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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Tarantula44

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  1. Hi, sorry for the long post, please bare with me, I need some advice! I had negetive blood tests for celiac, but it runs in my family and I have malabsorption problems (undigested food), hormone imbalances, anxiety, migraines, severe hypoglycemia and digestive issues that all screamed celiac or gluten intolerance to my doctor. I have been STRICT gluten-free and DF for 4 months, and also nightshade free (with exceptions of occasional seasoning). I am also soy free. Things got better after about two months, my digestion was better and I went through an awful detox or withdrawal for about two weeks (could hardly stand, dizzy, fatigued, etc). This was promising that I was on the right track, but things started to go back downhill and never came back up. I had my thyroid checked and had small amounts of antibodies, but no thyroid hormone imbalances. I had saliva tests for adrenals and have low cortisol in the morning and high adrenaline. My doctor suggested Isocort for adrenal fatigue but it made me nauseus and my doc told me to go off it but will not prescribe hydrocortisone or anything else. She says its too intense for me and that my adrenal tests do not look THAT bad. With food, I can't tell if gluten or dairy or anything immediately affects me, I have done tons of elimination diets that didn't tell me anything, but never totally grain free (i'm thinking this might be my next move). I don't know what to do, I still have all of my symptoms: severe reactive hypoglycemia, anxiety, inflammed mucus membranes (everywhere: stomach, sinuses, bladder, etc), chronic swollen glands, undigested food in stools, tense painful muscles, bone pain, migraines, fatigue, muscle weakness, I could go on and on. Here are my questions: have I not waited long enough for the gluten-free diet to work it's wonders? I thought I would at least be seeing some sort of improvement in symptoms by now. I eat a LOT of rice and "gluten-free" products, should I avoid these? Should I go completely grain free? I started to eat some dairy again after 4 months of elimination, with no change in symptoms, should I continue eating dairy? I thought at one point that oxalates might be bthering me, but with my other food allergies this is way to hard to deal with, plus I guess I'm in denial about some of this...can such healthy foods be so terrible for you? I can't seem to find a doctor that can help me figure anything out and I'm so sick of trying a ton of crazy new things. Thanks for any insight...t
  2. I have Known for a couple years that I am sensitive to potatoes, they give me intestinal cramps and bone pain in my hips. I recently found out I'm sensitive to tomatoes so I avoid all nightshades now. My migraines have been getting better since. Two nights ago my partner cooked a chicken in the oven and put two potatoes in there for him. I ate the chicken for dinner and lunch the next day and I feel like I ate two potatoes. Can I get cross contamination from cooking potatoes in the same oven?? Also, anyone else with nightshade sensitivities? How long did it take you to feel better from avoiding them? It's been two weeks for me now, except for this occurrence. Thanks, t
  3. Thanks Mushroom. I definitely understand about foods causing different symptoms in people, I guess my question was, is it possible for nightshades to cause issues like swollen glands, anxiety, sinus inflammation etc at all. Your input about it taking a while and ups and downs helped. I guess I thought because I went through the withdrawal and got better, I was just going to keep getting better. But when I had a few more rotten days after a few good ones, I thought it might have been something else causing this. But if it could still be general issues from gluten that aren't out of my system that makes sense and I'll remember that. Thanks for your input!
  4. Hello, I have been gluten-free and dairy free for a little over a month now (had some tests that "suggest" celiac and with symptoms and family members having celiac my dr diagnosed me with it). It's been a rollercoaster since day one. I did have the crazy miserable withdrawal that some have, the worst seems to be over now. But I am still having reactions to something and I think it's nightshades. I am very strict about my diet, and don't think I'm getting cc. I notice I'm fine for a few days and things are getting better: I'm happier, digestion is so much improved its kind of rediculous, restless leg has stopped, sleeping better. BUT, every few days I'm still getting the following symptoms (which clear up and come back): Swollen glands (this has been chronic for 3 years) Sinus inflammation Nasal/nostril sores Peeling lips Brain fog Feeling generally gross/ill/no appetite/nauseous Fatigue Body pain/bone pain Anxiety Hypoglycemia symptoms I have been diagnosed allergic to tomatoes and potatoes which cause me some grief but not terrible but I've never given up all nightshades completely. Could these symptoms be related to nightshades? Im asking because I thought nightshades only caused digestional cramping and joint pain. I just want to know if I'm still recovering from gluten/dairy or if these are symptoms of nightshade allergy. Nightshades are proving SO hard for me to eliminate. They are in EVERYTHING! Thanks to anyone who can give me insight or hope! t
  5. Oh wow! That is really interested about the false neg with Hashi's. My doc didn't diagnose me with Hashis I guess because my hormone levels were fine. I do have many symptoms though, intolerance to cold, hair is falling out, but she said lots of those symptoms can be interchangeable with adrenal issues which I do have primarily, she tested my cortisol levels and they are a little under where they should be. She also said many people have thyroid antibodies and she sort of brushed it off. That is another question of mine tho, should I be concerned about it? I've heard so many times, on this forum and in clinical studies that thyroid issues resolve on gluten-free diet. So I guess I'm just going to see if it all gets better before getting cconcerened about anything. If you find that study please post it. Seems like we're in a similar situation. I also have reynauds, I saw that in your sig. K
  6. Hi Kathryn, From reading this forum and other articles it seems lots of folks have negative blood tests but can still be positive. The testing sounds kinda nutz and not so reliable, I think many have realized that they feel better off gluten and so they should stick to that. I am off dairy as well, I eliminated that along with the gluten. I am on the UNDA drops as well! 2, 20, 243. I started them 3 weeks ago, and am just starting to notice these detox symptoms. Today was one of the worst days I think I've ever had! The fatigue and muscle and bone pain are pretty horrific. I guess it's nice to know something is working if this is detox. I've been doing green smoothies every morning, they consist of leafy greens (spinach, kale or chard) and fruit and water: http://greenforlife.com/ I think I may be over doing it. I am going to take a break from the smoothies for now, until these symptoms reside a bit. Thanks for your reply, so glad you're feeling better and good luck with the rest. t.
  7. Hi, I'm so thankful for this site and the amount I've learned from you all since joining! I have had some negative blood tests but positive for total SIgA and thyroid antibodies. No biopsy, but celiac runs in family and my dr thinks I may have it. I agreed to do the strict gluten and dairy free diet. I started one month ago today and have noticed some improvements so far... Way better digestion, sinus inflammation has gone down, chronic swollen glands have gone down. But I am still having tons of symptoms, especially migraines, bladder pain, fatigue. Over the past two weeks the headaches have been everyday, and the bladder pain has been really bad at times, also my fatigue and head fog are off the charts horrible. I'm wondering if even after a month on the diet if I can still be having detox symptoms. That's what it feels like it is, I just thought this part would be over sooner. My dr also has me on homeopathic detox drops for my liver and kidneys as I have a mild fatty liver (not from alcohol/drugs). I also have been doing green smoothies with fresh greens daily too, I suppose all this might be too much for my system to handle. Can anyone give any insight as to how long detox can last from going gluten/dairy free and what are some things you can do to relieve the awfulness of it? Also how long it takes to start feeling better from the fatigue and headaches etc? Thank you! T
  8. Yes, my blood test for total IgA was normal. I looked at my tests yesterday and also had the transglutaminase test done and that was neg for celiac too. I have been gluten free for three weeks now and dairy free for two weeks. I am noticing a big improvement in digestion, and other improvements too, like chronic swollen glands have subsided, and sinus inflammation is slowly getting better but not gone yet. This is hopeful to me! Thanks for your help, I really appreciate it!
  9. Yes! I have heat intolerance too, I have a hard time taking a shower too. I have adrenal issues (low cortisol) and this is a symptom from that I am pretty sure...which is hopefully all coming from gluten. I am new to this whole gluten intolerance thing, still trying to figure things out. I have blood sugar issues and I know when I am getting hot (too much clothing, hot shower, etc) the low blood sugar shaky feelings and anxiety get worse, I also see stars sometimes from heat. I'm thinking (hoping!) this all gets better off gluten. I have only been gluten-free for 3 weeks.
  10. Thanks Skylark, this is helpful. I had the ELISA tests which came back negative and also total IgA which was neg for celiac, I will see if my Dr can order these other ones.
  11. Thanks for the replies! This is hopeful! I'd love it if we could keep posting our improvements off gluten with hypoglycemia here.
  12. Hi Everyone, I am wondering if hypoglycemia can be a symptom of celiac? I have severe reactive hypoglycemia for 2 years now. My Dr did tests for adrenal hormones and found my cortisol is lower than it should be which make sense. She wants me to take 1 Isocort pellet in morning. I guess my question is...will the hypo get better with the gluten-free diet? I have been on it strictly for 3 weeks now and not many symptoms are better yet, it usually takes longer for me to show signs of any improvement with any symptoms, but I haven't ever been on it long enough for the hypo to show improvement. Thanks, t.
  13. Hello, I recently had the basic blood tests done for celiac (Gliadin, total IGA, etc.) which came back negative. Celiac runs in my family and I have many symptoms so my Dr ordered salivary tests which she said could possibly be more conclusive. I am not doing the biopsy because of the invasiveness and my current health state, and am totally fine with eliminating gluten for several months to see if it makes a difference in my health, I began two weeks ago. However, it would really help to know what is causing my health issues. If you can help me figure out these results, I wood very much appreciate it! Total Salivary SIgA: 5, Normal Range (25-60) Salivary Gliadin IgA: 5, Positive range (>13) My Dr said that because my total SIgA was really low, that this could make the gliadin a false negative. She also said that if the total SIgA was low, this means that the mucosal lining of the gut is compromised, as seen in celiacs. I also showed positive for thyroid antibodies (???), she mentioned this is common in celiacs. Does anyone know more about these tests? Do celiacs usually have low SIgA? I am not familiar with the tests and wold love more insight as to what they mean and if they correlate with celiac. I know that ultimately how I feel is the biggest thing here, it would just give me piece of mind to know if I have celiac or not, and if I'm on the right track with the elimination diet. Thanks for your help, t.
  14. Wow...it's amazing what food can do to people. I am new here and at the beginning of this too. I have learned so far that if tests come back normal all the time and you can't find a doctor to look deeper, that you sometimes have to take matters into your own hands. But still keep searching for a doctor that specializes in celiac like others mentioned. Another idea is to have him get food allergies tested, this could bring up something worth while. One of my friends is allergic to eggs and throws up from eating anything with eggs. But food allergies affect people very differently. What is his diet like right now? For lots here, it matters more about how you feel than a diagnosis, so some continue their search for a diagnosis, and some eliminate gluten for several months to see if symptoms change. His problems could very well be because of gluten or dairy, or both...other foods too. It sounds like he has nothing to loose by going on a gluten free diet to see if he feels better. Keep in mind though, that you need to be actively eating gluten to have a proper diagnosis, so if you go gluten free, down the line, a diagnosis may be harder, but if you know he feels better off gluten,maybe that's all that matters. Also, keep in mind that you have to be very strict about the diet, so he needs to know if you are changing his diet because if he eats a cookie or piece of toast or something with hidden gluten when you're not with him (imitation crab, grain maltodextrin, etc), the diet won't work, and he could still feel symptoms and think that gluten is not the problem. You have to STRICTLY eliminate the gluten, but there is so much information on this site and online that can help you get started. Also, google search "hidden gluten". Maybe eliminate dairy too since a lot of celiacs react similarly to dairy. You have to do the diet for at least a few months. Sometimes, it takes a long time to see relief, in my case two months before I noticed any difference. Really, it all sounds daunting, but the diet is easy to get used to, and the people on this forum are so helpful, even if you just need to vent!
  15. Hello, I recently had the basic blood tests done for celiac (Gliadin, total IGA, etc.) which came back negative. Celiac runs in my family and I have many symptoms so my Dr ordered salivary tests which she said could possibly be more conclusive. I am not doing the biopsy because of the invasiveness and my current health state, and am totally fine with eliminating gluten for several months to see if it makes a difference in my health, I began two weeks ago. However, it would really help to know what is causing my health issues. If you can help me figure out these results, I wood very much appreciate it! Total Salivary SIgA: 5 Normal Range (25-60) Salivary Gliadin IgA: 5 Positive range (>13) My Dr said that because my total SIgA was really low, that this could make the gliadin a false negative. She also said that if the total SIgA was low, this means that the mucosal lining of the gut is compromised, as seen in celiacs. I also showed positive for thyroid antibodies (???), she mentioned this is common in celiacs. Does anyone know more about these tests? Do celiacs usually have low SIgA? I am not familiar with the tests and wold love more insight as to what they mean and if they correlate with celiac. I know that ultimately how I feel is the biggest thing here, it would just give me piece of mind to know if I have celiac or not, and if I'm on the right track with the elimination diet. Thanks for your help, t.