Celiac.com 05/31/2019 (originally published 10/08/2010) - Hello. My name is Gerald Cooper. My wife was diagnosed with sickle cell anemia at the age of three. She’s 38 now and we are seeking the cure for this disease. I get on website after website and find cures for cancers and just about everything else. I am so thankful that people are getting cured from their problems, for I hate all diseases. I just get frustrated now and then because I have not found ANYONE saying that they have the cure for sickle cell anemia. I am seeking to find right now and we are desperate. We are desperate. My wife had a hip replacement due to the sickle cell anemia causing a vascular necrosis. She was also scheduled to have both shoulders replaced and her other hip. The doctors are also saying that the sickle cell anemia is eating at her spine as well. We need help now. We need help right now. WE NEED HELP RIGHT NOW. PLEASE

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Hi Mr. Cooper,
I am so sorry that you wife is having this problem and that more help has not been afforded her. You are experiencing the frustration that many, including myself, have experienced when it comes to getting REAL answers to their medical woes. I hope that I can be of some help in getting you and your wife headed in the right direction. As I state in my welcome message, I am NOT an MD (“just a veterinarian”) BUT I can point you to some of the right rocks to look under.

When it comes to sickle cell disease, the texts imply that they really don’t understand the syndrome very well. And, I guess that statement is true if they are stating that. However, there are some very critical observations to be made that I believe shed abundant light on the disease process. First of all, the sickle cell gene is/was ESSENTIAL to have in those living in Africa and along the Mediterranean where malaria is an issue. Without the sickle cell gene, people would die from malaria. If the sickle cell gene was present, when the malaria organism infected a blood cell, the cell would form a sickle cell, which would not support the malaria organism, thus protecting the individual from the disease. Again, it was ESSENTIAL that this gene be present to PROTECT that individual.

SO, what happened??? What in the world would turn an essential trait into a lethal one? You need look no further than the diets of those individuals and the catastrophic change that took place when they came to America and started eating the standard American diet. In Africa, they ate NO gluten grains, consumed NO cow milk products, NO soy and NO corn...the four damaging foods that I write so much about. These “Big 4” (or the “four horsemen of the apocalypse” as I now call them) are doing so much harm to susceptible individuals. And who are they doing the most harm to? Those who have had the least amount of time to adapt to those foods, namely Black Americans, American Indians, Hispanic Americans and Asian Americans. This should be no surprise whatsoever when viewed through the eyes of food intolerance, supported by a little stroll through history, which I do in my main paper The Answer.

What you and your wife need to fully understand is the concept of food intolerance and how the “big 4” damage the gut and block absorption of essential nutrients such as calcium, iron, iodine, B complex vitamins, vitamin C, and trace minerals and how these proteins (lectins) are capable of doing phenomenal amounts of harm to all tissues, including the walls of arteries, blood cells themselves, and every other tissue including the brain. I’m sure that your wife’s medical history will make perfect sense to you when viewed through these eyes, including concurrent and pre-existing symptoms like headaches/migraines, heartburn/IBS, allergies, etc etc. that may have been occurring for years before the serious things started occurring.

One huge piece of the puzzle lies in the work of Dr. Adamo who has written a number of books concerning eating for your blood type, based on lectins and how individuals with certain blood types are more susceptible to these food issues than others.

If sickle cell disease were my medical problem, the very first thing I would do would be to begin the elimination diet that I already eat right now...it requires strict avoidance of all gluten (wheat, barley, rye), cow milk products, soy, and corn. This is easier than you may think. I would also avoid all trans fats/hydrogenated oils, which is also getting easier as they are being taken out of prepared foods right and left. I would also consider avoiding the entire legume family (soy, beans except green beans, and peas) as these lectins are problematic for many people, as Dr. D’Adamo and that lectin link above point out. The other thing to consider is having her blood tested, which will show secondary foods to which she may now be intolerant.

You simply need to see how these dietary proteins are wreaking havoc on our bodies and how they can cause ALL of the symptoms seen in sickle cell disease. As I wrote in The Answer, I called my brother up one night after reading about Sickle Cell in the human Merck manual, a sort of medical encyclopedia of disease. I said “What does this sound like to you?”

He said “That sounds like celiac disease”, the wheat/gluten intolerance that he and I suffer from. And it did sound just like it. Why? Because the common link is these dietary proteins and the damage they can do to our bodies.

Ultimately, I am convinced that the sickle cell gene is a viral adaptation, just as most of our adaptations are. That is what viruses do for us in our bodies... they allow for adaptation. And, the presence of the malaria organism stimulates the cell to become a sickle cell, as we stated above. And it is the protein in that organism that the cells (and our immune systems) respond to. However, when this same cell is challenged by other proteins (e.g. lectins in sensitized individuals) long enough and in high enough doses, a multitude of other responses by the viruses in our cells can take place, including the development of cancers. The process that is supposed to be governing/over-seeing this whole dynamic is the (healthy) immune system. But, as the process of food intolerance continues, the immune system fails. As I have stated many times in my writing, the immune system becomes over-worked and under-paid. And when the immune system weakens and ultimately fails, that is when the serious things occur. That is why one could carry the sickle cell gene for years and not be afflicted until later in life. I would also expect post-menopausal women with sickle cell disease to get much worse.

I hope this helps and at least gives you some insight into this horrible condition. I think you will find plenty of supportive evidence if you start looking for answers along these lines. Again, understanding lectins and Dr. D’Adamo’s work should really help. You may even attempt to contact him through the site mentioned above.

Please keep in touch. I will try to help as much as I can.

Celiac.com 05/24/2019 (originally published 10/08/2010) - I need to do some studying about the individual recommendations, as I am still not well-versed in many of these alternative therapies.  However, I think I can dig most of it out now with what I have picked up from others over the years.  It all makes sense to me through my newly-opened eyes.
 
We don’t talk much about the virus(es) involved in canine lymphoma, even though it is known to be viral in most other affected species.  The big question is whether pleomorphic bacteria are also involved, as they are now suspected to be by many researchers in human cases of Hodgkin’s lymphoma.  This makes sense as viruses and bacteria act as a “tag-team” in both normal adaptation in the day-to-day life of the cell as well as the “over-adaptive” processes we call disease, including “autoimmune disease” and cancer.  Bacteria are interacting with the mitochondria, driving the cellular metaplasia (and “precancerous” changes) while viruses are interacting with the nucleus, driving the rapid cellular division that characterizes cancer.  
 
The question then becomes: What is the real reason “malignancy” occurs?  What is/are the factors in this syndrome that make one tumor become more aggressive than another?  Is it an additional virus or pleomorphic bacteria that completes picture…a helper virus as some describe it?  To a degree, this is academic because the approach is the same- we need to stop doing what we are doing that has caused this in the first place.  Cancer is simply a spectrum disorder and the natural consequence of our not dealing properly with “phase two”—the “autoimmune diseases”, in which the immune system is desperately trying to get this mess under control so that the cells and their adaptive residents (viruses and bacteria) don’t feel compelled to start forming tumors (cocoons) to protect themselves from the toxic environment in which they find themselves.
 
“Disease”, including cancer, is no longer a mystery at all, is it?  The only differences between one disease and another is the different viruses and bacteria involved (many of which are lurking in the DNA, passed down through the generations), the various triggers (toxic insults we throw at them), and the cell/organ involved.  The age and rapidity of onset is determined by concurrent illnesses (malnutrition/leaky gut, hypothyroidism, adrenal and pituitary dysfunction, gonadal insufficiencies, etc.), most of which can be connected to the same leaky gut, malnutrition, and toxic insults that we believe contributed to the cancer.
 
So…the logical approach is to reestablish wellness as quickly as possible by healing the gut (the removal of gluten, et al), providing a biologically appropriate, eliminating as many environmental toxins as possible (e.g.  fluoride, pesticides), identifying and treating the concurrent illnesses (e.g. hypothyroidism), and then addressing the viruses and bacteria that are involved in the process.  (Knowing what we now know about pleomorphic bacteria and cancer, could antibiotics help?…or would they do more harm than good by forcing these bacteria into adapting further???)
 
Thankfully, by taking the steps outlined above, we often won’t have to address the viruses and bacteria specifically as they will be satisfied with our efforts and go back to doing what they were doing before we bombarded them with all of the toxic insults, which was helping the cells to adapt to change.  But in the case of cancer, we have our work cut out for us.  The individual with cancer has had some degree of immune failure, at least at a local level, for cancer to have occurred.  In these “end game cases”, we have to do everything right, which brings into question the logic behind the use of carcinogenic chemotherapy.  
 
In the cases of overwhelming bacterial infections (which primarily occur because of weakened immunity and toxic insults), we frequently have to pull the afflicted individual from the fire by using powerful antibiotics, killing the “offending” bacteria, which were often normal residents of the body before they were forced into replicating at a pathological rate, due to the toxic environment in which they found themselves, and often in a body that is repeatedly insulted by malnutrition, pollutants (e.g. air pollution, cigarette smoke, dietary insults), and poor lifestyle choices.  Whose fault is it that these normally-helpful microorganisms rebelled???  
 
So…once again…in the case of cancer, do we occasionally need to pull out the big guns that bring down the strongholds of these scapegoats we call viruses and bacteria?  Do we sometimes need to blast their cocoons with harsh and potentially carcinogenic chemotherapy in order to pull the afflicted from the fire in the same way that antibiotics, anti-fungals and anti-virals are used to rescue the less-afflicted???  
 
I contend that we wouldn’t if…IF…we could correct enough of the underlying causes.  But…that’s a big “if”.  Can we eliminate enough carcinogens with our patients living in polluted cities?  Can we provide them with a perfect diet to reverse the catastrophic malnutrition from which many suffer?  Can we give them all purified water, free of the fluoride and other toxins commonly found in the general water supply?  Can we convince them to leave a highly polluted city (e.g.  NYC, Boston, LA, Atlanta, Phoenix, Mobile) that is assaulting them with more than enough carcinogens and neurotoxins to place them firmly in the predicament in which they find themselves?  Can we give them enough antioxidants, nutriceuticals, essential oils, and homeopathic remedies to undo the years of physical abuse and poor lifestyle choices that led to this calamity?
 
Sadly, in most cases, the answer is “no”.  But that doesn’t mean we can’t try.  That is the main difference between us and the classically-trained, allopathic doctor: We are at least considering our role in this and making use of what we learned in basic Sciences about how the body truly works.  Isn’t it amazing how the first years of medical school (the basic Sciences of Anatomy, Histology, Pathology, Physiology, etc.) are almost completely wiped out by the final years of clinical work?  Suddenly, we have a pill for everything and are focusing on drug dosages and interactions, having completely forgotten WHY the body does what it does.  Is this brain-washing an accident or intentional on some level?  One has to wonder.
 
The true role of our residential organisms (viruses, bacteria, fungi and parasites) is one of the most amazing things I have learned in the past ten years.  Once we grasp (or re-grasp) the adaptive process—the fact that there are living entities that move in and out of cells reporting on and adapting to the outside environment, the mystique of medicine disappears and “greater things” become possible.  But the limitations in the lives of the afflicted individual are both real and saddening.  For them, we have to do exactly what we are doing here: Come up with the best compromise.  
 
In the case of cancer, is the tumor/process life-threatening enough to warrant further intoxicating the body?  Will a solitary tumor or enlarged lymph nodes kill the patient?  Is the systemic cancer like lymphoma causing enough organ dysfunction to justify the use of immunosuppressive drugs (e.g.  prednisone) and carcinogenic chemicals, both of which are illogical once we know that the true underlying “causes” are viruses and bacteria that have simply (and visibly) rebelled in response to our own wrong-doing, including trashing our immune system so thoroughly that it can’t control the process even without the addition of more immune-suppressing drugs?  
 
We are our own worst enemy.  But…at least we know that now.

Celiac.com 05/17/2019 (Originally published 10/08/2010)  - There are many ways in which the immune system is compromised in the context of celiac disease.  A lack of fats (due to fat malabsorption) can limit production of eicosanoids and other fat-dependent immune system components.  Malabsorption of minerals such as zinc, copper, iron, selenium, or magnesium can also impair immune function in several ways.  Malabsorption of non-metalic elements such as iodine can also impair our immune function through impairing T cell production by the thymus.  The leaky gut, a chronic feature of untreated celiac disease can induce autoimmunity and deplete the very resources that protect us from infection and toxic agents.  The recent successes of Larazotide are highly suggestive that it is the leaky gut that is at the very root of celiac disease, since many celiacs can consume gluten with little harm when taking this drug.  

Malabsorption

Our cells can make use of three separate sources of energy.  They can burn glucose, from carbohydrates, amino acids, from proteins, or fats which can be saturated, monounsaturated, or polyunsaturated fats.  Any or all of these can be used for fuel at the cellular level.  Celiac disease has long been characterized as a condition of fat malabsorption, and some fats are essential to our survival and wellness.  Stephen Cunnane makes an excellent case for these essential fats in his book about the evolution of the human brain titled “Survival of the Fattest”.  He shows that the human brain cannot develop normally without adequate supplies of omega 3 fatty acids.  We also need fats to make many elements of the immune system.  We must consume and absorb omega 3 and omega 6 fatty acids because our bodies are unable to efficiently produce them.

Similarly, as our understanding has expanded, we have come to recognize that absorption of other nutrients such as minerals can also be compromised in untreated celiac disease.  (Some people with celiac disease continue to battle mineral malabsorption for many years after adopting the gluten-free diet.)  Patients with iron deficiency that does not respond to supplementation should be investigated for celiac disease, as refractory iron deficiency is common in untreated celiac disease (1).  Iron is an important constituent of immune function and Stephen J.  Oppenheimer has identified seven separate dynamics through which iron deficiency can compromise immune function.  These include:  

1. Reduced neutrophil function which can be reversed through iron supplementation;
2. Reduced numbers of T-lymphocytes;
3. Reduced T-lymphocyte responsiveness;
4. Impaired natural killer cell activity;
5. Impaired interleukin 2 production;
6. Altered macrophage migration;
7. Altered cutaneous hypersensitivity (2).   

Magnesium deficiency, in the context of celiac disease, has been identified as a factor in damage to the parathyroid gland and consequent bone demineralization.  Rude et al have shown that magnesium supplementation alone will reverse this problem (3).   

Similarly, mineral malabsorption may impede our supplies of zinc, copper, and selenium, each of which may have a negative impact on the immune system.  Even a mild zinc deficiency can impair T cells, interfere with hormonal regulation of the thymus, and activation of tumor necrosis factor and natural killer cells (4).  I have previously reported that natural killer cells are the body’s first line of defense against malignancy (5).  Natural killer cells also help to protect us from a variety of infectious agents.  

Malabsorption of non-metallic elements such as iodine can also impair immune function.  Not only does the thyroid gland require iodine to function properly, the healthy thymus gland contains large reserves of iodine and a wide range of immune functions require iodine.  The antibacterial uses of iodine have a long history and this element was discovered early in the nineteenth century.  Although iodine is now added to most table salts in the industrialized world deficiency continues to plague the third world causing preventable mental retardation.  Failure to absorb this important nutrient can cause disturbances to many facets of the immune system and impair heat regulation through compromised thyroid function.  Added problems with the thyroid gland can also come to the untreated celiac through autoimmunity induced by a process called molecular mimicry (more on this later) which is one of the means by which the leaky gut can also create havoc with the immune system.

Leaky Gut

Jon Meddings has characterized the gastrointestinal tract as a long tube running through our bodies that contains materials from the outside environment (6).  Unlike our skin, we have only one layer of cells in the intestine that protects us from the outside world.  These cells must selectively absorb nutrients from this material, while providing a protective barrier against constituents of our food that might harm us.  These nutrients are absorbed through the epithelial cells and are released on the other side of the cells into the bloodstream.  

The leaky gut, as induced by gluten, is a state where excessive zonulin is produced in the intestinal lumen.  This protein attaches to the epithelial cells that line the intestine.  The epithelial cells move further apart leaving gaps between the cells, thus allowing matter to enter the bloodstream on the other side of the epithelial barrier.  Depending on the size of these gaps, various toxins, infectious agents from our food, undigested and partly digested food particles, and even the friendly bacteria that inhabit our intestines may reach the bloodstream and beyond.  

Whether in the form of partial or complete proteins from foods, microbes from the external environment, or friendly bacteria from our intestines, once in the bloodstream our immune systems recognize these proteins as foreign.  We produce antibodies to attack and destroy them.  If these same proteins arrive in the circulation repeatedly, we will have elevated serum antibodies specifically sensitized to these proteins.  Protein structures can contain enormously variable sequences of amino acids.  Perhaps for the sake of efficiency, these selective antibodies recognize only one segment of the foreign protein structure, in the form of a single sequence of amino acids.  According to the theory of molecular mimicry, this or a very similar sequence of amino acids may be found in proteins that form some of our own tissues.  If we have elevated levels of antibodies that are made to attack such a string of amino acids, they will also attack self tissues.  This is process results in autoimmune disease.  

Because it is difficult to predict what sequence of amino acids the immune system will choose, we cannot predict the specific self tissues that will be attacked by our immune systems.  Nonetheless, if the theory of molecular mimicry is correct, gluten may be at the root of many forms of autoimmunity because of its impact on zonulin production.  

Celiac Disease vs. Gluten Sensitivity

The greater hazard appears to lie with celiac disease rather than non-celiac gluten sensitivity, as celiac patients not only have to contend with all the problems that come from a leaky gut, they also have all the problems associated with malabsorption.  However, Anderson et al report that people with gluten sensitivity showed a greater rate of all cause mortality as well as significantly increased rates of non-Hodgkin’s lymphoma and cancers of the digestive tract than were found among patients with celiac disease (7).  These unfortunate data may be the direct result of the many physicians and other health care practitioners who consistently urge their patients to continue to consume gluten despite the clear evidence, in the form of anti-gliadin antibodies, that these patients are mounting an immune reaction against the most common food in their diet.  Peter Green, professor of Medicine at Columbia University, has called for more attention to be paid to “the lesser degrees of intestinal inflammation and gluten sensitivity” (8).

Sources:

1. Farhad Zamani, Mehdi Mohamadnejad, Ramin Shakeri, Afsaneh Amiri, Safa Najafi, Seyed Meysam Alimohamadi, Seyed Mohamad Tavangar, Ardeshir Ghavamzadeh, Reza MalekzadehGluten sensitive enteropathy in patients with iron deficiency anemia of unknown originWorld J Gastroenterol 2008 December 28; 14(48): 7381-7385
2. Oppenheimer Stephen J, Iron and Its Relation to Immunity and Infectious Disease.  The American Society for Nutritional Sciences Supplement, Journal of Nutrition.  2001;131:616S-635S.   
3. Rude RK, Olerich M.  Magnesium deficiency: possible role in osteoporosis associated with gluten-sensitive enteropathy.  Osteoporos Int.  1996;6(6):453-61.
4. Prasad AS.  Zinc and immunity.  Mol Cell Biochem.  1998 Nov;188(1-2):63-9.
5. Hoggan R.  Considering wheat, rye, and barley proteins as aids to carcinogens.  Med Hypotheses.  1997 Sep;49(3):285-8.
6. Meddings J.  National Conference, Canadian Celiac Association, Calgary, Alberta, Canada, 1999 
7. Anderson LA, McMillan SA, Watson RGP, Monaghan P,  Gavin AT,  Fox C,  Murray LI 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
8. Green P H R, Mortality in Celiac Disease, Intestinal Inflammation, andGluten Sensitivity.  JAMA.  2009;302(11):1225-1226.

Celiac.com 05/10/2019 (originally published 10/08/2010) - After giving birth to my first son in 2003, my OB/GYN tested me for diabetes due to a sore on my leg that would not heal.  The diabetes test came back negative but my thyroid stimulating hormone (TSH) level was extremely high.  Further testing revealed Grave’s disease.  After seeing an endocrinologist I underwent radioactive iodine ablation to “kill” my thyroid gland.  After ten months of unsuccessful thyroid replacement therapy, following radioactive iodine ablation due to Grave’s disease, I was diagnosed with celiac disease in April of 2005.  

Once I had begun Levoxyl, a thyroid replacement hormone, things got worse instead of better.  I had monthly blood work done to check my TSH levels in order to see if I was on the proper dosage of medication.  Over the next ten months, my TSH levels continued to climb, eventually reaching a high of more than 150, (the normal range is from 0.4 to 4.5.) despite being on a very high dosage of Levoyxl and having added another medication for the T3 hormone (Cytomel).

During this time, it felt as though the life were being sucked right out of me.  I was extremely lethargic, gaining weight at an unnatural rate of 2—4 pounds a week, despite being on the Weight Watchers program, and I fell into a deep depression.  I was prescribed a series of antidepressants, none of which did any good.  Life was borderline unbearable, especially while caring for a toddler.

In April of 2005, after being at his wits’ end as to why I was not absorbing my thyroid hormone, my brilliant endocrinologist thought to test me for celiac disease and the blood test was positive.  He did not recommend doing the biopsy.  I think that was because there was an urgency to get control of my TSH levels.  Within 4 months of going on the gluten-free diet, my TSH levels dropped from the 150’s to 5.52.  

I wish I could say my story ended there and that I have been happily gluten-free ever since, but that is not the case.  Once I began to feel better from having a normal thyroid level, I foolishly began to question my celiac diagnosis.  From what I read at the time, the diagnosis did not make any sense.  I did not have chronic gastrointestinal issues, vitamin and mineral deficiencies, or any of the ‘classic” symptoms of celiac disease.  Neither did I have a known family history of celiac disease.  

The social impact of being gluten-free was devastating for me.  I did not have a supportive family who embraced my diagnosis.  My mother was the biggest influence.  She was confused and overwhelmed by all the changes I needed to make and instead of learning about it with me, she quit including me in family meals.  My mom couldn’t understand why I couldn’t just have a “little” gluten a few times a year, like at Thanksgiving and Christmas.  She thought I was too demanding in questioning her food and its preparation, so she felt it was easier to just have me there when food was not involved.  I felt lonely and guilty for ruining her holidays and my depression worsened from the isolation.

To make matters worse for my uneducated mind, I began to take information I read about the inaccuracy of the AGA blood tests and use it to convince myself that I did not actually have celiac disease.  When I was diagnosed with celiac disease, it was based on only two tests that were ordered by my doctor: Anti-Gliadin IgG and Anti-Gliadin IgA.  My AGA-IgG results fell in the “Equivocal” range at 25.2 EU (positive was greater than 30 EU).  My AGA IgA was positive at 42.7 EU (positive was also greater than 30 EU).

Without consulting my physician, I foolishly went off the diet for the next year and I was included in my family again.  Follow-up visits to my endocrinologist showed that my TSH levels were still in the normal range (despite resuming gluten consumption) and I was not suffering from any GI issues, so I was fairly confident my blood tests fell under the “false positive” category.

When my husband and I decided to have another baby, I was at least aware enough to get the biopsy first.  Knowing about the fertility issues that can accompany untreated CD, I had to know for sure before getting pregnant.  I may have been reckless with my own health, but my children are another story.  When I met with my gastroenterologist for the first time and presented my case, he agreed with my assessment and said I probably didn’t have celiac disease.  The biopsy showed otherwise.  It was positive.  When I questioned him on my lack of symptoms, he said a few things to me.

It was likely that my celiac disease was recently triggered by my pregnancy with Sam, thus the damage to my intestine wasn’t as severe.  The damage to the intestine is patchy at first and the areas of my intestine that were damaged didn’t affect my absorption of iron, vitamin D, etc.  Celiac Disease is progressive, meaning the longer I consume gluten during active celiac disease, the more intestinal damage and symptoms I would incur.

After giving birth to my second son in July of 2007, I cheated on the gluten-free diet again because the hospital could not accommodate my diet.  

Five months after my son was born, my father’s brother died from non-Hodgkin’s lymphoma just 9 days after he was diagnosed.  My pleas for the hospital to test him for celiac disease were ignored as they were trying to save his life.  I knew he wouldn’t make it but I thought it was important to know for our family-tree.  After his death, I learned that my uncle battled severe asthma as a child and approximately 10 years prior to his death he was diagnosed with “tight belt syndrome” after seeing his doctor for gastrointestinal symptoms.  Nothing else was done.

Ironically, while at my uncle’s memorial service in July of 2008, I fell off the diet for the final time.  This time was different though, and about 7 weeks into it, I broke out in a blistering rash all over my torso and scalp.  I also had a bruise 10-inches in diameter on my back as the result of trying to relieve the intense itching by rubbing my back on a doorknob.  I went to my dermatologist for a skin biopsy to confirm my suspicion of dermatitis herpetiformis.

Once the Dr. confirmed it, I asked her if she saw dermatitis herpetiformis often in her practice.  She said she had a few patients with it, but it wasn’t common.  I then asked her if she knew that it is related to celiac disease and she responded with, “I have heard the GF diet can help some patients with DH, but Dapsone is a more effective treatment” (as she handed me a prescription).

I never filled that prescription, especially after my doctor told me that I would need regular liver tests while I was on it.  Knowing that untreated celiacs run the risk of liver diseases like autoimmune hepatitis and biliary cirrhosis, adding a medication that could further jeopardize my liver seemed foolish.  

It turns out that my DH diagnosis was the key to further understanding my lifelong problem with gluten-sensitivity.  While I have not had the classic GI symptoms, I have been dealing with chronic atypical symptoms my entire life.  One of the physicians I saw most frequently, when growing up, was a dermatologist.  I have recently acquired my medical records from that doctor and this is part of what they say:

• 1980 (age 6): Diagnosed and treated for chronic eczema (on my feet—duration of treatment was at least 7 years)
• September 1980 (age 6): Diagnosed and treated for Impetigo* (on my scalp)
• August, 1982 (age 8): Diagnosed and Treated for Impetigo* (on my buttocks)
• In 1997 (age 15): I began to develop a minor itchy rash on my knees.  My allergist chalked it up to my environmental allergy to grass and later the dermatologist said it was related to the humidity.  (I was never tested for dermatitis herpetiformis.)
• 1998 (age 16): I developed a rash consisting of flat scales on my torso, arms and scalp on a trip to Florida.  Upon returning home and seeing my dermatologist, he diagnosed me with psoriasis.  After spending a year in light therapy, I went into spontaneous remission and have not had a recurrence in 20 years.
• From 1999—2008, my DH was sporadic and fairly minor with limited irritation.  Until my final outbreak, I never exhibited a rash that looked anything like the photos I have seen in medical journals.  

Looking back, I can also make several other connections to undiagnosed gluten sensitivity.  I have had many behavioral issues over the years, including extreme emotional highs and lows, anger management issues, depression, and trouble concentrating.  I was diagnosed with Adult ADD by a psychiatrist in 2009 and now take medication for it.

In 2008, after suffering from severe constipation, my then 5 year old was diagnosed with celiac disease via a positive tTG blood test.  His biopsy came back “clean,” and I was originally told to bring him back when other symptoms developed.  I decided to ask his doctor an “off the record” question regarding what he personally would do if this were his son.  He said that he would put him on a gluten-free diet immediately, so that is what I did.

I am now 2 years into a strict gluten-free lifestyle, and have never felt better or been happier in my life.  Not only are my celiac son and I gluten-free, but so is my husband and our other son, neither of whom have been diagnosed with celiac disease.  My husband is so enthusiastic about our diet (he not only feels better, but has lost 20 pounds after going gluten-free), that he has never been tempted to eat gluten.  I no longer feel a sense of loss or deprivation on the diet, and in so many ways, we are all better for it.

*According to the Mayo Clinic, the following are some of the signs and symptoms of Impetigo: 

1. Red sores that quickly rupture, ooze for a few days and then form a yellowish-brown crust
2. Itching
3. Painless, fluid-filled blisters

Dermatitis Herpetiformis is also characterized by an itchy, blistering rash commonly found on the knees, elbows, scalp and buttocks.  

I often wonder if the Impetigo was actually DH?

Celiac.com 05/03/2019 (Originally published 10/08/2010) - Through some intriguing recent studies, we are learning that celiac patients share some worrisome emotional experiences that will impact their quality of life.  

When I queried the ICOR Celiac listserv about how people there coped with celiac disease, I got reflections of many of my own experiences in navigating the illness before and after diagnosis.

From the answers sent and the research I’ve done on the topic, I’ve found that the celiac patient must contend with three major types of challenges.  

The first issue is directly relevant to more than a third of the celiac population.  According to a 2009 study published in the journal Movement Disorders, 35% of celiac patients report a history of depression, personality changes or even psychosis.  Many members mentioned having difficulty getting doctors and family to take them seriously and the aggravation and demoralization after years of searching in vain for a correct diagnosis.  These are particularly problematic for those of us who have gotten a dose of emotional dysfunction along with our somatic symptoms.

Maggie C. of Portland, Maine eloquently spoke of the frustration she felt because of the long delay in her own diagnosis: “I went through a succession of doctors, all of whom had me pegged as a hypochondriac.  So I got to thinking of all my symptoms as just symptoms of anxiety, anger, and depression.  It didn’t help that I was ALSO truly anxious and depressed.  Anyway, when I went GF, the anxiety, anger, and depression went away (I like to say: “Buddha ate rice!”).  So did the physical symptoms.  Now I still have people thinking (and saying) that I’m a hypochondriac because I’m “so picky” about foods, but I care less about what they think.”  

I’m glad that Maggie (I’m not using real names here) was able to triumph over so many obstacles in getting a diagnosis; she is almost heroic in summoning the pluck to pull herself together over and over again to face the possibility of yet another self-esteem battering in the examination room.  Finally she was able to get the help she had been paying for all along.  I worry about the more average patients in this situation who simply don’t have the tools and make-up to do the same.  And although she has a valiantly healthy perspective on people in her life who aren’t supportive, it can be taxing to anyone to put up defenses against thoughtless behavior.

I can imagine that it is difficult for the doctor ignorant of advances in celiac disease diagnostic protocol to discern a difference between a very sick patient searching frantically for help and a hypochondriac who searches for reasons to be perceived as ill.  Indeed, I doubt there is any difference in how those two types of patients behave.  I wish this issue could be addressed by the National Institutes of Health or the Center for Disease Control since although we don’t know how many people give up looking before they find out why they are sick, the lack of awareness among physicians still appears to be a significant barrier to diagnosis.  

Kathy, from California, who was lucky enough to be diagnosed after only 6 months, had this to say: “My pre-diagnosis symptoms were primarily emotional.  Of course, I had some gut problems, and some breathing problems too, but they were nothing compared to how emotionally disturbed I felt—all rather suddenly.

It was ten years ago (!), and my normally upbeat self began experiencing black depressions and bouts of uncontrolled weeping.  I just couldn’t perk up, and was feeling awful, as though a dark cloud was hovering over me.  Because I had no idea what was wrong, I assumed the worst, and my doctor suggested I try an SSRI for mood.  Instinctively, I felt that that was not the solution, and that medication would not help.

I was afraid to eat, and lost 15 pounds.  This really scared me, and emotionally it compounded the weird experiences I was having…”

The second situation I’d like to talk about begins at diagnosis.  Once a patient had been lucky enough to find the answer to their deteriorating health, they are told that they must inform their families that each of them may also be vulnerable to developing celiac disease.  I can’t count the number of people I’ve spoken to over my eight years as a celiac patient who have related very tense encounters with immediate family members who have reacted with everything from derision to hostility in response to this important news.  And these encounters occur at a time when sympathy and support is needed most.  Not only do they have a very difficult diet to follow and a sick and damaged body to heal, they have often been emotionally scarred just going down an often psychically brutal road to diagnosis.

Colleen of Connecticut wrote: “Communicating the possibility of inherited celiac to my siblings and children was very painful.  None of them wanted to hear about it.  Denial is real.  The best I could do was to give them the information and know that they were in charge of their own lives.  Most painful of all was my Crohn’s diagnosed daughter being unwilling to do a gluten-free trial.  After years, she did, and the diet has improved her flares greatly.  I don’t know whether to be glad she is finally on the wagon, or sad that it took so long, putting her in greater long term danger.”

Students of mythology will remember Cassandra who was given a gift by Apollo who was quite taken with her beauty.  He gave her the ability to see the future.  But when she didn’t return his affections, he added the curse that nobody would believe her predictions.  When she foretold a great impending tragedy, everyone ignored her tearful pleading.  Just like Cassandra, we celiac patients often feel an enormous responsibility to convince our immediate family of the importance of this disease.  We are told to convey the information to our children, siblings and parents so that they will know what to look out for.  We then feel badly on many levels when our good intentions are rejected.  Not only do we feel unsupported and abandoned in the face of our efforts to treat an often devastating illness, we are thwarted in our quest to prevent our loved ones from facing the same fate.  In addition, we are hurt when our character or credibility is called into question by the people we love.

And sometimes the resulting rifts in the family are never healed, which brings me to the third aspect—the social complications that arise because of the diet.  I heard from one woman that separation from some family members actually raised her quality of life.  Indeed, one respondent who related that although the men who would date her in spite of her difficult diet belonged to a shrinking pool, she felt that it was a good litmus test for mate suitability.  

Unfortunately, the social pressures put on the celiac patient can decrease the commitment to dietary compliance.  A celiac disease patient who consumes gluten has a much higher risk for certain cancers, heart disease, and of course, psychological illness, letting alone the potential devastation to her/his intestinal tract and the many other autoimmune consequences.

A study done of 70 Indian school children showed that 18% were non-compliant with the gluten-free diet.  From the study: “Dietary restrictions have impact on child’s social activities and thus psychosocial parameters (PSC score) are better in the dietary compliant group.” In other words, kids who have better support for their diet are more compliant than those who are lacking in social support.  It’s easy to see how this might apply to adults as well, especially those in care facilities where they have little to say about their food choices.  

Maggie, who is able to dine out, offered an excellent strategy for dealing with restaurant staff: 
“The key in restaurants to maintain control of the Q and A.  That requires a pro-active state of mind.

My shorthand: ‘X and X are probably absolutely fine, but anything, anything at all, that comes in a bottle, can or packet is suspect.’ Any half-way decent chef is happy to cooperate.  When the server comes back and recites said list, I am very positive and cheerful as we check off each okay item.  If something’s not okay, I just say “oops!  oh well.  Thanks so much for checking.” and on to the next possibility.  The goal is to convey a sense that this gf stuff is really, really easy given just the littlest bit of help.  Freak ‘em out with worry, and you’ll wind up with nothing but a plate of steamed vegetables.”

Maggie also sets a great example when invited to a friend’s home: “When people invite me to dinner, I accept with pleasure then say they may want to rethink it when they hear how much trouble I am.  This gives me a chance to assess their kitchen expertise and make my own decision about whether to push hard for meeting in a restaurant or to insist (ever so nicely) upon bringing my own food.”

Others, including me, feel they are too sensitive to risk restaurant food and just order a drink or bring bottled water.  Invariably, tension arises when people who are eating express discomfort when you can’t dine with them.  Often, invitations decrease over time and the entire burden of social interaction must fall on the patient.  Either the patient entertains, or invites others to outside events, or becomes more and more excluded.  

Answering my question about social invitations, one woman noted that when she wants company, it is necessary for her to do all the entertaining, and that invitations are rarely reciprocated.  

There is real a need to address issues of social support for celiac disease patients.  We know that celiac disease is an autoimmune disorder that, because of its psychological manifestations, leaves patients especially vulnerable to social stress.  And stress, of course, has a very negative impact on autoimmune patients in general.  

One last issue I’d like to touch on before putting this article to bed is some recent findings concerning cognitive decline in celiac patients.  A study in October of 2006 published in the Archives of Neurology shows a link between dementia onset and celiac disease.  Says Joseph Murray, M.D., a Mayo Clinic gastroenterologist investigator of the study, “There has been a fair amount written before about celiac disease and neurological issues like peripheral neuropathy (nerve problems causing numbness or pain) or balance problems, but this degree of brain problem—the cognitive decline we’ve found here—has not been recognized before.  I was not expecting there would be so many celiac disease patients with cognitive decline.”

Again, the unsinkable Maggie relates a story that is much like my own:  
“I was quite sick, though I didn’t know it, when I was diagnosed (biopsy, 1996).  The cognitive changes were the most consequential and scary.  I simply could not hold thoughts together, couldn’t reason my way through work-related problems.  Had I forgotten how to do what I do?  It couldn’t be...but it seemed to be.  

In a matter of months I went from being a model of success, in the office where I was working then,  to being a failure.  Having no idea why I simply couldn’t pull it together, I figured my problem was psychological: I had no respect for the executive.  I stalled and covered and tried to buy time.  No luck.  I spent more time in the bathroom than normal, but not so much that I thought anything serious was going on.  In fact I was pretty happy to have a few moments to myself and away from the pressure to do something I seemed unable to do.  Ultimately and justifiably, they fired me.  That was the last big project, in a free-lance business, for which I was hired…but (a big) consequence was the damage to my reputation.”

Those of us who have experienced dementia in our parents and other close relatives know that the slow destruction of the brain can create paranoia, severe anxiety, depression and aggressive behavior.  Dr. Murray suspects that in CD, a direct antibody attack on the brain is responsible for the dementia and other neurological manifestations of celiac patients, although it is likely a complex etiology.  If the disease can cause numbness, balance disorders, migraines and problems walking, it shouldn’t surprise anyone that cognition could be similarly impacted. 

Kit Kellison and her husband own a rock venue in St. Louis, Missouri. She enjoys playing guitar, photographic portraiture, designing show posters and is working on her first novel.

Sources:

• ICOR Listserv
• Celiac Disease Increases Risk of Neurological and Psychiatric Disorders: .  Mov Disord.  2009;24:2358-2362. 
• Assessment of dietary compliance to Gluten Free Diet and psychosocial problems in Indian children with celiac disease Indian - Journal of Pediatrics Volume 77, Number 6, 649-654, DOI: 10.1007/s12098-010-0092-3  
• Cognitive impairment and celiac disease.  Hu WT, Murray JA, Greenaway MC, Parisi JE, Josephs KA.  Arch Neurol. 2006 Oct;63(10):1440-6

This recipe originally appeared in the Autumn 2010 edition of Journal of Gluten Sensitivity.

Ingredients:
1 cup brown rice flour
½ cup rice bran
1 ½ teaspoons baking powder
1 egg
2 tablespoons vegetable oil
1 tablespoon honey
¾ cup orange juice or water
½ cup blueberries

Directions:
Preheat oven to 400 degrees F.  Combine flour, bran, baking powder in bowl.  Stir to mix.  Add rest of the ingredients.  Mix well.  Spoon into lightly oiled muffin cups.  Bake 12 to 15 minutes, or until brown.  Makes 9 muffins.

One muffin = 151 calories, 3 g Protein, 21g Carbohydrates, 8g Fat, 194mg Sodium

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

Celiac.com 05/09/2011 - Living with celiac disease and diabetes can be a challenge, but it is not impossible.  You can travel the world, eat out and enjoy life but assertiveness is important to maintaining good blood glucose management and digestive health.

Individuals with diabetes may notice an elevation of their blood glucose after overeating gluten-containing foods at a party, sleep-over, or birthday celebration.  The usual rationalization is that too many calories and/or carbohydrates were consumed.  However, it may be a wake-up call for you to try and control blood glucose levels by reducing or excluding gluten-containing foods.

When eliminating wheat is first proposed as an alternative for controlling blood glucose, a frequent response is to express how “nutritious” wheat is.  As the nutritional comparison of flours in my book Living Gluten-Free (Charles C.  Thomas, Publisher, 2008)  illustrates, rice flour is comparable to wheat flour, and superior in Vitamin B6, Pantethenic Acid, Zinc, Copper, Manganese and many other vitamins and minerals.

Gluten sensitivity may affect as many as 1 in 25 Americans.  It is also becoming better recognized as a primary cause of inflammation.  Celiac disease or gluten intolerance can masquerade as many other diseases, including diabetes.  Many people given steroid medications for bowel inflammation can also develop diabetes as a side-effect of the steroid medication.

Once a gluten-free diet has been started, it is not necessary to “go back on wheat” to get a diagnosis of celiac disease.  A simple blood test can reveal whether one has the predisposing genes for gluten enteropathy, and therefore whether it is a cause of blood glucose problems.  Far too many people are told by gastroenterologists that a small intestinal biopsy is the “gold standard” for diagnosis.  A HLA-DQ2/DQ8 blood test is less invasive, more precise and more cost-effective than the “gold standard”.  Genetic predisposition for celiac disease has been described by Alessio Fasano, MD and illustrates how celiac disease is not one disease.  In addition, genetic sequencing has reported that both celiac disease and diabetes are located on Chromosome 6, along with Crohn’s Disease.

For managing diabetes, a gluten-free, carbohydrate-controlled diet can be a healthier alternative than eating whole wheat.  Ten years ago gluten-free products such as prepared muffins, cookies, pizza crust, etc.  were not available.  Rice cakes were the norm and homemade bakery products added variety to the diet.  Today, there are aisles of gluten-free products in the supermarket and health food stores.  Even major convenience bakery mix producers like General Mills, Minneapolis, MN offer gluten-free cookie brownies and cake mixes.

The advantage of choosing recipes in Living Gluten-Free is that sugar and carbohydrate levels are reduced compared to the mixes and prepared frozen bakery products available.  This is important for individuals with diabetes who must limit carbohydrates.  If prepared products are used in the diet, remember to divide the sugars total on the nutrition label by 4 to calculate how many teaspoons of sugar are in a serving (Example: chocolate chip cookie 1= sugars 13g divided by 4g = 3 teaspoons sugar per cookie).

The only therapy currently available to treat gluten intolerance is removal of gluten from the diet.  Since gluten is a component of many common foods and widely available in so many convenience foods, avoidance can be challenging.  Here are two menu ideas for a gluten-free diabetic diet.  More menus are available in Living Gluten-Free.

• Day 1   
  • Breakfast: Grits, Scrambled Eggs, Orange Juice
  • Lunch: Taco Salad & Corn Chips
  • Dinner: Rib-eye Steak, Baked Potato, Spinach, Tomato Salad
  • Snack: Grapes

• Day 2
  • Breakfast: Turkey Sausage, Blueberry Muffin*, Apple
  • Lunch: Sliced Ham on Rice Bread, Fresh Fruit
  • Dinner: Baked Chicken, Sweet Potato, Roasted Cauliflower, Carrot Raisin Salad
  • Snack: Rice Flour Brownie

Celiac disease, which is essentially an autoimmune reaction to gluten, a protein found in wheat, barley, and rye, affects approximately three million Americans, but according to estimates, only three percent of them have been properly diagnosed with the disease. Once celiac disease is diagnosed, treatment is simple—following a gluten-free diet. With so many American celiacs going without a diagnosis,  this painful and potentially fatal autoimmune disorder, with its easy method of treatment, attention needs to be focused on effective, efficient testing.

Although awareness of celiac disease and gluten-free living is increasing in the various medical fields, accurate and reliable testing has not been definitively tackled or uniformly implemented by medical practitioners. Currently a popular method of testing is a blood test, but some people with celiac disease can get blood testing many times and the results will nevertheless be negative.

Although blood testing has been successful in diagnosing some people with celiac disease, this method is inaccurate at least 80 percent of the time, according to Dr. Datis Kharrazian, Blood Chemistry Seminar instructor and the formulator for Apex Energetics, Inc. supplements. To understand how blood testing works, a basic grasp of the workings of the immune system is essential. Antibodies are part of the immune system and designed to attack specific antigens, or invaders, of the body. Tests can be conducted that find an increase of antibodies in the system, which are on the prowl for certain foreign invaders. Specifically, anti-gliadin, or anti-gluten antibodies, can be tested for; when these exist in the system in large amounts, it is a sign of the autoimmune disorder, celiac disease. Although this may sound workable in theory, in practice blood testing is insufficient and inaccurate due to the fact that the autoimmune response doesn’t occur in the blood stream, but in the small intestine, as the immune system attacks this organ’s absorptive finger-like structures called villi which line the inside. Thus, for the sake of reliability, this suggests that testing should be focused on the gut.

So what method can we turn to? Fortunately, there is another method apart from an intestinal biopsy, which is an invasive as well as expensive procedure. It turns out that the immune cells which surround the gut also can be located in large numbers in the stool, making a stool anti-gliadin antibody test a reliable alternative to blood testing.

Stool testing may be more accurate than blood testing and is more convenient. One doesn’t need a doctor’s prescription for the test, which can be conducted in the privacy of one’s own home with an online-ordered kit from EnteroLab, which according to its website, is “a registered and fully accredited clinical laboratory specializing in the analysis of intestinal specimens for food sensitivities.”

Enterolab offers the Anti-Gliadin Antibodies Stool Test as well as additional tests which can be ordered may be important diagnostic tools for people who have celiac disease or gluten-sensitivity. These additional tests include the Tissue Transglutaminase Stool Test, which tests whether gluten is actively attacking the intestine and other tissues, the Malabsorption Test, used to determine whether the intestine is malabsorbing nutrients due to the autoimmune reaction to gluten, or the Celiac and Gluten-Sensitivity Gene Test. The lab also offers a Milk Sensitivity Test, which tests for reactions to casein, a milk protein

With millions of celiac Americans living with their disease undiagnosed, we can’t afford to waste time with inaccurate and inefficient testing. The anti-gliadin antibodies stool test, so easily available to the public, is a great stride forward for the celiac community.

Talk with your health care provider today about this alternative to celiac blood testing.

Celiac.com 12/06/2010 - The hazards to health created by celiac disease and gluten sensitivity are well understood.  From nutritional deficiencies to osteoporosis, from depression to autoimmune disease, and from psoriasis to thyroid disease, there are few areas of the human body that gluten doesn’t touch in a negative way. 

There is so much emphasis on our inadequate abilities to diagnose gluten intolerance, that when we do finally make the diagnosis I believe we are guilty of another problem—lack of adequate education to those affected patients.
Just last month a research study was released by the American Journal of Gastroenterology, 2010 Jun; 105(6):1412-20.  The article was entitled “Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet”.  The research team hailed from the Division of Gastroenterology and Hepatology at Mayo Clinic College of Medicine.

They stated that while a positive clinical response is typically observed in most adults with celiac disease after treatment with a gluten-free diet, the rate of small intestine recovery is less certain.  Their aims were to estimate the rate of intestinal recovery after a gluten free diet in a cohort [a group of people with statistical similarities] of adults with celiac disease, and to assess the clinical implications of persistent intestinal damage after a gluten-free diet. 

Of 381 adults with biopsy-proven celiac disease, 241 had both a diagnostic and follow-up biopsy.  Among these 241, the confirmed mucosal recovery at 2 years following diagnosis was 34% and at 5 years was 66%.  Most patients (82%) had some positive clinical response to the gluten-free diet, but it did not prove a reliable marker of intestinal recovery. 

 Poor compliance to the gluten-free diet, severe celiac disease as defined by diarrhea and weight loss, and total villous atrophy at diagnosis were strongly associated with persistent intestinal damage. 

There was a trend toward an association between mucosal recovery and a reduced rate of all-causes of death, adjusted for gender and age. 

The conclusions were that intestinal recovery was absent in a substantial portion of adults with celiac disease despite treatment with a gluten-free diet, and that there was an association between confirmed intestinal recovery (vs. persistent damage) and reduced mortality independent of age and gender. 
So what can we learn from this?

1. Eating gluten-free when you are sensitive will cause you to feel better. 
2. Going on a gluten-free diet is not enough to ensure that your intestines will heal.
3. Failing to heal your intestines puts you at increased risk for disease and death.
4. Successfully healing your intestines reduces your incidence of death from disease.

Where I see that we are failing the gluten intolerant population is in the narrow focus of eliminating gluten as the only needed treatment.  What the above research proves is that, unfortunately, for over 30% of those diagnosed simply eliminating gluten is insufficient to ensure intestinal healing. 

If patients were educated that healing their intestine would make the difference between contracting disease or not and extending their life expectancy or not, I think they’d be more interested in ensuring that it occurs.

I am not a researcher but my clinic sees hundreds of patients who align with the results of this study completely.  Patients come to see us who have been told that they shouldn’t consume gluten and for the most part they follow that recommendation.  They know that they feel better when they are gluten-free so that is an impetus to not cheat.  When they do cheat they know that they’ll “pay” for it but they still do so fairly regularly. 

Why do they cheat?  Because they believe that the diarrhea, headache, bloating, etc is temporary and that when it goes away they are “fine” again.  Their thought process is not unreasonable, it’s just wrong!

If each patient was educated that cheating created intestinal destruction that in turn put them on a fast track towards disease and early death, I believe that cheating would take on a whole new perspective.

Patients need this education and they need it often.  Our book “The Gluten Effect” was written with this intention—our patients actually requested it.   They asked for a written reminder of why they should maintain their gluten-free lifestyle.  Later I began taping Youtube videos because other patients preferred a reminder in a video form. 

I’m trying to say this in a few different ways because it is terribly upsetting to meet patients, as I so often do, who have been diagnosed celiac or gluten sensitive and do not follow their diet solely due to ignorance.

After almost 25 years of clinical experience I also know that some people “hear what they want to hear” and doctors with the best of intentions cannot get through to everyone.  But I strongly believe that we could be doing a much better job at enlightenment.

Further, we also need to educate patients about the secondary effects associated with gluten.  When the immune system of the intestine is suppressed, as is the case in the presence of gluten pathology, inhospitable and pathogenic organisms can gain entry into the intestine and remain there.  These organisms may be in the form of bacteria, parasites, amoebas or worms and if they are not identified and eradicated, complete healing of the intestines is all but impossible. 

The good bacteria that are housed in the gut, known as the microbiome or probiotics, make up much of the intestinal immune system.  In gluten intolerant patients this important population of organisms is often insufficient due to the onslaught from gluten and pathogenic organisms.  If the population of these probiotics is not restored to a healthy, robust balance, any attempt to achieve a healthy intestine will be unsuccessful.

Lastly, it is an interesting catch-22 that in order to digest our food we need enzymes and enzymes are made from the nutrients we digest.  This circular pattern is dramatically interrupted in the gluten intolerant patient.  Celiacs in particular suffer from very poor absorption.  It shouldn’t then come as a surprise that augmenting with proper enzymes may be critical for “priming the pump” until proper digestion of nutrients is restored.

Unfortunately I find that few, if any, of these points are made clear to patients who are gluten intolerant.  Most believe they are doing all they need to do simply by maintaining a mostly gluten-free diet.  Nothing could be further from the truth.

To review we need to do the following:

• Maintain a “perfect” avoidance  of gluten
• Test for the presence of pathogenic organisms
• Test for any imbalance of the probiotic organisms
• Evaluate the need for enzymes
• Evaluate for the presence of any other food sensitivities, e.g.  dairy
• Educate the patient until they have a full understanding of the above
• Test to ensure that the intestine is healed