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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    CELIAC DISEASE AND PHYSICAL ACTIVITY


    Claire Atkin

    Celiac.com 06/02/2009 - Celiac disease is an autoimmune disorder thatis triggered by gluten, and it is being diagnosed more often than inthe past. Previously considered quite rare, it is now estimated tooccur in 1 in 100-150 people in all societies (with the possibleexception of Japan). Physical activity counters some of the lastingsymptoms of celiac disease, but some of the symptoms actually mayinhibit physical activity. Older adults (+55) with celiac disease mayhave positive or negative attitudes toward physical activity. As itstands, we’re not sure whether celiac disease helps or hinders theirwill to exercise.

    There are many symptoms associated with celiac disease. They mayinclude neurological symptoms, physical symptoms and overall feelingsof fatigue or depression. This makes celiac disease difficult toidentify, but also forces individuals with celiac disease to find theirown individualized balanced lifestyles. Balanced lifestyles areespecially important for older adults with celiac disease because, asanyone diagnosed with a disease knows, they must maintain theirphysical wellbeing in order to heal. Older adults with celiac diseaseare also at risk of gaining weight after starting a gluten free dietbecause their bodies absorb nutrients so much more efficiently thanbefore, and because many gluten-free breads and desert substitutes maybe higher in calories than their gluten-containing counterparts.

    Because each person with celiac disease exhibits different symptoms,each older adult with celiac disease must find their own way of livingwith the disease. Their will to excercise depends on how celiac diseasehas affected their appetite, energy level, mental health, nervoussystem and overall body functions.

    Research about the attitudes of older adults with celiac disease toward physical activity will help to understand:

    • The general attitudes of older adults with celiac disease toward physical activity;
    • The symptoms of celiac disease that directly or indirectly affect older adults’ attitudes toward physical activity;
    • How physicians, recreation centres, celiac associations and theCanadian Government can work with people with celiac disease tomaintain or increase their levels of physical activity, and;
    • Provide literature on nutrient deficiency and physical activityto patients in need of information or reassurance about their attitudestoward physical activity.
    Celiac disease may negatively affect the attitudes of people withceliac disease toward physical exercise and activity in two differentways. First, celiac disease symptoms inhibit exercise. Chronic andacute pain, fatigue, bruising and other symptoms associated withnutrient deficiency and celiac disease recovery could easily affect themotivation that people with celiac disease have to exercise. Second,the exercise may exacerbate symptoms of celiac disease. 

    Certain studies have shown that allergies can exacerbate or inducefood-dependent allergy symptoms (Sampson, 2003). If someone with celiacdisease were to experience symptoms as if they were having an allergicreaction to gluten when they conducted certain exercises, they wouldeither try to push through, stop, or change their exercise program orschedule. They could exercise only in the morning, before breakfast andafter a long period of not eating, or they could choose activities withless physical impact, such as walking/hiking, or biking.

    Symptoms of celiac disease may also encourage exercise. If an olderadult with celiac disease finds out that they have low bone density,they may choose to increase their weight bearing activity to encouragebone growth.

    There is a long list of symptoms that are associated with celiacdisease. Some of the symptoms of celiac disease that are documented inliterature about include:
    •  No obvious physical symptoms (just fatigue, overall not feeling well)
    • Gastrointestinal symptoms
    • Fatigue
    • Weight loss
    • Pallor (unhealthy pale appearance)
    • Flatulence
    • Borborygmi (stomach rumbling)
    • Nausea
    • Vomiting
    • Anorexia
    • Voracious appetite
    • Iron deficiency anemia
    • Failure to thrive
    • Lymphocytic gastritis
    • Vitamin B12 deficiency
    • Vitamin D deficiency
    • Hypocalcaemia/ hypomagnesaemia
    • Vitamin K deficiency
    • Coetaneous bleeding
    • Epitasis (nose bleeding)
    • Hematuria (red urine)
    • Gastrointestinal hemorrhage
    Celiac Disease affects the nutrient absorption level of the smallintestine, and people diagnosed with celiac disease should therefore betested for vitamin deficiencies. Side effects of nutrient deficiencyvary from person to person, but the level of nutrient deficiency mayaffect the amount that someone with celiac disease will exercise. Forexample, a person's calcium absorption rate may affect their bonedensity, and a person's iron absorption rate may affect their energylevels. In general, weight-bearing exercise is associated with strongerbone density. Anemia (lack of iron), though, decreases a person’senergy levels. Depending on the person, the two opposing influences offatigue and bone density loss may sway the person’s attitude towardexercise in different ways.

    This is the subject of a human geography honours project at theUniversity of Victoria. If you have any comments on the subject, pleasecontact me by using the comment form below this article.

    Related Articles:
    • Sampson, H.A. (2003). Food Allergy. Journal of Allergy Clinical Immunology. 111:2, S540-S547.
    • Sategna-Guidetti, C. et al. (2000). The effects of 1-year glutenwithdrawal on bone mass, bone metabolism and nutritional status innewly diagnosed adult coeliac disease patients. Alimentary Pharmacology& Therapeutics. 14, 35-43.
    • Palosuo, K. (2003). Transglutaminase-mediated cross-linking of apeptic fraction of w-5 gliadin enhances lgE reactivity inwheat-dependent, exercise-induced anaphylaxis. Journal of Allergy andClinical Immunocology: 111:6, 1386-1392.


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    Guest Kaz Powell

    Posted

    Hi, I was confirmed via biopsy with celiac today in fact so I feel like sharing the story. whether its any use to you or not is another question! After years of symptoms but being ignored by my doctor and being called lazy by friends and family it was exercise which made me change doctors and get a diagnosis. As well as other symptoms my main is chronic fatigue. Sleeping for 37 hours straight is my record! 20 hours is normal. I also put on 4 stone in a year. Fair enough I suppose if all I do is sleep. So I decided to take up running *again*. I got to being able to run for 5 minutes without stopping over a period of weeks but then I got worse and worse very quickly. It wasn't that I was out of breath it was that my legs would give way benea6th me. Even after days off running to recover the pain did not go away and legs muscles did not recover, so I knew in my own head that it felt like vitamins weren't getting put back into the muscles. I guess the weeks building up to being able to run for 5 minutes or so used up anything that was left and then they were truly empty. So I changed doctors and four months later its been confirmed as coeliac (although I've been gluten free for 22 days - and counting!). Good luck with your work. Kaz .

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    Guest John

    Posted

    In my case the adoption of a gluten free diet allowed and encouraged me to increase my physical activity. I hike in the mountains every weekend, but prior to diagnosis my gluten induced anemia had me skipping the high peaks due to reduced power, cramps, restless body, etc. Now I do them all, do them fast, and feel great, like I did 20 years ago.

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    Guest Steve

    Posted

    I agree with John. My physical stamina is much better now that my anemia is resolved. I really hadn't noticed any specific problems before my doctor followed up on the anemia and diagnosed celiac disease this winter, but this spring I have the energy and stamina for longer hikes and recover faster.

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    I was diagnosed in late Feb 2000 as I was finishing up my training for the Boston Marathon. At that time my long runs were planned so that there were plenty of wooded areas I could run off to. Since being on a gluten-free diet, I no longer need to worry about intestinal discomfort and my training and racing is better than ever. Last year I was ranked as an All American male triathlete in the 45-49 year old age group. I qualified and competed in the World's 70.3 Championship which completed my year of doing Boston Marathon, four half-ironman races and various other smaller triathlons and running races. Being diagnosed as Celiac Sprue to me has been a blessing in disguise as I need to always eat healthy to stay in shape and maintain my energy levels. The past few years I've noticed a lot more sports drink mixes that are now Gluten Free and are great for high caloric nutrition during the long workout sessions.

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    Guest yvonne roush

    Posted

    I was diagnosed with Celiac almost 3 years ago. I had started exercising at a 'ladies club' and even took up slow running. 6 months before my diagnosis, I started having such Strong intestinal problems (flatulence with bowel leakage) that I had to give up ALL physical exercise due to the imminent chance of an accident. I am happy to report with symptoms under control, I have re-started regular exercise. Fascinating study!

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    Guest Jan Tacherra

    Posted

    I found this article very interesting but became confused at the paragraph which starts out:

     

    'Certain studies have shown that allergies can exacerbate or induce food-dependent allergy symptoms (Sampson, 2003).'

     

    My understanding is that celiac disease is an autoimmune response and not an allergy.

     

    Are you saying that someone with celiac disease can also experience an allergic reaction which is exercise related?

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    Guest Paul D

    Posted

    Before I was diagnosed with Coeliac Disease, exercise was the only thing that made me feel better, since eating healthily at the time was still hurting me due to gluten.

     

    Now, I am mid way in the healing process and on a strict gluten free diet, I find that exercise hinders me because it makes me too hungry (I am hungry enough since I don't absorb nutrients properly yet), so I avoid heavy exercise. When I heal more, I'll slowly increase the exercise, but for now, I just stretch or do some yoga (or veg on the couch instead!)

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    Guest Stephanie

    Posted

    I have a lot of various and complex symptoms. I was finally diagnosed last October after 30 years of trying to find answers. When I was a child I was a competitive swimmer, dancer and skier (snow and water) but staying physically active became increasing difficult for me as I got older. I often experienced increasing fatigue, headaches, nausea (with occasional vomiting), ear ringing and burning skin when I would exercise. Body pain did not affect my desire to exercise as much as fatigue because I was often in physical pain, whether or not I was exercising.

     

    I am 46 years old now. Up until last year, I walked about 1 hour/day and enjoyed hiking. During the past year, however, my fatigue and weakness has been extreme and I haven't been motivated to do any physical activity. I have gained weight and lost a lot of muscle tone. I also seem to have skin reactions to everything I touch now and I have reactions sometimes when I haven't eaten or touched anything. I believe I need to have extensive allergy testing done.

     

    I finally got tested for B6 and B12 deficiency and was told this morning that I am 'slightly' B12 deficient. I was previously told that I am not anemic and that my bone density was good. None of my doctors has tested me for other possible vitamin deficiencies. I am hoping that the B12 deficiency is responsible for the muscle twitches and weakness that I have been experiencing.

     

    Thank-you for this information. It helps me understand what has been happening to me since my doctors don't seem to know or understand the symptoms. Their management of Celiac Disease seems to be limited to telling me to go on a gluten free diet with the addendum, 'there are a lot of resources out there' (i.e 'your on your own!) They only seem do more testing when I tell them that I'm still in bad shape and I absolutely need something, so it is up to me to find out what I need.

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    Guest Tina Hughes

    Posted

    This article made very interesting reading, as do the comments of the other readers. I am now in my mid-forties and have not technically been diagnosed as a celiac, probably because I have been trying to avoid eating wheat for some years. I was originally diagnosed with IBS and left to figure out how to survive by a very disinterested physician. The result has been that I have tried to follow a 'healthy' diet which included barley, rye and oats. I have been very physically fit in the past, training in karate four times a week and more for four years as well as working as a full time gardener. Over the last four years, my symptoms gradually worsened and my new doctor suggested that I may be a celiac after an extreme reaction to a meal. For me the biggest deterrent to exercise related to the intense pains that I experienced in my joints, bones and muscles. These were so severe at times that I could hardly put one foot in front of the other! Even after following a strict gluten free diet for almost a year my stamina and energy levels fluctuate and there are times when I am totally exhausted. I walk regularly and am hoping to take up more intensive exercise in the coming months. From my point of view it is not the desire to exercise that is absent it is purely down to having the physical ability to do so, although now that the physical pain has gone it's much more appealing now.

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    Guest Phyllis

    Posted

    Posting this article and getting public comments is an interesting way to get data for your study. Like some others who've commented, I was anemic and had a lot of pain before diagnosis. Though I was always very active (running, hiking, dance), that was a real problem. Now, at 58, I have a lot more endurance and enjoy bicycle touring and other strenuous physical activity.

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    Guest Laurie

    Posted

    Hi Claire,

    I am curious if you know of anyone who is studying the attitudes of children with celiac disease toward physical activity?

     

    We have a 12 year old daughter, with celiac disease, and Type 1 Diabetes. She is very athletic, training at a high performance level (provincial) in one of her many sports. She is a very picky eater, thus a concern on our behalf, for her ability to sustain a healthy body while being physically active.

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    Guest Janne Ingram

    Posted

    My husband, daughter and myself now all eat gluten-free, while we have not been diagnosed as celiac we are sure that we are all gluten intolerant and have other food allergies (dairy and egg) as well. We have been gluten-free for 5 weeks and I have had the best result of the three of us. My Arthritis has improved about 80%. The swelling and pain in my joints and entire body has decreased to the extent that I want to excercise, I haven't felt this good for 20 years! My stomach problems were always put down to IBS (as were my daughter's), but I think that is what the doctors say when they run out of ideas. No doctor and I've seen plenty... has ever said that our health problems could be diet/food allergy related and I wish they had because I've had to figure this all out all by myself. My husband was tested and confirmed as wheat allergic years ago, but wouldn't try going gluten-free, he was always very active and fit but for the last few years he becomes ill if he tries to exercise regularly which really makes him scared to exercise. He has not felt much better as yet but has agreed to keep up the gluten-free diet as its easier now the we are gluten-free as well. I hope to be able to start doing gentle exercise soon and regain some fitness, as in the five weeks I've been eating gluten-free I have lost about 3kg without even trying! And although eating gluten-free is a challenge I will never go back to gluten.

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    Guest Margaret

    Posted

    I, too, am curious about the question Laurie previously posed: what are the attitudes of children with celiac toward physical activity? My 12-year-old daughter was diagnosed with celiac disease 5 years ago. She was always a sedentary child, and as a toddler was quick to tire when walking, and requested to be carried whenever we were hiking. She still has not learned to ride a bicycle, and refuses to even try. She is still slightly anemic despite 5 years of a gluten-free diet and iron supplementation. She is a bookish kid who'd much rather read or watch a movie or play a computer game than do anything physical. She doesn't have the stamina for even moderate activity.

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    Guest Melissa

    Posted

    I was just diagnosed with Celiac in Nov. 2008. Before I got sick, I was a sprint-triathlete. Since the onset of symptoms (late winter 2006), I gained 20 lbs and was very lethargic and had trouble getting motivated to exercise. Even with Celiac, I've still managed to run 2 half-marathons. All winter as I was managing my diet, my symptoms subsided considerably. But now that I am back training for sprint triathlons, even though I am watching my diet, some of my symptoms are returning. Can the physical stress of training cause symptoms in someone with Celiac? Since my Celiac was triggered by stress in my life, I am wondering if physical stress could have an influence on my level of symptoms. Also, I am really getting frustrated that I am not losing those 20 lbs that I put on when I developed Celiac.

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    Guest Bill Wells

    Posted

    I am now in the process of being tested for celiac disease by a gastroenterologist, as he thinks that my symptoms indicate that possibility. In reading your article, I find that I have several of the symptoms listed. Thanks for this very informative and helpful article.

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    Guest Brian

    Posted

    I found this article very interesting but became confused at the paragraph which starts out:

     

    'Certain studies have shown that allergies can exacerbate or induce food-dependent allergy symptoms (Sampson, 2003).'

     

    My understanding is that celiac disease is an autoimmune response and not an allergy.

     

    Are you saying that someone with celiac disease can also experience an allergic reaction which is exercise related?

    Someone correct me if I am wrong, but I understand that stress can exacerbate or induce increased celiac or gluten intolerance responses. Many celiacs are unaware they have the intestinal damage. Few if any effects are apparent to them either because they are minor, they have always had them and that is their norm, or they have developed slowly or not at all. Exercise in itself is stressful as are allergies such as those to airborne agents like pollen, volatiles, and dust.

     

    Dairy products induce production of nasal mucous for me, as do dust and pollen. Grass and tree pollen without antihistamines have me all but incapacitated. Sneezing too hard and often and eyes watering too much to drive safely, for example. Symptoms this severe interfere with sleep (ya think?), adding more stress, and I got a flare-ups of what I now recognize as gluten-related intolerance symptoms, like nose bleeds, cluster headaches, angina (low calcium and magnesium and B vitamins), intestinal distress, arthritis, etc. Normally, the symptoms are in control. It is a threshold effect. When that level is exceeded, the digestive symptoms start. I did not know that was Gluten intolerance, until last fall.

     

    Treating sinusitis with antibiotics on a regular basis doesn't help the digestive issues of gluten either.

     

    I lost 35 lbs biking an one half to one hour a day for 6 months last year. The last 30 pounds pre-gluten-free did not begin to budge until going gluten free and addressing nutrient and vitamin deficiencies. Down another 15 with 10 to15 pounds to go. Sleeping better. Not starving for carbohydrates. Off of three hypertension-related medications, one reduced to 1/8 dose. Take heart. Have patience. I feel like I did over 20 years ago.

     

    IN 2000, I could hardly walk up or down stairs from a Lipitor side effect (celiac interaction?), three weeks ago I rode 520 miles in the Habitat 500! Not dead yet. Not sneezing, Exercising and sleeping well.

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    I was just diagnosed with Celiac in Nov. 2008. Before I got sick, I was a sprint-triathlete. Since the onset of symptoms (late winter 2006), I gained 20 lbs and was very lethargic and had trouble getting motivated to exercise. Even with Celiac, I've still managed to run 2 half-marathons. All winter as I was managing my diet, my symptoms subsided considerably. But now that I am back training for sprint triathlons, even though I am watching my diet, some of my symptoms are returning. Can the physical stress of training cause symptoms in someone with Celiac? Since my Celiac was triggered by stress in my life, I am wondering if physical stress could have an influence on my level of symptoms. Also, I am really getting frustrated that I am not losing those 20 lbs that I put on when I developed Celiac.

    Hi Melissa! Thank god we're not alone, so glad I discovered this site! I was diagnosed with celiac three years ago and have been greatly affected as a competitive mixed martial arts fighter.

     

    Have discovered that even for up to a couple months after accidentally eating gluten, training after consuming too much dietary fat (more than 50-100g/ day) will cause my symptoms to instantly return (fatigue being the most frustrating), removing me from competition until I can recover.

     

    Dairy products, excess dietary fat consumption, and exercise (especially anaerobic) are all 'kryptonites' to the celiac while the body is healing. If these are strictly avoided then a stress and symptom free lifestyle will be enjoyed!

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    I have a lot of various and complex symptoms. I was finally diagnosed last October after 30 years of trying to find answers. When I was a child I was a competitive swimmer, dancer and skier (snow and water) but staying physically active became increasing difficult for me as I got older. I often experienced increasing fatigue, headaches, nausea (with occasional vomiting), ear ringing and burning skin when I would exercise. Body pain did not affect my desire to exercise as much as fatigue because I was often in physical pain, whether or not I was exercising.

     

    I am 46 years old now. Up until last year, I walked about 1 hour/day and enjoyed hiking. During the past year, however, my fatigue and weakness has been extreme and I haven't been motivated to do any physical activity. I have gained weight and lost a lot of muscle tone. I also seem to have skin reactions to everything I touch now and I have reactions sometimes when I haven't eaten or touched anything. I believe I need to have extensive allergy testing done.

     

    I finally got tested for B6 and B12 deficiency and was told this morning that I am 'slightly' B12 deficient. I was previously told that I am not anemic and that my bone density was good. None of my doctors has tested me for other possible vitamin deficiencies. I am hoping that the B12 deficiency is responsible for the muscle twitches and weakness that I have been experiencing.

     

    Thank-you for this information. It helps me understand what has been happening to me since my doctors don't seem to know or understand the symptoms. Their management of Celiac Disease seems to be limited to telling me to go on a gluten free diet with the addendum, 'there are a lot of resources out there' (i.e 'your on your own!) They only seem do more testing when I tell them that I'm still in bad shape and I absolutely need something, so it is up to me to find out what I need.

    This is my EXACT experience. I was diagnosed 6 months ago and have been 100% faithful on my diet, yet I am still very very sick. I am 32 years old and have been working out since I was 16 years old. I worked out on average 4 - 5 days a week some weeks 7 days because I always felt SO good after working out. Now when I work out I am sick for 2 days, including bloating, moderate to severe abdominal pain, diarrhea and significant fatigue ! I do not have time to be in bed for 3 hours after working out so I have given up on it! The doctors all say well just stay on your gluten-free diet! I really need some help! And I don't know who will have answers if my doctor doesn't!

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    Guest Jessie

    Posted

    I was a keen runner before the symptoms of gluten and dairy intolerance appeared after my daughter was born. Even though I have been on a wheat and lactose-free diet for 4 years or so, I do have to take it easy, and only run maybe 3 times a week instead of every day like I used to, or it wipes me out for up to a week at a time. You can intersperse your cardio successfully with yoga-type exercises if you find this frustrating. Don't give up! It just takes a while for your body to recover and adjust.

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    Guest Suzanne

    Posted

    I've found that I've never been able to get back to doing the vigourous exercise that I once did pre coeliac diagnosis. My first symptoms of coeliac appeared while exercising - extreme fatigue, fast heart rate and nausea. Even now after being on a strict gluten-free diet for a year and a half I can't exercise beyond walking as I start to feel unwell (although not quite as bad as I did before diagnosis). I'd like to hope that eventually I will be able to return to my previous exercise but so far, no luck.

    If I do accidentally get "glutenized", physical activity definitely increases the intensity of my symptoms, even days later.

    If anyone has had similar experiences I'd love to hear about it.

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    I have had constipation all of my life. I have also had ovation cysts since adolesence. After that, I just blamed all my stomach pain and gas on my cysts. A few years ago, my constipation started to swing wildly to diarrhea and back to constipation. My doctor told me to eat probiotic yogurt everyday and that seemed to help. In the last few years, I have had stretches of time (mostly in the winter) that I would have severe stomach pain and gas. Again, I blamed my ovarian cysts. Last October, I had what I thought was the flu except there was no fever. This went on for a month before I went to the doctor. I described my stomach pain and nausea as well as headaches and full body pain. He said that I had an intestinal infection and gave me a prescription. When that didn't work it was a bowel infection and then IBS. Finally he said try eating gluten-free and see what happens. I haven't eaten gluten since (except accidentally). There are other symptoms that have cleared up too, but that is the gist of my story. Each time I ingest gluten, the symptoms take about 6 weeks to taper off. Twice now I started to feel well enough that I thought I would start exercising again. A little pilates and elliptical. That was Saturday, that night I was awake with pain all over and Sunday it was too painful to move. I didn't get off the couch all day. I think that I will wait until it has been the full 6 weeks or a little more and try again. I am interested if anyone else has experienced this.

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    I have had constipation all of my life. I have also had ovation cysts since adolesence. After that, I just blamed all my stomach pain and gas on my cysts. A few years ago, my constipation started to swing wildly to diarrhea and back to constipation. My doctor told me to eat probiotic yogurt everyday and that seemed to help. In the last few years, I have had stretches of time (mostly in the winter) that I would have severe stomach pain and gas. Again, I blamed my ovarian cysts. Last October, I had what I thought was the flu except there was no fever. This went on for a month before I went to the doctor. I described my stomach pain and nausea as well as headaches and full body pain. He said that I had an intestinal infection and gave me a prescription. When that didn't work it was a bowel infection and then IBS. Finally he said try eating gluten-free and see what happens. I haven't eaten gluten since (except accidentally). There are other symptoms that have cleared up too, but that is the gist of my story. Each time I ingest gluten, the symptoms take about 6 weeks to taper off. Twice now I started to feel well enough that I thought I would start exercising again. A little pilates and elliptical. That was Saturday, that night I was awake with pain all over and Sunday it was too painful to move. I didn't get off the couch all day. I think that I will wait until it has been the full 6 weeks or a little more and try again. I am interested if anyone else has experienced this.

    I was diagnosed almost 6 months ago. I've always done a lot of running and usually work out 6 days a week. Prior to being diagnosed, I became extremely fatigued and weak. I also developed hypoglycemia. I was eating all day long while not gaining any weight. Since being gluten-free for nearly 6 months, most of my symptoms are greatly improved. But, if I push myself just a little too much while exercising, it can take me several days/weeks to recover. If I had to give out any advice from personal experience, I would recommend exercise. However, start out slow and don't stress your body while healing. Set-backs are really frustrating and can leave you feeling somewhat hopeless. Good luck everybody!

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    Guest Kellie

    Posted

    I am currently experiencing a myriad of mysterious health issues that is leaving the doctors scratching their head... including fainting, my legs just randomly giving out, itching, macrocytosis, gastro pain and rumbling, hair and eyelashes falling out and bruising. It has been an epiphany to read this in my research... my grandmother has coeliacs and I keep coming across a lot of the same things mentioned when discussing it. I hope there is more help available than just avoid gluten though, because I am desperate for my normal life back!

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    admin

    Grodzinsky, et al:
    High Prevalence of Celiac Disease in Healthy Adults Revealed by anti-gliadin Antibodies
    ANNALS OF ALLERGY vol.69, July 1992, p. 66-70.
    This study was done by testing random blood samples from healthy blood donors. Donors with elevated levels were asked to undergo endoscopic examination. Some refused. One in 256 of those who underwent endoscopy were identified as having celiac disease. Everyone in this study thought themselves healthy enough to be donating blood without being asked to do so. Extrapolating from the number who consented to endoscopy, had the ratio remained constant, the proportion would have been One in 187. Again, these were healthy blood donors, not folks in a GI department of a hospital.

    admin

    BMJ 2004;328:322-323 (7 February) Celiac.com 02/18/2004 - A study conducted by researchers in the UK has found that 1% of all seven year old children in the UK have celiac disease, and most cases of celiac disease continue to remain undiagnosed. The researchers tested 5,470 "normal" children using a two stage screening that included an initial radioimmunoassay for antibodies to tissue transglutaminase (endomysial antigen), and a further testing of positive samples for IgA-EMA by indirect immunofluorescence. Children with tTG antibodies under the 97.5th percentile were defined as antibody negative. Out of those tested 54 were positive for IgA-EMA. Additionally: "IgA-EMA positive children were shorter and weighed less than those who tested negative for tTG antibody."
    The Researchers Comment:

    "At age 7, 1% of children were IgA-EMA positive and likely therefore to have sub clinical coeliac disease, though less than 0.1% were reported to be on a gluten-free diet. The prevalence of coeliac disease in these children is therefore comparable to that in UK adults. The benefit of early diagnosis of sub clinical coeliac disease remains unproven, but long term follow up of this cohort may help to resolve this. If screening is worth while, it should be started in childhood."
    "Since ALSPAC is an observational study based on analysis of anonymous samples, confirmatory biopsy was not possible...®eported clinical features were similar to those in adults with coeliac disease identified by screening. Gastrointestinal symptoms were not prominent, and the excess in girls mirrors that seen in affected adults. The most striking observation was that children with IgA-EMA were shorter by more than 0.76 standard deviation scores and lighter by 0.54 standard deviation scores than antibody negative children matched for date and place of birth. This equates to about 9 months growth and weight gain in an average child around this age. These features were independent of gastrointestinal symptoms and anemia and presumably unrelated to malabsorption."
    Conclusion:
    "Occult coeliac disease seems to start in childhood, even in those who are subsequently diagnosed as adults. The search for the trigger resulting in the breakdown of immune tolerance to gluten therefore needs to focus on infancy and intrauterine life."

    Jefferson Adams
    Celiac.com 03/27/2015 - Researchers don't have any solid idea about how common cases of seronegative celiac disease might be, but many feel strongly that rates of seronegative celiac disease are underestimated in children, and may result in misdiagnosis of celiac cases.
    One team of researchers wondered if an emphasis on "serology-led" diagnosis might be contributing to a low rate of celiac disease diagnosed in children from the United States. That research team included Deborah L. Preston and Yoram Elitsur, and they recently set out to investigate the rate of celiac disease after upper endoscopy (EGD) with no prior positive celiac serology compared with the rate of celiac disease followed by positive serology.
    The team conducted a retrospective review of that charts of all of the first diagnostic EGDs in children (2009–2013). They split the patients with confirmed celiac disease into 4 groups: group A, positive EGD/positive serology (histology-led diagnosis); group B, positive serology/positive histology (serology-led diagnosis); group C, positive histology followed by negative serology (control 1); and group D, positive serology followed by negative histology (control 2).
    The team reviewed a total of 761 upper endoscopic charts. They confirmed 15 children with celiac disease, for a rate of 1.97%. Group A and group B had similar demographic data or clinical symptoms, and similar rates of celiac disease between histology-led celiac diagnosis (group A) and serology-led celiac diagnosis (group (1.18% vs 0.79%, P = 0.273).
    This study showed that endoscopy-led diagnosis and serology-led diagnosis found celiac disease at similar rates.
    This finding suggests that better diagnosis of celiac disease in children requires performing an adequate number of intestinal biopsies in every diagnostic upper endoscopic procedure.
    Source:
    Journal of Pediatric Gastroenterology & Nutrition: March 2015 - Volume 60 - Issue 3 - p 357–359. doi: 10.1097/MPG.0000000000000602

  • Recent Articles

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764