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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 WRowland

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  1. I Guess I Have To Starve?

    Much good advice here. Remember that millions of human beings thru history and today have lived their entire lives without eating any wheat at all. "What one man can do another can do". Listening to your body is the key skill here for all of us, regardless of the nuances added by additional food sensitivities or autoimmune diseases. Unfortunately, there are no short cuts, it's a skill that takes a lifetime of practice to master, and we're all working on it, one day at a time. The first year, and especially the first months are the hardest. I think that it's impossible to underestimate the emotional contribution. Food is not just nutrition, although for many of us here, nutrition has to become paramount if we want to live instead of die. But knowing that does not allow us to skip the grieving. There is a long, difficult grieving process involved, and surprisingly, it seems that the healthier you are at diagnosis, the longer and harder the grieving. If you've been deathly ill, disabled or have already developed some secondary disease, your choices are clearer. You still don't get to skip the mourning, but it seems to be short and intense with clearer rewards. Food is also community, memory, comfort, etc. And like any other major life change, requires time and replacement to make a reasonable and permanent transition. And the replacement part is the difficulty, eh ?!! I was warned heavily against a simple grain-for-grain replacement because of a family history of diabetes. So gluten free goodies are a long way off in the future for me. So what can replace the comfort foods? When I need comfort, can I learn to write about it instead of eating about it? Can I stretch about it instead of eating about it? Can I walk, or dance, or yoga about it? I like all of these, but I find dry brushing especially useful because outside skin and inside skin are closely related tissue and wired to the brain in similar ways. Feeding skin-hunger is very close to eating, and it strengthens my immune system instead of weakening it. I finally read Jax Peters Lowell's "Against the Grain"-found it used for $2. It has oft been criticized because the author is clearly a member of a wealth and social strata I'll never be familiar with. But I find her coping strategies translate well to my life, mostly because they are mostly about self-perception and attitude, not ingredients or services. Especially, the need to grow up and learn to articulate clearly what we need without expecting anyone but ourselves to be responsible for it. I'd summarize it as "Ask, but in the end it's up to you to save your own life". And we could all use some of her sense of humor and manners. Being sick, whatever the cause, doesn't give any of us the right to be barbarians. We're whole human beings, and we have the choice to use our intelligence and creativity to find elegant solutions that work for us without expecting the universe to revolve around us. And I find that the challenge to use my creativity is a good way to focus on the wide world of healthy and satisfying foods that I can eat, instead of dwelling obsessively on what may have been a favorite but is no longer a life supporting choice for me. The one true advantage that the author wealth affords her is wide exposure to many food styles. But my "daughter of two Army sargents, posted all over creation" childhood did the same for me. I'll literally try anything. Not just once, many times, my personal rule is at least six tries before I give it rest for a year or two. Even then, maybe I'll develop a taste for it later. That has been true so many times in my life, that I never say never. Hang in there, don't give up, it does get easier with time. It's just such a huge change that takes so much energy in the beginning. Eventually, it just isn't so taxing and you get used to feeling better. I also find "Morrie, In His Own Words" and "Close to the Bone" very helpful reading, both about coping with major illness. Sometime I need to get the focus off the food and onto strengthening my survival and living my life.
  2. It's also important to address calcium balance. Google this.
  3. Also do some research on calcium balance. Celiac is a good example of the intestinal tract not being a passive funnel. Just because it goes in the mouth does not mean it gets where it's needed. Bone scans and vitamin levels to confirm that absorbtion is actually taking place is valuable info. Also consider learning more about calcium balance. And highly recommend great book with hated title, "Strong Women Stay Young"
  4. There's also a joke around the forums about going to conferences-how will I recognize you when I see you-I'm the one with red hair-and everyone has red hair. This gene family is very high in Irish, Italian, and Scandinavian populations, but European in general.
  5. I'm DQ8 and Irish/Scottish/English/Dutch. My husband is DQ2 and Irish/Polish.
  6. Any hard lump is suspicious for celiac and probably gluten sensitives as well. Especially, in the armpit, groin, collarbone or jawline. These could be swollen lymph nodes and need to be evaluated. Lipomas, sebaceous cysts, lymph nodes reacting to infection are the most common findings. But lymphoma (cancer) is one of the major complications of untreated celiac, and every celiac should be aware of this risk. A persistent swollen lymph node needs attention.
  7. Ironic

    I also found my gluten problems while researching for a treatment for my osteoporosis. Very strong history in my Irish family, etc. Have a few things for you to think about. Gluten-free will definitely address the subtler mal-absorption problems. Good intake of Ca-Mg-Vitamin D and other trace minerals is critical, but the mal-absorption has to be addressed first. Another benefit of the gluten free diet is that it is a radical change. So radical that you might as well go all the way to a sound, nutrient dense diet, period. For osteoporosis, this means addressing calcium balance. Search on that subject for a full explanation, but basically it means taking in more than you are losing. For most Americans that means getting real honest about what we're eating. Gluten is a big part of that, but just the beginning. Over consumption of protein is also a huge factor, sodium intake and over all pH of the diet is critical. I have found a free website that has been invaluable for this: www.nutritiondata.com. Start with ND Quick Start in upper left hand corner and go from there. I also recommend highly the book "Strong Women Stay Young". Hate the title, but the book is life changing. Osteoporosis is complex to say the least, and best attacked on several fronts. Think of it as a four legged stool. One leg is Calcium Balance, another is hormone platform, a third is weight bearing exercise, and the last is stress management. A gluten-free diet that is truly nutrient dense and not just replacing one nutrient poor grain for another is a great step forward to establishing Calcium Balance. But the stool will still fall if the other three legs are missing. Hope this helps...
  8. Winging this from memory, but here goes. The Roman Empire was built on Egyptian wheat, which they called "korn". It was Einkorn, which is the ancestor of modern wheats. (In Latin, this was the earliest form of Triticum, not to be confused with what we call "corn", which is Zea.) It had two sets of chromosomes like human beings and is described as 2N or diploid. There were also some naturally occurring wheat that had four sets of chromosomes, or 4N or tetraploid. This was the wheat that the Roman Emperor, Eqyptian pharoahs and Christ were eating. But what is on our table has been selectively bred over time to increase the gluten content for baking or pasta-making. Most are hexaploid, octoploid, double hexaploid, or hexaploid-octoploid hybrids. This means that they have 6, 8, 12, or more sets of chromosomes. Some of this extra DNA is coding for amino acid sequences that human beings cannot break down, including a 33-amino acid sequence named 33-MER. This 33-MER is what is causing the problem for celiac. Our immune systems are attacking this chain as though it were an invader or parasite. But this sequence is also similar to human tissue, and this inflammation can progress into an auto-immune disease. This auto-immune phase is really damaging, and largely incurable. Control is the only treatment, and life-long gluten free diet is the only control.
  9. I'm 52 and was having increasing problems with both urinary and fecal incontinence before I found my gluten problems. Researching my osteoporosis lead me to celiac. So I've been eliminating gluten for about three months now, progressively better, but still not perfect. Both problems have improved so much that I no longer think about them. Dr. Fine says that there is nerve damage, especially to the sphincter muscles that close off bladder, rectum and stomach. So acid reflux and bladder and fecal incontinence are definitely associated with gluten sensitivity and celiac.
  10. Great info on the on-line websites. Get one of the great books on the subject. I know that "Going Against the Grain" has a discussion about insulin insensitivity and PCOS that would be helpful. It keeps me returning to the fruits and veggies and not just substituting one poor nutrient grain for another. Check out Dr. Mercola's website and his extensive info on PCOS, and can't recommend www.nutritiondata.com enough. It's free and it's being my best coach in the transition. Start with the ND Quick Start in the upper left hand corner and go from there. This is a hard switch for all of us. We need facts without judgement. It's so easy to get half results because we didn't know enough. PCOS especially needs a diet reconstruction that emphasises excellent nutrient all around, not just gluten-free. Keep coming back, lot's of help and love here.
  11. And DQ7(301). Can you tell I'm really upset?
  12. Sorry, that's DQ2(201) and DQ8(302).
  13. Got my daughter's results in-she didn't get my DQ8(201) or my husbands DQ2(302).... She's double DQ7(302). I was well prepared for explaining DQ2/DQ8 but not this. What I can find about it, beyond "gluten sensitive" is that it's dark grey in a medium grey area. Some are saying that it may be a third celiac gene. So, I'm looking for anyone with this genotype to chime in, especially symptoms they experienced, especially pain and neurological. This is a big life style change for her and she needs to recognize herself. This is a mother begging. Please help me help her.
  14. In general, food based is best, with supplementation as needed. It may be more than Calcium/Vitamin D. Check out www.nutritiondata.com. Start with ND Quick Start and go from there. I was already taking supplements for my bones, but realized that I was doing well for some things, but really needed a vitamin E supplement after using this site.
  15. I apologize in advance. I know this is going to be a long post. You really hit about five nerves. I'm so angry that I don't even know where to start here. First things first. You need specific gene testing. You need to know what she has, not just what she doesn't have. You only have to do it once, forever. My husband has DQ2 and I have DQ8 and our daughter has neither of these, but a double dose of DQ7 and a negative biopsy. My daughter has the worst symptoms of all of us, including neurological. The gastro that did her biopsy sent her home, "nothing wrong with you". According to Dr. Fine this genotype is associated with very high anti-gliadin antibodies, neurological problems, but may never have eroded villi. In other words, she could suffer for years while the doctor’s fight it out whether she should be gluten-free or not. I don't think you get points in heaven for dying with your villi intact. But I have found several recent journal articles which suggest that DQ7 may be under-investigated, and may be a third celiac gene. “Our data do not support an earlier finding that HLA-DQ7 is a non-susceptible molecule.” http://www.clinchem.org/cgi/content/full/44/8/1755 The point is that all of us are dealing with a wide continuum of disease syndromes, symptomatic and asymptomatic, that the researchers are still arguing about and probably will be for decades. The clinicians range from completely clueless and thinking they will never see a case of this in their career, to arrogant enough to think that anything they read ten years ago, or last year or even as recently as last month was the final word on the subject. Only a few enlightened ones understand the lifetime nature of this, that the information is changing rapidly, much less that it’s contributing at some level to the health problems of greater than 50% of the population. Which leads me to the real anger: I do medical autopsies for a living. 95% of what we see on the morgue table is some form of suicide by fork. Some were deliberately ignoring their doctor’s advice. Many more were following it faithfully. Most doctors have got a lot of nerve even suggesting that they’d know a healthy diet if they fell on it. The doctor's have been criminally ignorant and their track record in the whole area of nutrition is abyssmal. I was a preemie who struggled to ‘thrive’ for at least the first five years, in and out of the hospital. By then, I had developed into a ‘picky eater’. This drove the four adults that I lived with crazy, in large part because they were pressured by the doctors to ‘feed me better’. I developed a strong will. Get this: for three years, starting around age three, I would only eat corned beef hash. Apparently, I was willing to starve or eat corned beef hash, period, and kept it up against four adults for three years. This has been a funny family story for my whole life. It’s no longer funny to me. Is it possible that I found a gluten-free meat-and-potatoes diet to control my own symptoms? All of this information is expensive, confusing and some of it has a short shelf-life and will be updated many times in you child’s lifetime. Count your blessings. You will have more information and more tools to decide what to do about it than anyone on earth has ever had before. Don’t waste that power trying to get a perfect answer from any doctor, period. They are advisors at best, and you and your child have to live with any answer you commit yourself to. Make use of all that power at your fingertips to help you, like these support groups. And other tools. I have a lot of damage to undo. Like my bones falling apart. So maintaining a reasonable weight is just the beginning. I need and your child needs excellent nutrition. I found a fabulous tool for evaluating the diet you are actually eating. It’s a free website: www.nutritiondata.com. Start with the “ND Quick Start” in the upper left hand corner, and go from there. It is hands down the most powerful tool for creating a balanced, healthy diet around any restriction that I’ve ever seen, and I’ve evaluated lots of them. The nurse’s I’ve shown it to all agree with me and are starting to drag their nurse friend’s down to get me to demonstrate it, because they all what to improve their nutrition. Denial about our own poor diets is rampant among health professionals, especially doctors. Diet is very much an issue of culture. We were taught to eat grains, and don’t know what a healthy diet looks like without grains. The doctor’s don’t either. So many won't even suggest gluten free because they can't stick to a healthy diet themselves. The single most important thing to remember is that grains are not necessary to a healthy diet. Simply substituting one grain for another, gluten-free or not, is not making a healthy diet. Focusing on one nutrient, like protein that is already consumed to such excess in America that our kidney’s are dying faster than we are, isn’t making a healthy diet either. Addressing ALL of the health promoting nutrients that are needed is the only way to make a healthy diet. We need help doing that, especially if the culturally approved choices happen to be problematic for us, like gluten and casein. But www.nutritiondata.com is not biased, it just crunches the numbers for you with one click. If there are weaknesses you’ll see them. Another click will bring you pages of specific choices that will fill the gaps. If one day is a little weak in one area, emphasize it the next day or two. It also helps to have the advice of a dietician that really “gets” gluten-free. Live one’s are rare, but fortunately some great ones have written good books that help: “Going Against the Grain”, “Wheat Free, Worry Free”, etc. My parents, both medical professionals, did one thing very, very right, even before this kind of information was available. On a very basic level, often in spite of themselves, they taught me to trust myself, eat when I was hungry, sleep when I was tired, listen to my body. Genetics do not change. Symptomatic or not, active or not, it will never be a GOOD IDEA for anyone in my family to eat gluten in any amount, period. But here’s the good news. If I learn, and it will be a long curve, to re-create my eating habits for good nutrition, I won’t just avoid celiac and it’s complications, I will also beat 90% of everything is killing the whole country. Eating fruits and vegetables, not grains or meat/beans are consistently associated with protection from disease from ALL causes. My family tended to live to a ripe old age when they lived in isolation, ate the corn and beans and meat they raised themselves. The trouble started when they came out of isolation and starting buying their food in grocery stores. If I learn to choose wisely, I can turn time back to my grandmother’s generation and make mine a ripe, healthy old age. And if I teach my children and grand-children we'll outlive even the oldest of the old-timers. Last but not least, there’s Bernie Siegel. Cancer surgeon that noticed that some of his patient’s survived while most didn’t. Same cancer, same surgery, similar treatments. He started to ask the survivors what they were doing. Eventually wrote “Love, Medicine, and Miracles” and others. One of my personal heroes. This has always struck me hard, from the first time I read it and every time I have to face a medical challenge: He noticed that for the survivors, the doctor-patient relationship was usually judged as poor by the doctor-in other words the patient’s questioned their doctor’s advice constantly, often choice diets, supplements, exercise regimen’s, etc. that their doctor’s didn’t approve of. Sometimes they refused treatments or disregarded diagnosis. Their general attitude was “this feels right to me”. So they questioned a lot and then committed themselves to courses of action on their own recommendation, sometimes in disagreement with their doctors. But, even more striking, they were willing to re-examine everything again, over and over, when new information was available and change direction and their commitments accordingly. This is good advice for coping with any medical condition, commit yourself when you need to, but change direction when you need to.