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msutherlin

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About msutherlin

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  1. I am also on my way to San Diego in about a week. We are staying in Del Mar. So any other suggestions for the Del Mar area would be great. We will be spending quite a bit of time at the fair and I am at a loss as to how to be at the fair and what to eat. I understand that Jimbo's will can make gluten free sandwiches. So I thought of going there to get some food to take with me to the fair. But I would love suggestions for where to eat in the evenings. My favorite place is the Japanese Cafe. I am hoping they can make me some gluten free sushi. I have soy sauce I am taking with me in packets.
  2. Hi Jerry, I wondered where you had been and how you were. This is the circumstances in which I now find myself. After having a colonoscopy, an upper endoscopy with biopsy and the most horrible test, enteroclysis, I have been diagnosed by my gastro as being gluten intolerant. I am ok with this. This means I don't have damage if I have an accident. But, do I want to knowingly eat gluten? I have felt so horrible for so long and am now enjoying feeling normal. There is no way I want to endanger that. The only good thing is, I don't feel I have to be so worried when I go out to eat. I know to make good choices and do the best I can, but if I do get glutened, it will not cause damage but I might feel bad for just a bit. But I will by no means go out and eat something on purpose. It has been so nice these last couple weeks to start to feel normal again and each day gets better and easier. Gluten free is how I'm going to stay. I just don't like being sick or worrying that I might have to start buying depends at age 47.
  3. I really understand your fear and have been there. I had to have the endoscopy done when I was pregant for my first child and they didn't give my anything because I was pregnant! So if I can do that with not even a tylenol, you can do it with drugs. Now, having said that I had to have another endoscopy and colonoscopy just two weeks ago to test for celiac and I was very nervous even knowing that I got through it before. The worst part really is the prep. If you get through that you are home free. I went in for my test. Got on my gown. They got my iv in and got me set up in position in the bed. The next thing I knew they started the drugs and the last thing I said was I'm feeling really relaxed. Next after that the nurse was telling me it was time to get dressed. I swear it was the most relaxed I've ever been. I remember nothing from the time I was put out until they told me to get dressed. I was so groggy getting dressed that I don't remember all of it. My husband took me out to eat and I can only remember part of it. I came home and took the greatest nap! You will do fine. I am having a small bowel xray the same day as you are having your testing done next week. I am a little freaked out about it as it is a different test and I think I will have to be more awake. But I will say a little prayer for you and please think of me also. You do great!
  4. I wish you luck. I had my testing done last week. I had the upper endoscopy with biospy and a colonoscopy on the same day. If they let you get the testing done, the worst part is the prep. Make sure you drink lots of gatoraide. That really helps. After my prep, I slowed down on drinking enough fluid and was a tiny bit dehydrated when I went in for the test. But the test is a breeze. So easy. They gave me drugs and I don't ever remember feeling that relaxed. I know I got dressed and my husband took me out to eat but I only remember parts of it! But I felt really good! I am now waiting on my results. They said it would take about two weeks. I don't know why but I think it will come out negative. I am already eating gluten free though. Like you, when I was eating gluten free for about two weeks I felt so much better. So I hope the same thing happens again. It's too early to tell yet and I think my system has had a hard time from the big clean out and then readjusting to food. The diet is not so bad. The worst will be missing going out to eat. Tonight I made a really yummy gluten free almond chicken and the family loved it. So I think they will adjust too. Good luck!
  5. I went back on gluten about a week before Christmas and I swear I feel worse than I did before. The symptoms started back right away. It has been a very long couple of weeks and I just keep counting the days until my test and gluten freedom. My husband and I went out to eat last week with friends to an italian place. You would have thought I would have savored eating my favorite pasta which I did, but the entire meal I was in pain. Bloated, gassy, you name it. I took 4 gas-x and it did nothing! I was so uncomfortable I had to sit up straight and lean back in my seat all the while pretending I felt good. Why didn't I just stay home or leave early? This has been the story of my life. If I did that everytime I felt bad I wouldn't have a life. It's something that had become normal to me. Funny thing is, the last time I was at that restuarant was 2 years ago, and I felt exactly the same, pain and miserable. I remember getting home on that night two years ago and going for the peppermint tea. As I sat there at dinner last weekend while everyone was talking, I was thinking how many dinners out with friends I had sat in this same pain and misery. Or how many times I went for the day with a friend shopping and after having lunch running to find the bathrooms. How I started on the peptp, milanta, gas-x at such a young age and it just became part of my life. I've lost a lot of years not feeling good and not enjoying things as I should. Going off the gluten and back on really confirmed that for me. The other thing I thought of last night after posting is also the importance of making sure they're aren't any other things wrong with you. I know my gastro is also doing a colonoscopy the same day as the endoscopy/biopsy. He wants to rule out crohn's and all the other things that could have the same symptoms. I think it's important to know that as well. So, hopefully we will both come out on the other side of this and be able to lead more healthy, comfortable lives!
  6. Jerry, I personally think you have made the right desision to get biopsied. You have children and you have siblings. You might be the first in your family to find out about this. You are the one who has the opportunity to expose this, if you have celiac. Otherwise, will your siblings listen? And you really, really need to know if you have it because if you do, your children must be tested. You would not want to just go on the diet not knowing letting them go about their lives letting them potentially get an illness that could be prevented had you known for sure. If you come out negative, that could mean two things, one, that they missed it and you do have it and two, that you do not have it and indeed are gluten-intolerant. Either way it sounds like you need to stop the gluten. If if came out negative, I would keep an eye on those kids and if they ever show signs of it, I would get them in for testing. This can cause so many health problems untreated and prevent so many when following the diet. I am speaking from the same place you are at. I am currently eating a gluten filled diet. I am loading up in preparation for my biopsy that is scheduled on the 25th of this month. I had part of my blood work come back positive and part of it come back negative. My doctor told me to stop the gluten and I did for two weeks. But as I read and learned information and got in to see a gastrointerologist I realized I really needed a biopsy. I need to know for sure because I too have children. I need to know for them. This is not about me. I also have two brothers. One has a child that already has had two diseases that are immune related at only age 16. If mine comes back negative I have already made the decision to go gluten free. I felt so much better the two weeks I was off it. My heart doctor told me that should be proof enough and that they can miss it in the biopsy, but also agreed that I should have it done. He told me as firmly as he could to get off gluten as soon as my testing was finished. It is very difficult, but like others have said you just need to find subsitutes for your favorite foods. Go to your local health food store and just buy a bunch of stuff and try it. And think positive. I know it sounds hokie, but you HAVE to. I love to eat at our local Culver's. So I can't have a butter burger. I have to get the salad. But I can eat the chocolate custard with peanut butter sauce and cashews. It's a trade off like all of life. I think we will both mourn the foods we love. But I for one have felt sick for so long I am gladly going to give it up with or without a positive diagnosis. At least I will have the peace of mind that I tried to get one. No wondering. And if you really want chilli, I think both Wendy's and Steak and Shake have it on their gluten free menu's.
  7. I saw the GI doc yesterday and they are going to schedule a colonoscopy and an upper endoscopy with biopsy to see if I have celiac. So we shall see. Just the waiting and eating lots of bread now. Thank you for the information!
  8. Not sure where to start. I have had digestive problems for so long I don't remember what it was like being normal. I am in my mid 40's now. At age 23 I had thyroid cancer. I am on synthoid and always high doses. For years I blamed my "diarrhea" problems on to my synthoid. I was so thin my whole life even before the thyroid problems. The last 10 years or so I have finally put on some weight to where I look the rest of America. The last several years I was also blaming my digestive problems on a large fibroid tumor that was removed a year ago. After it's removal I had hopes that things down there would get better but they did not. This fall they got even worse. At first I thought I had a bug. I would eat and then have to run to the bathroom. I was getting so bad I didn't want to leave the house. If we did eat out, I knew I had about 30 minutes to get home before it would hit. I was starting to wonder if I was going to have to wear some Depends! This went on for a couple months. One morning I woke up in so much pain. It was worse that child birth. I ended up at the emergency room. They did a ct scan on me, told me they could see nothing and released me. But when my doctor got the ct report, it said I had ileous and air filled small bowel loops. She said that could indicate a blockage. An appointment was made with a GI doc but of course I couldn't get in right away so have been waiting for weeks. That appointment is tomorrow. In the meantime my doc had given me a blood test for Iga and Igg. My Iga was negative but my Igg was positive so she felt a strong possiblity of celiac and told me to start on a gluten free diet. I started on the diet for 3 days but after reading on several sites I called her back and asked for more blood test and started back eating the gluten again. Four days after eating the gluten she did an Ema and Ttg. The Ema came back negative so the lab didn't even run the Ttg. They said with the Ema being negative my insurance might not even pay fo the ttg. Right after that blood test was taken I started eating gluten free and did so for two weeks until I got the results back. I am confused as to why they wouldn't run the ttg because I read the Ema has a high chance of false negatives. So I will be real interested in what this GI doc thinks tomorrow. Will he think there is a good enough chance I have this to even want to do a biopsy? Will he even know much about celiac? What I do know is the two weeks off of gluten I hardly had any gas or bloating. I started eating it again yesterday in case he wants to do a biopsy. But I don't know if the two weeks free I did will mess things up or if that's not enough time to really heal things. Last night after eating it all day I felt sick at my stomach all night. Tonight I am bloating again. I am so sick of this. So that is pretty much my story. Just waiting to find out what the heck is wrong with me.
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