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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

Momma Bear

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  1. Thank you for the replies. I have no intentions of eating any gluten at all, ever! I am just so floored that a GI doctor could be so uneducated! I will not be going back to this office and I plan on talking to my primary care about everything that happened. I am taking this seriously because I have two young children that need a healthy mommy! I am having bloodwork done to re-check my antibody and vitamin levels in a few weeks and my primary care said we'll see where we go from there.
  2. Hello all. A little recap to my story- went to a new doctor last month, mentioned I stopped eating gluten a few months prior. He ran bloodwork (assuming it would show nothing) and was surprised to find really high antibody levels (endomysial, gliadins) as well as B12 deficiencies and almost non detectable levels of vitamin D. He told me point blank I had celiac and to eliminate all gluten from our home, but wanted me to have an endoscopy to assess the damage and evaluate my esophagus. I had my endoscopy this week and when I mentioned to the nurse I have not had gluten in 6 months, she told me I was wasting their time. She said my bloodwork was probably a false positive and that I may just be sensitive (in a very condescending tone too!). After the scope the GI doctor told me I had damage from reflux and needed to start Prilosec. He also said that my intestines is healing and not completely flat (not entirely sure what he meant by that). My husband asked him if I still had celiac and he said yes but a little gluten would be fine. I am so confused by that. Is my doctor wrong?? Either my primary care has no clue or the GI doctor is clueless because I am hearing two completely different things. Any insight? Our lives were turned upside down almost two months ago when we eradicated all gluten in any form, from our home on top of no longer eating out. Was it a waste?
  3. Congratulations! I am just starting this journey and I was just expecting to start feeling better right away but I have quickly learned that it's a process. The damage didn't happen overnight and it's certainly not going to heal overnight. Thank you for the encouragement and I hope that someday, I too, will be able to say that I feel human again!
  4. I mistyped, sorry! I meant I doubt it would be my appendix because I have had the pain in my lower right abdomen a really long time.
  5. It could be gallbladder but I do know, from a previous barium swallow years ago, that I have a very long and skinny stomach. The technician said it was unusual when he was trying get a x-ray of it (weird, I know). So who knows if it's gallbladder. As for the other pain, I have had it for quite a while so I doubt it's my appendix but again, I don't really know. I guess I will wait and see what the GI doctor says- I have an endoscopy in a few weeks.
  6. I'm actually really glad you posted this. I just asked the question recently about where everyone's 'aches and pains' are located and haven't received any replies yet. I have pain near my belly button on my right side and I have back pain that would be in the same region as the pain near the belly button. I have tried chiropractic, thinking that would help the sore spot on my back, only to be told by the chiropractor that the pain is coming from something internal that is causing the pulling on my back. I can only assume that it's inflammation in my intestines. I also have pain in my lower right abdomen (neary my ovary) and pain in my back in the sacral region on my right side. The pain may be related but I do have arthritis and my doctor suspects possible ankylosing spondylitis. I am new in this journey as I have only been recently diagnosed (a couple of weeks ago) and have been gluten free for only four months. I have no clue what the pain is from or if I will ever know but it would be interesting to know if others have experienced this.
  7. I realize that with celiac comes lots of abdominal discomfort but I was curious if anyone has areas that always hurt, not just occasionally. I have two sore spots that always ache and if you put pressure on them, it's painful! My first one is near my belly button on my right side (I have a long, thin stomach according to a tech who did a barium swallow years ago, so I assume this would be near the beginning of my small intestines). The other is my lower right abdomen, near my ovary. I assumed it could be an ovarian cyst, though I've never had one, but now I wonder if it's from the celiac I've had for my entire life without knowing until recently! Does this sound typical? Anyone else here have any aches and pains that never go away? Also, did you get any answers as to what they were? I go for my scope in a few weeks, so hopefully I can start to get some answers but I know it's not going to help with the sore spot on my lower abdomen. FYI, I was diagnosed via blood test (really high anti gliadin and anti endomysial antibody levels, low vitamin D and B12... I also have DH on my scalp). II have no idea what to expect with the scope!
  8. Again, thanks for all of the guidance! I already took my children for bloodwork and got a call Friday saying that the results were negative (antibody levels at 2 for one of them). We completely removed all forms of gluten from the house, including all personal hygiene products, laundry soaps, etc. I am also eating a whole foods diet, as my doctor instructed, and I was also told no eating out for now (though the irony is that I never did like eating out because it always made me sick, now I know why!). I was given a vitamin B12 injection at the doctor's, as well as a prescription for a B12 nasal spray. In addition, my doctor has me taking D supplements. I'm going for another blood draw mid October to see where I'm at with my antibody levels (hopefully non-existent!!), and my vitamin levels and then from there he's going to make decisions as to what the next step is if there's not enough improvement in the vitamins. I dont feel any different yet and one thing that is really bugging me is that I am still struggling to breath at times (this was new as of a month and a half ago, prompting my initial visit to this new doctor). I had lung function test as well as an x-ray and everything was okay. He did say he could hear crackling in my lungs, not sure what that's from but I have to assume its the acid reflux. Anyway, I am doing what needs to be done and I hope I am on the right track to getting healthy, finally! Thank you, thank you, thank you again for all of the help!!
  9. Thank you! I was kind of thinking along the lines of the responses given. I did not want to resume eating gluten and my doctor did not suggest this but I was curious as to why he would proceed with a scope despite him telling me that he is absolutely certain I have celiac (he did say I was one of the worst cases he has seen, though I am not sure what his experience is or what he meant by that, especially since I am a new patient to his office). I am going to keep up with the gluten free in the meantime and when I do have the scope, I will share what the gastroenterologist finds. Again, thank you!!! I am so grateful for this forum :-)
  10. Hello. I posted my intro and story already but to recap, I was diagnosed with celiac a couple of weeks ago after presumably having it since childhood (I am 32). My doctor said I had it based on anti gliadin and anti endomysial results (he said they were really elevated but I didn't see the results, so I have no idea what he gauges as 'really elevated'). He wants me to have an endoscopy to see if I have damage, take some biopsies, and evaluate my espophogus because of some reflux issues i have. I have been gluten free for at least four months prior to my diagnosis, but since the diagnosis, we have been super strict and removed it completely from our home and no longer eat out at all. My question is, do I need to go back on gluten for the biopsy? My doctor told me he wanted me on a whole foods diet and no eating out, as well as eliminate all personal care products with gluten (I possibly have DH on the back of my scalp), so without intentionally eating gluten, it's unlikely I will get any in my system. He didn't say anything about needing it in my system prior to the endoscopy. Any thoughts??
  11. Wow! Thank you so much for all of the thoughtful and very helpful replies - I started bawling when I was reading all of the responses. I know I am just starting out on this journey towards better health but I already feel so much better emotionally, just knowing that I'm not alone in this struggle. For my fellow believers in Christ, thank you for the Scriptures and prayers -what a blessing! I have learned so much in this past week and I am hopeful that I will eventually settle into this new way of living. There are times where I am just overwhelmed with anger and emotion but I know that this will pass. Again, thank you for each of you that took the time for me to respond to my desperate cry for help. I am just floored, really. I hope that someday I will be able to encourage someone who has to walk this journey the way I've been encouraged here.
  12. Two weeks ago my life was turned upside down with a follow up doctor's appointment. I initially went to my doctor for a long overdue check up (I have Behcets disease and while I normally just deal with the symptoms, I thought I should get evaluated for some shortness of breath). I happened to mention that I eat gluten free (for about the last four months) because it significantly reduced my IBS. He decided to run a celiac panel, though he wasn't so sure it would show anything. Fast foward a few days and I received a call saying I needed to come in to go over my lab results. I was told that my bloodwork said I not only had celiac but I was one of the worst cases he has ever seen and he suspects significant intestinal damage (said my anti gliadin, anti endomysiol levels were really high, though I didn't see the results). I was informed that my vitamin B12 was very low as well as my vitamin D. I am having a biopsy in a few weeks. To compound all this, my doctor also suspects I may have Ankylosing Spondylitis (I have arthritis in my spine that is steadily getting worse as well as testing positive for the HLA-B27 gene). He also threw out the scary lymphoma word...why?? I am struggling with this because in looking back (I am 32), I can see how painfully obvious this diagnosis is and that it is very likely I have had this since I was a young child. Let me just say, my childhood was miserable and I spent a good chunk of it being poked and prodded trying to find out what was wrong with me (they initially thought Crohns or inflammatory bowel - both ruled out). I should also mention that I suspect I have DH as well since I have a scaly nasty rash on my scalp. The itch is so intense and the sores weep so that my hair looks greasy when it's flaring up. It has slowly taken over the entire back of my head. Again, I am angry because it's something I've dealt with since childhood and no doctor has ever given it a second thought. I have also had this dull ache next to my belly button for over a year - assuming it was maybe a hernia...now, who knows! I have never felt good a day in my life and i have gotten so used to being sick that it became my normal. How do you deal with all of this? I am a mom of young children and I feel like I am falling apart at the seams right now. I have a strong faith in God and I trust that He has a plan for me....it's just not the plan I was hoping for. Do you ever get over the devastation and settle into a new normal? I just don't know what to expect. If you made it all the way through this rant, thank you.