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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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HavaneseMom last won the day on May 15 2014

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  1. Gerd Diet - Not Getting Enough Calories

    I too have Gerd and it can be really hard to manage and figuring out your trigger foods is tough. Are you taking a digestive enzyme? I have found that taking one before every meal helps me digest food more quickly. I like Enzymedica Digest Complete. They might possible make you feel less full and more hungry, since the enzymes will help you digest your food better. Many on this forum also swear by a good probiotic, especially when healing their gut. I'm not currently taking one, but have heard they do wonders for digestion.
  2. Hand Tremors

    I noticed you mentioned your hands weren't shaking at 9:30pm, but they would be in the A.M. Is it before you eat breakfast, or shortly after? I only ask because I tend to get shaky hands when I haven't had anything to eat for a while. I am guessing it has something to do with blood sugar. That could possibly explain why you shake in the morning, but not at night after dinner. I did ask my doctor about it, because it happens to me if I wait too long between any meal and he didn't seem concerned, but told me to eat small frequent meals or snack frequently and it does help me with that shaky feeling.
  3. Hi StacyLynch, Sorry to hear about his painful mouth ulcers. Another poster just started a topic about mouth sores and I mentioned a couple of things that have helped me here: http://www.celiac.com/gluten-free/topic/111132-tongue-sores-anyone-how-do-i-get-them-to-go-away/ I honestly don't know anything about seizures, but if it is causing him to bite or rub his teeth on his tongue in any way, that could lead to ulcers too.
  4. Wow, that sounds painful and I'm sorry to hear your doctors haven't been able to help you yet. I would keep on them though, especially if it continues to progress. I did have tongue sores for years before diagnosis, and they are 90% gone now. One tip I read here (I think from KarenG) is to use a SLS free toothpaste. The relief in tongue pain and sores that this change has made has been life altering for me. Here are a few that are out there, I use the Sensodyne Pronamel: Today, there are many companies which make natural toothpastes free from Sodium Lauryl Sulfate. Some of the most popular are: Tom’s of Maine toothpaste Cardamon-fennel Herbal Toothpaste Rembrandt Premium Whitening Mint Toothpaste Jason Natural Cosmetics Toothpaste Squigle Enamel Saver Toothpaste Sensodyne ProNamel Mint Essense Toothpaste Auromere SLS Free Herbal Toothpaste Kiss My Face Kids Berry Smart Toothpaste Xyliwhite platinum mint The other thing you might want to look in to is iron deficiency anemia. It can cause a swollen tongue, which your teeth will then rub on and cause sores. My tongue was huge by diagnosis and I didn't actually realize it because it had happened so gradually. My teeth were rubbing on the side of my tongue constantly.
  5. My cholesterol has gone up and is high since going gluten free. I have also gained weight and haven't been eating as healthy as I was before, so I am sure that plays in to my higher cholesterol some. Have you had your Vitamin D level tested? I have been reading up on Vtiamin D deficiency and found that it's connected to high cholesterol. My husband has a family history of high cholesterol, like it sounds like you do, and he has been able to lower his cholesterol substantially by remove animal fats from his diet, but it is still considered high. I'm sorry to hear you aren't able to eat normally again. It sounds like you were doing very well on the steroid and it must be so upsetting to have that taken away. Are you thinking about trying another doctor? I would seriously consider it if I were in your shoes.
  6. I was told that I needed to eat the equivalent of two slices of bread a day. I have never heard that it has to be bread. As far as I know, gluten is gluten, so eat lots of the good stuff! You could always eat two slices of bread plus the yummy gluten filled foods. I would really question and research what your new doctor is telling you about your previous results before you go through with the new blood test and endoscopy/biopsy. It has only been a little over a year, so you should be able to get a copy of your endoscopy report and biopsy report from the lab and your first GI doc to see what it says for yourself. Did you go for a second opinion because all of your symptoms didn't completely go away? If so, there are a lot of people who still have some symptoms after a year.
  7. Hi icelandgirl, I heard back from both of the doctors nurses following up on the low Ferritin. My regular doc said to keep supplementing, but when I asked his nurse if he said how much I should take, she said he didn't and to just do whatever I can to boost it up. My gastro doctor threw me for a loop and wants to do a follow up endoscopy and biopsy to see if they can find out why I'm not absorbing nutrients better yet. I'm not sure if he is thinking it could be refractory sprue or what, but I think it's still too early in the healing process to be worried about that, so I am going to put that off for a while longer. When I called in I had asked the nurse to ask the doc what I should be taking to raise my Ferritn at this point, but when she called me back she said there was nothing about it in his notes and to keep taking a supplement. She did say that they typically see a very slow improvement of Ferritin in Celiac patients. Sorry I don't have better suggestions from either if them to share with you to increase your Ferritin. I guess this is the downside of trying to bypass another appointment and do things over the phone. The info gets passed back and forth between the nurse and the doctor and the original question didn't get answered
  8. Yes! That is what I was thinking too. I don't know why the nurse at my GI's office said it's not likely the cause. Everything I have read says it very well could be. Could you tell me where I can find the PubMed info you referenced. I would love to read it. Thanks
  9. Hi icelandgirl, I have calls in to both of the doctors to find out what I should take for my low Ferritin and will come back and let you know what they say as soon as I hear back from them. Yep, I have read a lot of info saying that long term use of PPI's can stop you from absorbing nutrients. I think it has something to do with there not being enough acid in the stomach to break food down, so nutrients can't be absorbed. My GI docs nurse tried to tell me today that it's very rare for that to happen and that the doctor thinks my Ferritin is down because I must be eating gluten. This obviously made me very upset, since I am obsessed about being gluten free and protecting myself from hidden gluten sources. I am one of us celiacs who never even eats out because I won't risk the chance of cross-contamination. I put in a request to have my celiac panel tested just in case something is going on, but mostly because I want to prove him wrong. I wish he would have run the celiac panel first before accusing me of sneaking gluten. I would never ever sneak gluten. I will try your tips for weaning off PPI's. I have been on them for so long now that I know it's going to be tough, but I know it is something I have to do to improve my overall health. Thanks so much for the very sweet offer to PM you if I ever need to
  10. Hi cyclinglady - It is so great that you were able to get you nutritional deficiencies corrected so quickly and were able to stop supplementing! I am going to work hard extra hard now to get my numbers up through supplements and food. I have had my B-12 tested and i was pleasantly surprised it was pretty high at around 700. I last had my Celiac panel ran about 10 months ago and everything looked great, I'm due for another in a couple of months. My husband does eat gluten, but his gluten prep area is on the far corner counter of the kitchen and everything is segregated as recommended for a safe shared kitchen. We are very careful about it and no kisses are given until he brushes his teeth and rinses very well icelandgirl - It is pretty discouraging! My regular doctor told me to take 5000iu Vitamin D3 for two months, then have my levels re-tested to see where to go from there. My gastro doctor was the one who ordered the Ferritin and he hadn't had a chance to review my results yet when I called for them, so I don't know what he will want me to take. I can come back and let you know when I find out because I know you are in the low Ferritin club and might be curious to know what is recommended. I am still going to push for the additional thyroid test because I do want to know that there isn't anything else going on there. Sorry to hear you are frustrated too! I know this topic started off heading in one direction and is ending up in a completely different direction, so thank you to everyone for helping me sort all of this out! I have been racking my brain trying to figure out why my levels dropped, and have been researching like crazy today and I think I realized what the problem likely is. I am taking Nexium everyday and have been for the past 5 years. I know, I know...it's bad stuff. Pre-diagnosis I woke up one day with what felt like a flame torch blowing up my throat. It was so bad and painful that I couldn't function, so I was prescribed a Proton Pump Inhibitor. There was some visible tissue irritation in my esophagus when I was scoped so my GI doc told me to keep taking them to avoid Barrett's Esophagus. I have tried to get off them a handful of times and the burning and pain comes back. I take the lowest dose possibly, but it is very likely enough to keep me from absorbing nutrients. I'm going to try to wean off of them again and look for some natural alternatives to help along the way.
  11. Hi Everyone, I'm back with my test results already! I was very surprised to get a call so soon with the results. My TSH came back at 1.98 and my Free T4 at 0.82 . She said both of those numbers looked good. I didn't ask for the detailed Thyroid test when I was talking to her, because I wanted to check with my gastro doctor for the results of the follow-up test I had drawn yesterday that he had requested first. I wanted to check back and see what you all thought about those numbers too. Well, the test my gastro doctor had requested didn't come back so great. My Ferritin is back down to 10 (the highest it has been since my diagnosis was 12) and my Vitamin D is back down to 18 (21 is the highest it has been since diagnosis). I honestly haven't been supplementing like I apparently should be, mostly because my stomach feels so much better when I don't take supplements. I also thought since I was this far along, being diagnosed almost 17 months ago, that I would be able to absorb nutrients now and bring my numbers up naturally. I can't believe I caused my own set back by not supplementing!!! My doc said both my Ferritin and Vitamin D need to be in the 50-60 range before my fatigue, sluggishness, pain, muscle aches, etc. will subside. Now I'm wondering if I am barking up the wrong tree by looking in to Hashi's, when most of my symptoms could be caused by my low Ferritin and Vitamin D levels. The symptoms for Hashi's vs. low Ferritin with Vitamin D deficiency seem to be very similar. Thanks for letting me go on about this I look forward to hearing your thoughts.
  12. Yes! That would be nice if they were more helpful. He did admit to me a few times that he doesn't know a whole lot about Celiac and a couple of things he said led me to believe this is very true.
  13. Hi cyclinglady, He did put his fingers over the area of my thyroid and had me swallow twice. It just took a few seconds for him to do that and he said it felt fine. Is that the same type of thing your doctor did when he examined your neck?
  14. Thank so much for the replies! Icelandgirl - That's a great idea to call them to see if they can add to the testing, but the lab closed at 4pm and it's almost 6pm here now. They move things through pretty fast, so I think it's too late for that now. I'm bummed that I gave in like that. It happened so fast that I wasn't even aware of it at the time. Thanks for sharing you experience and your mom's too. It's very helpful info and I alway like to learn from others experiences. I'm glad you are seeing improvement with your new meds. That is great news! Gemini - Thanks for explaining the numbers to me. I will be back to let you guys know the results and see what you think of them. I am definitely more assertive over the phone, so I shouldn't have a problem calling and insisting on the additional test once the initial test results are in. I don't understand the insurance companies at all, but I told my husband what happened today and he said I should have just told the doc to order the test and I would pay for it out of pocket if need be. Ugh! I didn't even think about that option. Not that I want to pay out of pocket, but I would be willing to do it if I had too in order to make my body feel better. My digestive system has improved so much and I am beyond thankful for that, but my body feels so tired, sore and achey most days. I'm ready to see improvement in that area now and just looking for a possible answer.
  15. Hi Everyone! I was able to get an appointment with my doctor right away and saw him this afternoon. Well, I pretty much caved in and went along with what he wanted to do. I didn't even realized it had happened until I got in my car and was driving away. At first he said he would run all of those test, then as we were taking he said that my insurance wouldn't cover them all at this time because he hadn't run the preliminary test first, which are TSH and Free T4. He wanted to run those two first to see if the came back out of range before running the more detailed test. It made sense at the time, but now I am wondering if those two test are enough to indicate Hashimoto's or another thyroid issue, so that the more detailed test could be ordered if need be? He did pull up my last TSH results, which were 2.5 and said that looked ok, but he likes to see it around 1. That left me wondering if 2.5 is really ok, since it's not 1? I'm a little confused right so any input would be super helpful. I did have my blood drawn after my appointment and should have the TSH and Free T4 results in a few days. The doc said he has a feeling they will come back fine, but that it would be good for me to know for sure... Thanks in advance!