• Announcements

    • admin

      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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About afitgirl

  • Rank
    New Community Member

Profile Information

  • Gender
  • Interests
  1. Hi guys. I'm less of a spazzzz about it now... I think. I appreciate all the time and thought so many of you put into helping me cope one week into this diagnoses. Now I found myself thinking, this is a huge deal!! Wait, maybe this isn't a big deal after all. I'm confused. Is it what you make of it? The food at home is not a problem for me at all. I'm super used to eating healthy and I'm the one that brings the veggie and fruit trays to picnics with friends. No biggie. My house is going gluten free and we are dumping all the cooking stuff that is plastic or wood and replacing the toaster and stuff like that. The restaurant thing is what is making me nervous. I've found some help with real life celiacs and they seem to tell me that you take the precautions at restaurants that you should, you don't eat food that is iffy but then you live your life. Basically saying it was okay to order a salad and baked potato (bringing my own dressing in my purse--which I've done for years anyway) telling the wait staff your needs and then enjoy your meal. Does that sound right? Here is my plan. Can I have some thoughts on this? Live day by day until I have: -uterine ablation (what started this mess---scheduled June 11th) -Meet with GI (still haven't seen her---sigh...waiting to be called with appt) - Have endo for damage. -After that, clean out kitchen and eat gluten-free 100% -Trust labels on foods (this is a big issue for me. So many scare me about that reading here/books and I don't want to be that way. The real life celiac friends (2 of them) say I should trust labels) -Find 5-6 restaurants that I feel like I can trust. Tip well, get to know manager. -Make it through beach trip with family/friends -Make it through cruise in July with husband and friends (super scared of gluten-free on the carnival cruise) -Test children Continue this until 6-8 months from official gluten-free start. Have new blood panel and check levels. If negative or dropping decently continue on path. If not, sink into deep depression. (Not really....but I'm fearful of that). If all goes well then I will look into another endo 12-18 months later. Sorry for typos. 3 year old on lap. Thoughts on any of this?
  2. Well it was normal red blood. Not platelets then.
  3. Do low antibodies mean you aren't eating gluten? Or "too much gluten" to do harm? Does it mean your intestines are healed or "healed enough."
  4. This is a huge issue for me. I don't know what is okay and what isn't? I'm not worried about whole foods but how do I know what products are okay? I was excited to discover loads of stuff labeled gluten free and although I cried at the store, I at least brought home stuff to try. But now I read that nothing is safe? How do I really know? Calling seems insane for every single product and then I'm just trusting the person on the other end who doesn't care about me at all??? How does this work?
  5. Do I need a diagnoses? I feel like my scores and this forums' opinion is my diagnoses, right? I'm still seeing the GI, but won't they tell me what you do?
  6. I had a postive on endomysial Antibody IGA and a TTG score of 17. The blood transfusion came out of nowhere! I was on day 1 of my period. (Which I bleed through a tampon in less than an hour for 2 full days at least and have this cycle every 17-23 days). Hyper and excited to teach a new boot camp class in that area and suddenly got dizzy and dropped. I was taken to the hospital and my hemoglobin was a 7.6. Since the transfusion I have been able to carry on my normal life but I need more sleep, I'm foggy mentally and lost some drive. I haven't felt even 50% of what I used to feel. Before that I bounced around on top of the world. I hated to even sleep. I was mad when I had to get the 4-5 hours my body needed. I guess I do have some GI things but I thought it was normal. I feel bloated after a huge meal. ( I was eating 3000 calories a day because I was exercising 2 hours or so every day with classes). Maybe gassy too. But I eat triple the amount of veggies that normal people eat also.
  7. I'm sorry if I offended you.. No, I just don't understand it all yet and I'm really scared. Like really, really, really scared. It is confusing to me because I read about "being gluten" and horrible damage secretly going on in the body. It would seem that everyone would live in fear. Always. I'm just trying to find out what is true. I'm fine with the dietary changes. That part seems easy to me. I'm sitting here now eating a bowl of watermelon and it's a choice not an gluten-free option. What is scary to me is that it is cut and stuck in a plastic bowl. So potentially I could be living my life gluten-free and not getting better because I'm contaminating myself. Right? Isn't that how it works? I'm scared of that!!! That is what I don't understand. And how do I know if I get better? I think cross contamination will kill me not my lack of trying with the food. I haven't even seen a GI, its been referred but no call yet. I've just seen my OB and family doctor who thought I was crazy for wanting this and KNOW nothing about it. My only understanding is coming from you guys. And the life you lead is scary to me.
  8. So 19 days probably mostly dead then. Is it possible I'm producing antibodies to their blood that could show up on the test? My doctors were so confident that the anemia was heavy period related. When I didn't have a period (pregnancy and breast feeding) my numbers were fine. I'm the one that pleaded for this test for peace of mind. I do need to find out of it was platelets or whole blood. Wonder how I can figure that out?
  9. I'm sure to you guys its obvious I'm in denial. But I'm looking for any hope I can. I felt great! Amazing and then one day dropped to the ground. No iron, low hemos were my problem. I do have extremely heavy periods (think: crime scene) that they said were the problem. I needed two bags of blood (which I assume were from two different donors) Since that day April 23, 2014 I haven't felt the same at all. Horrible and a struggle to pick myself up. Before I was on cloud 9. My question is: Possible at all that my blood transfusion gave me positive celiac blood results? The transfusion and tests were done 19 days apart. At the hospital my other nutrients were great. Normal potassium, calcium, and sodium. The only weak area was my iron. And really my periods have to have some blame in that. Every 19 days and SOOO heavy. Since the transfusion I have been on iron supplements and folic acid (to help absorb) it and my levels are all normal or super close to it. I only take one pill of each a day. I also ask because the ran a 3 month blood screen (whatever that is--checking sugars for diabetes) and it came back inaccurate due to the recent blood transfusion.
  10. Is it okay to wait? I imagine my intestines are exploding right now!~!!!!!! I feel like the uterine ablation and recovery would me more important?
  11. Contamination Anxiety- Help!

    Is this not a death sentence? Isn't or complications of it slowly killing me? I am so confused how I'm allowed to take it slow and learn as I go and that be okay? Don't I have to stop now and get serious or else??? I'm appreciate your help. I really really really do. I'm just so blind slighted with it all. I will get my kids tested. They are 8, 6 and 3. Im just waiting to get a grip on it myself. My mom, who'd I'd swear 100% has it based off of traditional symptoms was negative this week.
  12. I'm confused at when to start. I have positive blood result (big panel) and set up to see a GI (referred today). I'm trying to change my big food items to gluten-free already because I'm know I'm still getting gluten from a ton of other sources. I'm scanning things with an app but not overly reading labels. I live in a totally glutened house right now. I don't know if my GI will want a biopsy or not. I will probably push for it (even thought I'm scared) because I need to know for myself. I was told some Docs might see my blood work and scores and that will be enough. But I have anemia. I'm on Rx'd iron, folic acid and a multi-vitamin. As well as birth control pills strong enough to control my heavy periods until I have a uterine ablation done June 11th. Then I hope to be able to drop the bcp and maybe some of the other pills for gluten free ones. (They may be already but I haven't researched it yet- because I'm hoping not to need BCP to begin with after the procedure). Not too mention whatever recovery pills I may need to be on after the ablation procedure. So when do I change my kitchen, stop eating out, check every label, change my medicines, and basically give up my entire life to succumb to the hell that will be gluten- free?
  13. Contamination Anxiety- Help!

    I guess having three young kids I feel like If I make a mistake I could just die. I also wonder how people have blind faith that it's "working?" How do I know without real symptoms that I wouldn't just keel over. It's hard. I have soooo much energy. I love love life! I teach 25 fitness classes a month. I swear I feel soooo healthy aside from stupid anemia. I'm so blind sighted by this.
  14. Contamination Anxiety- Help!

    You're right, that is not what I want to hear. I just don't understand it to be true. I feel like it has to be impossible for people to be 100% all the time. There has to be errors in there just living life. And then I don't understand how they are alive. Honestly, I don't. I would think I will need to be in a bubble forever. People that eat out, share kitchens or take lots of medications have to be exposed. Are they not healing? Next question please. If I get that tiny amouht of exposure...say from a medication that I didn't realize about does that set me back to the beginning? I guess I'm wondering if the tiny exposure is easily fixed? Or back to square one each time you have an contamination? How will I even know if I'm healing? I'd think I'd need to get an endoscopy every 3 months for the rest of my life. And why do I read that gluten-free really doesn't heal that many guts out there? Maybe symptoms are better but I'm reading surveys that show little improvement on the actual intenstines. I'm freaking out and this feels IMPOSSIBLE. Everyone here makes it seem like in time it will become easy, BUT I can't see that possible without being in a bubble or getting a little gluten time to time. NVSMOM- My platelets are small and few. However, that is changing with the iron supplement I'm on.
  15. I'm new and still very bitter. I am trying to understand as much as I can. I have read conflicting information about cross contamination. I'm pretty sure I can make gluten free choices for food. I'm not overly worried about that (although I am sad). But I don't understand the cross-contamination thing at all. People take such different approaches. Do I need to worry about the Tim Horton frozen beverage machine that makes 99% gluten free drinks on it? Do I worry that a roll brushed agaisnt my baked potato? Can I just pick croutons out of salads? Do I really have to worry about using a separate toaster? Can I trust that a restaurant prepared my gluten free choice correctly? Will cross contamination killl me? Can I eat gluten free to my best ability without worrying about 1 tiny missed molecule? Will taking 99.5% of all gluten out of my diet not start to heal me? So if I do get a tiny bit here or there it won't do real damage? I don't have real GI symptoms (that I know of) I found out about celiac through a random blood test because my anemia (blamed on heavy periods) was so severe I needed a transfusion. How will I know I'm safe? I'm so frightened about this.