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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 hmseyer21

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  1. Oh and I don't have DH but I do have keratosis pilaris. Do you know if that's related? It seemed to be better for 2 days but now is worse. Do you think that is because of withdrawal?
  2. I hear you on the cheese and corn tortillas!!! I have Mexican for half my diet the past two weeks. I honestly have not gotten to the point of getting super serious about cross contamination. That is overwhelming to even think about. I know I will eventually have to, but I'm doing this in baby steps. I may have accidentally cross contaminated in the past two weeks but I felt better the first two days, then i have gotten worse since. I feel like an alien has taken over my body, I have felt this way in the past too and I know my thyroid is causing it. I keep wondering if gluten caused my thyroid issues or is just related. I wonder if hashis came on after years of thyroid problems or if I developed it because of gluten. Kind of like trying to figure out if the chicken or egg came first. I have never had a severe allergic reaction but I know I am probably gluten sensitive. I don't mind cutting out gluten so much honestly it's worrying about cross contamination that I feel overwhelmed with right now. Do you think I should glutenate and be tested or just keep on trucking with the diet? I am just hoping I will be able to stop thinking so much about how to eat. I am still eating food that is good it's just the psychological aspect of it all. I think it's crazy too how many doctors do not take these things seriously. It took me a while and many years of suffering but I am definitely thankful to have found one who knows what she is talking about. I have my follow up appointment in 3 weeks. I wish it were tomorrow!
  3. We eat minimal dairy since we are all lactose intolerant but to give up all dairy would be tough. I have a feeling it might be causing some issues too. I have craved dairy since going Gluten-Free. One thing at a time I guess. I have tried total elimination before and only made it 3 days. I decided that I could do gluten first then work on the rest. Thanks again. I have a feeling I will be on here often since you all understand.
  4. Thank you so much. Just encouragement that things can get better as you've experienced gives me more motivation to keep going. Do you know how long withdrawals usually last? l
  5. I'm going to give you a bit of history and basically beg for advice, I am so overwhelmed. In 2002, I was diagnosed with hypothyroidism. I was 24 years old. My family doctor put me on synthroid and antidepressants. The antidepressants made me crazy, so I took them only for about 4 months. I felt a little better but would have bouts of depression and gained about 10 pounds pretty quickly. I started off very healthy at about 135. My levels were managed on the high end on about 75 mcg for a couple of years. In 2005, I got pregnant with my first child. I started seeing an endocrinologist and he kept my levels on the lower end of normal and I felt okay. Better than before, but still not too great. I also began using generic levothyroxine around this time. I was really sick during the first trimester, but got a little better once I hit the second. I went full term, but my child was born with several birth defects(heart, spine, hearing loss, and eye issues) My levels were kept normal during the pregnancy and genetic tests were ran to see if they could diagnose him with a syndrome, but nothing came back. My levels were a little up and down after the pregnancy, but got under control pretty quickly. In 2007, I got pregnant with my second child and had a miscarriage at 10 weeks. I was completely devastated and began to research natural ways of living. I didn't know what else to do but to try to be as healthy as possible. Over the next six months, my son was getting stomach viruses every few weeks and was failing to thrive. He was referred to a gastroenterologist. He suggested that my son may have celiac disease because he had a lot of symptoms. They did bloodwork, a stool sample, and an endoscopy. His tests were all negative and he was diagnosed with lactose intolerance. During this time of testing, I became pregnant again. After reading about celiac disease and before getting my son's tests results, I removed gluten from my diet because I was afraid I had it too and that may have caused my miscarriage. After the tests for my son came back negative, I assumed I didn't have it, mainly because it was soooo hard to be so sick and try to adopt a gluten free diet at the same time. During this time, my OBGYN ran some tests and found out I have a genetic blood clotting disorder called mthfr. I was told this could have been the cause of the birth defects in my first child because with this disorder, the body doesn't absord folic acid and other B vitamins properly. So I began taking a ton of folic acid, blood thinner shots, and B6 and B12. My son was born without any problems. About 4 months after this pregnancy, my thyroid levels became extremely hyper. I had never experienced these symptoms and it was extrememly hard to cope with. After a couple of months of dealing with this, I decided to stop taking my thyroid medicine. I was in an extreme state of desperation with two young children and the extreme symptoms of hyper made me think maybe my thyroid was working again. WRONG! In December of 2008, after two months of no levothyroxine my TSH was 219, my T3 was 50(low), and my Free t4(low) was 49, Oops, guess that was a really bad decision. So I began taking levothyroxine again and my levels seemed to be mostly normal after a few adjustments. In August 2009, I became pregnant again. Another healthy baby was born in April 2010. But I started going through the hyper to hypo trainreck again. This past summer I was taking 137 mcg and started feeling the extreme symptoms of hyper again. It was awful again and I had trouble coping. So after getting tested, I was right, and they lowered my dose to 112. Two months later, I began feeling hypo, rechecked, and my TSH was at 13. So instead of putting me in between at 125, my annoying endocrinologist would not listen to me and put me on 150. Last month, week after going on the dosage f 150, I started seeing a new doctor who tested me for a lot of things, including hashimotos. She said it sounded like I have all the symptoms, and suggested I start eating a gluten free diet to see how my body responds. So two weeks ago, I followed her advice and started eating gluten free. Last week, I got a call saying I was low in vitamin D levels, and that my bloodwork suggest that I have hashimotos. My antithyroid peroxidase was 440 and apparently normal is below 35. My Free T3 was also on the low normal end, but total t3 was normal. She didn't recheck TSH or T4 since I had just changed my dose a week before. This past week, I began feeling extremely hyperthyroid again, and I am having trouble coping with the symptoms. So I am now taking my 112 dosage until I can see my current physician to put me on 125. I'd rather be hypo, hyper symptoms make me feel crazy. So now after all these years, I find out I most likely have hashimotos. I know nothing about this and I honestly hate chagning my diet so drastically. I will be honest and say I despise having to be gluten free and alter my lifestyle so much. I feel like emotionally if I could get back on track, I wouldn't be so overwhelmed, but I am so confused at what to do. I don't feel any better so far, I really feel worse to be honest. I want to eat bread, but I won't because if it is truly causing me to be sick, it isn't worth it. Anyone have advice to help me understand what is going on? I am so overwhelmed today and I just want to be happy. I have a fantastic life and a ,wonderful family, it grieves my soul that these health issues are preventing me from enjoying my blessings.
  6. Thanks nikki'smom! The sweat test was a flop, he didn't even sweat after going through all that. The lady who scheduled the test said you can't do it during the endoscopy, so it was quite an ordeal putting him through that. I was so irritated once we were done and the lady said it is common not to get sweat from a little one! BOO, he was so mad and I was irritated that it didn't work after we put him through that. I'll let you know how the endoscopy went.
  7. That is not the only thing he is looking for, that is just one possibility. I think he definitely has something going on, but I don't know enough about every malabsorption disease to know if he has the same symptoms as another malabsorption disease. Celiac was one possibility, so that is why I decided to have the test. Am I still nervous, YES! My DH thinks we should do it, and he is very practical and listens to my concerns, so I am also letting him help decide this. I know there are risks, and we have been through this 4 times with past procdures and surgeries. I know it's natural to be scared, but part of me feels like taking a risk not to do it could also be a mistake. If I knew for a fact that he had celiac, and that was all the problems he's ever faced, then I wouldn't hesitate to change his diet and wait 6 months. But considering everything that has gone on since his birth, this may provide answers and I don't want to wait if there is something I can find out this week. Best case scenario, it's celiacs, but there are other much more severe possibilities it also could be and I don't think I should risk not knowing. So I am going to have the procedure done and just pray and trust God to protect him. That's all I can do for now. Thanks for the response and information, it is very valuable and I appreciate your concerns. I will let you know how everything turns out.
  8. I Need Sushi!

    I'm craving sushi too and am preggers, what's up with that?? lol So is ordering from a sushi bar safe if you make sure no gluten is in it and to use gluten-free soy sauce? What ingredients do you have to look out for? That would totally make my day! I'm craving it like crazy!
  9. Thanks, I am preggers so I think it is making me even more emotional! He can't have laughing gas because my family has a malignant hypothermia history and he had a reaction to anesthesia this summer, so I'm mostly nervous about that. I agree that it is the best way to diagnose problems, so I am sure I will go through with it, I just wish there weren't other issues involved. If I thought that celiac was the only problem for sure I'd just change his diet. But seeing that he has multiple health issues, I feel like it might be wise to do so. I just hope he doesn't have another reaction to anesthesia, it was so scary last time. Thanks again.
  10. I couldn't find this thread, so I posted to try to bump it up.
  11. This morning my blood sugar was 97, after breakfast 1 hour it was 94, and 2 hours it was 83. Is that normal? And yes I have considered changing his diet and avoiding the tests. He has a lot of other health problems, so considering that, I was thinking maybe it wasn't a bad idea to get a good look in case it could be some other malabsorption issue, and I guess I want to know sooner instead of later. I know we could change his diet, see if he gains more weight, and then if not have the procedure later, but if there are other issues going on, maybe it's best to find out now. The endoscopy is Monday, I have little time to decide, I am just praying for an answer. I know it's normal to be nervous, but I am still not sure I want him to be sedated.
  12. This morning my blood sugar was 97, after breakfast 1 hour it was 94, and 2 hours it was 83. Is that normal? And yes I have considered changing his diet and avoiding the tests. He has a lot of other health problems, so considering that, I was thinking maybe it wasn't a bad idea to get a good look in case it could be some other malabsorption issue, and I guess I want to know sooner instead of later. I know we could change his diet, see if he gains more weight, and then if not have the procedure later, but if there are other issues going on, maybe it's best to find out now. The endoscopy is Monday, I have little time to decide, I am just praying for an answer. I know it's normal to be nervous, but I am still not sure I want him to be sedated.
  13. My son will be 2 next week, and on Monday he is having an endoscopy. I am a ball of nerves!! This summer he developed pneumonia after hernia repair surgery and was hospitalized. They think it had to do with aspirating and anesthesia, so I am so scared. I have been crying off and on because I know he should have it done, but at the same time I'm really nervous that he'll have another reaction. He's been through SO much in his little life, I feel like just taking him and running away from all of this, but that is not realistic. I literally could write a book on all his health challenges, it's overwhelming. My heart hurts for him, and all that he has been through. At first I didn't really want to do the endoscopy because of the anesthesia, but after researching and talking to the doctor, I feel like it's the best way to get a good look at why he is so small and has digestive issues. I'm so torn because I'm scared, and at the same time I know it's a short procedure, but if something happens to him, I will be devestated. I don't want him to go through that again, and part of me wants to say forget it, but my DH is telling me it's normal to be scared, but that he will be fine. Please help calm my fears about this procedure, any comfort you could offer would be greatly appreciated, I am a MESS! I feel like our battle is never over, and I am truly just overwhelmed.
  14. I picked up the monitor today, talk about overwhelming! I dread doing this because I don't really think it's an issue, but I will because I'm preggers to be safe. I have no idea if he did an A1C?? I was just told that 105 was high and that 95 or below was optimal. I also have hypothyroidism, is there any association? And to answer the questions about my son's possible celiac diagnosis, we ae waiting to change his diet for the endoscopy. I dread the procedure, but at the same time, he has several health issues and I think it would be the best way to tell what is going on. I am really nervous because of the anesthesia involved (he had a reaction the last time he had surgery). If they say he is negative, I will still change his diet to see if he improves. I have already changed my diet, but today I accidentally at a sauce with soy in it, I was so mad at myself! I totally forgot about soy sauce until I was almost done! It was weird because the bumps on my arms got worse after that meal! (I have Keratosis Pilaris.) Thanks for all the advice, I am earning my junior medical degree one diagnosis at a time, and it's not by choice! I amd so stressed about all this and I know that is not good for me, so I just want the endoscopy to be over with and to know what is going on.
  15. So finally after feeling like we were never going to get any tests, they scheduled DS's endoscopy for Monday Oct. 8th. I'm still nervous, but feel like it is the best way to see what is going on with him. Tomorrow we go for a pre-op appt, a bone age xray, and a sweat test. Poor little guy, I'm glad that they are checking, but at the same time, he's been through too much already and I hope this is the beginning to the end of so many tests. So if you could say a prayer for my little man, I would really appreciate it, and I will keep you posted on his results.