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    National Celiac Awareness Month and History of Celiac Disease


    Destiny Stone
    National Celiac Awareness Month and History of Celiac Disease
    Image Caption: National Celiac Awareness Month and History of Celiac Disease

    Celiac.com 04/29/2010 - May is designated as National Celiac Awareness Month. As such, I thought it would be a great opportunity to explore the history of celiac disease. Most people think of celiac disease as a modern day ailment, which predominantly affects  those of European descent and in Westernized societies. However in my research, I found that the best place to start when referencing the history of celiac disease, is actually the beginning of humans.

    In the beginning of humans, known as the Neolithic Period,  humans were hunters and gatherers and primarily survived on fruits, nuts, and meat when available. During the Neolithic Period,  humans evolved and began cultivating plants which quickly led to the agricultural revolution.

    With the agricultural revolution came a myriad of food antigens, such as dairy, eggs and processed grains. It was during this time that celiac disease was born. Some 8,000 years after making its debut, celiac was identified and named by a Greek physician known as Aretaeus of Cappadocia.

    In the first century A.D.,  Aretaeus documented information about, “The Coeliac Affection.” He named celiac disease, “koiliakos” derived from the Greek word for “abdomen”. In his descriptions of celiac Aretaeus stated, “If the stomach be  irretentive  of food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs”.  While a name had been given to the disease, people with celiac still had no idea how to heal from the condition, and were still vastly unaware of the cause for their ailments.

    It wasn't until the early 19th Century that Dr. Mathew Baillie published his observations on celiac disease which he sited as, 'chronic diarrheal disorder causing malnutrition and characterized by a gas-distended abdomen'. In his observations, Dr. Baillie documented that some of his patients appeared to benefit from eating only rice.

    However important Dr. Baillie's findings were, they still went largely unnoticed by the medical community until 75 years later when an English doctor known as Dr. Samuel Gee, came into the scene. In 1888  Dr. Gee was working for the Great Ormond Street Hospital for Children in the United Kingdom when he demonstrated a set of clinical trials performed on children and adults with celiac disease. Dr. Gee was quoted as saying, “To regulate the food is the main part of treatment. The allowance of farinaceous foods must be small, but if the patient can be cured at all, it must be by means of diet.” As an example he sited a very sick child that was fed the best Dutch mussels every day during mussel season. The child thrived during mussel season, but as soon as the season was over, the child regressed and died before the next mussel season.

    In the 1920's, Sidney Hass presented the “Banana diet”. Sydney successfully treated 8 out of 10 children suffering with celiac disease using the banana diet. He claimed to have cured the 8 children that were on the banana diet, but the other 2 children not on the banana diet, died. The banana diet included the elimination of all bread, crackers, potatoes and cereals and for several decades, the banana diet was the only cure for celiac disease.

    Another important marker in the history of celiac disease were the findings by Dutch pediatrician, Dr. Willem Karel Dicke. In 1953 Dr. Dicke wrote his doctoral thesis for the University of Utrecht based on  his observations that the ingestion of wheat proteins specifically, and not carbohydrates in general, were the cause of celiac disease. He was able to exemplify his findings based on bread shortages in the Netherlands during World War II. During the  bread shortages, he found that the health of children with celiac improved tremendously. However, when the allied planes began dropping bread to the Netherlands, the same children quickly deteriorated.

    In the 1960's, it became evident that the best method for testing for celiac disease was to perform a biopsy. However, doctors were urged not to diagnose people as having celiac disease until it was proven that gluten was the cause for the damage. To determine if a patient had celiac disease, a biopsy would be performed to evaluate the damage done to the intestines. The patient would then be put on a gluten-free diet. Another biopsy would then be preformed to determine improvement in the intestines. After improvement the patient would be put back on a gluten diet, and another (3rd) biopsy would be preformed to determine reoccurring damages to the intestine, and thus the presence of celiac disease. This method was used for over 20 years as the best method for testing for celiac disease.

    Then in the 1980's studies by Dr. Stefano Guandalini, showed that the presence of  celiac could be found in 95% of celiac cases by performing  a single biopsy.  In 1990 these findings helped create the new guidelines for celiac testing which  were  approved by ESPGHAN (European Society for Pediatric Gastroenterology). Also during this time, professionals starting recognizing celiac as an autoimmune disease and also began recognizing  the correlation between gluten sensitivity and other autoimmune diseases.

    Here we are now in the year 2010;  thirty years after the medical profession has successfully established the causes, tests and treatments for celiac disease, and thousands of years since celiac first made it's debut. Yet, as far as early diagnosis is concerned, we are still living in the dark ages. In this day and age, knowing what we know about celiac disease, childhood screening for celiac should already be mandatory. It's almost as if, when doctors were told in the 1960's to hold off on celiac diagnosis until they knew undoubtably that  gluten was the cause for damage to intestines, they were never told, 'okay, now it's safe to diagnose for celiac'. Unfortunately, many (if not most) doctors still don't know how to appropriately diagnose patients for celiac disease, and therefor they continue to 'hold off' making celiac diagnoses, or misdiagnose regularly.  Enforcing  mandatory celiac screening in school age children has potential to eliminate the  unnecessary suffering of millions of children and adults worldwide. My dearest hope is that we all get to see mandatory celiac testing in this lifetime.

    If you would like more information on “Celiac Awareness Month,” please check out the links below. The following links are trusted sites that also provide suggestions on how you can get involved and contribute to celiac awareness in your community.

    Celiac Disease Timeline:
    • Agricultural Revolution - celiac disease is born
    • 1st Century A.D.- Aretaeus named celiac, “ koiliakos”
    • 1st Century A. D.- Aretaeus documented“The Coeliac Affection.”
    • 19th Century- Dr. Mathew Baillie published his observations on celiac
    • 1888- Dr. Gee established the correlation between celiac and diet
    • 1920's - Sydney Hass successfully treated celiac patients with “the banana diet”
    • 1953 -  Dr. Willem Karel Dicke confirmed wheat protein to be the cause for celiac disease
    • 1960's - Biopsy established as the most accurate test for celiac
    • 1980's - Dr. Stefano Guandalini established a single biopsy  test for celiac
    • 1990 -  ESPGHAN established new guidelines for celiac biopsy testing
    Sources:

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    North Carolina Governor Declares May Celiac Disease Awareness Month

     

    glutenfreeraleigh.blogspot.com/2010/04/north-carolina-governor-declares-may.html

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    Guest Phyllis Kessler

    Posted

    Interesting article about where and when Celiac Disease all started. I for one was told by a specialist that it began in the late 1700's ...early 1800's when the wheat fields were poisoned by troops and the autoimmune reaction occurred. The time line below suggests something else. Both are interesting theories ....I guess we'll never really know for sure.

    Phyllis

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    Guest Destiny

    Posted

    Thank you Phyllis. I think your point is valid. I have heard of that theory as well. I think more research needs to be done in this field. There are so many myths mixed with facts in the world of gluten, and that leaves us all confused. In fact, both theories may be correct.

    Zach-Great link-thanks for sharing!

    ~Destiny

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    Guest Georgia Hartley

    Posted

    The other interesting thing that I have noticed is while we all understand the connection between all autoimmune diseases and gluten, many people with autoimmune conditions and their doctors do not know that gluten is one of the confounding factors. We need to spread the word and educate them about the celiac/gluten factor. I have heard even educated health professionals poo-poo gluten-free diets because they're ignorant of the connection. So use the gluten-free awareness month to share your knowledge with as many as possible.

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    Guest constitution

    Posted

    I have this problem and do avoid wheat. I have noticed that drinking colostrum helps since it is loaded with high levels of immune boosting properties.

     

    I agree that it can be serious and should be handled. With that said, I have a big issue with the parts of the article that states "My dearest hope is that we all get to see mandatory celiac testing out of in this lifetime." And

    "enforcing mandatory celiac screening in school."

     

    That is a very slippery slope we don't want to go down. The schools have no business in our lives at all except for the education part which they do a poor job at anyways. Any mandatory action by the government is walking on our liberties and rights. The correct opinion would be to explain it to parents and those who feel it's necessary would do it on their own. Mandatory is always a bad idea.

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       Dwayne (celiac since 1957)

      The History Of Celiac Disease Time Line And The Celiac Disease Time line Shown Above Are Awesome.

      The Best I Ever Seen !

                                               d fisher

        1953 -  Dr. Willem Karel Dicke confirmed wheat protein to be the cause for celiac disease (from above).

    Edited by Dwayne
    mistakes in text

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  • About Me

    I diagnosed myself for gluten intolerance after a lifetime of bizarre, seemingly unrelated afflictions. If my doctors had their way, I would have already undergone neck surgery, still be on 3 different inhalers for asthma, be vomiting daily and having chronic panic attacks. However, since eliminating gluten from my diet in May 2009, I no longer suffer from any of those things. Even with the proof in the pudding (or gluten) my doctors now want me to ingest gluten to test for celiac-no can do.

  • Related Articles

    Lionel Mugema
    Celiac.com 06/17/2009 - He stands aloof and watches absent-mindedly as the other children queue up for the food. He remembers his mother’s stern warning and the hunger pangs worsen. He knows the even a morsel of the delicious mouth-watering cake will surely make him ill. Meet Mike, he was born with celiac disease.
    Mike’s parents are well-off and highly educated. According to his mother, Mrs. Kintu, shortly after his birth Mike started showing signs and his parents immediately took him to a European hospital for a check-up.  The doctors did an endoscopic exam and Mike was diagnosed with celiac disease. Mike had to stick to a gluten free diet for the rest of his life. Mike’s life was spared.
    Had Mike been born in a poor family, Mike would have eventually lost his life to celiac disease, just like the increasingly shocking numbers of African infants between the very minor age of 6 months and 4 years that die every year—particularly in the East-African region. The acute lack of awareness and subtle ignorance about the disease leads the devastated parents to think that sorcery or envious neighbors robbed them of their little ones.
    Mike is alive today and maintains a particularly sparse diet and survives on such food as vegetables, rice, beans, potatoes, small quantities of red meat, and fresh fruits. Granted, this may seem like a rather healthy and outright fulfilling diet for an adult, however, as fate would have it, Mike is also lactose-intolerant. Essentially, this means that, in lay-man’s language, Mike is allergic to milk in its natural form and all its by-products.
    Celiac disease is a permanent inflammatory disease of the small intestine triggered by the ingestion of gluten-containing cereals in genetically predisposed individuals. It is a lifelong autoimmune intestinal disorder. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. Celiac disease is unique in that a specific food component, gluten, has been identified as the trigger. Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with celiac disease. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains such as rye and barley must also be eliminated.
    Celiac disease was first described in the second century AD by Aretaeus of Cappadocia, a contemporary of the Roman physician Galen, who used the Greek word “koeliakos”, which means “suffering of the bowels”. However, only in 1888 AD did Samuel Gee of St. Bartholomew’s Hospital give the classical clinical description of celiac disease.
    The cause of celiac disease, also known as celiac sprue, or gluten sensitive enteropathy (GSE), is unknown. Celiac disease occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease.
    Celiac disease displays itself with the following symptoms:

    Recurring bloating, gas, or abdominal pain Chronic diarrhea or constipation or both Bone or joint pain Behavior changes/depression/irritability Vitamin K Deficiency Fatigue, weakness or lack of energy Delayed growth or onset of puberty Failure to thrive (in infants) Missed menstrual periods Infertility in male & female Spontaneous miscarriages Canker sores inside the mouth Tooth discoloration or loss of enamel
    And many others (to see a complete list go to the Celiac Disease Symptoms page).In any case, there is little or no research on this disease in East Africa. The principal ideals behind this article are the commencement of an awareness program, with particular emphasis on celiac disease and any other diseases that are not generally known about in the region. It is important that these are brought to the light and addressed duly by the concerned parties. There is also an urgent need to formally address the problem especially to those that can not possibly afford treatment and are generally ignorant. I am in the process of establishing an awareness campaign concurrently with a patients’ association for celiac disease in East Africa. The association is still in its infant stages and I am appealing for support and any form of assistance.  The name of my association is: Creating Celiac Disease Awareness in Africa.
    Author's Note: The names of the characters in this article have been changed for privacy reasons.



    Jefferson Adams
    Celiac.com 12/23/2011 - A research team recently sought to figure out the basic level of awareness of celiac disease and gluten sensitivity among the general public and trained and untrained chefs, and to compare dining habits of people with celiac disease and gluten-sensitivity to those of the general public.
    In face-to-face interviews, and via internet survey, researchers asked people about their knowledge of celiac disease and gluten sensitivity. They also asked people with celiac disease and gluten sensitivity about their dining habits, in addition to asking chefs about their levels of training and education.
    In all, the researchers surveyed 861 persons from the general public. They found that 47% had heard of celiac disease, 67% had heard of gluten sensitivity, and 88% had heard about peanut allergy.
    They surveyed 790 people with either celiac disease (82%, n=646), or gluten sensitivity (18% n=144).  The vast majority of respondents to the study were female, making up 83% of those with celiac disease, and 90% of those with gluten sensitivity.
    Those with celiac disease and gluten sensitivity were older than the general public respondents, 57% of the patients were over 45 years of age compared with just 32% of the general public respondents (p< 0.0001).
    The 200 chefs who were surveyed showed a much higher awareness of celiac disease, with 77% of chefs having heard about celiac disease compared to less than half of the general population. Interestingly, many more people in both groups had heard of gluten sensitivity, with 89% for chefs, and 67% for the general population, respectively.
    Still, the chefs, like the general public, had a tendency to underestimate celiac disease was underestimated by both chefs (56%) and the general public (69%) while peanut allergy was overestimated by 55% of the general public and 60% of chefs.
    People with celiac disease may not be surprised to learn that a large majority, 63% of the 790 following a gluten-free diet reported avoiding restaurants more, and eating take-out food much less often than the general public.
    One important finding was that the level of training had a great deal of impact on a chef's knowledge of celiac disease. Overall, trained chefs were much more likely to be familiar with celiac disease compared with untrained chefs (83% vs. 52%)
    Also, there was a direct connection between the average price of a meal and the likelihood that the chef was familiar with gluten-free concerns. The more expensive the restaurant, the more likely the chef was familiar with celiac disease and gluten-free concerns. Restaurants with an average check below $25 had a 64% rate of awareness, while the rate for restaurants with a check over $65 had a 94% awareness of gluten-free concerns (p<0.0001).
    In general, the survey team was impressed by what they saw as a fairly high degree of awareness of gluten-related concerns. Interestingly, both trained and untrained chefs were more likely to have heard of gluten sensitivity than of celiac disease.
    Most people with celiac disease avoid restaurants, and eat out the home far less often than the general public. Still, many do eat out, and they do so by making sure they get their needs met.
    The simple take away is that chefs are generally pretty aware of gluten-intolerance and celiac disease, and that chefs with better training and higher-end restaurants are more likely to deliver a gluten-free dining experience.
    As always, communication goes a long way toward ensuring a pleasant and successful restaurant experience for anyone with celiac disease. Knowing your needs, sharing your concerns, and asking your server and/or chef about their gluten-free options and preparation methods can go a long way toward a smooth gluten-free dining experience.
    Source:
    http://www.journals.elsevierhealth.com/periodicals/yeclnm/article/PIIS1751499111000527/fulltext

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    • Maureen and Cyclinglady, Of the foods you listed. . .. I would focus on the Chocolate. Chocolate has Tyramine in it and it could/can cause rashes that  might be confused for DH. Sometimes Tyramine get's confused for/in high sulfite foods as triggers. Here is a great overview article on this topic. http://www.chicagotribune.com/lifestyles/health/sc-red-wine-headache-health-0608-20160525-story.html you might also have trouble with headaches if it tyramine is causing you your trouble. People who have trouble Tyramine might also have trouble with consuming cheeses. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738414/ As for the Milk causing/triggering your DH don't rule Adult onset dairy allergy. While rare it does occur in the literature/research when you search it out. I am including the research here in the hopes it might help you or someone else entitled "Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells" https://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.1996.tb04640.x It is generally thought most of grow out of a Milk Allergy at approx. 3 years old. But for some lucky one (I guess) we never do apparently.  (I speak for my friend on this board JMG).  He found out he was having trouble with dairy as an adult better never realized until about 6 months ago. With delayed onset allergies it is often hard to tell if it (allergen) is effecting us because we might not associate it with our dairy consumption because it might happen a day or two latter. See this WHFoods article about food allergens/sensitivies.  It is very long/exhaustive but it is very helpful if you have time to study it in more detail. http://www.whfoods.com/genpage.php?pfriendly=1&tname=faq&dbid=30 I will quote some key points for your information. Symptoms of Food Allergies "The most common symptoms for food allergies include vomiting, diarrhea, blood in stools, eczema, hives, skin rashes, wheezing and a runny nose. Symptoms can vary depending upon a number of variables including age, the type of allergen (antigen), and the amount of food consumed. It may be difficult to associate the symptoms of an allergic reaction to a particular food because the response time can be highly variable. For example, an allergic response to eating fish will usually occur within minutes after consumption in the form of a rash, hives or asthma or a combination of these symptoms. However, the symptoms of an allergic reaction to cow's milk may be delayed for 24 to 48 hours after consuming the milk; these symptoms may also be low-grade and last for several days. If this does not make diagnosis difficult enough, reactions to foods made from cow's milk may also vary depending on how it was produced and the portion of the milk to which you are allergic. Delayed allergic reactions to foods are difficult to identify without eliminating the food from your diet for at least several weeks and slowly reintroducing it while taking note of any physical, emotional or mental changes as it is being reintroduced." Here is their information on Tyramine's. Tyramine "Reactions to tyramine (an amino acid-like molecule) or phenylalanine (another amino acid-like molecule) can result from eating the following foods: Fermented cheeses Fermented Sausage Chocolate Sour Cream Red wine Avocado Beer Raspberries Yeast Picked Herring Symptoms of tyramine intolerance can include urticaria (hives), angioedema (localized swelling due to fluid retention), migraines, wheezing, and even asthma. In fact, some researchers suggest that as many as 20 percent of migraines are caused by food intolerance or allergy, and tyramine intolerance is one of the most common of these toxic food responses." Here is an old thread on tyramine and especially how it can trigger headaches. https://www.celiac.com/forums/topic/95457-headache-culprit-is-tyramine/ I would also suggest your research a low histamine food diet.  Rashes/hives etc. can be triggered my disregulaton of histamine in the body. The other thing in chocolate that might be causing your problems is Sulfites. Here is a website dedicated to a Sulftie allergy. http://www.allergy-details.com/sulfites/foods-contain-sulfites/ Chocolate bars are on their list of sulfite contaning foods but probably most noted in dried fruits and red wine. Knitty Kitty on this board knows alot about a sulfite allergy. I want to go back to the possible dairy allergy for a second as a possible trigger. . .because it has been established as connected to DH . . .it is just not well known. Here is current research (as I said earlier) most dairy allergies are studied in children but it does occur in approx. 10 pct of the GP unless your of Asian descent where it is much more common. https://www.ncbi.nlm.nih.gov/pubmed/29555204 quoting the new research from this year on children. "When CMP (Cow's Milk Protein) was re-introduced, anti-tTG increased, and returned to normal after the CMP was withdrawn again." and if adults can also (though rarely) it seem develop "Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells" (see research linked above) as the research shows  you should at least trial removing dairy from your diet if you haven't already and see if your DH doesn't come back when you re-introduce it. It just takes 15 or 20 years for medical doctor' to incorporate new research/thinking into clinical practice.  And note the research on this happening in adults is 20+ years old and as far I know doctor's . . . are not aware of this.  I know I wasn't until recently and I research things alot of to help myself and my friends. But I know you can't do what you don't know about.  So this is why I am trying to share what I learned so that other might be helped and this research might not  lay hidden another 20 years before doctor's and their Celiac/DH patients become aware of it. And if it helps you come back on the board and let us know so it can help others too! If it helps you it will/can help someone else! if they know it helped you then they will/can have hope it might help them too and why I share and research these things for others'. . . who don't know or don't have time to research this for themselves. I hope this is helpful but it is not medical advice. Good luck on your continued journey. I know this is a lot of information to digest at one time but I hope at least some of if it helpful and you at least have a better idea of what in your chocolate could be causing your DH (idiopathic) as the doctor's say (of an unknown cause mild) DH symptom's. Or at least it is not commonly known yet that Milk can also cause trigger (DH) in children and adults who have a Milk allergy undiagnosed. . .because we don't don't typically think  or associate it with adults like maybe we should if we are not of Asian descent. Maureen if this doesn't help you you might want to start a thread in the DH section of the forum. As always  2 Timothy 2: 7   “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
    • I hooe you can get some answers with your new GI doc.
    • Many of us deal with doctor issues and diagnosis, you got a really bad draw indeed. Most doctors dismiss Celiac as their is no money in the cure for them IE a gluten free diet and not medications.

      Keep up updated on your new doctor and testing, good to see you finally found one that listens and can help, I got through on doc #5 I think it was.
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