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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.


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icelandgirl last won the day on March 21

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  1. Hi Galaxy! I'm so glad that you did that and that your Dr was helpful! Keep doing that for yourself...if nothing else, it helps you mentally knowing you are doing something!😁 Also, don't let anyone make you feel like you're crazy, you are not! You are the only person who knows how you feel physically and emotionally. You are definitely in a rough spot right now, but with persistence you will get answers soon! I was never anemic...just borderline. We all have different symptoms. I did have low D, but with supplementation it's in the normal range now. Make sure that you do supplement with a good D3 and some magnesium. Getting both of those up would help you too. I really hope you get the bloodwork done early next week and keep following up on that GI referral. Big ((((((hugs)))))
  2. I agree with everything cyclinglady has suggested! Having diarrhea every day is sheer misery. I hope that he doesn't make you wait 6 weeks. If these medications aren't helping, go back in and see if he's willing to schedule it earlier or do other testing....I'm not sure what. I really do feel for you. Leading up to my celiac diagnosis I had D 10-20 times a day for several months. It was horrendous. ((((Hugs))))
  3. Hi George! It is an old topic, but it's mine so I figured I'd chime in. If nothing showed on CT or MRI, I'm not sure. I do get this when I'm glutened and it's very uncomfortable. How long has it been since you had a complete celiac panel done? If it isn't very recent, I think it's time for one. Particularly with such severe D. Did you make sure the meds the Dr has you on are gluten free? Just another thought. I hope you feel better!
  4. Hi Galaxy, GI offices tend to be busy and sometimes have long wait times. I would not wait to hear from them, I'd call and say, "I've been referred to your office by Dr X and would like to get an appointment scheduled." Once you get the appointment, it could be weeks out, sometimes months (hoping that's not the case!). I've been at a point of desperation with appointments that are far out where I do the following: call and say, "I've got an appointment with Dr X on July 2nd, and am wondering if he has any earlier cancellations? Oh, June 15th. Great. I'll take it." Then I do that again every few days. I have successfully gone from having an appointment 8 weeks out to 3 and to be honest, that helped me so much emotionally. Hang in there... I'm so sorry that you're feeling so bad. Let us know how you do getting the bloodwork ordered and GI set up!
  5. Hi Galaxy and welcome! Although my worst symptom at diagnosis was D, I can completely identify with the painful gas and bloating. I remember being so painfully bloated that it felt like there was a giant lead balloon inside of me. I was so uncomfortable all the time. I can still remember getting to the point of only wearing sweats because I couldn't stand the feeling of anything against my bloated abdominal area. Ugh! Your old Dr was an idiot! People do not accidentally lose 40 pounds for no reason at all. I'm sorry that you've had to deal with that. It's great that your new Dr has referred you to a GI. While you wait for that appointment, would he be willing to get the ball rolling by ordering a celiac panel for you? Any Dr can do that. That would include: IgA, TTG-IgA, TTG-IgG, DPG-IgA, DPG-IgG and EMA. I'm so sorry that you are going through this misery! Do keep eating gluten until all testing is complete! Do keep advocating for yourself...you know that something isn't right! Keep asking questions...this board has been an amazing resource for me 😁😁. Big ((((hugs))))
  6. Hi Palmtrees and big ((((hugs))))! Although my digestive symptoms come first, I think the mental and emotional symptoms are worse after a glutening. The brain fog is absolutely horrendous and the feeling like I'm stuck in some mental pit, that I will never come out of, is the worst. It's a dark and lonely place, truth be told. Thankfully, it does get better. Hoping you feel better really soon. 😄
  7. I was just coming on to post about this...I am fascinated! I sent the link to my mom and asked her when I first had gluten. She remembered...she had trouble with breastfeeding and I was started on formula very young. At that time in Iceland, they added cereal to it for extra nutrition. She sent me the link to the cereal: https://en.m.wikipedia.org/wiki/Pablum It has wheat! She also remembers that around the same time I got sick for the first time. Could this be it? I've been sick my whole life...so crazy!
  8. Hi Pcooley! For my peripheral neuropathy I take magnesium. My Dr recommended 200-400 mg a day. I started with 100 and found 300 to be the magic number for me. I take a chelated magnesium. It has reduced my symptoms almost completely. It was so bad at one point that I had a hard time sitting and reading. Are you supplementing with a good D3 for your deficiency? That will help things as well. Hole that helps!
  9. Hi fbmb! I take Florajen 3 for my probiotic and I do feel like it really helps. I contacted the company and they do test to 5 ppm. I've never had any issues with it and I do feel better when I take it. I don't take a multivitamin, just a D since that was my deficiency.
  10. Hi Fbmb and big ((((hugs))))! I'm sorry about your frustration, but I also totally get it. It took me a year to feel mostly decent and within that year I would have setbacks where it would seem for a time that things were getting worse. I spent a lot of time worrying and panicking,if I'm to be honest, but things would improve again. Now, at 3 years since diagnosis, I feel much better and can tell that things are continuing to improve for me. Getting your Ttg down that much in 2 months is amazing, so great job! I would also say to wait to have them rechecked. Do you keep a food diary at all? I started one at about 6 months in due to continuing issues and it has really helped me to be able to figure out foods that just really bothered me. I gave up all dairy and soy for a time. I've been able to get back some dairy, but still avoid soy. Sometimes, writing down what you eat and any symptoms that follow can really help pinpoint the problem. I wish you lots of luck in feeling better!
  11. This is very interesting. Does it say anywhere what it would be called on the ingredient list? I personally can't handle the additive carageenan. It's added to a lot of yogurt, ice cream type things to make them creamier. For me it causes tremendous bloating. 6 months after diagnosis I was still having painful bloating daily that my Dr and I couldn't figure out. I scoured my food diary. Nothing. Then I saw an article on additives that cause issues for some and carageenan was on it. I checked and sure enough it was in the almond milk i was using to make smoothies every day. I cut that out and my bloating improved by 75%.
  12. I agree Cristiana! My nodule was 5 mm when I had been gluten free for 6 months(that was when it was discovered). A year later it was 3.5 mm. I do think that for celiacs, at least, that thyroid problems including nodules are helped by the gluten free diet.
  13. Wonderful news! I'm so glad for you and am sure you are relieved! 😀😀😀😀
  14. Absolutely! Keep advocating for yourself! I'm thinking of you today, hoping that all goes well. Hugs!!
  15. Hi again 😁 As of September, your Free T4 was at 53% of the range, so decent. It could, of course, have changed since then. Have your symptoms increased recently? I would say that with your symptoms and a palpable nodule that most likely your values would be changed now. Are you able to request having your bloodwork redone? With the nodule, is there any chance your Dr would order an antibody test just to get a better idea of what's going on? Let us know how it goes tomorrow! Hugs!