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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. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About Susan_in_NC

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  • Birthday June 16

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  • Gender Female
  • Location Raleigh, NC
  1. Kissing A Non-celiac

    I wish I was so lucky, just had a 28 year marriage end because he thought my being gluten free was too big of a problem. Would not brush and floss for me would not change eating habits and started going "out" with others because the could be spontanious. So, yes you can be glutened by a kiss. And, finding someone who understands that isn't easy. Susan
  2. Happy birthday and may God bless you today!

  3. Waiting and wondering myself about response to your question. I scored low on both tests -- way below, under teens in available iron and was told total lack of stored iron - caused heart mummur. My Doc (who assured me the one thing I did not have prior to biopsy was Celiac) just told me to take iron 3X's daily with vit C to assist w/ absorbsion. Still under normal levels after almost a year. Let's hear What helps?
  4. I also have had severe back pains-- put it down to age and arthritis. but it does seem to get stronger when I have been marginally glutened -- trace amounts rather than a full blown I know I ate wheat sort of thing. Generally when I get lunch at work and have a problem, cafe mgr's hubby is CS and she tries to keep an sharp eye out. I speak with her she quizzes the staff that prepared my meal -- always happens no change of gloves, not clean pan. Once the fellow swore he 'cleaned a knife' -- by wiping it down with his hand towel. Thought he was gone after that, but saw him again today. Will look forward to new kitchen staff, hopefully better skills; current staff lost contract
  5. Thanksgiving Is Coming!

    There was a question early in this thread regarding the turkey meat and being OK, because it doesn't touch the stuffing inside the bird. I for one will not be stuffing anymore, or do two birds and using seperate basters on them. I mentioned basting very purposefully! I believe that the basting we do to acheive the lovely golden brown skin on our birds may cause the meat to be cc'd. If I was to take the juices released during cooking and baste the bird with that, it will contain gluten from a stuffed bird. Which in turn would cc the whole bird. In the past I have made 2 birds just to provide enough dark meat and extra white for sandwiches later in the day. So, this year one will be stuffed with apples. onions and celery. I've made and frozen some stock to use for extra basting juice, but now need to purchase a seperate (different color bulb) baster for the gluten-free bird. Anyone have a great Pumpkin Cheesecake recipe? I think I can do a ginger cookie crust (from gluten-free cookies) and modify a recipe I have on hand, but if someone has a tried and true recipe, I'd love to have it. For regular Pumpkin Pie too. This will be my 1st gluten-free Thanksgiving. Will be cooking for a group so need tasty things. I plan to do most things gluten-free and just go with it. Did a Birthday for son and served gluten-free and reg. food to offer to family members who have said they didn't know "how" to make gluten-free foods. (long story, and SAD ver SAD!) Susan
  6. My Toes Cramp

    Hey there! I also get toe cramps, most often in the large toe. PAINFUL! I have gotten foot cramps (in the arch) for years not so much in other large muscles. Then the summer before last summer the toe cramps started in earnest, so strong I could not stand or walk on the foot involved. Dr. gave me no reason or advice. Just massage and it will pass. Got the toe cramps just the other night when something supposidly prepared in a safe manner wasn't . Now that I officially Dx, suddenly he is listening -- no longer my imagination. But, he still has no answer as to why I get the strange and varied symptoms I get. All he said is I'm the last persong he would suspect as having celiac and what I experience does not follow the normal path. I also get like pins and needles in my hands and feet with a burning sensation in my feet from a light cross contamination. With heavier contaminations, I get that also but along with some very def. other side effects! Susan
  7. I second what Dandylionmom said, we don't want our kids to have ANY sort of problem, esp one we may have passed on! And, as many have said -- give her time to see you getting better, that should make all the difference in the world to her. It is a tough thing to tell family sometimes. I had both my kids tested. The daughter I thought was scott free has celiac disease, the son ( who does have a preexisting IgA problem) was in the clear. However, I plan on having him retest from time to time (blood test as it is less invacive) I have tried to contact some other family members -- ex sister in law to let her know -- strong possibility one of her daughters may be celiac disease, long history of symptoms. But she will not respond to me. Not unexpected, when kids were younger on of her kids had a BIG wetting problem (I'm talking into the teens!) but she would say it didn't happen and then the kid would have to sneak to take responsible action. Put the child in a real spot. So, of course she doesn't want to know that I suspect the other child may have a "problem" -- even one that can be managed and make her daughters life easier. So, give your mom the good info you have about how your new diet is going. If she goes off, get busy and need to make the conversation short and just keep on educating her. Good luck! Susan
  8. I love Mrs. May's stuff! I have found them at BJ's Club. They are sweet, but where I work there are "celebrations" where people bring in doughnuts, cakes and other goodies. Instead of missing those treats, I get out my snacks. It helps me cope! Susan
  9. I Had An Awesome Lunch Out!

    Chipoltes opened recently near where I live. I was so excited, because my favorite pre Celiac mexican resturant isn't a "safe" place to eat now. So, my husband and were going to give Chipoltes a try. As I said I was very excited, went in and happily was telling him about how I had heard such great things and how safe it was for me to eat here. THEN I saw rampent cross contamination. Gloved hands with flour tortillas, reaching into the dishes to assemble the orders, ignoring the utensils placed in the various containers. I was so disapointed! I asked if I could speak to the manager, and the woman I had witnessed using her hands instead of the scoops or tongs WAS the manager. I told my husband I could never eat at this location. She asked me why "when I hadn't even tried anything on the menu" I asked her if we could step to the side and discuss my reasons, she said she wanted me to answer there since I had made my statement "publicly" I then told her that she and her staff had not demonstrated safe food handling and that the various items were cross contaminated from their hands going from one dish to another instead of using the tools. She said it was easier and faster! To which I said but not safe food handling and we left, several other people left right behind us. Susan
  10. Ada

    Since I work with health benefits for a very large company, I thought they would be more willing to "work" with me. I will check the HIPAA laws tomorrow and post what I research. I know with the ADA it is on a need to know basis. Also, with disability it is on a need to know basis for reaching reasonable accomodations. HR would know, and have to keep material and info confidential, Managers may be informed if needed for job and in general that is it, unless circumstance requires med attention (like eppi pen be nearby and co-worker trained in admin of meds.) But, this is a laypersons interpetation of reading the laws -- I am not an expert. Basically, we have a schedule adherance, and if I have to "go" I need to be able to take an unscheduled break to attend to that need (if glutened). As I said earlier, I have only had one major episode when I was glutened and did take one of my 6 sick days to deal with that. The acomodation that I need is just not to hold needed bathroom breaks -- which I have already proven that I do not abuse -- to be granted. I didn't think that this reasonable request would endanger my job!
  11. Ada

    Yes, I have been told Celiac is covered by ADA -- please see title of original post. The question is how does this work? Symptoms are so general, different from person to person. And, so many Drs just don't seem to fully understand how this effects each person differently. For instance, I get fatigue, brain fog and the big D if glutened. I have a heart mummer from malabsorbtion and have been taking iron 3Xs daily trying to build back up my iron stores. Since going gluten-free this has only happened once -- I've been lucky or just careful enough~ Question is, HR is making noises regarding the condition being "pre-existing". I have worked for this co since last OCT, in their temp agency. I applied for full time, and during their slow movement of handling the paperwork I rec'd the Dx. Has anyone dealt with HR and the legal side of having Celiac Sprue? I am not looking to make trouble or cause trouble. I am very good at my job but want to know what to expect! Right now I am waiting for a package from the HR dept. I need to have my Dr fill it out -- describing symptoms, accomodations etc. But, what should he say? Right now I've just started gluten-free life. I don't know what my symptoms or reactions will be in the future, and truthfully I don't think he does either! Susan
  12. I am so right with all of you. In my husband's family, I have been the one to "care take" the group. One SIL has several med problems and generally uses them as a crutch to get out of family dealings (have seen her out when "sick at home and not able to help with _____) BIL's wife has MS and this truly has interfered with her activities, but he uses it to avoid doing things for his mom. Until just a few months ago his wife was still working full time, going to yoga 3x's a week and kayaking on weekends -- so, she didn't need him every moment to wait on her, which according to her he never did -- just didn't "feel up to" helping his mom. So, my hubby and I have moved furniture, painted, made repairs, done yardwork, car maintenance and grocery shopping in foul weather or when she was feeling low. We have also made a point to drop in at least once during the week and for longer visits during the weekend. Others (esp the brother, only show up for special occasions). For years, we have hosted the family get togethers. Including the family of the brother's wife. Recently a different brother was in town for just a night or two. I was recently Dx and just didn't want to deal with anyone else, when I hadn't learned yet how to deal with myself. So, I told MIL and hubby that they could go out to eat, I wasn't doing it this time. Well, the SIL with MS stepped up! She and her husband would host a cookout for the family. I asked what could I bring and was told no, she would take care of everything! WE SPENT AN HOUR ON THE PHONE DISCUSSING WHAT I COULD AND COULD NOT EAT. Now, she is a college educated woman. Worked for years in the local VET SCHOOL, in the research lab. SHE KNOWS GENETICS, allergic reactions and eating disorders. Well, we dropped in for the cookout, I was given a glass of water -- ok, they were drinking beer. My son was given the ONE can of coke they had on hand for his consumption (he is 17). What did my Dear SIL fix for dinner? Hotdogs (not gluten-free) Hamburgers (OK, I thought -- checked in the kitchen, she had seasoned ALL THE MEAT with not gluten-free seasonings! AND KNEW IT! Told me she hadn't saved any aside, because she wanted to have enough for everyone else -- 1 hamburger each --6 people I was the 7th). Pasta salad, no green salad, sliced lettuce and tomato -- dif CC'd carried out the buns on top of the plate! Made cobbler for dessert and also served cantalope -- Hurrah! I could eat something -- no, not really, made several comments to me about it being so good she wanted to save some for breakfast the next morning! We went to gather around the table and there wasn't even a place for me to sit down! I went to the other room and read a mag while the "family" ate. My husband was so angry when we left, my son thought he was mad at me for not 'getting along' but he was upset at her. For 10 years I had done things for her and the whole extended family and that is how I was treated! It has been a month now and I have not heard a word from any of them. My husband talked to his mom, and she made all sort of excuses - the girl had MS and it was all she could do just to have a cookout. I have not seen or talked to any of them since. And you better believe that this Thanksgiving and Christmas season I will concentrate on my immediate family! They don't always "get it" esp my husband. He is getting upset about my having to make special meal arrangements when we go out. We went for a after work drink with his co-workers, they all had different things to celebrate, school, birthdays all sort of reasons. Went to a local beer hall, no food at all I could eat, I quietly asked the waitress, thinking nacho's might be safe. NO, not even the corn chips were all corn. I had to sit for two hours and watch other munch. I did enjoy the company, they kept on trying to get the waitress to do things like bring me celery that hadn't been put on the hot wings plate, or even lettuce and tomato slices -- anything. The manager said no special accomendations. We would have left, but the BIG BOSS wasn't ready to go and had to play a bit of politics. Eventually one of the fellow told him what was going on and we all went to dinner (where once again I had to make special food arrangements, but with a lot of support from his co-workers). It is funny how he is now 'getting it'. It was like his lightbulb moment for understanding gluten-free living. susan
  13. Ada

    I recently was assigned to a new manager. She "strongly" suggested that I contact the Co. HR dept. and report my CS as a disability. So, I did. They however were not very encouraging. "If this unduly interfers with your job discription and basic accomodations are not able to be made" type of thing. I was only Dx last June, and since going gluten-free only had one episode -- extreme D and took a day off -- only 1 day instead of being off the phone and running back and forth ( after having to run 2X's in 1 hour). My direct supervisor had no problem with that , but I felt that it would be better for the Co. if I took the day off. I must mention, other than a lot of gas, I had not had extreme reactions until going gluten free. So, since gluten-free, I have stronger reactions. And, personally I feel that in the interim, with the learning curve and all, only 1 episode isn't too bad. What do you all know about our rights as far as working conditions go? Can I lose my job because I get glutened and have the big D and can't be on the phone all the time? I have to get my Dr. to write about what accomendation I may need. I don't think he really knows! Any suggestions? What should I have him ask for on my behalf? What exactly does the condition do overall -- my feeling is that it reacts differently in each individual. So, how do we generalize this for the HR dept? HELP!!!!! Susan
  14. No Longer The Lone Ranger In My Family

    In my family, three siblings can't be bothered. One is waiting for better health insurance coverage before she gets tested, has requested that the son in the military get tested, niece is waiting for better coverage. I believe that with the recent changes in ins. laws, that if covered by ins, and testing positive, they cannot be disallowed for coverage at a later date if continious coverage is kept. Both my children have been tested this week and we are waiting for the results. HOWEVER, did inform my Co. HR dept of Dx per manager's request. They were not very friendly and supportive. Makes me wonder what is down the road. Susan
  15. Families are like that. Sometimes they understand other times you wonder where in this world they came from! I have a SIL that for years we have been making adjustments for, deseriably, she has MS and sometime just is tired and weak. Therefore not up to the large gathering. In fact, prior to Dx I often had her brother and father to our house for family gatherings. Just to relieve pressure on her to "do" the holidays. Now, I recently was Dx. My BIL was in town (not her husband, the other brother) and we just were not up to doing the gathering. Second brother and SIL (with MS) said they would host gathering and do a cookout. We attended. They didn't even set a plate at the table for me since I couldn't eat anything on the menu (after spending an hour on the phone discussing what I was allowed to eat and not). Please note in the past I went above and beyond to make her family traditions for meals, despite a strong dislike to some of the foods (brussel sprouts and oyster dressing -- no two seperate dishes, not together that would be too gross!). Only cantalope was put out and when I took two slices of that I was informed that they had been hoping to have leftovers for breakfast. So, families are tough! I have been in contact with one sister and let her know about my Dx, I've left messages with 2 brothers that I had medical info to share. They have not contacted me. I was Dx as of 6/11 Susan