consistent with the gluten-free lifestyle.
• Teach coping skills and stress reduction, emphasize family support, and help the patient identify positive health influences.

Tips from Dr. Carolyn Tucker

1. It is important for individuals with celiac disease to prepare for their visit with their healthcare provider by preparing a list of psychological and physical symptoms, concerns, and questions before the visit to present to their provider at the beginning of the health care visit.  It is also important to have a tape recorder or note-taker to write the answers provided by the health care provider.
2. Critical to effective management of celiac disease is learning and using assertiveness skills, which are skills to respectfully but confidently ask for the health care behaviors and information desired from health care providers.  It is also important to send a commendation note or letter to providers who provide desired health care, as such notes/letters motivate providers to sustain desired health care provision.
3. It is critical that individuals with celiac disease avoid stress by saying “no” to what they do not want to do and learn to seek help when feeling overwhelmed.  It is also important that individuals with celiac disease ask for the support from family and friends.
4. It is helpful for individuals with celiac disease to manage their depression and stress by (a) talking about these problems with a trustworthy family member, friend, spiritual leader, or counselor/psychologist, (b) assessing what activities made them happy in the past and      doing those activities, (c) learning to meditate,    pray, and/or use muscular relaxation, and (d) forming supportive friendships with individuals who are living well with celiac disease.  
5. It is useful for individuals with celiac disease to take control of their health by engaging in health promoting behaviors and praising themselves for doing so.  This requires giving priority to yourself so that you can be physically and psychologically able to express love to others.  

Note: Article co-authors: Carolyn M. Tucker, Ph.D., & Logan M. Pyle. Health Self-Empowerment Theory was developed by Dr. Carolyn Tucker at the University of Florida. 

References:

• Ciclitira, P.  & Lamont, J. (2009).  Management of Celiac Disease in Adults.  Retrieved December 4, 2009, from Up To Date website: www.uptodate.com
• Edwards George, J.B., Franko, D.  L., Leffler, D.  A., Dennis, M.D., Kelly, C.  P., & Blom-Hoffman, J. (2009).  Psychological correlates of gluten-free diet adherence in adults with celiac disease.  Journal of Clinical Gastroenterology, 43, 301-306.
• DiMatteo, Robin. (2004).  Social support and patient adherence to medical treatment: A meta analysis.  Health Psychology, 2(2), 207-218.
• Gale, K. (2008, December 10).  Type 1 Diabetes and Celiac Disease Share Several Common Susceptibility Alleles.  Retrieved December 4, 2009, from Reuters website: www.celiac.org
• Gallant, M. (2003).  The influence of social support on chronic illness self-management: A review and directions for research.  Health Education & Behavior, 30(2), 170-195.
• Leffler, D.A., Dennis, M., George, J.B., & Kelly, C.P. (2007) The interaction between eating disorders and celiac disease: An exploration of 10 cases.  European Journal of Gastroenterology and Hepatology, 19(3), 251-255.
• Leffler, D.A., Edwards-George, J.B., Dennis, M., Schuppan, D., Cook, F., Franko, D.L., Blom Hoffman, J., & Kelly, C.P.  (2008).  Factors that influence adherence to a gluten-free diet in adults with celiac disease.  Digestive Diseases and Sciences, 53(6), 1573-1581.
• Kostopoulou, O., Devereaux-Walsh, C. & Delaney, B.C.  (2009).  Missing celiac disease in family medicine: The importance of hypothesis generation.  Medical Decision Making, 29(3), 282-90.
• Tucker, C.M., Butler, A.M., Loyuk, I.S., Desmond, F.F. & Surrency, S.L.  (2009) Predictors of a health-promoting lifestyle and behaviors among low-income African American mothers and White mothers of chronically ill children.  Journal of the National Medical Association, 101(2), 103-10.  
• Tucker, C.M. & Rice, K.G., Hou, W., Kaye, L.B., Nolan, S.E., Flenar, D.J., Gonzales, L., Smith, M.B., & Desmond, F.F.  (2010).  Motivators of and Barriers to Health-Smart Behaviors Inventory (MB-HSBI).  Manuscript submitted for publication.

Celiac.com 06/07/2019 (originally published 07/12/2010) - Most of the gluten-free community is thrilled by the rapidly increasing public and professional awareness of our diet and the increasingly wide range of gluten-free choices available to us in supermarkets, health food stores, and even in restaurants. These are exciting times for those of us who avoid gluten. However, there are a few problems associated with the increasing public profile enjoyed by our diet. Members of the Press, and some health care professionals who have not kept up with the research, continue to voice false and faulty perceptions of our diet. The net result of these misinformed, often authoritative, statements, cautions, and prohibitions is that many individuals who might benefit from the diet are dissuaded from trying it or are encouraged to abandon it prematurely.

While few health care professionals (there are some) contest compliance with a gluten-free diet for those with celiac disease or dermatitis herpetiformis, many more are resistant to non-celiac gluten sensitivity as a cause to follow the diet. Others assert that the gluten-free diet lacks the necessary vitamins, minerals, and calories to sustain good health. Still others decry the lack of fiber in many gluten-free diets or they claim that it lacks the complex carbohydrates provided by gluten grains or alternative whole grains. One prominent gastrointestinal researcher even advocates consumption of breakfast cereals that contain malt flavorings. He asserts that our diet is so restricted that patients may abandon the diet altogether if they are not given the latitude to consume small amounts of gluten. Similarly, foods made from oats are increasingly advocated as “safe”, while the research is less than conclusive on this issue. To add to the confusion, many health food clerks and naturopaths are advocating spelt and kamut as being “safe” for those who avoid gluten. Over the past year, there has been a rash of publications in the popular press that depict the gluten-free diet as a passing fad because some individuals have been using it to lose weight.

This cornucopia of misinformation is more than an inconvenience for people who follow a gluten-free diet. In some cases, their health is at risk. In other cases, dismissals or misinformation will lead them back to eating gluten and all the health hazards it poses. Still others, many of whom already feel marginalized by their diet feel discredited and dismissed. Let’s examine each of these claims in light of the peer reviewed medical literature:

An overwhelming majority of researchers recommend a gluten-free diet for those who suffer from dermatitis herpetiformis. Many researchers consider dermatitis herpetiformis to be a skin manifestation of celiac disease. To that end, authoritative reports in the research literature recommend treatment with a strict gluten-free diet and the use of Dapsone as a drug that can offer the patient temporary relief while the diet takes effect (1). However, one drug usage evaluation of Dapsone makes no mention of the diet (2). This is congruent with the recommendations of many dermatologists who believe that Dapsone is the only realistic treatment for dermatitis herpetiformis and that the gluten-free diet is a foul-tasting, alternative that will be eschewed by most patients. I have listened to one such dermatologist spout his condemnation of the diet in a presentation to a group of celiac patients. He went on to indicate that those who comply with the diet are members of a radical minority who are driven by fanatic zeal (3). Although the presentation took place in 1999, I frequently hear from people with dermatitis herpetiformis who have more recently been offered similar medical advice by their dermatologists.

Only a couple of weeks ago, I heard from a lady I had encouraged to seek testing for celiac disease and non-celiac gluten sensitivity. She quoted the gastroenterologist she visited for an endoscopy, etc. as saying “Either you have Celiac Disease or you don’t, this office does not believe in those other tests.” This is a blatant denial of a report from Ireland in which early mortality among those with gluten sensitivity has been found to be greater than in the general population (4). Similar findings have been reported from Sweden (5). In a comment on these publications, Dr. Peter Green wrote (in part) the following:

Until recently, gluten sensitivity has received little attention in the traditional medical literature, although there is increasing evidence for its presence in patients with various neurological disorders and psychiatric problems. The study by Ludvigsson and colleagues reinforces the importance of celiac disease as a diagnosis that should be sought by physicians. It also suggests that more attention should be given to the lesser degrees of intestinal inflammation and gluten sensitivity (6).

Those who wrongly impugn the gluten-free diet as nutritionally inadequate have been with us for some time. Our culture seems to have developed an almost religious fervor about the health benefits of grains, particularly whole grains, yet the evidence to support such claims is sparse at best. Yes, they do contain some vitamins and minerals that are valuable to human health, but these same nutrients are abundantly available elsewhere. In fact, despite our very long-standing tradition of valuing various dietary carbohydrates, reductions of carbohydrate consumption may well lead to significant health improvements (7). There are several cultures, most notably the Inuit, that survived and thrived for millennia eating diets that were substantially free of carbohydrates and completely bereft of grains (8) and Europeans who adopted their life ways continued to enjoy robust health (8). Demonstrations of this dynamic were closely monitored and reported by physicians at New York’s Bellevue as early as 1929 when two explorers, V. Stefansson and K. Andersen were reported to have improved or maintained their good health during more than one year of eating a diet comprised of raw and cooked meat only (9, 10). Surely a diet that excludes only gluten grains is not lacking in necessary nutrients if an exclusively meat diet provides adequate nutrition.

It is less than rational for physicians to recommend gluten-free diets that allow breakfast cereals that contain malt flavorings. This is a little like recommending salted peanuts as part of a salt free diet. One of the physicians recommending malt flavorings to celiac patients is also a very vocal advocate of including oats in the gluten-free diet.

Oats have long been a contentious issue in the gluten-free community. Most members of the gluten-free community are aware of the debate. Some opt to eat oats while others prefer to avoid them, and some report that they experience symptoms of gluten ingestion when eating oats. Presumably to clear up this issue, the professional advisory board of the Canadian Celiac Association published a position paper in the Canadian Journal of Gastroenterology in 2007 (11). Like many other such publications, this group acknowledges that “There are case reports of individuals with celiac disease relapsing with the consumption of pure uncontaminated oats.” They also acknowledge that “When adding oats to the diet, individuals may experience a change in stool pattern or mild gastrointestinal symptoms, including abdominal bloating and flatulence. These symptoms should resolve within a few days.”

For those of us who spent years in search of an accurate diagnosis, such statements are fraught with problems. First, many celiacs are asymptomatic. How can we know whether oats are really safe? Endoscopies sometimes fail to reveal celiac-associated intestinal damage, when too few intestinal biopsies are taken due to patchy intestinal lesions (12). This clearly demonstrates that one or a small series of biopsies is not adequate to ensure that oats are not causing intestinal damage. Please recall that this group acknowledges that some celiacs do develop intestinal damage due to oats ingestion. We don’t know how many are missed because of “patchy lesions”, and even those who are supposedly safe eating oats must expect celiac-like symptoms for an initial period of eating them. Of course, no consideration is given to the possibility that those with non-celiac gluten sensitivity may also be harmed by oats. I would want a stronger argument from a car salesman than the oats advocates are offering in this paper. When it comes to my health, these assertions are just too flimsy for me.

There are a number of reports of celiac patients who cannot tolerate oats (13, 14, 15, 16). In a recent conversation with Dr. Rodney Ford, he suggested that the number of celiacs who need to avoid oats is about 1 in 20. The challenge here is to ensure that we are not the twentieth celiac. And all of this ignores the issue of cross contamination. How many places do you know where they grow oats and only oats? Do they cultivate, seed, harvest, transport, and mill it in equipment that only handles oats? If not, then it is almost impossible to avoid getting some contamination from other, unquestionably gluten-containing grains.

The gluten-free diet is a passing fad. Over the last year I read a number of articles published throughout the USA and the UK depicting the gluten-free diet as a silly fad. These articles could only have been written by journalists who have not followed the diet themselves. If they had experienced the inconvenience, added expense, and the social marginalizing that usually accompany the diet they would be much less likely to write such drivel.

Some of these writers decry the use of a gluten-free diet as a weight loss strategy. Perhaps they haven’t noticed that we are in the middle of an obesity epidemic, and if the gluten-free diet helps people to lose weight, I don’t understand the objection. Other journalists have suggested that those who have non-celiac gluten sensitivity do not need the diet either. Yet these same people have, according to the only two studies I’m aware of that have investigated this group, a greater risk of early death than those with celiac disease. I don’t know about journalists, but I consider that a pretty good motivation to avoid gluten even in the absence of celiac disease.

Perhaps the most egregious statement that is too often made by a variety of health care professionals and parroted by lay people is that the gluten-free diet is “nutritionally inadequate”. This is disturbing and utter nonsense. Most of the world’s populations survived and thrived before Europeans spread across the globe bringing gluten grains with them. Most of that spread has only occurred during the last few hundred years. From the Australian Aborigine to the Inuit of the Arctic, from most of Africa to the Americas, gluten grains are a new food. The suggestion that they are nutritionally necessary, or even important, is to reveal a very deep level of confusion about food, culture, and the evolutionary forces that have shaped human digestive systems.

There are, of course, many other common misconceptions about the gluten-free diet. The common preoccupation with fiber ignores recent research data that debunks that myth. Some people imagine that the gluten-free diet must include foods that act as substitutes for the gluten-containing foods we grew up with. There are even some woefully misinformed individuals who advocate kamut and spelt as safe in a gluten-free diet. This is INCORRECT. There is no question that the diet is inconvenient and expensive, but the rest of the above misconceptions range from foolish to dangerous and are often the result of having been socialized into a culture that values gluten grains far beyond any rational understanding of their benefits to those who do not have celiac disease or gluten sensitivity. I am sometimes tempted to suggest that such strong feelings appear more closely akin to the protestations of an addict rather than taste preferences. Such powerful beliefs could be argued to be rooted in the morphine-like properties of gliadorphins , also known as opioids, that are found in all the gluten grains.

Sources:

1. Caproni M, Antiga E, Melani L, Fabbri P; Italian Group for Cutaneous Immunopathology. Guidelines for the diagnosis and treatment of dermatitis herpetiformis. J Eur Acad Dermatol Venereol. 2009 Jun;23(6):633-8. Epub 2009 Mar 10.
2. G. Kannan,* J. Vasantha, N. Vanitha Rani, P. Thennarasu, K. Kousalya, P. Anuradha, and C. Umamaheswara Reddy Drug Usage Evaluation of Dapsone Indian J Pharm Sci. 2009 Jul–Aug; 71(4): 456–460.
3. Pappas. Dermatitis Herpetiformis. National Conference, Canadian Celiac Association, Kitchener-Waterloo, May, 1999.
4. LA Anderson, SA McMillan, RGP Watson, P Monaghan, AT Gavin, C Fox, LJ Murray Malignancy and mortality in a population-based cohort of patients with coeliac disease or ‘gluten sensitivity’ World J Gastroenterol 2007 January 7; 13(1): 146-151
5. Ludvigsson JF, Montgomery SM, Ekbom A, Brandt L, Granath F. Smallintestinal histopathology and mortality risk in celiac disease. JAMA. 2009;302 (11):1171-1178.
6. Peter H. R. Green Mortality in Celiac Disease, Intestinal Inflammation, and Gluten Sensitivity JAMA. 2009;302(11):1225-1226
7. Pérez-Guisado J, Arguments In Favor Of Ketogenic Diets, The Internet Journal of Nutrition and Wellness 2007 : Volume 4 Number 2
8. Phinney SD, Ketogenic diets and physical performance. Nutrition & Metabolism 2004, 1:2
9. Lieb CW, The effects on human beings of a twelve months exclusive meat diet. JAMA, July 6, 1929, 20-22.
10. Stefansson V. “Adventures in Diet.” Harper’s Magazine, November, December, 1935, January 1936
11. Rashid M, Butzner D, Burrows V, Zakardis M, Case S, Molloy M, Warren R, Pulido O, Switzer C. Consumption of pure oats by individuals with celiac disease: A position statement by the Canadian Celiac Association. Can. J. Gastroenterol 2007; 21(10): 649-651.
12. Green PH. Celiac disease: how many biopsies for diagnosis? Gastrointest Endosc. 2008;67(7):1088-1090.
13. Ellis HJ, Ciclitira PJ. Should coeliac sufferers be allowed their oats? Eur J Gastroenterol Hepatol. 2008 Jun;20(6):492-3. Review.
14. Silano M, Dessì M, De Vincenzi M, Cornell H.In vitro tests indicate that certain varieties of oats may be harmful to patients with coeliac disease. J Gastroenterol Hepatol. 2007 Apr;22(4):528-31.
15. Kilmartin C, Wieser H, Abuzakouk M, Kelly J, Jackson J, Feighery C. Intestinal T cell responses to cereal proteins in celiac disease.Dig Dis Sci. 2006 Jan;51(1):202-9.
16. Lundin KE, Nilsen EM, Scott HG, Løberg EM, Gjøen A, Bratlie J, Skar V, Mendez E, Løvik A, Kett K. Oats induced villous atrophy in coeliac disease. Gut. 2003 Nov;52(11):1649-52.

This article originally appeared in the Summer 2010 edition of Celiac.com's Open Original Shared Link.

Celiac.com 07/17/2010 - My husband and I recently returned from a trip to the Sandals Royal Bahamian Resort in Nassau, Bahamas.  What a wonderful experience! The resort itself was beautiful but the people working there made the vacation special. Prior to our arrival, I contacted the General Manager, Jeremy Mutton, advising him of my dietary requirements. He promptly responded that I would be taken care of without any problems and had informed the appropriate staff.

Upon our arrival, I was greeted by the Executive Sous Chef, Seanette Brice, and the Food/Beverage Manager, Sieon Wintz, who catered to all my dietary needs. I was so impressed by their knowledge of celiac disease and how they took the necessary precautions in having all of my meals prepared.  There are 9 or 10 restaurants on the property – most of them we dined at and they all were aware of my gluten free needs – the chefs would actually come out to speak with me prior to each meal – they often made a little something extra for my plate. The Italian Restaurant carried gluten free pasta; the pizzeria on the beach had a special pizza made for me with no cross-contamination; French fries were made in a dedicated fryer; desserts were made especially for me. Fresh fruit was plentiful as well every day. All meals/snacks were excellent. Seanette even offered to pack me a lunch the day we went into town to shop!

I highly recommend visiting this resort for a relaxing, gluten-free travel experience. I did ask if all Sandals resorts catered to gluten-free needs, but they could not speak on their behalf – each destination would have to be contacted.

The website is: Open Original Shared Link  (Resort – The Royal Bahamian)