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  • Dr. Vikki Petersen D.C, C.C.N
    Dr. Vikki Petersen D.C, C.C.N

    The 10 Most Common Mistakes People Make When Dealing with Gluten Intolerance

      Journal of Gluten Sensitivity Spring 2012 Issue

    Caption: Image: CC--Chris & Karen Highland

    Celiac.com 02/22/2018 - I am writing this article hoping to help those who have been diagnosed with gluten intolerance but who are still not feeling well, as well as for those who need to be diagnosed or will be in the future.

    Just to clarify our terms, I use 'gluten intolerance' as an umbrella term to encompass both celiac disease and gluten sensitivity.

    I have the privilege of speaking with many individuals, on a weekly basis, who not only live in the locality of my clinic but also those who live across the United States and internationally. Just a few days ago I had phone consultations with individuals living in Shanghai, Philadelphia and Los Angeles.

    My clinic, HealthNOW Medical Center, is a destination clinic where we treat individuals who live at a distance as well as those who live nearby, hence these particular calls. As a result of doing such consultations and receiving responses to my lectures, books, blogs and videos, I have an opportunity to speak with many people and hear their stories.

    Frankly I often wish I had the ability to 'beam them up' utilizing the fictional technology from Star Trek—it would make travel logistics a piece of cake and I'd be able to help more people faster.

    Getting back to reality, I want to review the most common mistakes and misconceptions that I run into with people who are gluten intolerant. These miscues are resulting in ill health both currently and in the individual's future.

    Here's a list of 10:
    1. People who are pretty convinced of their sensitivity based on their own experimentation but who later abandon their own knowledge when a celiac test is negative.

    Discussion: Firstly, they should know that celiac testing is not highly sensitive. If it were, we would be diagnosing more than 5% of the celiacs in this country.

    Secondly, a negative celiac test is NOT an absolute indicator that one doesn't have the disease, it in no way tests for gluten sensitivity, a serious condition affecting likely fifteen times the number of people who have celiac disease.

    Finally, the gold standard test that we utilize here at HealthNow is one that has been established by other researchers to be quite reliable. It is the very test that this person is now ignoring. Namely, eliminating gluten for 30 days to see how you feel. A noticeable improvement in symptoms is a valid test.

    Too often I speak with people who are quite seriously ill. They have ignored, sometimes for years, something they knew to be the truth simply because an insensitive lab test didn't corroborate their own identification of gluten intolerance.

    Don't ignore the knowledge you possess about your body. If you need a lab test to affirm that knowledge, there's always genetic testing for both celiac disease and gluten sensitivity. Entero Labs has a good test for both.

    2. Some people discover they are gluten intolerant by self experimentation or by actually receiving a gluten sensitivity or celiac blood test that has positive results. Unfortunately some doctors have antiquated data regarding these diseases and believe that an intestinal biopsy is needed to confirm a diagnosis.

    Such doctors insist that their patients reintroduce gluten into their diet for a minimum of six weeks and then schedule an intestinal endoscopy and biopsy.

    Discussion: It was once thought that a biopsy was the 'gold standard' for celiac diagnosis. We now know that to be untrue. When I say 'we' I am referring to those in the field who research or who stay on the cutting edge of research. Unfortunately there are many doctors who are not in this category and their lack of current knowledge puts their patients at great risk.

    I cannot tell you how many times I have spoken with individuals who have reintroduced gluten into their diets, despite their knowledge of how sick it would make them, only to get extremely ill, sometimes for months. Worse still, some patients initiated an autoimmune disease due to the reintroduction that we couldn't completely reverse.

    I call reintroducing gluten 'Russian roulette'. Perhaps you can now appreciate why.

    One should NEVER EVER reintroduce gluten once they know they are sensitive to it, regardless of any test result. There is no test that is 'worth' risking your health over, especially not for a biopsy that is very poor at identifying the presence of non-classical celiac disease and gluten sensitivity.

    That brings up some new terminology:
    Classic celiac disease describes the disease as it was originally described as primarily digestive in nature, and associated with destruction of the lining of the small intestine. We now know, through research, that classical celiac forms a minority of celiac cases. Once again, these data are not well known in the medical community, which explains why we miss 95% of those who suffer from the disease.

    Gluten sensitivity is an intolerance to gluten that is not associated with the destruction of the lining of the small intestine but it creates inflammation through the immune system and creates many of the same diseases and symptoms associated with celiac disease. Conservative estimates of the incidence of gluten sensitivity put it at 15% of the population, making it much more prevalent than celiac disease. Assuming other factors, an intestinal biopsy would not be positive in an individual with gluten sensitivity.

    3. Individuals who try the gluten-free diet and find it difficult and decide to limit gluten instead of eliminating it, thinking that less gluten is bound to help.
    Discussion: Unfortunately, whether you have celiac disease or gluten sensitivity, gluten consumption requires a zero tolerance policy. I like to tell patients that consuming gluten is a qualitative factor not a quantitative one. In other words, ANY gluten is problematic.

    It does make intuitive sense that more of a toxic substance is bound to create greater harm than less, but with gluten intolerance that doesn't happen to be the case. It doesn't require much gluten to begin the cascade of inflammation that can create one of the more than 300 diseases and conditions associated with it.

    4. A person does not exemplify the classic symptoms of celiac disease (see point #2 above for a definition) and therefore gets no cooperation from their doctor for appropriate testing.

    Discussion: This scenario can result in many different repercussions. An individual can strongly suspect gluten intolerance based on observing their body's reactions to it, but due to the absence of classic digestive symptoms, their doctor refuses to test them and, worse yet, persuades them that gluten could not possibly be a problem!

    This one frustrates me because the person knows, without question, that gluten is the culprit but they allow a clinician who is operating from a dated knowledge base, to cause them to doubt themselves, and, as a result, the patient damages their health even further.
    I truly cannot tell you how often I hear such stories. These individuals feel completely adrift and helpless because they literally don't know where to turn for help. I'm glad when they find our clinic and we can validate what they know to be true and really get down to work to improve their health.

    5. There are some individuals who cannot 'feel' the effects of cheating and due to this they continue to cheat and eat gluten.

    Discussion: This is a tough one because it is human nature to avoid things that make us feel badly but it's more difficult if there are no obvious effects.

    Someone who has been diagnosed as gluten intolerant is having a reaction to gluten and it is shortening their lifespan and moving them closer to disease, each and every time they cheat.

    In the past, here at HealthNOW, we have used laboratory testing to 'show' patients that their immune system was registering their cheating and thereby (hopefully) convince them that damage is being caused.

    Fortunately a new lab test by Cyrex Labs is due to be released this summer (2012) that will go a step further. This test will reveal if an autoimmune disease is being created as a result of consuming gluten and what part of the body is being targeted.

    We may not 'feel' diseases in the making, so this test will be a wonderful asset to educating patients about what consequences they may be bringing on themselves as a result of their lax diet.

    6. Some people 'cheat' expecting something dramatic to occur within a few hours and when it doesn't they think they are okay to cheat occasionally.

    Discussion: This really is a point of poor education on the part of the doctor, their patient or both. We put in a lot of time with our patients to ensure that they understand that a reaction to gluten can occur within hours or days of ingesting it. We do our very best to ensure that patients understand that a headache or rash (as an example) that appears two days after a gluten 'cheat' is a reaction to that dietary indiscretion.

    We also strive to ensure that they understand that the damage goes way beyond the symptom that they feel. It goes deeper to the degree that they are likely creating a degenerative or autoimmune disease with their lax diet.

    7. I hear too many stories from people who actually received a positive blood test for celiac disease but who were then told by their doctor that the test was not 'for sure' and instead the doctor decided to concentrate on a different disease the patient had rather than prescribe a strict gluten-free diet.

    Discussion: The above may strike you as a little unbelievable. I only wish it was. I don't know if certain clinicians just don't feel comfortable asking their patients to follow a diet that they might not want to follow, or what exactly the issue is. But the above scenario has come up often.

    To add insult to injury the disease process that the doctor has decided to focus on rather than the celiac disease is often a disease CAUSED by gluten!

    I distinctly remember a young adult woman who was told by her endocrinologist that they were going to focus on her diabetes rather than her celiac disease because it would be 'too much' to address both. There is strong research evidence of the correlation between celiac disease and diabetes, not to mention the fact that untreated celiac disease is known to increase the risk of death from all causes.

    8. Individuals with known gluten intolerance let 'peer pressure' cause them to cheat.

    Discussion: You might think that I'm only talking about children here but I'm not. As a matter a fact I often find my younger patients to be quite disciplined. Adults, however, do at times suffer from 'not wanting to be different' or 'not wanting to be rude' and they solve their dilemma by cheating.
    My advice here is to explain to the person urging you to cheat that gluten is like rat poison to you. This works well for those people who say, "Come on, a little won't kill you…". Ask the person how they would feel if you offered them 'just a little' rat poison. Would they take it? After all, it's just a little.

    You get my point. I've been doing this for more than twenty years and patients report that this example does seem to communicate well to others. Feel free to utilize whatever talking points work best for you, but PLEASE, don't let peer pressure damage your good health.

    9. Some people have close relatives they know to have celiac disease or other autoimmune diseases and they don't get tested for gluten intolerance because they're 'afraid to find out' or they don't feel too badly or they just don't know about the strong correlation between gluten intolerance and autoimmune disease.

    Discussion: There's a saying that goes, "What you don't know can't hurt you." Unfortunately that's not true for people with gluten intolerance. Deciding not to get tested doesn't diminish or slow down gluten's degenerative effects.

    Gluten isn't something you can hide from. If gluten intolerance or autoimmune diseases are a part of your family tree I would strongly suggest that you get tested for both celiac disease and gluten sensitivity and if negative, confirm the accuracy or inaccuracy of that test result with a thirty day gluten elimination diet.

    It is that important that you know for sure that you are not part of the genetic predisposition that is present in your family tree.

    10. Patients eliminate gluten due to a diagnosis of gluten intolerance but after initially feeling much better, they begin to feel poorly again and don't know what to do to correct the problem.

    Discussion: This may be the last point on our list but it certainly is not the least important. In fact, when I'm talking with individuals who know they have celiac disease or gluten sensitivity, this is one of the most common complaints I hear.

    Unfortunately the medical profession's sole treatment strategy for celiac disease is gluten avoidance, period. I wish that was enough, but for the vast majority of people it isn't.

    The secondary effects created by gluten intolerance do not remedy themselves when gluten is removed from the diet. Gluten has a devastating effect on the body's immune system and in order to normalize that immune system there are several factors that must be addressed, the most common of which follow:

    a. The presence of pathogenic (disease-causing) organisms. These can be bacteria, parasites, amoeba, etc., but they must be discovered and treated in order to remove excess stress from the immune system and to allow vital healing of the small intestine.

    b. An imbalance of the good bacteria or probiotic population in the small intestine. These probiotics (or microbiome) account for the strength of the immune system and supporting their restoration to a healthy, robust level is critical for the immune system as well as the prevention of disease.

    c. Cross-reactive foods can be part of the patient's diet and these foods can mimic the effects of gluten thereby preventing healing and causing gluten-related symptoms despite a gluten-free diet. These foods are often temporary irritants while the body is healing but we have found some patients who require permanent elimination of some of these foods.

    d. Hormonal imbalance created by the stress on the body that gluten creates is something that must be normalized through natural means in order to regain mental balance, increased energy levels and normalized weight, just to name a few.

    e. Toxic elements including heavy metals and poor detoxification abilities of the body are also a potential hurdle that needs to be overcome when restoring health to someone who is gluten intolerant.

    f. Enzyme and vitamin deficiencies should be evaluated and treated as they are discovered.

    Basically, the stress on the system that gluten has created must be diagnosed and remedied in order for the individual to regain optimal health.

    Addressing these secondary effects is not complicated. It takes the knowledge of what they are, how to correctly test for them and how to effectively treat them, but this is not difficult. The lack of widespread awareness of these factors results in many individuals continuing to suffer despite maintaining their gluten-free lifestyle.

    This just isn't fair and it's something I am passionate about remedying. I hope you found this helpful for yourself, a family member or a close friend. Feel free to contact me if you need assistance. I'm here to help and welcome you to give me a call for a free health analysis. Call 408-733-0400.



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    Going on a decade since a celiac diagnosis with biopsy, and I'm grateful for well written entries I find here. The recipes are often so enticing I can't help but try to replicate them with mixed results.

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    "Addressing these secondary effects is not complicated. It takes the knowledge of what they are, how to correctly test for them and how to effectively treat them, but this is not difficult."This statement seems very misleading and very much like marketing to me. From my understanding, the research just isn't there yet on the secondary effects of gluten intolerance. Chiropractor and Certified Clinical Nutritionist sounds like "quack" to me. Someone making money off of other people's illness. I do agree with most of the article, until she's basically trying to sell her services at the end claiming to do what other people can't.

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    "Addressing these secondary effects is not complicated. It takes the knowledge of what they are, how to correctly test for them and how to effectively treat them, but this is not difficult."This statement seems very misleading and very much like marketing to me. From my understanding, the research just isn't there yet on the secondary effects of gluten intolerance. Chiropractor and Certified Clinical Nutritionist sounds like "quack" to me. Someone making money off of other people's illness. I do agree with most of the article, until she's basically trying to sell her services at the end claiming to do what other people can't.

    Benjamin, I agree. I was excited to read on to find out what and how.. all the correct answers. But nothing, unless you contact her. I'm 4 years diagnosed Coeliac but still very ill with vitamin deficiencies, Irritable Bowel Syndrome, severe peripheral neuropathy, depression, anxiety.. the list goes on. All I´m able to do is take Lyrica, Duloxetine and Tramadol. I wish there was a magic "fix all". But I also wish these mumbo jumbo claims would stop giving us false hope.

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    Going on a decade since a celiac diagnosis with biopsy, and I'm grateful for well written entries I find here. The recipes are often so enticing I can't help but try to replicate them with mixed results.

    I have celiac and I make amazing meals skipping the gluten of course. It is by trial and error. I can eat lasagna one night and the next night I break out in hives. Flare up are only about 1 x a month or maybe 2. Thee are so many recipes for gluten free dishes.

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    I can really identify with the statement by Dr Vikki Petersen -{com'on a little won't kill you!} That very same situation happened to me today and just like every time before I had to tell this friend that I get bad headaches-no thanks!

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    I discovered the gluten sensitivity myself.  My rheumatoid arthritis is now my sleeping dragon instead of my raging dragon.  I was at a point that I could not lift a full glass of water to my mouth to drink or carry my plate to the table.  

    I am very diligent about not getting any gluten including from cross contamination.  My husband has gone gluten free in the house.  My hands swell immediately and my rheumatoid arthritis flares within minutes to hours.

    I have been trimming my trees with a 10 foot ladder and a pole saw.

    I was wondering what are the foods that mimic gluten?

     

     

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  • About Me

    Dr. Vikki Petersen, a Chiropractor and Certified Clinical Nutritionist is co-founder and co-director, of the renowned HealthNow Medical Center in Sunnyvale, California. Acclaimed author of a new book, "The Gluten Effect" - celebrated by leading experts as an epic leap forward in gluten sensitivity diagnosis and treatment. Dr. Vikki is acknowledged as a pioneer in advances to identify and treat gluten sensitivity. The HealthNOW Medical Center uses a multi-disciplined approach to addressing complex health problems. It combines the best of internal medicine, clinical nutrition, chiropractic and physical therapy to identify the root cause of a patient's health condition and provide patient-specific wellness solutions. Her Web site is:
    www.healthnowmedical.com

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    Yvonne Vissing Ph.D.
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    Jefferson Adams
    Celiac.com 02/19/2018 - It's very important that people with celiac disease maintain a gluten-free diet. Still, there has been some data to suggest that some people with celiac disease may be "hyper vigilant" in their approach to a gluten-free diet, and that such extreme vigilance can cause them stress and reduce their overall quality of life. Can a more relaxed approach improve quality of life for some people with the disease?
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    Doctors may want to look toward balancing advocacy of a gluten-free diet with promoting social and emotional well-being for celiac patients. In some cases, allowing a more relaxed approach may increase well-being and, thus, make dietary adherence easier. Obviously, people would need to tailor any relaxation in their gluten-free vigilance to make sure they weren't suffering preventable symptoms or doing themselves any harm.
    Source:
    Dig Dis Sci (2018)

    Yvonne (Vonnie) Mostat, RN
    Celiac.com 03/02/2018 - When I was diagnosed as having celiac disease with severe dermatitis herpetiformis (DH) I was told that the diet was difficult to follow and I would have to be vigilant or Dapsone would not relieve the itching. I suffered abdominal pain, outbreaks of sores, anaemia, and, (big swallow) the horrible bowel disorders. I came out of the dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, on my arms and thighs, along with a slip of paper referring me to the dietician at our local hospital. But that was years ago. My journey has been an ongoing trial of trial and error.
    I was just discharged from hospital again, my third occasion in ICU within the past year. I have been told I am the only person in Langley who can wear that crown, the one of having Methemoglobinemia. {lucky me!}
    This could happen to any celiac with dermatitis herpetiformis who takes Dapsone. And anyone regularly eating packaged meats or bacon, for instance, along with having Zylocaine injections, is at significant risk of methemoglobinemia as well. A person with celiac disease may or may not have dermatitis herpetiformis. Many celiacs go their entire lives without a DH spot on their bodies {you Lucky people}.
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    **A little lesson here on methemoglobinemia:
    Hemoglobin is the molecule in red blood cells that distributes oxygen to the body.
    Methhemoglobinemia can either be inherited or acquired. It is a blood disorder in which an abnormal amount of methemoglobin, a form of hemoglobin, is produced. Methemoglobin cannot release oxygen.
    There are two forms of Methemoglobinemia. The acquired form is caused by exposure to some chemicals and/or drugs and is thought to be more common than those that are inherited.
    Chemicals and drugs that trigger methhemoglobinemia include:
    Anaesthetics such as benzocaine and Xylocaine Benzene Certain antibiotics {including Dapsone and chloroquine} Moi! Nitrites {used as additives to prevent meat from spoiling)!! There are two sub-groups of inherited methemoglobinemia, type 1 and type 2.
    The symptoms of acquired methemoglobinemia include:
    bluish coloring of the skin headache fatigue I did not get "bluish coloring of the skin", even though I was hospitalized on three occasions with this condition and was asked about it repeatedly. I did get full frontal, severe headaches, and I did experience breathlessness when climbing stairs. I had to stop at the top of our the stairs in our home to catch my breath. My most recent admission to the Emergency Department was after such an experience. I was really out of breath, had chest pain, and my headache was so severe that I told my husband that I thought that methemoglobinemia was coming back again.
    I made the mistake of following a physician's instructions - some don't seem to know that this condition can become critical.
    The admissions last year were because I had two of the diagnostic criteria for Type II methemoglobinemia. I had a trapped nerve in my neck and my husband had been trained to give me Zylocaine injections to alleviate severe stabbing pains just above my right eyebrow. (The nerve travels over the head to just above the eye.)
    I had been told that when I was in the throes of a dermatitis herpetiformis outbreak I could go 5 - 4 - 3 - 2 - 1 with Dapsone and Prednisone. On the first day I took 5 tablets, the second day 4 tablets, and so on. If the spots kept re-occurring then I was to follow the same procedure once more.
    When I was discharged last year I was not told to change that protocol. In February, I found myself inundated with dermatitis herpetiformis spots all over the back of my head, backs of my arms and shins. I was conservative in my approach to Dapsone and took only Three Dapsone tablets on two successive days.
    This set me on the path to another hospital admission. I could not climb our stairs without leg pains and becoming breathless. I had frontal headaches and just "did not feel well".
    On one of my last admissions to the intensive care unit, my methemoglobinemia was 29 and the Internist treating me said that if I had sat at home with my oxygen bottle for another week my methemoglobinemia scale could have climbed to 35 which usually means death.
    What to do if you develop the same symptoms: Call your health care provider or emergency services (911) immediately if you have severe shortness of breath and you have previously experienced methemoglobinemia.
    Prevention: Genetic counseling is recommended for couples with a family history of methemoglobinemia who are considering having children.
    After this most recent outbreak of DH I was determined to find out what had caused this last admission to hospital. It was not fun to have my blood drawn daily. Neither was it fun to have the phlebotomist coming in to draw blood gases from my wrist (ouch!) also daily. It was scary when they told me that my hemoglobin was declining daily and when it hit 80 they started the IV drip of two units of packed red cells again.
    They did not do the Methylane Blue flushing during this admission because my methemoglobin was 11, not 17 or 29. Methylane Blue is a poison and they had to check with St. Paul's Hospital in Vancouver in order to determine the amount to be used on this little body. Plus they cannot keep doing this poisonous flushing every nine months. I was told this by a specialist wearing his sternest facial expression, obviously in order to scare me.
    Who knows what amounts still stay in the system? Methylene blue may be dangerous to patients who have or may be at risk for a blood disease called G68PD deficiency and should not be used by them. If you or your child has G6PD deficiency, always tell your health care provider before receiving treatment.
    Another interesting note is that ascorbic acid can also be used to reduce the level of methemoglobin. I don't know much ascorbic acid is required but I intend to find out. Oranges contain ascorbic acid do they not? The normal methemoglobinemia scale is about minus 0.1. Mine seems to stay at about 3.
    This specialist physician also told me that I could no longer increase my dosage of Dapsone. It has to stay at one per day no matter how severe the outbreak. I must also take Cimetidine, a drug that is usually used to control excess stomach acid. It helps to reduce the impact of Dapsone on methemoglobin.
    Dapsone is the dangerous drug for methemoglobinemia, and Zylocaine injections also pose similar dangers. After my admission to hospital last May, I found out that phosphates can also add to the level of methemoglobin. There are phosphates in packaged meats, with lots of those little guys in bacon and cured ham. Were I to double up on Dapsone because of a particularly bad DH outbreak, have a few injections of Zylocaine, then add some back bacon and packaged cold cuts, I might well be back in hospital with elevated levels of methemoglobin.
    This time I also discovered that phosphates are sometimes in chewing gum, malted milk drinks, drinking chocolate, baked beans, instant coffee, curry powder, white pepper, some lipsticks, gravy browning, self basting turkeys, brown rice syrup, supplements and, of course, luncheon meats.
    Fifteen years ago I was told I could use Atarax for the itch. Now they tell me that this drug is not only very sedating, thus slowing the heart down considerably, it is a poison that can cause tardive dyskinesia, a potentially irreversible form of brain damage. Again, fifteen years ago it caused me to experience facial gesticulations, tongue protrusion, hands that trembled and a speech pattern that often defied translation. That was because I was wrongly prescribed Loxapine for the itch, and along with Atarax, it ruined my life forever.
    Misunderstandings persist. Celiac disease can look like Crohn's disease. It can look like colitis. It can look like irritable bowel disease, and because physicians have been taught that celiac disease is very rare and they often simply write it off as irritable bowel syndrome when they cannot find the cause of a GI problem. They forget that it could be celiac disease. It is just under-diagnosed, and peri-menopausal women suffer the most because they are often labeled as "depressive", or worse yet, "neurotic". I was told when working as a nurse that "irritable bowel" often meant "we just don't know".
    The world has yet to define a universal "gluten-free" standard. For international trade purposes, the Codex (WHO - World Health Organization), Committee on Nutrition and Foods for Special Dietary Uses is in the process of revising their standards. At this time they are unable to reach a consensus. {Hey, this has been since 2008 and it's already 2012! What do they do at these Forums?} The Food Allergen Labeling and Consumer Protection Act (FALCPA) has committed to defining "gluten-free" for labeling purposes by 2008. We still do not have a World standard. FDA (Food and Drug Administration) acknowledges that the situation needs to be rectified and it has made a start by including gluten with other major allergens in their ingredient disclosure requirements.
    The greatest progress is among the health declarations on restaurant menus and whole foods markets. Wal-Mart have also cast their lot with this group, establishing entire sections dedicated to gluten-free foods. We are finally starting to get rid of ‘stealth glutens' - those in flavor carriers, binders, fillers and emulsifiers, and used in everything from salad dressings to self-basting turkeys. We have come a long way, but we still have miles to go in reforming the food industry. As a waiter said to my friend when she told him she has celiac disease: "We don't serve fish in our restaurant, in fact we have nothing out of the sea".
    References:
    DeBaun, MR - Frei-Jones M Vichinsky E Hereditary methemoglobinemia in Kliegmann RM, Behrmann RE, Jenson HB, Stanton BF, eds. Nelson Textbook of Pediatrics 19th ed. Philadelphia. PA Saunders, Fernandez Frackelton M Bocock, J. Cyanosis In: Marx JA, Hockberger RS, Walls RM, et al, eds. Rosen's Emergency Medicine Concepts and Clinical Practice 7th ed. Philadelphia, Pa, Mosby Elsevier; 2009, chap, 29. "Keeping Food Safety in the Mix: Food Safety in Grain Based Foods and Bakery Products" Gluten-Free Formulation, Kim Decker

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    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
    Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
    He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
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