Celiac.com Sponsor (A1):

Join eNewsletter

Celiac.com Sponsor (A1-m):

Join eNewsletter


Advanced Members
  • Content Count

  • Joined

  • Last visited

About redsidekick

  • Rank
    Star Contributor

Profile Information

  • Gender

  1. Went to Captain George's Buffet last night & agree with SMRI.  Great experience.  The manager walked me through the line.  He is very knowledgable and will even have kitchen cook an alternative to what is in the buffet. For example, the pork has a sauce that has gluten, but he will have kitchen cook some up fresh without the sauce for you.  He even brought out Udi dinner rolls for me and showed me the packaging so I could be assured they were Udis.  He even stopped by table a few times to make sure I was doing well.  I gourged on the crab legs.  I had no issues from eating there and would highly recommend it if you are in Myrtle Beach.

  2. I was dxd with Celiac about 3 years ago and after what was a long healing process, I felt great, with minor slip ups of gluten here and there (never intentionally). The Saturday before last, I went out to a diner with my friend and ordered a salad with chicken. I awoke in the middle of the night to stomach rumbling and D. The next few days I was bloated whenever I ate, then came gas pains throughout my abdomen, difficulties staying asleep at night, stomach rumblings, and BM's that were one time too hard to pass & the next too easy (I wouldnt call it all out C or D).

    I decided I was going to call my doctor if things didnt change after the weekend, but as the weekend came, the bloating ended, sleeping got better, stomach rumbling mellowed, the gas pains got less intense and less frequent, but still kind of alternate when it comes to BM's. Since things looked like they were settling down I decided not to call.

    I never had any experience like this for over a day or two. I have read that for some people, several weeks of issues from gluten is not out of the question. So is this the typical course of events for a glutening episode or out of the ordinary.

    Thanks as always for any responses.

  3. I am a teacher, and wasn't exactly "there" last year when I was going through the intense symptoms, fear of what was wrong, and the dx'd learning curve. I even quit my coaching position b/c I couldnt handle the stress and the recovery. Thankfully my principal protected me from parents who were wondering what was up.

    Yes, it is difficult to find out what you can eat. I always tell people the hardest part is eating on the fly. It took my a half hour once on the road to find a place that I could have a feeling of assurance that I could have a gluten free meal (finally stopped at a Boston Market and ordered things I remembered were gluten-free). These forums were a God send, I still search for food and restaurant ideas here. Although I still get frustrated and upset (like this week when I walked into a buffet that was set up by the parents for the teachers and I didnt want to bother anyone by asking "what's in that" so I walked out), it has gotten A LOT better. It definitely is a learning curve.

    If I am on the road and just need to fill my belly, I stop at a convenience store and pick up some potato chips or a chocolate bar (not the healthiest, but holds me over until I get home). Another tip is stock up and foods that you can eat and bring them to work with you. I have some Progresso soups in a cabinet in my classroom, so if I ever get hungry or I forget or don't have time to get lunch ready at home, I'll have something at school. I also bring in bananas every week to snack on.

    Things do get better, I hope that it gets better for you quickly.

  4. I also thought that the orignial bbq sauce for the ribs were ok. Really hope that hasnt changed.

    The Chillis near me has always been very accomadating to me when I come in. In fact the last time I came in w/my family they sent a waitress from another section to serve us because she also has celiac and she was very helpful (She told us the chips and salsa were OK, I did not know that.

  5. A bunch of my H.S. friends want to get together. They know about my celiac and would like to know if rodizio (brazilian steakhouse) would be good for me. I used to LOVE rodizios before dxd w/celiac and know of some issues (sometime teriyaki chicken is one of the meats served).

    Is there anyone who has had any experiences with eating out at a Rodizio? What tips or questions should I ask of the resturant before I go? Thanks.

  6. One of the best things about this site is that when you are in your "part of the world" what you are dealing with is so foreign and different than what you have experienced (or anyone else) it is helpful to discover that your not alone, and people here are willing to help. The weight loss and the tests you had/are having are all typical for those dxd with celiac.

    If you have a question about a food or drink product, type the brand name of it in a search. You will be amazed that most items will be already be commented on. This site helped me more than meeting with a dietitian of what I could or could not have.

    I was overwhelmed for the first several months. Still get frustrated if I'm on the road and get hungry, but if I'm home I always have something to eat.

    Hoping the best for you.

  7. It was about a year ago I was dxd with celiac. Over the past year I found great encouragement in reading posts that described symptoms and pains. I thank everyone who was willing to post their travails. It would calm me down when I realized the things I was experiencing was normal for some celiacs (I was not one of the ones who felt better than they ever felt within weeks of going gluten-free).

    I went through a lot of pain for the first months after going gluten-free. If this is the same for you, the best thing to do is look back month to month, not day to day. When I did this my frustrations of how I felt would diminish because although I was hurting, it wasn't as bad as the month before. I have to admit part of posting this is therapeutic for me as I see how far I have come in the past year.

    So, here is my history.

    Summer 06- Stabbing pains in intestines when I ate. Lost about 10 months in one month. Dr. thought is was lactose intolerance, went off milk products, recovered quickly.

    07-09- Bloating almost any night after I ate pizza for dinner.

    Dec. 08- One night I ate pizza and had ice cream for dinner. That night woke up with TREMENDOUS cramps (felt like a blockage and should have went to hospital). Rest of the month my intestines felt "sore" anytime I ate.

    Jan 09- Woke up one morning with bloating so bad I was nauseous. Intestine and abdominal pain everytime I ate. Was eating BRAT diet b/c of D I was having (increasing my bread intake, not good). Losing weight rapidly (altogether from Dec-Feb, 20 lbs). Went to ER due to pains and rapid heart beat (probably from anxiety b/c I thought I was dying). Everything I ate was going undigested out the other side. Almost fainted at work I was so weak.

    Missed about 10 days of work in the month of Jan due to GI problems (this is from someone who averages 2 sick days a year). Difficulty sleeping.

    At this point I was scared for my life. Went to doctor who thought it was IBS (probably to calm me down), but did blood test for Celiac and referred me to GI doctor.

    Blood test came back slightly positive (forget test but 11 was my number with 10 being positive) for Celiac. GI doctor thought IBS but did endoscopy, looked OK, but biopsy came back mildly blunted villi.

    Feb 09- Another blood test with the same result, officialy dxd with Celiac. After going gluten-free bowel movements began to normalize quickly, but pains remained in intestines and back. Only eating Rice Chex as I learn the ropes of what to eat.

    Mar 09- Upper GI series reveals inflammation in terminal ileum, beginning to gain weight again. Still experiencing pain, still frustrated over what I can eat. A lot of anxiety about condition, difficulty sleeping.

    Apr 09- Colonscopy with entrance into terminal ileum shows it is normal (yea!, 1st normal test in months!) Still in pain daily.

    May 09- Pain is finally subsiding, more good days than bad. Better handle on what I could eat.

    Aug 09- Best month in how I feel on a daily basis. Anxiety is subsiding, sleeping better.

    Sept 09- Feb 10- Maybe once every 6-8 weeks I have pain or bloating episodes that last perhaps a week (glutening?) I have been religious about what I put in my mouth. Sleeping through the night, feeling like I did before all the issues began almost every day.

    Anyway, hope that helps someone.

  8. Many restaurants are accommodating. They may prepare you something separate or let you go through the buffet line first. I would call them ahead of time and see what they know about gluten and what they can do.

    If you want to go, you should definitely go! You could always eat beforehand if you don't trust the restaurant and still enjoy the social part. As far as paying if you don't eat, talk to a co-worker or whoever's in charge and let them know your situation.

    Thanks for your reply. I appreciate it.

  9. I was dxd with Celiac a year ago. Next month will be a retirement dinner for one of my bosses. It will be buffet style. I would really like to go but I am concerned about eating there. What are others' experiences with this? How receptive are these banquet halls to celiac requests in general? Do I go and not eat (and if I do that, should I still pay for the meal?) Should I avoid it altogether?

    Any opinions would be helpful. Thanks.

  10. I remember going to visit a friend for brunch within the the first month of my d'xd. I told my wife how embarrassed I was that the meal had to made special for me. I never wanted to be an inconvenience. Our friend laid out the spread, and I apologized for having to be so particular about food, she stopped me and said I having nothing to apologize for and that she thought everyone would be understanding about my situation.

    My wife, since she usually makes the dinner dates, will tell the hostess about my situation. She defines Celiac and explains CC and other issues. I always ask "How did they take it?" & all have been understanding, except for one person who invited us to a picnic. This time the wife emailed her our RSVP and also for info on what they would be serving, making it clear it was about my Celiac. We never heard a response back, so I went to the picnic and nibbled on fruit. That was the only "bad" experience I have had, everybody else has been great, understanding, and caring.

    My view is tell them its b/c of Celiac. It also allows you to educate people on what it is. It usually becomes a dinner topic. I figure the more people who know about it...the easier it will be in the future to eat out.

  11. Sadly, it is different for each person. I know I used to get depressed reading how quickly some people felt better. That was not the case for me. Maybe it was because Im older (42), I dont know. I can tell you things improved each month, when I looked at improvement like that, instead of daily, I could see the difference even though I still felt horrible. It has now been nine months since going gluten free, around the seventh things got noticeably better, and now nine months in I still have some bad feelings, but nothing like it was in March. Hope that helps to encourage you.

  12. Since going gluten free I have diligent about going out to eat, usually only eating in places that have a designated gluten free menu. The one meal that has been difficult has been breakfast. It used to be my favorite meal of the day and I would often get up early on my days off an enjoy a large breakfast at a local breakfast shop. I hesitate to do that now.

    Any suggestions on chain restaurants with gluten-free breakfast menus or advice about ordering breakfast at diners and/or other restaurants. Could I get something other than a fruit cup and coffee?

  13. I don't have thoughts on why, but agree with you. No gurgling before I went gluten free, but it started about a month after I went gluten free and now after 7 months has started to subside considerably. Even when I didn't have any cc issue, my stomach would rumble.

    And to the post title, yes, I had ups and downs, for every 2 steps forward feeling better, there was one step back. It got really frustrating when you thought you turned a corner, and then bam, stomach pain again, or muscle twitching, bloating, etc. I had to remind myself not to look back over the past week, but what was it like a month, two months earlier. When I saw the big picture, I saw definite improvement, the problems were not as bad as those that first sent me to the doctor.

  14. Yes, I can relate. I had really bad symptoms in Dec-Jan of this year. Was dx in February, and went gluten free around midway through Feb. It seemed that the symptoms that I had in in Dec-Jan (food passing through whole in loose bm's, bloating, pain in the intestines) quickly subsided but new ones (stomach growling, stomach & back pains, muscle twitching, difficulty sleeping probably due to anxiety) came about.

    I can tell you six months later, I still get the stomach growling from time to time ( I think it may be a dairy issue), stomach pains less, and the twitching is a memory. I was very frustrated those first few months (Feb-April). Things started to noticeably turn around in May. Since June I think I had a few bad days each month, but nothing like the daily issues I had from Feb-April. I would say I am about 80% back to normal.

    I know the frustration of reading of people feeling better quickly on the diet when that was not the experience I had, or it seems like you are having. I pray that things will get better for you.

  15. Just wanted to give a shout-out to the Pizzeria Uno on Route 1 in Woodbridge, NJ. My family ate there yesterday. I asked my waiter for the gluten free menu and when he came back with it he asked if I had a bad wheat allergy, I said yes, I have celiac disease.

    He then went on to tell me that I can be assured that there would be no cross-contamination (first time in the 6 months I have been gluten-free that the waiter brought up the CC issue)and that the manager would pay personal attention to the cooking of my meal.

    The manager came over on several occasions to make sure all was well with my food.

    So GREAT JOB! Pizzeria Uno, Woodbridge, NJ

  16. I don't know what is wrong with you, but I can tell you I share a similar experience. I was very sick in January, was diagnosed in mid-February, and when gluten free immediately. Symptoms that initially sent me to the doctor cleared up (weight loss, everything I ate going right through me), but new symptoms kept popping up (stomach gurgling, pain in my stomach after eating). I've had an endoscopy, colonoscopy, and upper GI series.

    At this point I still get the last two things but less frequently. When they occur I have to keep reminding myself how bad things were several months earlier. I think it must be part of the healing process since things are getting progressively better.

    I hope things are getting better for you over time. And thanks for writing your experience. So often I read, went on diet, things got better. It was encouraging to me to see I was not alone. So thanks again, I hope we can get both get through it.

  17. I was diagnosed and have been gluten free since mid Feb '09. Now starting my 5 month. I look back and see A LOT of improvement then the issues that first sent my to the doc (very sudden and severe), but sometimes I get days where I still feel crampy or get stomach and intestinal rumbles. Even on days I have been extremely careful about what I eat so I do not think it is a gluten or CC issue. Does anyone else experience this as they are recovering (Im 42).

    I have to keep on reminding myself Im still better than I was four months, two months, even 1 month ago.

  18. At the beginning of the year I was hit with bad bloating and pain in my bowels whenever I ate bread. I lost about 20 pounds in two months. My doc thought it was IBS, but tested for celiac. One of the tests was mildly elevated. Sent to GI, after endoscopy,villi were mildly blunted. He tested my blood again, almost same scores as the first time a month earlier, so he diagnosed my with celiac. Have gone gluten free for 3 months now and I have progressively gotten better (gained about 10 lbs. back, no more bloating, but not feeling 100% yet, but definite improvement, I'm not tired all day).

    Most posts I've read seem people had mild symptoms for years, but for me it went from I was feeling well one day to I thought I was dying. Has anyone else had a similar rapid onset of symptoms?