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  • Dr. Tom O'Bryan
    Dr. Tom O'Bryan

    Why Don’t I Feel Great on a Gluten-Free Diet: Sensitivity or Cross-Reactivity?

      Journal of Gluten Sensitivity Spring 2011 Issue. NOTE: This article is from a back issue of our popular subscription-only paper newsletter. Some content may be outdated.

    Caption: Image: CC--Alex Guerrero

    Celiac.com 02/15/2019 - Answer this question honestly for yourself. Not for me, or for anyone else, answer this question honestly for yourself.

    On a scale from 1 to 10, if 10 is the amount of energy you should have in life, and 5 is half as much… now, hold on a minute, one more thing, take your will power out of the equation… what’s your body energy? If you weren’t pushing yourself, motivating yourself to continue on, what is the level of energy your body is operating on? On a 1-10 scale?

    Most of us have a number we come up with right away as the first part of the question is being asked: “Oh, I’m an eight or a nine”. But when I ask patients to take their will power out of the equation, many will have a look come across their face, almost like a balloon being deflated a little, and they’ll say “three” or “five”. Rarely do I have someone who answers eight or above. Where is this fatigue coming from? Many clinicians will tell you one of the most common symptoms of food allergies and food sensitivities is fatigue.

    Although the majority of individuals with gluten sensitivity and/or celiac disease experience substantial improvement within the first few weeks of gluten withdrawal, between 7% and 30% continue to have symptoms or clinical manifestations suggestive of celiac disease despite being on a gluten-free diet(1). That’s called non-responsive celiac disease--the body is not responding the way it should.

    Why is that?  And why is it that so many of us do not experience the amount of energy we should feel given that we’re being so careful to avoid exposure to gluten, a food that is toxic to us? We’ll look, in this article, at a common, hidden source of this lack of vitality and lack of response to a gluten-free diet.

    Non-responsive celiac disease (NRCD) has been defined as: 
    referral to a clinician specializing in celiac disease for the evaluation of a lack of response to a gluten-free diet, 
    failure of clinical symptoms or laboratory abnormalities typical of celiac disease to improve within six months of gluten withdrawal, recurrence of symptoms and/or laboratory abnormalities typical of CD while on a gluten-free diet. 

    In one study, 12 identified causes of NRCD, the most common cause was (inadvertent) gluten exposure, accounting for 36% of patients(2). OK, that’s understandable.

    But what about the other 64% who did not have an inadvertent exposure to wheat or similar grains? What is the cause of their NRCD?  An all-too-common contributor to NRCD is sensitivity to other foods commonly consumed on a gluten-free diet causing a very similar inflammatory cascade in the intestines. Another contributor is cross-reactivity of antibodies against gluten with exposure to other foods. 

    On a gluten-free diet, we may substitute other grains in much larger amounts than we may have eaten when we were on a gluten-containing diet. In some cases, this may initiate an immune response very similar to that caused by eating gluten.

    Cross-reactivity is the ability of an antibody to bind to similar-looking parts on different proteins called epitopes. This phenomenon is also known as molecular mimicry. In such a case the immune system confuses one food for another. Therefore, certain foods appear, to the immune system, sufficiently similar to a reactive food to initiate an immune response.  

    Patients with gluten sensitivity and celiac disease may be sensitized to a broad range of dietary proteins from different foods due to cross-reactivity.

    Below is a drawing of what happens when the gliadin protein molecule from wheat (labeled #1) fits into the ‘docking station’ of a wheat antibody. It fits into all three locks of the docking station. This is termed a reactive antibody. And in gluten sensitive individuals, the immune system is activated to make more antibodies to fight this invader. As we all know, that is not a problem unless we eat the offending food so often that it overwhelms the body and begins causing a great deal of damage to the intestines and other tissues (pancakes for breakfast, sandwich for lunch, pasta for dinner, toast for breakfast, sandwich for lunch, croutons on the salad at a dinner, and maybe a cookie or piece of cake,..).

    Next we see how some foods (such as casein from dairy) can bind to a gliadin antibody. It fits into two of the three ‘docking stations’ and that is enough to trigger an immune response as if this person was eating gluten. This will still trigger an immune response. That food is called a ‘cross-reactive’ food.

    In the third drawing we see how other foods (such as rice) may bump into a gliadin antibody, but it only fits into one docking station, or no docking station and thus will not bind to it. This is similar to putting a round peg in a square hole - can’t do it. It is ignored by the gliadin antibody.

    With wheat the estimated prevalence of a cross-reactivity with rye and barley is one out of five (20%) (3). Cross reaction with dairy in different studies varies from 50 to 91%(4,5).

    Up to 82% of patients with celiac disease have antibodies to other foods including rice flour, milk, beef, sheep and egg(6). Other studies have identified cross-reactivity with chocolate(7),          sesame(8,9,10,11,12), hemp(13), rye(14), kamut(15,16), buckwheat (17,18,19,20,21,22,23,24,25), sorghum(26,27,28,29,30), millet(31,32,33,34), spelt(35,36,37,38), amaranth(39,40,41), quinoa(42,43,44), yeast(45,46,47,48,49), tapiocal(50,51,52,53), oats(54,55,56,57,58,59), coffee(60,61,62,63,64), corn(65,66,67), ricel(68,69,70,71,72), potato(73,74,75).

    The response to some of these food allergens parallels the response to the gluten protein in wheat with increased IgA antibodies and might be relevant to the ongoing immune response of gluten sensitivity and celiac disease without eating gluten(76). Perhaps this is why as many as 40% of children on a well-managed gluten-free diet for at least 1 year still have elevated antibodies to gluten(77).

    From the diagnostic and therapeutic point of view, it makes sense to define allergen clusters (cross-reactivity)(78). Determination of serum IgA and IgG antibody activities to dietary proteins appears to be a valuable adjunct in the diagnosis and follow-up of celiac disease, both in children and adults. Increased IgA activities to other dietary antigens are likewise relatively characteristic of untreated celiac disease; monitoring of such antibodies may be particularly helpful in evaluating the response of patients on a gluten free diet(79).
    Foods that may create cross-reactivity with gluten include cow’s milk, casein, casomorphin, American cheese, chocolate, rye, barley, kamut, spelt, yeast, oats, and coffee. Common foods often included on a gluten-free diet that one may be sensitive to that could cause continued inflammation include  sesame, rice, corn, potato, hemp, buckwheat, sorghum, millet, amarath, quinoa, and tapioca.

    This array of 24 different foods (some are possible sensitivities while others are possible cross-reactive foods) is available from CyrexLabs.com. Ask your Health Care Practitioner to look into this array.  You might want to consider that, when a gluten-free diet is not producing the results that you had hoped for, the cause may be another common food. If you are working so hard to be in control of the quality and the selection of the foods you eat, this concept of cross-reactivity may be a missing-link that will help you get closer to feeling great and answering that initial question “On a 1-10...” with a passing grade of 7 or higher.

    Dr. Thomas O’Bryan is a nationally recognized speaker and workshop leader specializing in Gluten Sensitivity and Celiac Disease. He is the Sherlock Holmes for chronic disease and metabolic disorders.  He is a clinician par excellence in treating chronic disease and metabolic disorders from a Functional Medicine Perspective.  He holds teaching Faculty positions with the Institute for Functional Medicine and The National University of Life Sciences.  Dr. O’Bryan is always one of the most respected, highly-appreciated Speakers.  Dr. O’Bryan’s passion is in teaching the many manifestations of Gluten Sensitivity and Celiac Disease as they occur inside and outside of the intestines.  Dr. O’Bryan welcomes your questions about gluten sensitivity and/or functional medicine. Please send your questions and requests by email to www.theDr.com.

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    This is me, exactly!  I thought, when I was diagnosed with celiac disease 4 yrs ago, that I would simply adhere to gluten-free diet and all would be well again.  Not so.  Mind, I'm 59 this year, so to be finally diagnosed was a relief but alas the permanent damage being peripheral neuropathy and now fibro myalgia leaves me with severe chronic pain.  I've recently discovered that the gluten-free cereal I was having each morning, albeit with lactose free milk (yep, I'm lactose intolerant too), was the cause of bloating and pain. So I can totally relate to the report that other cereals may 'mimic' the symptoms of celiac disease,  as it's the same awfully painful scenario as having ingested gluten.  I follow a strict diet of portion size and find the Fodmap diet very helpful.  I'm actually a constipated coeliac, so the SR Tramadol and the FR Tramadol for break through pain or severe flare ups, causes mayhem with my constipation .  My energy levels are never really higher than a four, at best, but I'm finally out of bed after 3 years, so that's a positive.  Thanks for sharing your report, it helps me to not keep thinking I'm going crazy with all the food confusion.

    Cheers, Julie Mackay,  Aust.

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    I also had trouble with the gluten free diet. I was eating rice and corn and quinoa. I had brain fog and I was so tired. After eating the wheat belly diet book, I stopped eating rice and corn and grains and any products that contain their flour or syrup. It took a while, but I finally feel pretty good. Another thing that really helped was that I took a mediation class. I meditate every day. I was able to get rid of my pain and stopped all my pain pills.

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  • About Me

    Tom is an internationally recognized speaker and workshop leader specializing in the complications of Non-Celiac Gluten Sensitivity, Celiac Disease, and Autoimmune Disease as they occur inside and outside of the intestines. He is the founder of www.theDr.com. He is the visionary behind the paradigm shifting The Gluten Summit - A Grain of Truth, bringing together 29 of the leading experts on the Gluten connection to diseases, disorders, a wide-range of symptoms and ages. www.theglutensummit.com

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    A team of researchers recently investigated associated factors and the significance of imperfect gut recovery in patients in whom the follow-up had been completed. The research team included Henna Pekki, Kalle Kurppa, Markku Mäki, Heini Huhtala, Harri Sievänen, Kaija Laurila, Pekka Collin and Katri Kaukinen.
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    Journal of Pediatric Gastroenterology & Nutrition. doi: 10.1097/MPG.0000000000001270

    Jefferson Adams
    Celiac.com 03/14/2017 - Recent studies of adult celiacs have suggested that complete, not just partial, mucosal recovery and healing is possible, but, in many cases, may take longer than is currently understood.
    Recently Dr. Hugh James Freeman of the Department of Medicine, Gastroenterology, University of British Columbia, Vancouver, BC, Canada, conducted a study to assess healing time in celiac patients. In this study, 182 patients (60 males, 122 females) referred for evaluation of symptoms, including diarrhea and weight loss, were selected only if initial biopsies showed characteristic inflammatory changes with severe architectural disturbance.
    All patients were treated with a strict gluten-free diet, and diet compliance was regularly monitored. Up to 90% or more of patients showed a complete mucosal response or healing, many within 6 months. However, most patients required up to 2 years for full healing and recovery to take place in the gut.
    In this evaluation, women in each of 4 different age ranges showed better mucosal response and healing than men, while elderly celiacs had lower rates overall. Such factors should be considered before labeling a patient with "non-responsive" disease.
    However, celiacs who are diagnosed later, start a gluten-free diet later, and who have inflammatory changes with persistent gut damage may be at increased risk for a later small bowel complication, including lymphoma.
    The overall good news here is that full mucosal healing can and does occur in most people with celiac disease. Some people may take longer to heal, but the evidence shows that most do eventually heal.
    Source:
    International Journal of Celiac Disease, 2017, Vol. 5, No. 1, xx. DOI:10.12691/ijcd-5-1-4

    Yvonne (Vonnie) Mostat, RN
    Celiac.com 10/26/2018 - Did you know that a new study shows people with celiac disease are more likely to suffer nerve damage? Jonas E. Ludvigsson, a clinical epidemiology Professor in Sweden, discovered that women with celiac disease are 2.5 times more likely to develop neuropathy or nerve damage. There is a real association between celiac disease and nerve damage. "We have precise risk assessments in a way we haven't had before" he stated last year. Yet even Sweden has its quandaries. 60% of women in Sweden who have celiac disease have neuropathy and they do not totally know why! Statistics vary from country to country, and even vary between specialists within that country. Nerve damage is no laughing matter, it presents with numbness and tingling of exterior areas (extremities).
    Basically, numbness in the nerve endings of the fingers and toes and other frustrating areas. Just try picking up pencils, or something hot out of the oven. If you do not feel the heat you will know that you may have nerve damage. Following a rigid gluten-free diet, however, can alleviate this problem to a certain degree, and that is why we keep repeating the mantra: “Eat Clean & Gluten-Free!” However, sometimes accidents happen, and people who have celiac disease, gluten sensitivity, or dermatitis herpetiformis get exposed to gluten.
    How to Recover From Accidental Gluten Exposure
    Kathy Holdman, M.S., R.N. and Certified Nutritional Therapist lists numerous ways to recover after gluten exposure. You need to take into account  the amount of gluten exposure, length of time from last exposure, degree of gluten intolerance present, health of the digestive tract, existing inflammation or infection in the body and overall health status. Some  people say they can recover in a few days, others say they may experience significant setbacks in their health that lasts weeks to months. For those with positive celiac disease it may take years for complete healing of the small intestine after gluten exposure, although "outward symptoms" may resolve sooner. 
    Nurse Holdman suggests the following 10 tips to help alleviate symptoms from gluten exposure, and hopefully speed up recovery:
    Drink plenty of water, and this cannot be emphasized enough. Water is an essential nutrient for every cell in the body for proper function. Many people live in a state of chronic dehydration, which of course results in constipation. Then they take something to rid themselves of constipation and take too much and lose potassium, magnesium and throw out the balance of the salts in their body. When you have celiac disease you learn something new every week. Last week an Internist told me, after incurring my second bladder infection in eight weeks, that it could possibly be from the diarrhea following being glutened, and not totally washing myself. That made me a little sick just thinking about it. But, she told me an interesting fact about urinary tract infections and celiac disease. Celiacs do incur more frequent urinary tract infections due to more frequent diarrhea, no matter how meticulously clean we are. Taking four or five "Craisins" with each meal several times a day can limit the amount of bladder infections. I told her that I was also taking Cranberry tablets and she told me to throw them out because they are "useless."  She said that you do not need to buy fresh cranberries, as they are  "sour and expensive." Just buy a bag of the dried Craisins and eat some either before or after meals. Ingredients in the pure dried cranberries helps prevent bladder infections from occurring. Studies done in several Nursing Homes where many incontinent patients lived were given five Craisins either alone or in a salad twice daily and the decrease in urinary tract infections was nothing less than amazing. Get extra sleep and rest. Sleep is the time your body repairs itself. Avoid strenuous exercise, (the type that causes you to sweat). Exercise in moderation is what I think she wants to tell us. Drink bone broth. It is rich in minerals and gelatin and other nutrients that are soothing to the digestive system and nourishing to the entire body.  Another health benefit of bone broth is hydration, and the more liquid intake the better. You can dress up bone broth with onions and garlic to improve the taste.  Take epson salt baths. They contain magnesium, a mineral that can help the body to relax. The sulphate minerals found in Epson Salts are detoxifying, and they can stimulate the lymphatic system and support the immune system. Nurse Holdman also urges us to take digestive enzymes which can help modulate the symptoms of celiac disease. Take digestive enzymes. If taken immediately following the accidental consumption of gluten, some people believe that digestive  enzymes can help to modulate the symptoms of celiac disease. It is well known that digestive enzymes soothe the stomach lining and ease the abdominal pain. Drink ginger or peppermint tea. They are both known to help relieve nausea and can be soothing to the digestive system. Drink a cup if you are having nausea or other gastrointestinal symptoms. Take activated charcoal. It is an over-the-counter-supplement that may be beneficial if taken immediately after an attack. It helps by binding with the offending food and preventing it from being absorbed into the body. This supplement can bind with medications so be sure to consult your licensed health care professional prior to taking it, especially if you take medications for other diseases or conditions.  Eat fermented foods. Who knew!? Possibly the Koreans and their staple Kim Chi, or the Ukrainians/Romanians with their fermented red cabbage coleslaw of course! Fermented foods are high in nutrients that nourish the entire body. Start out with a small amount of fermented food and slowly increase it. Drink nettle leaf tea. It is an antispasmodic with antihistamine properties. It can help relieve muscle and joint pain, and relax your body naturally. Neither gluten intolerance nor celiac disease are mediated by histamine, but some people report that nettle leaf can help relieve symptoms of rash and itching following gluten exposure. It is a gentle diuretic and can be detoxifying. So if you experience dehydration symptoms it is time to drink more water. Get acupuncture treatments. It may relieve inflammation, especially in the abdominal area, and it can be relaxing. Only you can tell how many treatments are beneficial, and you need to take into consideration the cost factor because most health insurance plans do not cover acupuncture. Tips to Help People with Dermatitis Herpetiformis Recover from Accidental Gluten Exposure
    A suggestion from Me: If you have itching from dermatitis herpetaformis, try Scalpacin. I have been using it for years and nothing stops the itching in such a short time span. Once the sores start to appear, even just a slight "itch" is like a doorbell warning you ahead of time. I apply Scalpacin lotion, which is not a cream, but is a clear liquid. At first it stings but that is how I know that I have an impending outbreak. It is a non-fragrant liquid. You can use it on your scalp without totally ruining your hair style. Don't wash you hair with it, search out the spots, or, if you have a partner, they may be able to help you with the sores in your scalp, and you can point out itchy areas. 
    For dermatitis herpetiformis itch you can also try a mix of baking soda and water by making it into a paste. This is not great for your scalp and hair, but it will ease the itching. It can be a little messy when it dries and the white powder flakes off on your floors, but you do not have to use it for hours at a time; it is a temporary method for temporary relief.
    You can also ask your physician if he or she will prescribe the prescription drug "Atarax" for you. It is a strong allergy medication and must be taken exactly as directed. It really helps the itch, but it can be sedating, especially when first trying it. Don't over-use the prescribed dosage. I would not suggest driving a car while taking Atarax, but if the itching, scabbing and bleeding have become so severe it definitely is the one allergy medication that helps with the itching from dermatitis herpetiformis. I have tried Benadryl, Claritin and other over the counter  allergy medications, and nothing works as well as Atarax.  Talk to your family physician about a prescription and read the instructions carefully.
    Hopefully these tips will prove helpful in the unfortunate event that you ever get cross-contaminated by gluten. I certainly hope this never happens to you!

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    Hello Everyone, Hope this finds you well. I'm wondering if anyone knows of a compassionate and caring Doctor may it be Functional or Medical etc. in the Vancouver area? I have contacted the Celiac groups, however they are not allowed to release names. Thank you kindly in advance for your time. Happy Healing.  
    All of Schars products are gluten-free.  They don’t make any that are not.
    Yes, I had to stop eating Schar bread because I was getting sick on it all the time. I believe if I am not mistaken (it has been a long time) the Artisan line does not. I received this tip from someone else, and I don’t know if it is accurate but it seemed to help me, at least. 
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