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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 Edo

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  1. Rice Works Chips

    I react to them. Too bad, cause they're tasty. I've tried them two separate times, the "sea salt" flavor and the "wild rice sea salt and black sesame" flavor. Both times I got very sick within a few hours and felt crappy for a day or two. I know that foods other than gluten bother me, so I don't automatically blame gluten. But I don't know which ingredient(s) caused it. Also, I can't find soy, as others mentioned, in the ingredients of either of these particular flavors. Am I missing something obvious or are you guys talking about different flavors?
  2. Thank you for sharing. I had decided not to bother because I was so sure I'd just be turned down. I am also curious what they like about your blood; did they test your blood themselves? Or did they ask for lab results from your doctor? Intriguing stuff. Viviendoparajesus: Thanks for the well-wishes. My boyfriend still hasn't found a job, mostly because no one wants to hire someone with a hernia when there are floods of able-bodied applicants to choose from. Our income has been way below the poverty line since, though fortunately that qualifies him for free surgery from a local charity. He is waiting on a referral any day now. So hopefully our suffering is coming to an end soon.
  3. Best Vit D To Take?

    Sorry to be off topic, but it's interesting you mention red splotches. My sister was just complaining of them and showed them to me yesterday. I'm not sure if she's celiac, but she has ITP. I guess she didn't think the spots were petechiae, which appear due to bleeding in small blood vessels under the skin when platelets are very low. But they did look the way you described. Maybe vitamin K would help her. Thanks for mentioning.
  4. Best Vit D To Take?

    I take Carlson Ddrops Vitamin D3, 4000 IU. It comes in other doses too, including 600, 1000, 2000, maybe others I don't know about. It's convenient because it is in liquid form, you only need one drop a day, and there are a year's worth of drops per bottle. This is the best type for absorption, in terms of the type of D (D3) and the fact that it is an oily type rather than a dry pill type. It can even be dropped under the tongue to bypass the digestive system, if your GI system is not in top form to utilize it that way (a problem for a lot of us). It doesn't have a taste. It can be added to a beverage or food also. Ingredients are just D3 and fractionated coconut oil. I think there are other brands like this, but I use Carlson and have been happy with it.
  5. Yeah, antibiotics will really mess up the balance of bacteria in the gut. Especially for celiacs who already have messed up guts as it is. My GI issues got so severe after a course of antibiotics for a UTI, I finally went to my doctor despite no health insurance and low funds, because I was in so much pain I was afraid I was dying! And that's when I found out about celiac, and here I am. I'm a million times better now, but still have issues, probably separate from probiotics since they don't seem to make much difference for me. I hope the probiotics do their job for you, as it seems you really need them after going through all that! I've heard many stories of members here getting over intolerances after healing for a while and getting their systems back in balance. Maybe other members will recommend you some dairy-free brands if you decide to switch, as a lot of us here can't have dairy. You seem to be on the right track though.
  6. I've heard the same thing about the benefits of refrigeration. I've tried several probiotics over the past 16 months because I have persistent GI issues, and am currently trying ReNew Life Ultimate Flora with 80 billion cultures and 14 strains (it may have traces of dairy and soy, which don't bother me in small amounts), because of the high dose and refrigeration. But to be honest, I haven't really noticed any difference in my issues between any of the different brands and doses I've tried, so I dunno what's up with that. But I agree with the above poster that everyone is different, and can have very different reactions. You can always try starting small and building up the dose as they did, or try a different one if Solaray keeps bothering you. And yes, some places online will ship with a cool pack. You will have to check with the particular store if they don't visibly say they offer it. I know that luckyvitamin.com will give you the option to do this if refrigeration is recommended by the manufacturer. I usually order from there.
  7. I live with my fiance; I am gluten-free, but he does not have to be. The way we keep things safe for me is that no gluten is allowed to come near any place where my food can be. It's usually easier for him to just remain gluten-free in the house, and he's very easy-going about it. But sometimes he buys gluteny treats or bread or whatever, and just keeps them in their own little spot, uses disposable plates, etc, and keeps them away from my food and prep/eating areas. Sometimes he prefers just to eat outside if he has something messy. He's very educated about celiac and cross-contamination, so I trust him not to gluten me. Outside the house, he eats whatever he wants. I've had no issues. He just has to make sure to brush his teeth before he kisses me!
  8. I know that when one starts a probiotic, it is possible to get a reaction, usually for no more than a few days, until one's body has adjusted to it. I don't think I've ever heard of hunger being a reaction though, only things like upset stomach/bowel changes. But I suppose it's possible, and maybe it will go away soon. What kind are you using? I used PB8 for a long time, which is gluten-free and also comes in a dairy-free version.
  9. I agree with those who are skeptical. The vaccine wouldn't be for me anyway because I'm not DQ2. But either way, knowing what I now know about nutrition and our food system, even if I could eat gluten and processed foods and everything else, I still wouldn't. Even if they can guarantee zero autoimmune response and no other consequences from the vaccine, that doesn't mean there aren't plenty of other health consequences to eating a "normal" diet again. I think of celiac as forcing me back to a healthy, natural human diet, and away from the food system that is making people sick, celiac or otherwise. The vaccine is just feeding into the mentality that we should be fitted to the system, instead of the system being fitted to us. It makes a lot of dollars, but not a lot of sense.
  10. Glad you're starting to feel better! Allergy testing is not always accurate, and celiac disease is not an allergy to begin with, so testing for wheat/rye/barley allergies doesn't diagnose celiac. You'd need to start with the celiac panel for that, and as you mentioned, you need to be eating gluten much more than once a week or you will likely get a false negative. I never got an official diagnosis, but I'm sure I have celiac. My enterolab results and dramatic response to the diet are enough evidence for me. Sensitivities to additional foods like dairy and eggs are common, especially while healing. I'm sensitive to dairy, eggs, soy, grains, and refined carbs/sugars. Regardless of allergy tests, if you know a certain food makes you feel bad, then listen to your body and avoid it. Sometimes this is temporary. It's possible you'll be able to reintroduce these foods into your diet once your intestines heal enough, as your damaged gut is probably not able to make the necessary enzymes to digest them properly right now. But everyone's different, so there's a lot of trial and error involved. Some people can eat dairy after a few months for example, but I've been gluten/dairy free almost 16 months and still can't tolerate dairy (and maybe never will). As for vitamin deficiencies, just taking a regular multivitamin won't correct a deficiency. Multivitamins are typically designed more for maintenance, and aren't going to be enough to get your levels up quickly. A D supplement in addition to the multi would be a lot more effective. Low D is common in celiac. You'll probably feel much better with normal D levels-- and normal everything else levels. And yes, it's common to become more sensitive to gluten after removing it from your diet. You mentioned getting reactions from gluten-free things... are you sure they're really gluten free? When you say Wasa, do you mean similar to Wasa, or actually Wasa? I didn't know any Wasa products were gluten free. As far as I know, all of them have some combination of wheat, rye, barley, and oats. Anyhow, it is possible that the processed foods you're eating were contaminated with gluten somewhere along the line, even if the ingredients don't contain any forms of gluten. It is also possible you're reacting to some other ingredient you didn't realize you were sensitive to. Keeping a food journal with what you eat and any symptoms you experience can help pinpoint the problem ingredients. But it is usually best to avoid processed foods and stick to simple whole foods in the beginning. It's better for your body and also makes it easier to figure out what you can and can't tolerate. Plus, if you're frequently getting contaminated with little bits of gluten from hidden sources, antibodies will remain in your system and your body will not be able to heal properly. You seem to be off to a good start and it's great you're improving. Stick with it and keep learning! These forums are awesome for that.
  11. A Beautiful Truth

    I could not agree more. And thank you so much for suggesting this documentary. I went and watched it just now and it was incredibly moving. Brought me to tears a couple of times. There are some other ones on Netflix that are similar and I would recommend: "Food, Inc." and "Food Matters." I think EVERYONE should watch them, even those who are healthy in every way. They are about our world and how we are shaping it.
  12. I came back from the doctor and she refused to do any further tests until after a heart ultrasound and wearing a heart monitor. I'm feeling kind of let down. She said there was no clinical reason to do the tests I asked for, that any possible deficiencies would've shown up somehow on the tests I already got. And that because I am following the gluten free diet successfully, any deficiencies should have corrected themselves by now. That doesn't seem right to me. I can't wait for a GI doc.
  13. I've been gluten free a little over a year now too. I used to live in an apartment which we kept gluten free, but now I'm in a household with a gluten-full kitchen. I too built my own little gluten free kitchen, outside my room in the garage (my own fridge/freezer, storage, preparation area, and a hot plate). I use the main kitchen sink to wash dishes, but I never touch anything there with my hands or let my stuff come into contact with anything. All they touch is water and I turn the water on and off with my wrist/forearm. I don't share anything that the gluten-eaters use, and I wash my hands often. I haven't had any CC symptoms yet. As you say, the solution seems to be to separate your things more. Maybe a hot plate is in order for you too, and storing all your things separately. If you don't have your own cookware, dishes, and cutlery, you may need to get some. If some things of yours have to remain in the main kitchen, designate a certain shelf or cupboard just for you. And have your own shelf in the main fridge. Top shelves are preferable so no gluten can fall onto your stuff. And then of course let people know what not to touch. I hope things get better for you soon!
  14. Though I have been gluten free for over a year, I've been without health insurance until now, so have never had any tests done other than Enterolab. I got to finally see my doctor this Feb (so happy about that!), didn't have much time with her so didn't get to tell her all my unresolved symptoms and request all the followup tests I wanted, but I did get some of them. If it helps, I am female, 25, 5'3", 118 lbs. My most noticeable unresolved symptoms include: Constipation ever since a week-long round of antibiotics for a UTI 1.5 years ago. Along with the C comes general intestinal pain, queasiness, rarely sharp intestinal pain right after a bm. Constant, severe lack of energy, muscle weakness, sometimes joint pain in legs when walking, exercise intolerance. Occasional chest pains (can be upper left, lower left, and center, different types of pain for each). Fast heart rate (might just be a normal genetic thing as several family members do too). Sometimes pounding heart beat (which went away the day I went gluten free, but has been reappearing lately) Dizziness and temporary blindness when standing up. Cold hands and feet, and limbs fall asleep easily. Signs of neuropathy and ataxia. Practically all signs of anemia. Many signs of (hyper)thyroid problems. I could think of a lot more, but those are the major ones I notice daily. And I am taking the following: Probiotics - PB8, 4 per day Digestive enzymes - 1 with each meal Magnesium chelate - 500 mg per day 4000 IU vitamin D3 per day Used to take a multi and b12 months ago, but went off them to see if it would make any difference. Not sure. I was hoping someone could help me interpret the results of my tests to connect them with my symptoms. I was told over the phone that all the tests came back normal, but I went and got copies, and I'm not so sure about some. I've been researching the tests individually, but if anyone has their own insight on what these results could mean, or picks up on anything that might be helpful, please let me know. ----------------------------------------- All Tests Fasting - Unintentionally, I ended up fasting around 16 hours by the time the blood was taken instead of the 10-12 I think they said. I was shaky from hunger, then weak the rest of the day. Test result (Reference Range) Red = Abnormal Gray = Borderline Abnormal Bear with me if I considered some things borderline that shouldn't be, or vice versa. Some were tough calls. CBC Screen with Auto WBC 4.9 K/mcL (3.8-11.0) RBC 4.55 M/mcL (4.0-5.2) HGB 14.3 g/dL (12.0-16.0) HCT 42.1 % (36-46) MCV 92.6 fl (80-100) MCH 31.5 pg (26-34) MCHC 34.1 g/dL (31-36) RDW 10.5 % (10.5-13.5) Platelet Count 277 K/mcL (150-450) Neutrophils 57.2 % (44-70) Lymphocytes 27.2 % (25-46) Monocytes 12.9 % (1-12) Eosinophils 1.9 % (0-8) Basophils 0.7 % (0-2) Absolute Neut Ct 2.8 K/mcL (1.8-7.7) Absolute Lymphs 1.3 K/mcL (1.0-5.0) Absolute Monos 0.6 K/mcL (0-0.8) Absolute Eos 0.1 K/mcL (0-0.5) Absolute Baso 0.0 K/mcL (0-0.2) NRBC 0.0 /100 (0) Comprehensive Metabolic Panel Sodium 137 mmol/L (136-146) Potassium 4.0 mmol/L (3.5-5.1) Chloride 100 mmol/L (98-107) Glucose 93 mg/dL (60-120, ADA recommends normal fasting 70-99) CO2 28 mmol/L (22-32) BUN 9 mg/dL (7-21) Creatinine 0.6 mg/dL (0.6-1.0) Calcium 9.3 mg/dL (8.4-10.3) Albumin 4.8 g/dL (3.3-5.0) AST 9 Units/L (15-37) Protien, Total 7.7 g/dL (6.0-8.0) Bilirubin, Total 0.6 mg/dL (0.1-1.2) ALT 16 Units/L (12-78) Alk Phos 54 Units/L (38-126) GFR Calc, Non-African 131 mL/mn/1.73 (>60) GFR Calc, African 158 mL/mn/1.73 (>60) Osmo Calc 282 mOs/Kg H20 (280-305) Lipid Panel Cholesterol 157 mg/dL (<200) Triglycerides 41 mg/dL (<150) HDL 74 mg/dL (30-85, <40 low, >59 high) LDL by calculation 75 mg/dL (<130) TSH (3rd Generation) Thyroid Stimulating Hormone 2.480 mcIU/mL (0.358-3.800) VIT D 25-hydroxy Vitamin D, 25-Hydroxy 40.5 ng/mL (30-80) Tissue Transglutaminase ab, IgA TTG ab, IgA 8 (0-19) Celiac Disease Reflexive Panel TTG ab, IgA 181 mg/dL (68-378) Gliadin Peptide Ab IgA 3 (0-19) Stool Culture Enteric Pathogens No Salmonella, Shigella, Campylobacter, or significant amounts of Staphylococcus aureus or yeast isolated Shiga Toxin Assay Negative for Shiga toxins 1 and 2 Fecal Leukocytes No PMN's seen ----------------------------------------- I see my doctor again on March 3 for a physical and would like to ask for more tests that might explain my continuing symptoms. She is referring me to a gastroenterologist, though I don't know how long that will take. She also recommended a colonoscopy. I think they should look at my upper GI too because I get pain there also. For the constipation, she recommended I try increasing fiber, which I did. But after doing the calculations, I was already getting 25 grams of fiber per day minimum, usually more like in the 30's, and I am drinking 8x 8 oz glasses of water per day minimum and even more fluids from foods (tried drinking more also, but it felt unnatural and taxing on my system), so I just think there is something else at play here. I want to ask for: Common vitamin/mineral deficiencies not yet tested for: all the B vitamins, iron, magnesium, zinc, vitamin K... any others? More thyroid tests due to symptoms and family history. ANA test to check for autoantibodies (for possible additional autoimmune diseases at work). Test for low stomach acid due to poor carb/fat digestion. More thorough tests for parasites/bacterial overgrowth/H. Pylori. I've heard it takes multiple stool samples to get an accurate result on certain things, and I'm not sure she even ordered the most applicable tests. Advice? Bone health; just heard this is a common problem with Celiac. If anyone can think of anything else or has any advice, I'd much appreciate it!
  15. Well hey, it's a good question. This is important stuff after all. I'm also in agreement about possible gluten crumbs. My boyfriend and I don't kiss unless he hasn't been eating gluten, or if he has just brushed. Luckily he doesn't often eat gluten and he has good hygiene. =D