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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 Judy3

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  • Birthday 09/26/1957

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  • Interests Reading, cooking, movies, music of all kinds, walking, hiking, bike riding. Laughter, Soft blankets, fuzzy kitties and the smell of freshly cut wood.
  • Location WI
  1. You are not crazy... I myself had a host of food allergies fish, seafood, nuts of all kinds etc...  for many years 24 to be exact.   I was retested this fall for all of them and many more and they are now gone... Not allergic to anything.  My allergist contacted my gastroenterologist and they together have concluded that the 'allergies' were triggered by undiagnosed Celiac which I was diagnosed with 5 yrs ago.   I have been strictly gluten free for the last 5 yrs and now the allergies have gone away as well as the damage in my 'gut'.. Our immune system resides in the gut, so if the Celiac was destroying the gut undiagnosed for years ( I was the sick kid in the family) then it could trigger some pretty intense other autoimmune reactions that would not be recognized as 'traditional' Celiac symptoms.   As I said I've always had stomach issues but not bad enough to slow me down until 7 yrs ago, then I was a mess.  Stomach pain, nausea, diarrhea, fatigue, insane muscle pain and joint pain..   I've had blood tests, biopsies, and genetic testing and was finally diagnosed based on the biopsies and the genetic tests as my preliminary blood tests were negative.  We know now that the original tests were negative because I was so sick I was living on cottage cheese and jello at the time and they are both gluten free so I was not consuming anything.   I remember my gastro doctor saying two things to me.   1.  There are only two things in this world that can make your insides look like raw meat and that's cancer and Celiac. He knew I didn't have cancer because he did that biopsy first.  2.  Now that you are diagnosed you have to be strict with gluten free for the rest of your life and I bet the allergies either go away or get better.. (that was 5 yrs before the allergist!!!)   Gluten free eating is not difficult at home, sometimes scary eating out and always scary eating at other peoples houses.   Christmas eve my cousin was excited that she had gone out of her way to make most of the food gluten free and then proceeded to take a cracker and run it through the shrimp dip I had brought.   I put a spoon in it on purpose and we discussed it about guiding the guests to take some on their plate and not dip crackers but that didn't happen so I had coffee and caramel corn (that I made and brought) that night .   I laugh at this because it's a learning curve..   But I digress... My comment was supposed to be about you not being crazy about the allergies it's a real thing.. I am living proof. !!!      
  2. Yeah $300 - 400 but well worth it because it tells the tale.  If she has the DQ2 or DQ8 gene with the highs on the other tests.  She has Celiac.   You can have Celiac unless you have one of these genes.  If you don't it could be gluten sensitivity which has the same symptoms but doesn't cause the damage of Celiac.  
  3. Working full time plus I can answer your question.   It gets better with time and the healing will make you feel better. Make sure you aren't getting gluten someplace you wouldn't expect.  Most importantly you can't cheat and say 'just this once I'll have some'... Not going to work!!!   Bring your own lunch and learn to cook your own food.   There are a lot of gluten free products on the market now but I still prefer homemade. My office has a wonderful cafeteria but I only eat salad off the salad bar from there because I've been 'glutened' too many times by cafeteria workers that don't get it.   So now I bring my lunch.   If someone brings in treats don't ever eat them if they are homemade, even if they say they must be gluten free.. because cross contamination in a kitchen that isn't entirely gluten free will get you every time.     If it's an event where you have advanced warning bring a treat for yourself that you know is gluten free and join the party!!   I've rarely missed a day of work due to Celiac in the 5 yrs since my diagnosis but I did a lot of reading and learned what not to eat and how to find it 'hidden' in other foods.   It's a learning process but you have to be totally gluten free, all the time!!     Eventually, you'll heal and staying with the gluten free diet will keep you that way.   
  4. I have Celiac and I must say I felt better after 3 days on the gluten free diet.. Yes the damage takes much longer to heal but the initial symptoms were better in just 3 days..   So it's not impossible.    My tests all came back negative at first until they did the genetic testing and biopsies.   My doctor told me that there are only two things that can make a person's insides look like raw meat  Cancer and Celiac and at that time he had already done the biopsies for cancer so he knew it wasn't that and was convinced it was Celiac.  The second biopsies and genetic testing proved him right so I have been gluten free since that day (5 yrs now) and never felt better. 
  5. I've been eating them with no issues however, I wanted to bring to your attention some 'conversations' that have been happening in the Celiac world that they may not be consistently gluten free.   General Mills developed a process to take regular oats (not certified gluten free from the farm) and remove the traces of gluten in it to make their product.   Some are saying that one box could be gluten free within the 20 ppm limits and another may not as their testing loads boxes together and takes a mean sample.   I don't know how true this is and General Mills is addressing those concerns as well.. Just want to let you know that in case you have issues.    I don't as I said, I've been eating them a few weeks now with nothing so I'm not sure I believe the hype of the concerns being voiced.      I love Cheerios!!    
  6. I used to feed my cats that all the time.  My male now has diabetes and my female had bladder infections regularly while on it.  Be careful with that stuff!!! 
  7. Chicago

    My favorite restaurant in Chicago is Quartino.. they are an italian restaurant but have an extensive gluten free menu.    Google it for location and menu 
  8. Just my opinion but if the child has the genes AND has gluten intolerance already that is Celiac.
  9. Outback I would trust.. other's not sure.   Mexican food is good when you are in a strange place.    ALWAYS tell the waitstaff that you have Celiac.   I know don't want to broadcast but it will help believe me.    Recently, I've been asked is it a choice or an allergy when asking for gluten free.. I'm always upfront and blunt.   Celiac disease, allergy if you must classify it that way, extremely sick if you don't . please be careful!!    Haven't had a problem with my nice but blunt response.      One local restaurant cook even don's gloves to make my breakfast on Saturday mornings         It's doable - I've been at this 5 yrs and at first it seems daunting but it will get easier.. On your trip good luck.   Some of the places I have eaten at when traveling   Outback, Longhorn Steakhouse, Olive Garden, local or chain Mexican (think corn tortillas) , Indian food (just skip the bread), and if at a diner type it's a crapshoot so be careful there.  Oh and last but not least Red Robin!!! 
  10. Other Food Sensitivities And Timing

    Hang in there, it takes a long time to heal from the damage of Celiac either initially or a glutening.   Sometimes there isn't an answer to why something pops up again.   Just be vigilante with the diet and keep smiling      I know it's tough I'm almost 5 yrs into this and I still have a day here and there where I wonder what the heck is going on...   Not often anymore but still there.   Foods in their natural state is the best bet until you figure it all out.  Some have a sensitivity to corn so maybe lay off the popcorn for a while and try to reintroduce it later...    again hang in there  
  11. I take Omeprezole (prilosec) and I get the generic and have no problems.  I've bought them from various stores Costco, Walmart, Target  etc... and never had a problem 
  12. 6 Years

    I do plan to try them ALL eventually   lol
  13. 6 Years

    I've been gluten free almost 5 yrs now and just this week I was re-tested for all my food allergies Shrimp and seafood, fish, tree nuts and flax and they are ALL GONE!   I was able to eat some almonds last night with no reaction and a tuna sandwich for lunch today!!   I had anaphylactic shock from Shrimp 23 yrs ago so they won't let me eat that on my own yet.  Having a food challenge in July at the allergists office where I will spend the day eating shrimp from small pieces to a full meals worth and he's going to check my vitals along the way and hopefully take that off my list as well.    I'm so excited I've been so limited in the food department for so many years and they believe (no way to prove it really) that my undiagnosed Celiac disease was triggering the severe food allergies.   They did 50 blood tests - all negative and 30 skin tests a month later - all negative. and 20 yrs ago they were positive!!!     I went grocery shopping last night and purchased fish for the first time in 23 years  lol     I ran into an old friend at the store today and she said that I have my 'sparkle' back!!   I've known her for 25 yrs and seen her on and off the last 10 and she said that I looked sick for years and now I look wonderful... made my day.   I feel so much better since going gluten free, I have energy and have my life back!!  Now I get to eat new foods that have been off limits for sooo many years.   New rule though is one new food at a time to re-introduce them so IF I get a reaction I know what's it's from.   It's so hard because there are so many things I wanted to through in my cart!!   I will be patient though.  I did realize that while the tuna sandwich tasted ok at first I probably won't be looking for one again soon I hated the taste  LOL   amazing how 23 yrs of no fish taste makes it nasty.   Hope the tilapia I bought for later in the week is a better experience     My 26 yr old son is a little freaked out by all of this as most of his life fish and nuts were a no no and were never in the house and now he said to watch me eat it is a little nerve wracking for him... Traumatized at 3 yrs old watching his mama get hauled away in a rescue squad.. and he's never taken a bite of fish since then.     Hopefully, we can both get over that!!!     A life time of stomach aches and now it's time for the second lifetime without them  
  14. I don't have the dairy issues but have some exciting news about my food allergies.    I've been allergic to shrimp and fish and nuts for years (23 to be exact) and diagnosed with Celiac almost 5 yrs ago.   I have been gluten free since that day and now my doctor sent me to an allergist for my sneezing etc.. and it turns out that I have nonallergic rhinitis in regard to that but in the process he tested me for the food allergies 20 of them.. both blood tests and skin tests and they all came back negative!!!   So in a month I'm doing a food challenge with shrimp in his office and if I pass I can eat it again!    The last time I ate shrimp I had anaphylactic shock and ended up in the ER via rescue squad.      He said allergy testing has come a long way in 23 yrs but he thinks that I either out grew it or more likely my undiagnosed Celiac disease manifested in a strange way and it 'appeared' that I was allergic to all this stuff...but now that it's healed they are gone..    He said at most I have an intolerance and not a true allergy so it's not life threatening. He did some blood tests yesterday to see if I'm missing an enzyme which could be causing the nut allergy symptoms (numbness in the mouth) when I eat nuts and flax...     I'm very excited about all this!      Wish me luck, I just may have a tuna sandwich for lunch  (on gluten free bread of course  lol) 
  15. Does It Get Better?

    Not sure what to tell you about fast food except its probably not an option for gluten free.    I use Glutino bread and it holds up pretty well for a sandwich when I take it to work doesn't need to be toasted either and that's a plus because most of them do to be palatable.     You have a hectic life so planning is essential as you already know.  Cooking ahead is good so you just have to warm it up... you are on the right track!!    I am also allergic to nuts so I avoid the snack foods too.    I eat fruit and cheese mostly for snacks.   Seems a carb (fruit) and protein and fat (cheese) combined makes it hold off hunger longer     For a grab and go snack you could do rice chex and dried fruit (raisins, cherries etc.. ) in a bag or bowl to eat while you are driving (one handed grab!!)    Just some suggestions from what I do.   Hope you figure it out..