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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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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About JLK

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  1. Mucus is usually associated with a Candida overgrowth of the intestines. Candida takes advantage of our gluten-damaged insides and shifts growth forms from yeast-like to fungi-like, with mycelial extensions that work their way into and between our cells like roots, causing further damage. At this point, with a damaged small intestine, Candida becomes systemic. This is another terrible burden on our livers... I am doing a Candida cleanse right now (just by taking caprylic acid and eating lots of garlic) and have noticed an improvement in just a week. I never was one to eat a lot of sweets; sweets feed the hungry buggers. Some people have to cut all sugars, starches, and complex carbs from their diets for weeks in order to get their Candida under control again, which is really hard to do! When we are healthy, our immune system in conjunction with the friendly bacteria in our guts keep Candida in check. However, if we are still suffering from gluten ingestion our guts are not in good shape (leaky gut syndrome), our immune systems are overworked from all the food antigens escaping the gut lumen and getting in our blood, and we are in a state of intestinal dysbiosis meaning that our friendly gut bacteria have lost the war and need reinforcements! (I am also taking a good probiotic.) And so we see mucus (fungal mycelial "rafts") in our excrement.
  2. No one has chimed in from the other side so I'll speak first for celiac with chronic constipation. All my life, hard poops and hard to poop. Pellets of varying size without odor. And I would fart maybe twice a year. When I used to drink coffee (all my adult years up to 3yrs ago), it was a stimulus for trying anyway! Much better once I went gluten-free but at same time, still taking Mg and flax seeds to help things along. Now I am killing off some Candida and it is blocking me up even more so. And much harder -- hard to imagine I'm sure, for a lot of you! There are times when I think "there's no way that will come out, what am I going to do?!", "it's like cement", "is it going cut me?!", "am I going to rip?!!!" Yes, sometimes there is a bit of blood from the exodus. Anyhooo, even given all that I am at least finally regular, going about once a day, and have been for awhile, which I contribute to going on the Blood Type Diet and kicking gluten and dairy out of my life! Now, dairy will cause diarrhea and vomiting but gluten just makes me wish I were... (at least it's coming out, right?)
  3. Well, nogluten!, I have fennel growing in the backyard so that's easy enough! What enzymes did you take and how long before you were better? What were your symptoms? I am operating under the assumption that I must have an intestinal dysbiosis and a candida opportunistic overgrowth... Thanks, Judi
  4. I found these pictures particularly helpful. http://www.dermnet.com/moduleIndex.cfm?moduleID=5 I have been lucky with this manifestation of celiac. Only 2-3 small blisters on my legs (maybe just my right leg -- wasn't paying close attention earlier on) that have come and gone over the summer. I thought they were insect bites until recently, even though I had never been bitten by anything in the past that left a blister, and I couldn't remember being bitten as I usually do. It's the watery then crusty blister which convinced me. And they lasted longer than an insect bite would, a couple weeks, even without scratching. I used witchhazel solution on them which helped enormously for the itch...but now I wonder about the witchhazel because it has 15% alcohol in it. Alcohol from what source? I am getting paranoid! Judi
  5. Well folks,I think this is just a matter of semantics; same phenomenon but at what degree does it get called celiac instead of gluten intolerance, or subsequent leaky gut? I think the disease is a spectrum from people with no symptoms and no damage (haven't had a triggering event yet), to people with no symptoms but positive biopsies (the gold standard for Dx of celiac) and people with both gluten-intol symptoms and some degree of damage; maybe detectable by biopsy, maybe not, and people with gluten intol, other food intolerances due to leaky gut (but gluten damage happened first (maybe biopsy + or -) and people with casein intol first then gluten (rare buggers these!) etc! Of course, there are the people out there too who have leaky gut syndrome induced by say a bacterial toxin and have developed sensitivities to foods they normally eat, but since they don't eat wheat...say it's a rice based diet!...they don't have celiac. And if these people were given the typical American meal (gluten) they would then be instantaneously gluten-intolerant and ...celiac if there biopsies were positive! But perhaps they don't carry the known celiac alleles of the HLA because their ancestors didn't eat a wheat based diet. The biopsy is obviously not a gold standard diagnostic! We are all unique and in my humble opinion, it is all a matter of degrees along the spectrum of a single disease phenomenon--what happens when the lining of our stomachs no longer provides an effective barrier. BTW, I just read a description of dermititis herpetiformis and guess what? I thought those were insect bites of some kind, like fleas. But itchy pus-filled raised bumps...there are two healing on my leg and I have been getting them for a couple months. Would you guys describe any DH you might have? Thing is, I never remember getting bitten when I have these. OK. Seems clear to me Ok. Katie, maybe I was giving him too much credit, eh? BTW, I just read that NSAIDS and other pain medications can lead to leaky gut syndrome and guess what the orthopedic specialists (not my family doc) had me taking rather large doses of after my injury five yrs ago? So much so that I thought the NSAIDs were the cause of my hematuria (which presented before any gastointestinal symptoms, etc). So chicken or egg comes first? Doesn't really matter now does it? Not like I'd EVER be able to establish that THEY provoked the leaky gut and subsequent onset of celiac. Probably would've emerged at some point later in life, so maybe I should just be thankful that at least I know now. Damn.
  6. Making an assumption Rachel. I don't have insurance for any testing right now. I know I am gluten- and casein-intolerant with additional food sensitivities which I developed over the past few years. I think he was making his Dx based on my history. My doc believes everyone is gluten-sensitive to a degree, whether they notice it or not because gluten is so resistant to digestion. He believes it tires every body out since the body works so hard to eliminate it. This is true, it's all a matter of degrees. These seed storage proteins are very resistant to all sorts of proteinases. Human were not meant to eat grass! Distinct from the IgA-mediated destruction of villi in celiacs, just physically getting rid of it tires a body out. The protein isn't broken down and so the immunogenic peptides continue stimulating cells, causing release of cytokines, etc that wear the body out since it is a constant state of stimulation. The peptides finally leave one's system when the cells carrying them actually die and slough off, faster than they would if they were quiescent, but still takes months for a completely new lining. Whether the digestion-resistant peptides are presented to white blood cells (in celiacs) or not (non-celiacs), it still goes through all the processing other immunogenic peptides go through. This is harder on cells that the typical processing of digestible proteins and peptides. Essentially, if a food is broken down small enough, the resulting amino acids aren't immunogenic. If food can't be broken down well, it stimulates a response in dendritic cells and then depending on one's genetic predisposition (ie carrier status of HLA "celiac" and "alternate celiac" alleles), the dendritic cells will present the peptide to leukocytes to induce an immune response, or not. For further reading: The Journal of Immunology, 2004, 173: 1925-1933. Copyright © 2004 by The American Association of Immunologists Wheat Gluten Causes Dendritic Cell Maturation and Chemokine Secretion1 Marina Nikulina*, Christiane Habich*, Stefanie B. Flohé*, Fraser W. Scott and Hubert Kolb2,* * German Diabetes Research Institute at the Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany; and Molecular Medicine, Ottawa Health Research Institute, Ottawa, Ontario, Canada Wheat gluten causes gut inflammation in genetically predisposed individuals. We tested the hypothesis that wheat gluten is not only a target of adaptive immunity, but also modulates the function of APC. Dendritic cells (DC) derived from the bone marrow of BALB/c mice were exposed to chymotrypsin-treated wheat gluten. This induced DC maturation as estimated by all surface markers tested (MHC class II, CD40, CD54, and CD86). The effect was dose dependent, and, at 100 µg/ml gluten matched that caused by 10 ng/ml LPS. A role of endotoxin contamination was ruled out by demonstrating the resistance of wheat gluten effects to LPS antagonist polymyxin B. DC from LPS nonresponder strain C3H/HeJ were affected by wheat gluten, but not by LPS. Proteinase K-digested wheat gluten was unable to stimulate DC maturation. Wheat gluten induced a unique secretion pattern of selected cytokines and chemokines in DC. Classic pro- or anti-inflammatory mediators were not produced, in contrast to LPS. Rather, chemokines MIP-2 and keratinocyte-derived cytokine were secreted in large amounts. We conclude that wheat gluten lowers the threshold for immune responses by causing maturation of APC, by attracting leukocytes and increasing their reactivity state. In the presence of an appropriate genetic predisposition, this is expected to increase the risk of adverse immune reactions to wheat gluten or to other Ags presented. http://www.jimmunol.org/cgi/content/abstract/173/3/1925 Leaky gut syndrome with gluten intolerance, isn't this celiac? Unless he doesn't think the gluten caused the leaky gut but developed afterwards... which doesn't seem likely! Well, Katie, this was the first time I had discussed it with him. Perhaps he'll brush up by my next visit. And perhaps I should send him all the journal references I have? It was a better response than I thought a typical family practitioner would give but I don't know whether it is just matter of semantics. I know I am gluten-intolerant but I don't know if I am celiac. I know eating other foods is resulting in immunogenicity towards those foods, at an alarming rate (leaky gut). An elimination and gentle detox can only help but should I put money into the UltraClearPlus? Or continue eating right? Egads. Judi Once again, sorry this is so long.
  7. I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment. He wants me to do a month long elimination diet and cleanse. Most of the diet recommendations I already follow, having figured it out myself but there are some differences I'd like to get your feedback on. The diet would require me to forgo beef and alcohol for a month. I live on beef! Start my day with it. I follow the Blood Type Diet for a type O and I can't seem to get the day started if I don't eat beef. This diet/cleanse would require that I start the day with a Metagenics Smoothie -- UltraClearPlus. Anyone out there tried this? It is balanced; 15g protein, 19g carbo, 3g fat, with vitamins, minerals and amino acids. He says I can have more protein as a snack later. The primary guidelines are:elim dairy, eggs, beef, pork, veal, gluten, caffeine, citrus, peanuts, etc, etc, and alcohol. It says "eliminate gluten, avoid foods that contain wheat, spelt, kamut, oats, rye, barley, amaranth, quinoa and malts" Now we all know that amaranth and quinoa are gluten-free; do you think they are included as an elim because of the possibility of cross-contamination, or simply because they might be hard to digest, or is it a mistake? I just bought some of both to expand my choices!!!! And really, mightn't a glass of red wine be OK? Even helpful?! And I am supposed to (already have) eliminate all of the environmental estrogens in my life. As docs go, he is way ahead of the curve! Judi
  8. Like Stephanie, I use the Giovanni hair products and Seventh Generation cleaning products. I was using Aubrey Organics on my hair but had to switch recently because the conditioners all have wheat germ oil. Shampoos are OK and smell wonderful -- my aromatherapy I really like the Aubrey Honeysuckle Rose Shampoo, and Passion Fower and Morning Meadow Ultimate Moist lotions. These products, are gluten-free and absolutely no chemicals (other than botanical extracts and antioxidant vitamins) have been used in their formulations. I had swithched to Aubrey products 2 yrs ago to rid myself of estrogen-mimicking chemical additives like the parabens. Then there is the Burt's Bees line of products. I use their toothpastes, several different lotions, and tinted moisturizers and makeup. I no longer have a need for it but their sensitive skin Glycerine Rose toner is great, etc. Check them out! Some info at www.aubreyorganics.com and www.burtsbees.com Enjoy, Judi
  9. Thanks nogluten!, I see my family doc tomorrow and I'll at least find out how much the testing costs. I don't have health ins right now so I am flying blind with the nutritional approach! Calcium and Vit D are of concern since I am intolerant of casein as well. Anyone know of good non-dairy sources of calcium and vit D? I drink wine diluted 1-1 with water...hits me hard, stuffs me up, probably the sulfites. I put up with it after all, I need a vice or two at least!! blueshift, I have no idea how long it takes to clear up -- if you have insurance, I'd go to the doc anyway. If not, maybe you could cancel or put it off to give yourself time to determine if it is the gluten making you go frequently. I think most of the money I have spent on docs all my life has been wasted -- current family doc is the exception. A brilliant man who actually listens! At least for a few minutes! Judi
  10. Gotta say I am still confused about this yeast question. So I did some internet research and I am currently reading The Gluten Free Bible by Jax Peters Lowell and I'll quote first from the gluten-free Bible: "But an accident is just that and they happen to all of us. Many years ago, before I had the hang of the diet and knew better, I decided it would be healthy for me to add brewer's yeast to my morning tonic. I know what you're thinking. Jax! We all make honest mistakes in the beginning. There's no shame in it. At first I felt fine, then I noticed, to put it as gracefully as possible, that bathroom visits were increasing while the rest of me was decreasing at an allarming rate of four pounds in five days. It wasn't long before I realized the morning drink was the culprit. I tell you this not to be indelicate but to illustrate how symptoms of gluten ingestion are different for everyone." p275 One recipe in the book lists dry yeast as an ingredient, so dry is OK. I have seen Torula yeast used in gluten-free products. Baker's yeast is gluten-free according to http://www.gastro.net.au/diets/glutenfree.html while yeast extract including Promite, Vegemite and Bonox are not. Brewer's yeast is not gluten-free, leaving nutritional yeast up in the air. from http://www.fortunecity.com/boozers/brewery...beer/gfbeer.htm "Another concern is the yeast. I fear even the slightest contamination of gluten could harm a Celiac. The ‘smack-pack’ liquid yeast that I have become accustomed to using is out of the question. Well, not exactly. A ‘smack-pack’ yeast starter is a small bag that contains a pure liquid yeast culture, and inside that is an even smaller pouch, which contains a barley based growth medium. When squeezed, or smacked, the inner pouch ruptures into the outer, allowing the yeast to meet the growth medium. The growth medium is the problem here, because it contains gluten. If you cut open the pack without smacking it first, you can pour off the pure yeast culture in the outer pack and grow it into a starter batch using extract from a non-gluten source. A simpler method than this is to use a dry yeast. Several good dry yeasts made specifically for homebrewers are available. Dry yeasts are propagated in a molasses based growth medium, making them ideal for gluten-free beers." Definitely thinking of brewing my own Bottom line, stay away from Brewer's yeast, yeast extracts, and for me, "nutritional" yeast is to avoid unless the package also says "Gluten free"! Judi
  11. Mariann, yeah, I can see the problem with being a celiac and trying to follow the BTD as an A. I am an O and what is recommended for me is lots of meat and veggies. Gotta say though, with the gluten issues now, following the BTD too is very restrictive. I am so scared I'll hurt myself further if I eat a BTD "avoid". As I have said in another thread, I do believe the science behind the BTD and following it was how I determined many of my food allergies and the gluten sensitivity. I will continue following it and once I am completely recovered, in a godzillion years, I may consider re-testing some of those avoids to see how I feel eating them then. Thanks for your other helpful comments too. Rachel and Jennifer, I have been wondering how I could have a yeast problem when I don't eat alot of sweets. I have 1 tsp honey in my mug ot morning yerba mate tea and then 2, maybe 3 Pamela's cookies in the evening. Other carbs are pretty minimal. I am intrigued by what you said Jennifer, "I don't know who I believe but for myself personally, stress and anxiety were causing the majority of my problems. After I started some anxiety meds, almost all of my symptoms have ceased." I am a rather tightly wound up person. I have been getting anxiety "attacks" for over 2 yrs now and also think some of symptoms are related, or at least, the symptoms would get better if I could relax. This is one reason why I gave up coffee 2 yrs ago. I think my adrenals have been "shot" for many yrs now. Would you mind telling me more about your symptoms and how they were alleviated by the meds and what meds? Thanks everyone, Judi
  12. Danceswithwolves, I too am new to this gluten-free diet but I have been following Dr. D'Adamo's Blood Type Diet for about 2 yrs now and I have learned a few things about making healthy food a bit more convenient. There is a thread entitled "Food Questions" where you will find some great suggestions--in addition to mine! LOL! Forgot to mention papadums on that thread-a great tasting Indian chickpea flour crispy bread. I get mine from an Indian grocery store. I strongly encourage you to have a look at www.dadamo.com. Each of us is unique and one way in which we differ is our blood type, which is our tissue type. We know food interacts with our bodies, well, some foods cause a bad reaction in people of one blood type but not for someone with another blood type. The diet has been around for a long time, not one of those fad diets, and it is based on sound science. I can say that because I am a scientist! I have felt much better following this diet and it was through this diet that I realized I had a problem with first wheat, then gluten, and with milk products, etc. Since they were avoids for my blood type, O, I "eliminated" them a couple yrs ago and am certainly glad I did since now I know I am gluten (and casein)-sensitive, if not celiac. When I say eliminated though, I wasn't checking for the hidden sources of gluten in my life--as I am now. Once you stop eating these things, you react much more strongly to any that does sneak into your diet. So, while I was improving by not eating a lot of other foods that are simply bad for me, and not eating bread and pasta etc, I couldn't seem to gain ground with my recovery because of the remaining gluten. Hope this helps. I think you'll find that once your healing gets well under way, you won't need the Rxs. I know I've been able to drop quite a few of mine. Good Luck- Judi
  13. Hi everyone, Thank you all for the suggestions! I had a few questions in the old thread that didn’t get answered so I was wondering if anyone out there could address them? I copied and edited one of those earlier posts below. Thanks- Misskris, I had not considered candidia before but it makes sense and I have had a canker sore for over a yr and a half now. I realize cankers are thought to be caused by viruses and candidia is a yeast but why would just one "arm" of my immune response be challenged?! Is there an easy way to determine if one has systemmatic candidia? I have to see my dr in a couple days so I'll mention it to him as well. BTW, I have to inform my doc that I have determined I am gluten intolerant and suspect I am a celiac. He is great; won't be threatened by a patient telling him their ailments! High time to get him thinking along these lines too. Wendy, I do have confidence that I will get better but I am so worried that I am getting gluten in my system from somewhere I haven't identified yet. Does the body start healing even in the presence of minimal gluten or can no progress be made until one is absolutely free of it? As for the hematuria, the urologist was gung ho to do the dilation without considering any other possibilities--to be fair, this was before I discovered my gluten sensitivity but he was just too sure of himself and EAGER for my comfort. I do have a heart murmur but it has never been noticeable to me. Again though, it's a good thought since I hadn't connected the possibility of my arhythmic breathing and subsequent anxiety to a heart condition--assumed it was related to my asthma since both problems started after the wildfires (2 yrs ago), but that was also the time when I started the Blood Type Diet, discovered a "problem" with wheat and then went gluten-free. And found the beer thread, thanks! Unfortunately, none of these options are available in CA, not even the ciders!!! The owner of a local liquor store is going to try to get something for me so I’ll know by the end of the week. ClevelandBob, 2-3 months of withdrawal? Do you mean that symptoms just get worse for awhile after going gluten-free? How would I know whether it's withdrawal or whether I simply haven't found all of the gluten sources in my life?! I definitely am much more sensitive to gluten than I was just a few months ago. Thanks for the welcome! And I can't tolerate dairy; makes me as or even more sick I am now suspecting eggs and soy and have eliminated them for the past couple days. I follow the Blood Type Diet and therefore don't eat alot of other things as well, like no corn, no potatoes (sweet potatoes are good though), no peanuts, etc. Any of you out there follow the BTD too? So this means I can eat rice! Really though, it means I can no longer trust any food I do not make myself. For ex, all of the lovely gluten-free breads out there have either sunflower or safflower oils, avoids for a blood type O. My husband thinks I should go on a complete elimination diet and then introduce one food item at a time!! Seems I may indeed have to. I thought I was gluten-free, hoped I was getting better. Now I realize I've been getting gluten daily from Hornsby's cider--stopped drinking it the week before last. Stopped using hair conditioner with wheat germ oil last week. Hunting down other sources; cat treats, one flavor of Nutro dog food (others OK), suspecting everything now. Still using all the teflon pots and pans, but it has been a couple years since any flour was used in them for gravies...so all the gluten would've worn away in the following two years, right? Can't afford a new kitchen! Thanks, Judi
  14. Why Many Do Not Participate

    Corrine, I would hazard a guess that if a post goes unanswered it may be due to a high volume of traffic on the board so that the message gets "lost" under new or continuing threads... Many folk on these forums don't have a great deal of time when they sit down to the computer, and may not look at posts three or more pages down. You needn't worry about others being online at the same time or time zones. Just post and we'll see it when we do get online. I am new to this forum and have had good responses to my questions but one thing I know I am doing "wrong" is making my posts too complicated with too many questions... Some questions get answered some do not. Try, try again All of us are here for help and to help, so please share your questions and any solutions you have discovered with us! Judi
  15. While I don't have three kids at home, I do have a gluten-eating husband. He makes it easier on me by usually eating and cooking gluten-free meals we can share--his snack hardly ever make my mouth water anymore! I too make large batches of rice and the gluten-free pastas, cook meat ahead of time to have at the ready--never goes bad. Most of what I eat has to be made at home since I follow Dr. D'Adamo's Blood Type Diet as well as gluten free. I also have additional food allergies that I am still figuring out, like milk products, and eggs i think...... That being said, I buy Imagins soups, all gluten-free except the creamy chicken flavor. Boar's Head deli products are a life saver-- all of tyheir products are gluten-free except Dutch LOaf, Pickle + Pepper Loaf, Hickory Smoked Gruyere Cheese and La Rosa D'Oro Stuffed Cherry Peppers. This leaves a long list of products that are all OK for people on gluten-free diets (and alot of them are OK for me too!). And alot of their products are certified by the Feingold Assoc meaning they don't have synthetic additives which have been linked to behavior, learning and health problems. These products are, however, not cheap. www.Imaginefoods.com and www.Boarshead.com I also make batches of dried fruit--so simple, and jerky is great to have around all the time. Bought a food dehydrator at WalMart for about $15.... And my jerky is so flavorful, the store bought soy-laden stuff doesn't come close! Judi