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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 mtnplanner

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  1. This is just my opinion, but with a little research you'd find there is a strong connection in the scientific literature for all of these disorders. Addison's is basically adrenal fatigue taken to the worst extreme and you will feel very, very fatigued with Addison's. Hypothyroidism can poop you out, (and depress you) too. There is no 'quick fix' so gear up for some hefty work on dietary issues to improve how you feel. I'm sure your doctors will prescribe lots of things but much improvement can be accomplished with a knife and fork. Celiac's disorder could certainly be an underlying cause for the autoimmune issues, and correcting the diet to be strict gluten free (and I mean absolutely STRICT) will certainly help in every area of health but it takes time to see improvements and up to 2 years to heal the leaky gut. I myself am a 'silent celiac' so I don't show gut symptoms but several years before I found out about the Celiac's I experienced subclinical hypothyrodism and Chronic Fatigue Syndrome (low adrenal function) plus a bunch of other complicated health issues. Finding the Celiac's diagnosis was a big help in my feeling better. In my opinion if your blood test showed Celiac's, then the normal biopsy could possibly mean that you don't have as much gut damage (yet) but the autoimmune disorders are indicators that your health is in serious jeopardy. Thus being strictly gluten-free would be a great first step. If you need a comfort cookie then choose a gluten-free cookie. If you need a comfort bread then find a gluten-free bread. Being gluten-free doesn't mean you can't eat comfort food. Personally, I find Betty Crocker's new gluten-free brownies (mix) to be a 'fallback' food, or a homemade black bean brownie Clean out your pantry, refrigerator, freezer, and spice shelf and get started on a healthier life! Overcoming adrenal fatigue is a long haul. Addison's is a very difficult disorder, and can be life threatening so it's important to learn all about it. From personal experience (adrenal fatigue, thyroid issues and Celiac's) it takes about 2 years of real attention to diet to substantially improve Adrenal Fatigue, and that's not as far down the health scale as Addison's. (You may be one of the lucky one's helped by meds.) Thyroid medication was really helpful to me on a number of hypothyroid symptoms but also took a couple of months to find the optimal dosages of thyroid hormones. (I do best on Armour thyroid instead of the synthetic Synthroid). Knowing you have an adrenal problem as well as a thyroid problem is very important and useful finding! Oh - on a side issue, I have found that in correcting vitamin deficiencies connected to the various disorders I have, I do best with either blended green smoothies and/or liquid vitamin supplements. All of those health problems I mentioned impaired my digestive system and I wasn't getting what I needed out of my food or from traditional supplements in tablet or capsule form. I found I felt noticeably better after a couple of weeks using a liquid multivitamin in addition to an improved diet. Currently I'm following a 'Paleo' eating plan as I find it simpler (for me) to follow this type of meal plan than the traditional gluten-free/casein-free meal plans that use alternative grains and substitutions for dairy. 'Paleo' as a diet is grain-free and dairy free by definition, (though many Paleo people do use dairy). I don't eat dairy as I'm also casein intolerant. Fortunately, the levels of animal protein recommended in Paleo are very helpful in improving adrenal function and thyroid function so the 'Paleo diet' sort of fits all my personal health issues. (I couldn't improve my adrenal function as a vegan or vegetarian) Dr. Loren Cordain's revised edition of 'THE PALEO DIET' is out in paperback and it's a good read and there are lots of web sites devoted to Paleo style eating, recipes, etc. so even though it's not a 'Celiac' diet, it works for Celiac's becasue it's gluten-free. So be hopeful! Lot's of us have been where you are now. Life does get better! You have more pieces to the puzzle! You do have options! Lots of books lots of web sites, lots of people who've been down the same road. Now - go out and find some gluten-free comfort foods for those bummed out moments, pour yourself some gluten-free Almond milk, and have a gluten-free brownie for me!
  2. I'm blood type A. Theoretically I should do well as a vegetarian or a vegan according to the principles of the 'blood type diet'. And in fact, when I was a vegan for 2 years my lab tests improved in a number of areas and I reversed out of type 2 diabetes. Alas, I discovered the hard way that being a vegan isn't always the best long-term choice for a person with both hypothyroid and adrenal issues as such disorders really do need good protein levels to restore health. I found restoring adrenal function too difficult to accomplish as a vegan. Top vegan support groups had no answers for the dilemma of how to get enough plant protein to restore the adrenal system, either. (note that soy proteins are not recommended for hypothyroidism) By the end of 2 years as a vegan my digestive system went to pieces, too. So, I stopped being vegan, did more testing, and now eat 'Paleo-style'. Now this doesn't mean that I think poorly of 'the blood type' diets. While the science may be a little shakey, the concept on eating foods related to your genotype does have merit. What isn't generally addressed is that you also have to know your own hidden food intolerances when using the suggested food tables. I found Adamo's identification of health disorders and blood type associations useful, but the food recommendations seem a little hit and miss when you get down to specifics - but no more so than any other popular diet book. It wasn't until after I'd spent 2 years as a vegan that I learned that I was genetically and actively intolerant to gluten, intolerant to casein (all dairy), and really don't do well on grains in general. So I was making things worse for myself - not by the practice of eating vegan per se - but by the lack of knowledge that grains were a problem for my body. I'd excluded dairy as a vegan, but included gluten as well as non-gluten grains. I don't do well on grains which is probably why my digestion failed. And I lost zero weight in 2 years as a strict vegan which was very disappointing, too. Currently, I've gone with the 'Paleo diet' because it's actually pretty easy to implement and excludes my trigger foods. Also, I'm slowly losing weight following a Paleo diet. I ignore the 'evolution' justifications popular in Paleo books. I think it's more accurate to say that our industrialized, lab-experiment food supply simply isn't what our bodies are designed to eat and that people can become healthier eating real food. Our bodies cells simply don't recognize the non-food substances plentiful in manufactured, processed convenience foods. Thus eating 'Paleo' means a return to eating fresh foods, meals cooked from whole foods, etc. Paleo essentially eliminates out much of the most hybridized food stuffs and puts real food back on the plate. Probably any clean eating or whole foods meal plan that eliminates out your own food intolerances would be equally health promoting. I've noticed that the best 'diets' promote the use of fresh whole real foods. Once the books become popular then there's a spin-off of manufactured processed convenience foods that completely ignore the fundamentals promoted in each book of eating real food. A microwaved pre-made meal is a lab experiment. A 'food bar' is a lab experiment. An apple is food. I'd have to say that nearly all diet books are spin off's of the findings of Melvin Page DDS (dentist) who did extensive research on dietary impacts on health (yes, teeth health tells a story) and on blood chemistry imbalances. His "Fundamental Eating Plan" is a classic: http://www.hands2health.com/03-PageFoodPlan.pdf So whatever diet you choose follow, eat real food. If it won't rot don't eat it! Just my nickel's worth of personal opinion
  3. As a follow-up to my earlier post, I'm having some modest success in losing weight after shifting to a 'Paleo" diet. I determined that in addition to being intolerant to gluten and casein, I also don't tolerate non-gluten grains very well either. The 'Paleo' diet' focuses on real whole foods, and eliminates out grains, dairy, legumes and processed foods. Since this pretty much fits my 'ability to digest' patterns, I decided to adopt that eating plan as a way to simplify daily life. Paleo eating patterns also have a higher probability of lowering the blood glucose levels that often accompany obesity. I think it's pretty certain that it's extremely difficult to drop weight if BG levels are above norm. The downside of Paleo is that you have to cook from scratch. I just mention Paleo as a possible way to address celiac obesity, as celiac obesity is a pretty ignored area of research. The presumption that eliminating gluten normalizes weight for silent celaics seems to apply to about 60 percent of obese celiacs [in studies] leaving the other 40% high and dry. So gluten intolerance is only part of the obesity causative factors. Any online search of Paleo Diet will lead you to Loren Corain's web site. His book [Paleo Diet] is very good, but I've also found that Gary Taube's online interviews [Good Calories, Bad Calories] are really excellent in examining the idea that insulin levels contribute to obesity: http://webcast.berkeley.edu/event_details.php?webcastid=21216 and http://videomedia2.swedish.org/mediasite/SilverlightPlayer/Default.aspx?peid=cd8c7aa15bc94a0486f4ee9b66ef8f8f And I've also found that Jack Challem's book "Eat Right for your Genes' provided some pretty helpful information for my particular issues. Obesity that isn't responsive to 'eating less and exercising more' is not a lack of willpower. If the body weight won't normalize, then there is a metabolic problem, and most metabolic problems seem to be connected to the quality of foods eaten, not the quantities eaten. Food provides more than fuel. It provides cellular information. It's taken me years to grasp that fact. Food provides distinctive sets of information to cells - any lack of information and cells devise workarounds like weight gain. In order for the body to run optimally, then it needs plentiful amounts of nutritional information, not lab experiments in a box or can pretending to be food. And always remember, when the classic 'diet and exercise' doesn't work, it's not the patient's lack of willpower or effort at fault. Blaming the patient is the fallback position of an incompetent doctor. If your doctor isn't willing to test for fundamental metabolic imbalances when you've clearly made serious efforts to overcome obesity, then find another doctor. Never give up hope of finding answers.
  4. As a follow up to my previous post, I'd like to add a few new items. Alas, simply going Gluten-free Casein-free hasn't caused me to lose weight, so I'm doing further research. It appears that it's not uncommon for celiac/gluten intolerant patients to react unfavorably to millet, soy, and buckwheat even while avoiding gluten grains. [from Book: Good Food for Bad Stomachs by Henry D. Janowitz, MD] That finding is actually consistent with my own pulse testing. I've used a variation of the Coca Pulse Test (recommended by my FNP) to self test for food sensitivities. I've found this little home-test to be pretty useful, though my FNP uses an increase of 6 beats per minutes as a cut off point instead of 4 beats per minute during a food test. [http://tuesdayminute.net/Coca%20Pulse%20Test%20Form.pdf ] The Coca Pulse Test for Allergies book itself uses more complex methods. The entire book is available online free at: [http://www.soilandhealth.org/02/0201hyglibcat/020108.coca.pdf] but the shorter self test is a very good indicator of potentially problem foods. Basically, I test several foods first thing in the morning before breakfast by sitting at the table for a couple of minutes, taking my pulse for 0ne minute, taking a mouthful of the food to be tested and chewing but not swallowing for 30 seconds. Then I retest my pulse for one minute. If my pulse increases by 6 or more beats per minute then I consider it a problem food for me. Some foods may even lower the pulse count. I keep a log and over time I've got a list of how I react to different foods. Mostly, grains raise my pulse, vegetables and fruit lower it and meat reactions vary considerably. After considering my individual situation (the need to improve adrenal function meaning I need to eat animal protein but avoid dairy and grains) it has led me to try the Paleo Diet. It's basically animal proteins, vegetables, fruits, nuts and seeds. Consequently it's both gluten free and dairy free by default. It's apparently popular with crossfit athletes - not that I ever hope to be athletic again. There's quite a bit online about paleo eating/cooking and Cordain's book 'Paleo Diet' is available at most book stores. I've located two free paleo cookbook downloads: http://www.lalannefitness.com/images/uploads-main/paleo_breakfast_recipes.pdf and http://liveprimal.com/LPrecipes.pdf and there's also a web site with tons more recipes at: http://paleofood.com/ So far I seem to be losing a little weight but it really too soon to tell if Paleo will be my particular answer to the weight issue. Any weight loss is welcome, though. I also came across an entire lecture by Gary Taubes ( the guy who wrote 'What if it's all a big fat lie?') and author of 'Good Calories, Bad Calories'. It's really worth the hour plus time it takes to listen to the lecture/slides. here's the long link: http://videomedia2.swedish.org/mediasite/SilverlightPlayer/Default.aspx?peid=cd8c7aa15bc94a0486f4ee9b66ef8f8f Taubes findings are that insulin levels ultimately determine weight gain, not calories in/out. This is actually good news since one can control blood glucose levels with diet modification. His findings make a lot of sense to me since I've found the traditional admonitions of 'eat less exercise more' to be useless. I don't know if this will help anyone else to connect the dots but I thought I'd pass it all along.
  5. I'm also new to the forum. I haven't have the issues with the severe weight loss, but I certainly can relate to the huge gain, fatigue, etc. I'm gluten intolerant but not celiac. It's seems entirely possible that the weight gain combined with the fatigue and tendonitis/joint pain are related to adrenal function/thyroid function. Active celiac disorder often is accompanied by adrenal fatigue and thyroid issues. Both of these autoimmune issues can cause significant weight gain and severe fatigue. If your MD won't test for adrenal function, you can get tests through various groups like the Canary Club. There's a great deal of useful information on thyroid connection to Celiac, and thyroid issues at this link: http://www.stopthethyroidmadness.com/celiac/ I have subclinical hypothyroid issues and (take Armour thyroid after a long argument with the MD). I also have very poor adrenal function. The adrenal issues have improved slowly but it takes about a year or more to repair adrenals so it's not a quick fix. Low AM cortisol can trigger severe fatigue: http://www.endfatigue.com/health_articles_r-s/Sleep-cfs_low_morning_adrenal_cortisol.html In my own case the weight gain appeared first, then the thyroid malfunction, then the adrenal malfunction, then digestive issues and lastly finding out that gluten and dairy intolerance were actually contributing problems. Pretty much a person has to address the problems as they arise since there isn't any definitive way to 'test' for early diagnosis of food related issues. Keep at it. You are on the right track.
  6. I think there are a lot of us (morbidly obese) people wandering around out there in search of answers. I didn't have a weight problem until about 12 years ago when I started putting on about 2 pounds a month, every month, in spite of diets and exercise. After a gain of over 100 pounds it sort of leveled out. But none of the medical people had much in the way of answers. Still don't. If diet and exercise don't work, then the MDs simply shrug their shoulders, mumble about patient compliance and blame you for not losing weight like they said you should. I swear if one more medical person tells me that I need to lose weight, that I need to eat less and exercise more I'm going to rip their head off and spit down their throat (just joking of course, think of the mess!) Nobody but a sumo wrestler wants to carry around 100 extra pounds! After I did thousands of hours of www research on obesity factors, I went back to the MDs and asked about hypothyroidism. So about 7 years ago doctors said, "looks like you've been subclinically hypothyroid for at least 10 years" ROTFL. So they started me on thyroid meds which helped ALOT with various symptoms but the weight remained. No amount of diet or exercise has been effective for weight loss. The extremes of Atkins (high protein low carb) and Vegan (no animal products at all) had exactly the same results - no particular weight loss, but I did reverse out of type 2 diabetes with a vegan diet. My health continued to decline so I continued to do more research. Finally, I started getting lab tests I felt needed to have done outside of the mainstream/health insurance/doctor office. I got tested for adrenal function - something MDs should have done before starting me on thyroid meds. My adrenal function was completely opposite of norm. Poor adrenal function combined with poor thyroid function makes it practically impossible to lose weight. I learned you can't repair adrenal function on a vegan diet so I added meat back in. And then I started having severe digestive problems which turned out to be very low levels of stomach acid and enzymes - probably why I had so much trouble with Atkins and felt 'better' as a vegan. So now I take HCL and digestive enzymes with protein meals which means I can at least eat without upset. But life continued to deteriorate, so I've continued looking for answers to my slow slide downwards in health. I narrowed the possibilities down to foods eaten. Last month I decided to test for celiac through Enterolab even though I didn't have the classic gut issues and am obese. Food type eaten has to be related to the failure to lose weight since caloric intake/outgo and manipulating food ratios proteins/carbs/fats made no differences in outcome. So back to suspecting food type as opposed to caloric values as a root problem. I'm glad I spent the bucks to gene test (Enterolab). It turns out I don't have the classic celiac genes but I do have a double copy of gluten sensitive genes plus I tested positive for active gluten and dairy IgA. Recommendation from the lab is to go strict gluten-free and casein-free. So while I'm not 'celiac', and would never show up as gluten-sensitive at a regular doctors office, the gene tests and fecal tests for early detection show I am gluten intolerant and dairy intolerant. The question will be whether eliminating those foods will then allow the body to release the excess weight - the gluten and dairy 'toxins' stored as fat. Of course being both gluten and dairy intolerant may explain some of the lack of results in 'dieting' - gluten was excluded on Atkins but not dairy. Dairy was excluded as a vegan but not gluten. I still need to test for corn and soy issues, but maybe I'm on the right track. I'm re-assessing all of the data I've gathered over the years, everything I've learned about 'dieting', in the hopes that a Gluten-free Casein-free eating plan will improve my health and ultimately result in weight loss. The scientific studies indicate that morbidly obese celiacs do tend to lose considerable weight on a gluten-free diet just as underweight celiacs gain/normalize their weight on gluten-free diet. I'm hoping that's also true for the gluten-intolerant folks. Link: http://www.biomedsearch.com/nih/Body-Mass-Index-in-Celiac/19779362.html If anyone has suggestions as to a good 'next step', I'm listening. Cheers!
  7. I also was born with a cleft palate, repaired surgically when I was 19 months old (about 60 years ago). I recently tested to see if I had the genes for Celiac disorder (through Enterolab). I don't have the major Celiac genes but I do have a double copy of genes Enterolab identified for gluten sensitivity and am actively reacting to both gluten and casein. Consequently I now follow a strict gluten and casein-free diet. Gene tests: HLA-DQB1 Allele 1: 0202 HLA-DQB1 Allele 2: 0603 Serologic Equvelent: HLA-DQ 2,1 (SUBTYPE 2,6) Translation, I inherited one gluten-sensitive gene from each parent. My mother had lifelong issues with B-12 anemia, was short in stature in a family of tall people, and as an older person developed a series of digestive issues but no classic symptoms of Celiac. My 'guess' is that she went her whole life as an undiagnosed, latent Celiac. She passed away in 2007 at age 86 from acute leukemia triggered by chemotherapy treatment of Polycythemia Vera. I suspect that there is also a latent connection between Polycythemia and Celiac as yet unexplored in medical studies. Cleft lip, with or without cleft palate, affects one in 700 babies annually, and is the fourth most common birth defect in the U.S. Even today the medical literature has no real consensus on the cause of cleft palate defects siting the interplay between genes and the environment plus 'unkown causes'. Current Medical literature indicates that cleft lips/palates occurs very early in pregnancy, usually before mother even aware of pregnancy. Cleft lip occurs at about 6 weeks and cleft palate occurs at about 9 weeks gestation. In the farming community that my mother grew up in, there were a number of 'cleft palate' children. My mother was advised that such birth defects were related to the prevalence of overwork of the farmwives very early in pregnancy, that such birth defects were not directly genetic, and it was not the Mom's 'fault'. Certainly my Mom was overworked. If one cause is a lack of a specific nutrient at a critical time during a pregnancy, it is certainly possible that orofacial defects could be connected to undiagnosed malabsorption disorders like Celiac. After folate was added to cereals around 1996, the incidence of orofacial defects dropped substantially. Therefore, if Celiac disorder contributes to folate malabsorption then one would expect to find a higher-than-average incidence of cleft palates, among the offspring of confirmed celiac parents. So far there isn't much data. The good news seems to be that Celiac mothers following a gluten-free diet avoid major problems with pregnancies. The bad news is that testing for Celiac disorder isn't standard practice. We should be asking why Celiac tests for early detection aren't being done more often, especially among women of child-bearing age. Or maybe all pregnant women should simply be advised to go gluten-free just like doctors advise no drinking or smoking!