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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.


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About Gemini

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  1. I urge you to tell us what brand of shredded cheese had gluten in the anti-caking agent because you would be doing the Celiac world a big favor by keeping us safe in our food choices. It would also be good to list the ingredients on here so we could see for ourselves because I have never come across one in 11 years gluten free.  That would be a first!
  2. There is no gluten in powdered cellulose.  It is derived from plant sources and some cheese manufacturers actually state, on their websites, that their cellulose contains no gluten.  I would expect they put that in there because they were getting a lot of questions on it.  I have never seen a shredded cheese with gluten in it but then again, I prefer to grate my own cheese as they don't put any added junk in a block of cheese.  Dairy can be harsh for some with Celiac so it may have been a dairy problem.  
  3. Ha, Ha, Ha!!!!!  You have a great sense of humor!  At some point, the anxiety issue always comes up.  I remember one doc saying I needed to go "talk to someone" about my problems and that would help my stomach issues and I almost told him that the only problems I had were doctors who couldn't help me.        Good luck with your appointment and keep us updated...........hope it all goes well!
  4. That is just doctor speak and they are required to behave that way.    If this doctor will do any test you ask for, how about doing the gene testing?  That will at least tell you if you have one or both of the genes to actually predispose you for Celiac.  It doesn't mean you have it, as you probably already know, but with your laundry list of illnesses and symptoms, plus a positive DGP test twice, it sure does get frustrating and annoying when they insist of extremely invasive testing. Plus, what would happen if they didn't find any damage? That does not rule it out, with a positive DGP twice! But they will tell you it may or they will at that point ask for a dietary trial.......which you are already doing.  You do what you feel is necessary for your own comfort but this is the main reason I do not spend a lot of time in a doctors office. They make things much harder than it has to be....all for their own record. Good luck and keep us posted! 

    I am surprised that rural France is not more gluten free friendly as French cooking is basically gluten free......except the bread and pastry part!  I find it the easiest cuisine to cook because so many of the recipes are already gluten-free.  Do you think the French are more resistant to changing the way they do things in restaurants because food is such a huge part of their culture?  I think the main reason that we have so much here is there is a lot of money to be made in the food industry regarding gluten free products and we have demand. I would say buy what you need on-line.  This is what I do for some products. The internet is a great resource for finding things you need and there are tons out there.  Are there any restaurants where you live who you could ask if they could provide a safe meal, with your instructions? It does not have to be a 100% gluten free place. You can eat a completely safe meal if the chef understands cc...which he should if he is a chef with training. You are lucky to live in country with so much good quality food. I have been to Europe many times and the food quality is really high!  I love French cooking!  They do food better than anybody. 
  6. Good grief!  I totally see why you would want to steer clear of doctors!    I am so sorry that you have had the typical Celiac are falling apart on all levels and the doctors never figure it out.  I just have a few added words to say about the endo....... Yes, the only thing that will trip a DGP is a reaction to the gluten you are ingesting.  Having only 1 positive does not exclude Celiac so the doctor that didn't look deeper in 2012 after your DGP was positive is guilty of being an idiot. He has caused you 3 more years of illness and suffering.  From the list you gave above, you sound like a walking talking case of Celiac. When I received my blood work back, it was more definitive than yours. I failed all the tests by huge numbers and presented with classic Celiac. I was extremely sick at the time, thanks to the AMA, and I refused the endo because I was too sick to have them shove a tube down my throat. I figured if the gluten-free diet did not help, then I would have to resort to the endo then, to see what could be happening.  Within 3 days of starting the diet, the Big D was gone, without any use of anti-diarrheals....just went gluten-free.  The vomiting stopped.  It was miraculous. I never had the endo and have been doing great these past 11 years.  I also had gene testing done and came up with a double Celiac gene so there was no disputing what it was.  The most important thing you have to remember is that if you skip the endo, you have to be comfortable with eating strictly gluten-free for the rest of your life.  I have never had a problem doing so. I actually don't think this diet is that big of a deal. How hard is it to eat gluten-free healthy? I didn't have to change my diet all that much anyway....just stop eating all that wheaty bread the docs said I needed to eat for health!     You will find that if you respond in a very positive way to the diet, you won't even want to go back to eating gluten.  I wish you luck with your decision and success with the results. BTW...having a high ANA and low white cell count does not mean pre-lupus.  I don't know who told you that but I had really, really high ANA 10 years ago and always have had low white cell count.  Both are common with autoimmune disease in general. The ANA is not a test for any specific disease.  My original ANA was 1:2560 and after about 8 years gluten-free, it was down to 1:320. I also have Hashi's thyroid disease, Reynaud's Syndrome and Sjogren's Syndrome. I still have a low white cell count but never get sick anymore so it is not something to get worried about.  So, you see, all this can be improved with the right food. Do not give up and do not let the gloom and doom people interrupt your healing that is to come.     
  7. Very true!    Besides, as you are rinsing dishes well after washing, I can't see how this would pose any issues.
  8. It certainly sounds like Celiac Disease and one of the most telling is that you feel worse as the day goes on.  I felt fine in the mornings also but was eating gluten all day and then by day's end, I felt just the same as you.  Your immune system takes a little time to mount the attack so being sicker at night is what usually happens with classic Celiac. Based on your symptoms, push the doctor hard to do a complete Celiac panel. I would also push for gene testing, to see if you carry a Celiac gene that could predispose you to trigger for it. The gene testing is not affected by anything so it's another useful tool in aiding a diagnosis or ruling it out.  I am a firm believer in doing both methods of testing in the can tell you a lot. Good luck!
  9. There is so much to say regarding this post but I do not have a lot of time right now.  I have been to the UK, Ireland and Scotland many times over the past 20 years and eaten in many a French restaurant in London......with real French people.  I have to agree that the food, overall, is much better than here in the States. You can get great food here and I do, but it comes at a cost. However.............and I have to say this.............please, under no circumstances, feed your Celiac child anything that is not really gluten free.  It does not matter at all that some people do not react to the gluten bread in Italy and France. It might be that the bread contains less gluten than the pumped up bread you get here in the States but I don't know because I haven't looked into it.  None of that matters.  When you have Celiac Disease, you cannot eat gluten, period, no matter where the bread comes from. To do otherwise is playing Russian Roulette with your health.  It will blow up on you down the road. This is a great time to really teach your children the importance of eating gluten free when you actually have a disease where you cannot. Let your child cry a bit and grieve but never, ever give in to them. To the woman whose husband has Celiac and she makes him bread that is not gluten free.....make sure he has plenty of life/health insurance because he is gonna need it!  It is denial and misinformation that makes people do this.  Just because you buy non-GMO flour and mill it yourself does not make the gluten content less damaging. I know you are trying to be sympathetic to your child's emotions but he has to learn to live with what he has and move on with it.  You are the one to help him navigate the gluten-free world and you have to be strong.  Whatever the reason is that people think they are not reacting is not worth what is going to happen down the road if they continue with this behavior. BTW....I do not think GMO's have anything to do with Celiac.  This disease has existed for a very long time.....way before GMO's even came into existence.
  10. First time getting glutened

    There is not one Celiac out there who hasn't slipped up in the beginning. You have not set yourself back by very much so do not be too hard on yourself.  As far as eating at any fast food establishment, I do not.  After being glutened by a Wendy's salad, I walked away from those places because the risk of taking a hit is just way, way too high.  Workers may try to be helpful but they will never understand the real dangers of cc and how very little it takes to make us sick.  That is the one common thread I hear all the time from people I try to explain Celiac to.......they are incredulous at how little it takes to derail us. Yes, being glutened does affect emotions.  I have never been an anxiety type person ever in my life but you know what happens to me now, 11 years into the diet?  I have elevated anxiety and am also more emotional until a few days goes by and my brain returns to normal.  Luckily, I am a veteran at this and I rarely ever take a hit anymore.  You'll get there too! 
  11. Does it get any easier?

    Getting sick from sharing a cast iron skillet has nothing to do with being sensitive......that's a no-no for anyone diagnosed with Celiac. You do not clean a cast iron skillet the same way you clean a stainless steel pan so there very well could be contamination left on the surface.  The only cast iron that is safe for a mixed household would be enameled cast iron. To the OP......of course it gets better!  Anything new that requires learning and time is challenging but you will become adept at it and it will become second nature to you.  I have been gluten-free since 2005 and I cannot remember eating any other way.  If you had to give up 90% of what you normally eat to do the gluten-free diet correctly, then maybe you weren't eating very healthy to begin with.  I will say that being forced to eat healthier makes a huge difference as you age and keeps many of the medical problems facing people today at bay. The worst I can say for this lifestyle is that, at times, it is not convenient but if that's the worst thing I can think of, I'm not doing too badly.  Hang in there and start exploring all the food you can eat.  It is a lot easier to be gluten-free today than it was even 10 years ago!
  12. I have to comment on some of Darren's suggestions for surviving in a non-gluten free kitchen. You do not need to use separate cooking utensils for cooking gluten free food unless the cooking utensil is porous in wooden spoons or plastic.  Those have to be dedicated for the gluten free eater.  If they are stainless steel or other metal type utensil, all they have to be is washed anyone would do when washing dishes after eating. Ditto for cookware......stainless steel can be used for both gluten or non gluten foods, as long as they are washed well. You cannot use/share Teflon or any cookware that scratches easily.  Cast iron? Dedicated because it is not cleaned with soap. It is cleaned differently and seasoned so would have to be dedicated. As for kitchen towels.....really?  Maybe if you do not clean and rinse dishes well, then you would have to but I assume soap is used and the dishes are rinsed in hot water so the need for a dedicated towel is not an issue. Ditto for the dishwasher....if the dishes are rinsed well before loading and running, no need to fear that one, either. Unless the OP's parents cannot or will not learn something new, and I tend to doubt that, having everything separate is not needed.
  13. Love Costa coffee!  I had no idea that they sold wraps also.  I also love Nero's and they sell gluten-free sandwiches on the Just brand of rolls.......very, very good! The liability laws are different here in the States so coffee houses generally only sell a gluten-free brownie, if you are lucky. We should adopt the same laws as Britain.  It is far too easy to sue here and that takes away choice.  We also only have 1 Nero's here in Boston and I hope more open.  I like Starbuck's but would like more choice. You guys have 3 major coffee that and they are all good!
  14. As other autoimmune diseases can elevate tTg slightly or produce low titers, you can have a false positive caused by another autoimmune disease, such as autoimmune liver disease, thyroid disease or Type 1 diabetes.  If you have something along those lines going on, it might cause a false positive. If you don't and do suspect Celiac, then the positive might not be false. Your symptom list in your first post all are red flags for Celiac Disease.  If you need an official diagnosis, then the only recourse would be to indulge in a gluten filled diet again and re-test or go to a private doctor and pay cash for the full panel.  Insurance is becoming as frustrating here in the States as it is in Canada, so I understand your annoyance. What I would suggest to you if you follow a strict gluten-free diet is to add digestive enzymes and probiotics into the mix.  These 2 items are highly suggested for someone new to the diet or for those who have weight issues as a Celiac.....which would be me also. I have gained 20 pounds since diagnosis 11 years ago and feel great but still use a lower dose digestive enzyme and probiotics because I just feel better when I use them. I still do not gain weight easily, even though I am healed. I think that no matter how well a person with Celiac heals, they still can't digest food as well as someone without it. You also have additional, serious conditions of the digestive tract so every little thing you do to help with digestion should be looked at.