• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Member Statistics

    80,767
    Total Members
    3,093
    Most Online
    Shenanigans1027
    Newest Member
    Shenanigans1027
    Joined
  • 0

    Was JFK the Victim of an Undiagnosed Disease Common to the Irish?


    Scott Adams


    Ads by Google:




    ARTICLE CONTINUES BELOW ADS
    Ads by Google:



    By Peter H.R. Green, MD
    Dr. Green is Professor of Clinical Medicine, Director of the Celiac Disease Center at Columbia University College of Physicians and Surgeons.

    This article originally appeared at http://hnn.us/articles/1125.html and is reprinted here by permission of Richard Shenkman.

    Celiac.com 11/27/2002 - New revelations that have appeared in the New York Times and the Atlantic Monthly, about John F. Kennedys health have raised questions about his physical condition during his presidency. Robert Dallek, in the December Atlantic Monthly, described in The Medical Ordeals of JFK long standing medical problems that started in childhood. In Kennedys adolescence, gastrointestinal symptoms, weight and growth problems as well as fatigue were described. Later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine and Addisons disease. Chronic back problems, due to osteoporosis resulted in several operations and required medications for chronic pain. He was extensively evaluated in major medical centers including the Mayo Clinic and hospitals in Boston, New Haven and New York. Among the multiple diagnoses were ulcers, colitis, spastic colitis, irritable bowel syndrome, and food allergies. His medications included corticosteroids, antispasmodics, Metamucil and Lomotil. However it is not clear that his physicians obtained a definitive diagnosis.

    Review of this medical history raises the possibility that JFK had celiac disease. Celiac disease is caused by ingestion of gluten, which is the main protein component of wheat and related cereals, rye and barley. The small intestine develops villous atrophy that results in difficulties in the absorption of nutrients. Diarrhea and abdominal pain are common symptoms. Elimination of gluten from the diet results in resolution of the inflammatory condition in the intestine and the associated symptoms and prevention of the complications of the disease. A life-long gluten free diet is then required. People with celiac disease, providing they adhere to the diet have normal longevity.

    Celiac disease can present at any age. In infancy and childhood it may cause chronic diarrhea, abdominal pain, and growth, behavioral and development problems. In older individuals the presentation of celiac disease is frequently due to the development of complications of the disease. These include anemia, osteoporosis, skin rashes or neurological problems. The neurological problems include neuropathy, epilepsy, ataxia (balance disorders) and migraine. While the disease is more common in females, men are affected as well. Osteoporosis is common in patients with celiac disease, men often are more severely affected than women. Gastrointestinal symptoms in celiac disease persist for many years prior to diagnosis and are often attributed to an irritable bowel syndrome or spastic colitis. Patients typically see many physicians prior to the diagnosis of celiac disease.

    Autoimmune disorders occur more frequently in patients with celiac disease than the general population by a factor of ten. Frequently the autoimmune disorder assumes greater clinical significance than the celiac disease and as a result is diagnosed first. The associated autoimmune disorders include thyroid dysfunction, psoriasis, dermatitis herpetiformis (an intensely itchy skin rash), Sjogrens syndrome, and Addisons disease. Relatives of patients with celiac disease have a greater risk, not only of celiac disease, but also of other autoimmune diseases.


    THE IRISH CONNECTION

    Celiac disease was formally considered a rare disease of childhood. It is now recognized as being very common in those of European descent, one of the most common genetically determined conditions physicians will encounter. Recent studies have demonstrated the country with the greatest prevalence to be Ireland. In Belfast one in one hundred and twenty two have the illness.

    The prominent familial association of the disease indicated by the occurrence in one of ten first degree relatives and in 80 percent of identical twins points to a genetic component of the disease. However the actual genes responsible for the disease have not been discovered though there are many groups working on the problem. It is known that there is a strong association with specific HLA genes that are required for the disease to occur, but are themselves not sufficient for the disease to be manifested.

    Kennedys Irish heritage, long duration of gastrointestinal complaints (since childhood), diagnosis of irritable bowel syndrome and migraine, presence of severe osteoporosis, and the development of Addisons disease all lead to a presumptive diagnosis of celiac disease. Kennedy was given steroids for his problems. Steroid use is associated with the development of osteoporosis and Addisons disease. However steroids were initially used in clinical practice in the 1930s and 1940s for many indications, not considered appropriate now. In the case of Kennedy, if he did in fact have celiac disease, the steroids would have suppressed the inflammation in the intestine and reduced his symptoms, making diagnosis of celiac disease less likely to be established. The occurrence of Addisons disease in his sister, however, argues for a familial cause of his Addisons disease, rather than an iatrogenic one.

    Could celiac disease have been diagnosed in Kennedy during his lifetime? Possibly. The disease was first recognized in 1887 as well as its treatment with an elimination diet. It was recognized to occur at all ages. However, it was not until the 1950s that the shortage of bread during the Second World War and its subsequent reintroduction in Holland prompted recognition of the role of wheat as a cause of this malabsorption syndrome. While it was in the 1970s that physicians became aware of the more subtle presentations of the disease. The diagnosis of celiac disease initially requires consideration that it may be present in an individual patient, even now many physicians do not consider the diagnosis.

    It would however be possible to diagnose celiac disease in JFK now, if biopsies taken during his life, or autopsy material of the small intestine had been archived and was now made available. Frozen blood samples could also provide diagnostic material for there are serologic tests now available that are sensitive and specific for the condition..

    A diagnosis of celiac disease, if it had been made could have been treated by diet alone. This would have prevented all the manifestations of the disease and its complications. Because of the strong genetic component of celiac disease, Kennedys family may well be interested in obtaining the diagnosis as well.

    0


    User Feedback

    Recommended Comments

    Guest H Auton

    Posted

    Were there not others in the family with problems that could be related to coeliac disease? e.g. a sister with learning disability?

    Share this comment


    Link to comment
    Share on other sites

    Good read there is no one famous with Celiac to idolize for young guys I think besides perhaps Kennedy.

    Share this comment


    Link to comment
    Share on other sites

    I really like this article. I have Irish heritage...and "IBS," migraines, asthma, skin problems, joint pain, etc. Makes me wonder. Thank you for this. It gives me hope that maybe I'll find the answer.

    Share this comment


    Link to comment
    Share on other sites

    Thank you! My family didn't take my celiac diagnosis seriously until I was able to tell them about JFK and the possible connections.

    Share this comment


    Link to comment
    Share on other sites


    Your content will need to be approved by a moderator

    Guest
    You are commenting as a guest. If you have an account, please sign in.
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • Ads by Google:

  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

  • Popular Contributors

  • Who's Online   22 Members, 0 Anonymous, 522 Guests (See full list)

  • Related Articles

    Scott Adams
    by Marshall Chrostowski of Gluten Biotech Watch
    Question: What is biotechnology?
    Short Answer: Biotechnology is a set of scientific tools and principles designed to alter living material at the molecular-genetic level by recombining DNA fragments of genes to create organisms with altered, predictable properties. Organisms that receive genetic material from an unrelated organism are said to be transgenic and are referred to as genetically modified organisms (gmos).
    Question: Is food grown from gmos safe to eat? Short Answer: The answer has several parts.
    Scientists cannot yet assure us that gm food is totally safe to eat because such foodstuffs have not been tested using scientifically acceptable procedures over sufficient time. Caution is recommended because of theoretical issues related to creation of novel large proteins and associated biochemicals that are often associated with food allergenicities. Potential problems may arise from the introduction of exotic genes from viruses and bacteria not commonly part of the human diet, especially those genes producing toxins against crop pests and diseases. The potential adverse effects of synergy between gmos and traditional foods and medicines must be carefully considered by anyone with allergies and autoimmune issues. The Precautionary Principle should apply in relation to these gmos because it should be the responsibility of the biotechnological industry to demonstrate safety to humans and the environment prior to public acceptance and distribution. Question: Should a sufferer of food intolerances be concerned with the genetic modification of other foodstuffs?
    Short Answer: Scientific studies are confirming unforeseen increases in the allergenicity of some gm foods and some instances of reduced food values in altered crops. Most media reports, however, are anecdotal and should not be accepted as proof. Just remember that children are most susceptible to increased allergens. So, be forewarned.
    Question: Should folks with food intolerances and compromised immune systems be concerned about other trends in food production?
    Short Answer: Current research is directed at introducing genetic materials into conventional crops to produce pharmaceuticals and industrial components. Of more immediate concern are the numerous environmental estrogens (called endocrine disrupters) let loose on the population in the form of pesticides and other industrial products. Gmo research and development employs additional estrogens as regulators of transgenic changes. So there is the potential danger of estrogen overload on children in pre puberty.
    Action #l: Demand responsible labeling of food and medicines as GLUTEN FREE, not only processed food but also materials added post-harvest to "fresh" food.
    Action #2: Demand that genetically modified organisms and products be withdrawn from circulation and a rigorous, scientific evaluation of these materials be completed before any possible reintroduction.
    Action #3: In the interim demand immediate labeling as GMO FREE of all gmo products to allow the consumer to make informed choices.
    Action #4: Demand from your local markets the opportunity to buy certified organic food, and that markets list what fruit and vegetables have been treated with waxes, fungicides and other post-harvest protective materials.
    Action #5: Demand from the medical establishment greater awareness of and responsiveness to celiac and related diseases and syndromes and more aggressive research and development projects aimed at alleviating acute and chronic suffering by our impacted population.
     

    Scott Adams
    The following is a post by Donald D. Kasarda (kasarda@pw.usda.gov) that was written to Michael Coupland of Kellogg (Cereal Company).
    Dear Michael,
    I have been asked to comment on your reply to Bev Lewis about the absence of gluten (or the barley equivalent) in malt flavoring. I am a cereal chemist who is sometimes asked for advice in regard to the gluten proteins as they relate to celiac disease by celiac patient organizations. I have provided advice to Kellogg in the past in regard to safe processing of a rice cereal (Kenmei) in order to avoid contamination. Kenmei has since been discontinued by the company.
    While it is possible that the malt flavoring you refer to is free of all harmful peptides, your statement that because the flavoring is a water wash of malt, it is free of gluten, is not in itself completely satisfying for the following reasons.
    At present, we are pretty sure that peptides derived from gliadin proteins that consist of as few as 12 amino acids can be toxic. These small peptides are sometimes quite water soluble as well. When malt is prepared by germination of barley, hydrolytic enzymes break down the harmful (to celiac patients) hordein proteins. It is possible that some of the resulting peptides are small enough to be water soluble, but large enough to retain harmful activity in celiac disease. A peptide of molecular weight no greater than about 1300 could potentially still be active in celiac disease.
    Therefore, the water wash could pick up harmful hordein peptides. Furthermore, unless the wash was centrifuged or filtered to clarify it, it could pick up small amounts of suspended particles that could contain hordein proteins or fragments of them that resulted from the protease action during germination.
    The amounts of harmful peptides or proteins that end up in a malt-flavored cereal might well be insignificant for celiac patients, for, after all, the amounts in the wash are likely to be small and the amount of flavoring added to the cereal is probably a small part of the total solids. My main point is that some transfer of harmful peptides to the water wash could occur and unless your researchers have studied this question and have some basis for concluding that the amounts are insignificant (other than because a water wash was used), perhaps it would be best to indicate that some uncertainty still exists.
    Incidentally, my suspicion is that there is not enough of the harmful peptides in Rice Krispies to cause harm to celiac patients, but for me it is only a suspicion in that I know of no experimental measurements or calculations in regard to the question and we still do not have a really solid indication of how little of the harmful proteins or peptides is OK for celiac patients on a daily basis.
    Sincerely,
    Don Kasarda

    Gryphon Myers
    Celiac.com 11/07/2012 - When it comes to whether or not mothers with celiac disease should breastfeed their children, there has been a fair amount of conflicting information in circulation. Some studies have found that breastfeeding renders a protective role when combined with a 'windowed' introduction of gluten, but others have shown no such protective effect. Furthermore, some researchers question the longevity of the protection offered. An international project called PREVENTCD seeks to boil down current information from a number of studies, in order to produce a primary prevention strategy for infants at risk of developing celiac disease.
    The PREVENTCD project aims to answer the following questions:
    Breastfeeding (BF) and celiac disease (Does any BF reduce the risk of developing celiac disease in early childhood? Is there a difference between any or exclusive BF in regard to risk reduction? Is the duration of BF related to the risk of developing celiac disease?). BF at the time of gluten introduction and celiac disease (Is gluten consumption while being breastfed important for risk reduction?). Timing of gluten introduction (Is age of gluten introduction important to the risk of developing celiac disease?). Amount of gluten at weaning (and later) and celiac disease (Is the amount of gluten ingested an independent risk factor for the development of celiac disease in early childhood? Is there a threshold level of gluten consumption for developing celiac disease in early childhood?). Does the administration of microbial supplements (probiotics) and/or substrates (prebiotics) has an effect on the risk of celiac disease? For this report, a collection of studies (preference given to randomized controlled trials) involving infants at risk of developing celiac disease and breastfeeding practices were examined independently by a number of researchers. Inclusion criteria were applied independently and quality of each study's data was examined using the Cochrane Collaboration's tool for assessing bias risk. Meta-analysis was planned, but outcomes and definitions were inconsistent.
    29 studies were initially identified. Of those, 12 studies were included in the analysis. Collating the data from each, the questions were answered as follows:
    Effect of Breastfeeding on Celiac Disease: Some studies show a protective effect of breastfeeding children at risk of developing celiac disease, but some show no effect and no studies show a long-term preventative effect. Thus, the main controversy surrounding breastfeeding celiac children is whether it has a significant long-term effect. This should not be interpreted as evidence that suggests breastfeeding does not render long-term protection, but rather that no studies have adequately addressed the question yet (partially due to methodological challenges). Studies showing protective effect have postulated that the protection offered by breastfeeding is the result of introducing cytokines, as well as IgA antibodies, lactoferrin and other enzymes (as well as small amounts of gluten) that contribute to passive immunity by reducing the number of infections in the gut. Data from the studies also suggests that longer breastfeeding periods have a more pronounced effect on celiac disease risk. However, there was no evidence to suggest that 'pure' breastfed children were at any less risk than those both breastfed and formula fed.
    Effect of Breastfeeding at Time of Gluten Introduction on Celiac Disease: Data from five case-control studies suggests that breastfeeding at the time of gluten introduction is associated with lower risk of celiac disease compared to formula feeding. The quality of the data is questionable, as most feeding patterns were gathered retrospectively. Again, it is also unclear whether the protective effect merely 'postpones' celiac disease. One study also showed no effect of breastfeeding at the time of gluten introduction on celiac disease autoimmunity (effect on biopsy-proven celiac disease is unknown).
    Timing of Gluten Introduction: While the role of age at time of gluten introduction in determining celiac disease risk is unclear, data from observational studies suggests that early and late introduction of celiac disease may increase risk of celiac disease. Early is defined as before 3 months, while late is defined as later than 7 months. One randomized controlled trial showed that gluten introduction after 12 months might be beneficial, but sample size and unclear risk of bias make this finding inconclusive.
    Effect of Amount of Gluten at Weaning (and Later) on Celiac Disease: One study documented that introducing gluten in large amounts versus small or medium amounts increased celiac disease risk. This echoes old data collected during Sweden's 1980s celiac disease epidemic, but it is unclear whether this is a dose-response effect or a threshold effect. However, a recent study proposes a quantitative model for a HLA-DQ2 gene dose effect in the development of celiac disease.
    Administratioin of Probiotics and/or Prebiotics: There have been no studies examining the effect of probiotics and prebiotics on celiac disease risk in infants, but it is reasonable to assume that manipulating gut microbiotia in early stages of life could affect celiac disease risk. Future studies should investigate this possibility.
    In conclusion, there are still a lot of holes in the data, but what we know thus far tells us that:
    Breastfeeding seems to offer some form of protective effect (whether long or short term) on celiac disease risk in infants. Longer breastfeeding periods seem to offer more protection, but some formula feeding doesn't appear to affect celiac disease risk. Gluten should be introduced in small quantities between 4 and 7 months. Gluten should only be introduced while/if the infant is breastfeeding. The committee on Nutrition of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) believes that this strategy map will not only decrease rates of celiac disease, but type 1 diabetes, mellitus and wheat allergy as well.
    Most of these recommendations have been in place for a while and there is a lot of room for more data, but in the meantime, this is probably the safest strategy for feeding infants who are at risk of developing celiac disease.
    Source:
    http://www.medscape.com/viewarticle/771287?src=mp

    Jefferson Adams
    Celiac.com 03/08/2013 - Gluten-free foodies in the Chicago/Evanston area were faced with the closure of one of their best gluten-free bakeries, until a good samaritan stepped forward with a business plan and a check.
    This past Christmas looked bleak for Rose O'Carroll. The owner of Rose's Wheat Free Bakery and Cafe in Evanston, Illinois was slated to close her doors in the face of a $100,000 debt, until she struck a last minute deal with Camping World CEO Marcus Lemonis to keep open the struggling business.
    O'Carroll first met Lemonis a year and a half ago, when he began eating gluten-free by choice. After learning through a news article about the bakery's financial troubles, Lemonis contacted O'Carroll and pledged to help out.
    O'Carroll has said that the bakery's financial troubles are due mainly to high labor costs necessary to produce high-quality gluten-free products.
    After talking with O'Carroll, Lemonis realized that some easy and fast fixes can make the bakery profitable. One of them is new equipment that will speed production of the bakery's most popular items.
    Lemonis says he doesn't believe in "making money by cutting jobs." Rather, he says he believes in "making money by increasing sales." With that in mind, he has written a check for $200,000 and established a working capital fund of about $150,000. He emphasizes that every worker will remain on the job.
    Lemonis calls O'Carroll the epitome of a great baker and a great mind when it comes to baking, though, he adds, she may not have the best business acumen.
    The rescue of Rose's Wheat Free Bakery and Cafe is not Lemonis' first brush with chartable business efforts.
    As head of the world's largest RV owners association, Lemonis has appeared on "Secret Millionaire," the ABC show in which business executives provide surprise financial help to struggling communities. He has also appeared on Donald Trump's show, "Celebrity Apprentice."
    Additionally, Lemonis recently purchased In the Raw, a gluten-free restaurant in Highland Park.

  • Recent Articles

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

    Jefferson Adams
    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    Ingredients:
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?

    Jefferson Adams
    Celiac.com 07/12/2018 - Previous research has shown that the oral administration of Bifidobacterium infantis Natren Life Start super strain (NLS-SS) reduces of gastro-intestinal symptoms in untreated celiac disease patients. The reduction of symptoms was not connected with changes in intestinal permeability or serum levels of cytokines, chemokines, or growth factors. Therefore, researchers suspected that the reduction of symptoms might be related to the modulation of innate immunity.
    To test that hypothesis, a team of researchers set out to assess the potential mechanisms of a probiotic B.infantis Natren Life Start super strain on the mucosal expression of innate immune markers in adult patients with active untreated celiac disease compared with those treated with B. infantis 6 weeks and after 1 year of gluten-free diet.
    The research team included Maria I. Pinto-Sanchez, MD, Edgardo C. Smecuol, MD, Maria P. Temprano,RD, Emilia Sugai, BSBC, Andrea Gonzalez, RD, PhD, Maria L. Moreno,MD, Xianxi Huang, MD, PhD, Premysl Bercik, MD, Ana Cabanne, MD, Horacio Vazquez, MD, Sonia Niveloni, MD, Roberto Mazure, MD, Eduardo Mauriño, MD, Elena F. Verdú, MD, PhD, and Julio C. Bai, MD. They are affiliated with the Medicine Department, Farcombe Family Digestive Health Research Institute, McMaster University, Hamilton, ON, Canada; the Small Intestinal Section, Department of Medicine and the Department of Alimentation at Dr. C. Bonorino Udaondo, Gastroenterology Hospital and Research Institute at the Universidad del Salvador in Buenos Aires, Argentina.
    The team determined the numbers of macrophages and Paneth cells, along with the expression of a-defensin-5 expression via immunohistochemistry in duodenal biopsies.
    Their results showed that a gluten-free diet lowers duodenal macrophage counts in celiac disease patients more effectively than B. infantis, while B. infantis lowers Paneth cell counts and reduces expression of a-defensin-5.
    This study documents the differential innate immune effects of treatment with B. infantis compared with 1 year of gluten-free diet. The team calls for further study to better understand the synergistic effects of gluten-free diet and B. infantis supplementation in celiac disease.
    Source:
    J Clin Gastroenterol