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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.

icelandgirl

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  1. Hi Victoria! Gemini is right, you need a full thyroid panel in order to really see what is going on with your thyroid. The remaining tests are Free T3, Free T4, TpoAb and TgAb. The last 2 are antibody tests. Ideally, your TSH will be around 1 and the Free #'s will be in 50-75% of the range. I feel terrible with a TSH where yours is. Mine is best very close to 1. Thankfully, my endocrinologist doses based on symptoms! Start by asking your Dr for the full panel. Give her all of your symptoms as well as your mom's history. Hopefully, she is willing to order them for you. Many Drs will only order TSH or that and Free T4, but you really do need all of them. This site is a great resource for all things thyroid: https://stopthethyroidmadness.com/recommended-labwork/ Good luck and please let us know how it goes!
  2. I had the same issue after diagnosis. I also wasn't thin at diagnosis. I lost 30 pounds very quickly.. it was kind of scary. Then I took a look at what I was eating and like you, realized I was short on calories daily. Eating good fats really helped me. Nuts and seed butters are a great source of calories. Olive oil, butter and coconut oil are great. For a long time I was putting a tablespoon of coconut oil in my coffee. Avocados and salmon are both delicious, highly caloric and full of good fats. I love Canyon bagels! Yum...so good toasted with sunbutter. For a while I tracked my calories daily to make sure I got the 1700 I needed to maintain and I did. Apparently I'm now absorbing much better. I went to the Dr today and I've gained 5 pounds. 😜
  3. Hi Booiegirl, I want to tell you not to worry, but I know that I myself would as I am a worrier. That being said, it most likely isn't lymphoma or refractory, both being so rare. I'm so glad that your Dr is being thorough and checking everything out. Hopefully you will get answers very soon as waiting often seems to be the hardest part. Please do let us know when you find out. Take some good care of yourself in the meantime. ((((Hugs))))
  4. Hi again and more ((((hugs))))! Do keep asking! I get it. The first 3-4 months I saw significant improvement and then things went a little downhill for me. I'm not completely sure why. I had a lot of anxiety as well. At one point I was only eating 6 foods just to try to figure out what might be bothering me. The good news is that 3 years later I feel a lot better. As far as anxiety goes, have you had a complete thyroid panel? Not just TSH. I ask because nothing has raised my anxiety more than having my thyroid be off. Just something to think about. I hope you are feeling better. 😊
  5. Hi Fbmb and (((hugs)))! I get it...totally. I remember doing that every day, looking at the poop to see if it was perfect! You are definitely still healing. It takes much longer for some of us than Drs lead us to believe. I still have off days after 3+ years. I'm having one today and have no idea why. I don't have perfect poops daily and don't know that it's reasonable to expect to. I do eat Breyers, but just the Natural Vanilla. The simpler the better for my body, I've found. I think you're doing great. It takes a lot of patience to get through this!
  6. Hi Galaxy! So good to hear from you! The waiting game is hard, but you should have the results soon. Please do let us know when you get them. Hugs!
  7. Hi DrMommy, I'm sorry that you are going through this...it sounds rough. Do you know if a complete thyroid panel was run? I ask because many Drs will only run TSH or TSH and free T4. Unfortunately those don't tell the whole story of your thyroid. Both can be normal, but if free T3 is low, you can feel exhausted. If you have elevated TPOAB or TgAb(both are antibodies), all other thyroid tests can be normal and you can still feel terrible. Finally, many Drs don't recognize that a thyroid can be within "normal range", but if it's not optimal, a person can feel awful. Basically, you want a TSH around 1, both free #'s to be in 50-75% of the range and no antibodies. It would definitely be worth checking to see what tests you had done and what your results were. As far as absorption. I do believe that with healing you should start absorbing better, including medication. I am on a lower dose of thyroid medication than I was at celiac diagnosis and the only explanation my endocrinologist has is better absorption. Good luck to you! I hope you get this figured out!
  8. I agree...I hate when there's no resolution or someone just disappears. I always wonder. I'm still around here for sure. Not quite as much as 3 years ago, but I guess that's a sign of feeling better? I am so sorry you had kidney stones as well! They are terrible. I passed 7 in one go at the ER. My urologist believes that it's celiac malabsorption related.
  9. Hi Victoria! Wow...so interesting to read through this almost 3 years later. It has helped me to see how far I've come. 😁 I never got a good answer on this issue. I did have more than 1 pelvic ultrasound and the only thing that ever came up was ovarian cysts in the process of resolving. At one point I got a referral to a urologist, but the symptoms went away before my appointment so I cancelled. Fast forward to March of 2016 when I ended up in the ER with kidney stones. Lots of them. I have wondered if I was perhaps passing small pieces of stone during the episodes of pelvic pressure and peeing. I just don't know. I haven't had an episode like this since I passed the stones. And I am really thankful for that. It was so uncomfortable all the time. I wish I had a clear answer for you. I don't know for sure what was going on with me though. I am so grateful to have read through this...3 years has made a big difference in how I feel!
  10. Hi Cristiana! I'm so sorry that you are worried. ((((Hugs)))). Your Dr should be checking your antibodies yearly. Here is some information on follow up testing that should happen. https://celiac.org/celiac-disease/understanding-celiac-disease-2/treating-celiac-disease/ Do ask for the antibody testing to be done at your visit. Have you tried the warm saltwater rinse? I do think doing that a few times a day helps. Please try not to worry...easier said than done, I know.
  11. Exactly my thought! 😁
  12. Hi George! I'm so glad that you kept advocating for yourself and that you have an answer! I hope that you start to feel better really soon! Please keep us posted. 😁
  13. Hi Cristiana! Those hurt...I'm so sorry that you're suffering with one. I haven't had one in quite some time, but I used to use warm saltwater rinses to help. I definitely think after 3 weeks it's time to have it looked at. I hope you get some answers! Hugs!
  14. Hi Pavlov and welcome! Hormonal changes like that are not fun at all! Have you had your thyroid fully checked recently? The thyroid is the master hormone of your body, if it's not working optimally, things will suffer. A full thyroid blood panel would include TSH, Free T4, Free T3, TPOAB and TgAb. The last 2 are antibody tests. Most people seem to feel best with the TSH around 1 and the free #'s in 50-75% of the range. I have Hashimotos in addition to celiac and having my thyroid go out of whack has more than once wreaked havoc on my body. Good luck to you...I hope you get some answers!
  15. Hi glutenkid, Yes, I was very discouraged for a while. I heard about people feeling better as soon as they went gluten free and couldn't understand why that didn't happen to me. For some of us it takes much longer than others to heal. In the first year after diagnosis I had a lot of ups and downs. It was really rough at times. This board was so helpful to me at that time because I was scared that I would never feel good. It really took about a year to feel pretty good for me. Now at 3 years I still see improvements happening! It can take the body a long time to heal from years of damage. You have to be very patient. Try to eat a diet rich in while foods. Avoid eating out for a while. Make sure that you've been checked for common deficiencies like iron, B12 and D. Most of all, be good to yourself. You will heal with time! ((((Hugs))))