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  1. I have been gluten free for almost 2 years. I have had the occaisional accident. I think everyone reacts differently. I find I don't feel much right away. Maybe a few hours later I will feel really tired and foggy, maybe have an upset stomache, and then it goes away within an hour. But prolonged exposure (I ate gluten 3 days in a row to see what would happen) causes me to be full out symptomatic. I ate it the first day, nothing. Had it the second, felt kinda gross. By the third day, I was heading into migraine city within an hour of consumption. For me, I wouldn't get fully sick after an accidental bite or two. I may not feel so hot but I will be functional. Everyone is different though, My sis in law is down for the count, in bed after a bite or two. 


  2. I have had all the tests for celiac done and they have been negative, except for my biopsy which showed some "minor features consistent with celiac." Many times I eat things like pizza and white bread just fine and have no problems. I'm wondering if just cutting back on gluten might help my symptoms, or if I really have to go 100% gluten free. If I am really gluten intolerant, why am I able to handle things like pizza, white bread, and other products with gluten in them with no problems? Is this a sign that gluten is not my problem? Thank you.

    I have been gluten free for almost 2 years. A while ago, I decided to have a regular gluten filled muffin. I was fine. I was fine all night. I was fine the next day. Sweet. So 2 days later, I had another muffin. Again i was fine. 2 days later, I had another one. I WAS NOT FINE. OMG WAS I SICK!  I had been hoping that somehow I was cured, or that I had grown out of having Celiac Disease. but that third time eating gluten, I was sick. My symptoms don't last long. Many people get violently ill. I don't, but I know my body and I knew I wasn't well. Luckily, I am able to take some tylonal, a hot shower and sleep it off. But even that minor thing is hard for me and my family when I have stuff to do. I can't always be going to bed because I wanted to eat gluten. So I just stay away. 

    My biopsy came back negative, so I don't know if I actually have celiac disease or intolerance but my Dr was willing to make the celiac disease diagnosis, so I treat myself like I have it. 


  3. I'm wondering how everyone else deals emotionally with setbacks you encounter during your recovery?

     

    I've been doing so well for over a month...yay!  I was diagnosed in January, had a rough beginning.  But for a little over a month was doing great.  I would talk about how good I was feeling, how I hadn't even realized how bad it had been until I saw all of the improvements,  I felt like I really got the label reading, cooking, etc. down.  I was exercising again.

     

    And then last Wednesday I started feeling bad again.  By Thursday I was doing the run to the bathroom up to 15 times a day...exhausted...foggy...headache. All of the usual stuff.  I analyzed everything that I had eaten and realized that I had added 2 things into my eating that I hadn't had....almond flour and Ghiradelli chocolate chips.  I bought the chips because a recipe called for bittersweet and I didn't see any from Nestle.  Looking into it I see that they are made in a shared facility.  So, I guess I got too confident, didn't check something out and am suffering for it.  :(

     

    I am having a really difficult time with this emotionally.  I feel mad and sad and all of that stuff.  The setbacks in this journey of celiac disease are so harsh and devastating.  They take such a toll.

     

    How do you deal with it?  Get through it?

     

    Thanks!

     

     

     

    I get mad at myself for having celiac disease. It's not my fault, but I just get so mad that I have to be so difficult! So I totally get the emotional aspect you are feeling. I have been Gluten Free for almost 2 years, with a handful of incidents where I either wasnt careful, or threw caution to the wind and ate something Gluten filled, stupid, stupid.  Even after almost 2 years, this morning I held a donut in my hand and was actually bargaining with myself. I was saying, I'm not working until 43o tonight. I can eat this and then take a nap and be fine! why not?

    In the end, I didn't do it. Sure, my immediate reaction to eating gluten doesn't last long, a couple hours at most and I can sleep it off and feel fine when I wake up, but what damage am I causing internally? Sure, I was diagnosed with celiac disease formally, but even my Dr thinks it may be intolerance and not so much full blown celiac disease, but it could or could not really be celiac disease. All my tests were negative, all blood work, biopsy, etc. But my symptoms disappeared when I stopped eating Gluten so she just went ahead and made the diagnosis. 

    Do I really want to bargain with myself though? No, its not worth it. 

    The point Im trying to make is that I don't think the emotional aspect ever really goes away. Im not as emotional as I was, but I do have my days. 

    What I do to get over it is find something delicious to eat or keep my mind occupied. I have noticed an increasing intolerance to dairy products. I have a lot of the same symptoms as I did when I was eating gluten, but I get them right after eating ice cream, or too much cheese/cream. I have problems when I eat too much corn products and even too much sugar. 

    So what you ate may not have been the chocolate chips, you could be developing an entirely new set of food problems. 


  4. I know some people experience major bloating after eating foods with gluten in them...but I have been bloated almost non stop, even after cutting gluten out of my diet. 

     

    My stomach is huge, I have no idea why the bloating won't go down. I am pretty careful, even going so far as to eliminate hand sanitizers and shampoos with gluten in them. I read that digestive supplements and probiotics as well as drinking more water can help the bloat go down. Does anyone else have any other tips? For awhile I couldn't drink much water...it was making me sick..but now I am gradually able to drink more water again, thankfully. Can anyone recommend good probiotics/digestive enzymes that actually work for bloating? It seems like there's always something wrong. I know my stomach is far too big for my size...it looks like I'm pregnant.. please help? :(

     

    I also have gall stones, not sure if that matters...

     

    I am a little under a year and a half gluten free now. Only recently have I discovered horrible bloating, gas and pain after eating large amounts of dairy. I seem to be ok with a yogurt here and there, a little cheese and half and half in my coffee. But if I eat a bowl of ice cream, or gluten-free Mac and Cheese, gluten-free pizza....I get very bloated. 

    last night, I had ice cream and I was so bloated, gassy and sick to my stomach that I just went right to bed. Every so often I try to eat it, with the same results. I guess I should just give up. I was actually ok going Gluten Free, it was very non-eventful and I don't have cravings. But cutting Dairy hurts. 


  5. I read about how some people feel nauseous for days from the tinniest cross-contamination so I wonder how some people who been off gluten for a while can manage a gluten challenge for a few days, wouldn't eating actual pure gluten make you feel very ill instantly and thus preventing you eating any other bite of gluten for days?

    Or maybe it's because I read stories of too many sensitive people which seem to be the norm on this forum?

     

    My dr suggested I "test" it out now that it has been a year since my dx. I did this weekend and immediately regretted it. One bite was all that did it and is all I need to know that I am most def Celiac. I was dx'd Celiac even though all my tests and biopsy came back negative. I should have just smiled and nodded and not eaten what I did. My symptoms, thankfully, usually just last a few hours and then leave me a little drained. Some people are sick for days :(


  6. Yeah, I've said this before the but the mental issues that come with glutening are the worst for me.  They last for weeks afterward.  I get so apathetic and moody and depressed.  Hang in there.  It will get better.

    same for me! My stomach only bothers me if I am glutened more than one day, in a row. Otherwise, it is all head stuff. I know within 10-15 mins if I have ingested gluten because I get sort of a woosy feeling and then a sort of nagging headache, then finally I start stuttering and feel all out of it. 


  7. Sometimes, I get too comfortable and am not as vigilant as I should be. A few days ago, the restaurant I work at got a different type of potato chips and I grabbed a bag, just totally not thinking anything. an hour later, I had a screaming headache and when I got home, I took a nap. Later that night at my daughter's cheer practice, I whipped out a second bag that I brought home and started eating. Bored, I read the bag. Where it says Allergen information, it only started soy..nothing about wheat or gluten like a lot of products will say. so I read the actual ingredients, and there it was...Malt (Barley extract). I spit the chips out and threw them away. 

    I was sick all that night and all the next day and night. 

     

    Which brings me to today. I am still a little groggy feeling but much, much better. Almost a year gluten-free and I am still making rookie mistakes. I have to stop being too comfortable with what I "think" to be gluten-free. 

     

    Just a reminder to all the still newly diagnosed like myself, always be vigilant!


  8. I was diagnosed in Oct but I was in some denial for a while. In fact, several months ago, I even posted here how once in a while I would still consume gluten, in the hopes that I would have "gotten over" it, or maybe thinking the dr was wrong and I would be fine. 

     

    I am happy to say that kind of thinking is gone and I have been 100% gluten free (aside from accidents) for some time now. 

     

    I am diligent and I make sure to ask questions where ever I go. I am not worried about hurting people's feelings when I kindly decline to eat food they have made or brought to parties. I don't worry about participating in eating a group lunch at work. 

     

    My friends, family and coworkers understand when and why I decline. Sure, some people still don't get it, some people even still think it is in my head, or that I am over reacting, but I really don't care. They can think what they want, they are not the ones who get sick. 

     

    In the beginning, yes, I got sick when I ate gluten but I was so used to it before I was diagnosed that I did it any way. I used to brag about how I wasn't THAT sensitive that a little CC would bother me. It is so different now. I can tell within 30 mins if I had some fries that was cooked in the same oil as say, chicken fingers. Once, I buttered a gluten-free bagel with the butter in the fridge that I CLEARLY labeled as MOM's BUTTER..DO NOT USE! and I was sick an hour later. I found out my husband had used that butter for toast, re-dipping his knife. He really didn't think it would affect me. 

     

    I ate gluten-free shrimp scampi at a restaurant and was VERY VERY sick the next day. I called and found out that they cook the gluten-free pasta in the same water as regular pasta! Some places and people simply do not know. 

     

    I just came off of a week long migraine after eating at a cookout at my sister's house. It was the worst migraine ever. Even when I am careful, sometimes things happen but I am realizing that this is for the rest of my life and I accept it. 


  9.  Before I was diagnosed, I went to the dr complaining that I felt like I wasn't living. I felt like I was standing outside my body, watching myself perform actions and sometimes I couldn't recall doing them. I havent had that feeling at all since being gluten-free, I have been gluten-free since October. 


  10. I have been there. 

    Recently, I got take out and the place sounded so busy when I called to order, I didn't ask questions, I just got what I wanted thinking it should be safe. I knew within 15 mins of eating that there was something wrong. It had to be the seasonings. I hadn't been that sick in a really long time and it was 3 full days before I felt better. 

     

    Before that, I had willingly eaten gluten and I felt bad but not like this. Now I know that there is just no turning back. I need to be vigilant because it is clear that I am very sensitive. I have reactions to food cooked in shared deep fryers, I have reactions when gluteny foods touch my food. 

     

    I never thought I would be someone who was sensitive, but even my husband, who wasn't supportive at first, has become better at telling waitstaff about my gluten issues than I am. I have learned through making bad choices, but I am done with that because I cant afford to miss work, or kids activities because I am in bed, sick, due to me being lazy. 


  11. We are planning to take our daughter to Disney next month. I am new to the gluten free diet, and I'm wondering how difficult it will be to travel to a place like Disney. Any tips or suggestions?

    I cannot stress enough...DISNEY IS THE BEST BEST BEST PLACE TO GO WHILE gluten-free!!!!

     

    Every single restaurant I went to, the chef personal;y came to talk to me and personally delivered my food! They walked me through the buffets too! For quick service, the manager will come over and tell you what you can have...they are great. But be warned, for quick service (counter service) your food will take a little longer, but its worth it!!

    The food court Chefs at the place I stayed were great too! They made me gluten-free chicken fingers, waffles, pizza, etc! Just always always always ask to talk to the chef. ALWAYS!


  12. I know I am late here, but most of the times my symptoms are the same, usually head stuff. Dizziness, nausea with no vomiting, Diarrhea, migraines, but sometimes it IS vomiting. I never used to get symptoms bad, but the longer I am gluten-free, the worse it is. I got glutened bad from Texas Roadhouse because I didn't ask them anything. I just ordered a steak and backed potato, assuming it was safe. Within 2 hours, I was vomiting and bloated and my stomach was in PAIN. only thing to do was go to sleep. It was awful. Migraine and vomiting for 2 days :( 


  13. I just found out yesterday that I have a dairy allergy and my allergist said with recent blood work that it looks like I also have celiac disease. I am just curious how long it has taken you with dual (or more) allergies and sensitivities to see improvement after you changed your diet?

    It took me about a week. I was having daily migraines and gastro distress. Within a few days it slowed down, by a week I was able to go shopping without having to make a run (literally) to the bathroom. Then again, they caught mine fairly early. there are some people who have had severe damage before they were diagnosed and it may have taken them longer to feel better.


  14. I can't offer advice really, I think I haven't worried too heavily about CC yet. Maybe I am waiting to see if I get sick to see how dilligent I need to be? I don't know. We share a toaster oven. I usually just wipe the rack off with a wet paper towel and then dry it before putting my bread or whatever on it, or I use a tray that only I use if I want to bake something in it. I do have my own colander for my pasta and veggies or whatever. I have my own cutting board. I have a shelf in a cabinet that is only for my things, up at the top of the cabinet so I am sure my kids wouldn't accidentally put anything up there. We don't have a dishwasher and I don't let my kids wash the dishes because they are still young and when they try, I end up having to re-wash everything anyway. I always have tons of paper towels on hand, and clean kitchen towels to wipe down counters, and wipe off pots and pans.

    My sis in law has celiac disease too and she is really really dilligent, to the point she won't even make her kids a sandwich on regular bread or ever touch gluten. I will. I will make the kids pilsbury dinner rolls, I will bread their chicken with breadcrumbs, I will make them toast, sandwiches, etc. I simply wash my hands well afterwards. No big deal. There is only ONE thing I will not do...and that is touch flour. I don't know what it is. I will bake cakes with boxed cake mix..but I won't touch all purpose flour. It scares me for some reason, I don't even like having it in the house lol. But dh likes it for when he batters chicken wings he makes in his deep fryer. That is kept in a cabinet where there is nothing I eat in there at all, and I refuse to make him anything with it. But he knows that.


  15. The more I read and learn about the benefits of anyone keeping clear of gluten, the more sure I am that as someone with Celiac Disease, I need to keep far from it. I work with children with Autism and all the kids in my class are gluten and dairy free. It just screams to me that something is WRONG with our food, when it benefits us, people with autism, diabetics and so on, to stay clear of it.


  16. My Dr diagnosed me with "Latent Celiac" and I had thought it was something she just made up on the spot to pacify me because I wasn't letting it go. Basically, my blood work came back negative because of my deficient IGA, and my biopsy showed nothing that proved Celiac, but there was inflammation that she could also connect to the ulcers I had, but the ulcers could have been a symptom of Celiac Disease. We had already done the whole challenge thing and I was found to feel better off Gluten...so she said that I did have Celiac Disease, but we caught it early on, before much damage had been done, that it was Latent. And the only treatment was a gluten free diet, which she said I needed to start immediately before damage was done, and that I was lucky.

    So I don't care what any one says...treat it. ASAP. I have been flip floppy on these boards, I know. I have been in denial, I know. But I understand now. I haven't intentionally had gluten in a while. And I have never felt so good.


  17. Yes, wine makes me very. very sick. Almost sicker than a gluten reaction, and it is not related to my Celiac DIsease. I have ALWAYS had issues with wine...and actually all alcohol altogether. I just cannot tolerate it. I get intolerable pain in my back (kidneys). feels like someone is giving me a huge bear hug, and then I get extremely nauseated, and dizzy. ANd this is usually after only a few sips. So I have avoided all alcohol for years. It is very sad, because I love Margaritas, but it makes me so sick. Cramping pain.


  18. I don't think it's from gluten. I can think of three occasions where I was glutened and all three times I had tummy troubles from it, not a headache. My husband made gluten free brownies using butter he had double dipped in to.make toast. It took the second time of eating them and getting sick to realize the mistake. The third time I got careless when we had hamburgers and hot dogs. I think some crumbs from everyone else's buns got on my plate somehow. I did eat some tastefully simple garlic 3 weeks ago. I realized after the fact that it was tastefully simple. None of their products are safe. It did not cause tummy troubles, but would it cause a headache to last 3 weeks?

    My biggest symptoms of glutening are headaches, which usually turn into full-on migraines. I get dizzy, and I start to stutter and slur my words. Then, I get nauseous, and then have stomach distress usually the next day.


  19. Besides stuttering and word slurring, headaches are the first indicator for me that I ate gluten. Tonight, in fact, I came home from the gym with such a headache, I had to lay down. Then the nausea.My husband kept asking me what did you eat? I said, just because I have a headache doesn't mean it's gluten! I ate good today ( I am still fairly newly diagnosed and have a bad day maybe once a month, hopefully never again though) I had yogurt and a banana, and then some gluten free chicken tenders and sweet potato fries. He was like well, maybe the chicken tenders are not really gluten-free. SO, to indulge him, I looked..well, they were certified gluten-free..but...I looked at the bag of sweet potato fries...Ore Ida..and there in the ingredients COntains; WHEAT! DOH!! I really feel stupid. I am so used to eating regular frozen fries with no problem, I just grabbed the sweet ones thinking they would be fine. I am so mad at my stupidity. I threw them right in the trash,because no one else will eat them, and here I sit achy, and sick :( SO, it could be non gluten related, or there could be traces you have not thought about :(


  20. Thanks, everyone.

    Like I said, more often than not, I am gluten-free. I will go weeks and weeks of being only gluten-free and fine with it, it is just once in a while I think...maybe I am ok, and eat a bagel, or a cookie. And I sit and wait.

    It IS stupid, I know. I should be happy I am not very sick and happy that my reactions are not severe.

    I keep coming back because it helps. Thanks, everyone!


  21. YOU HAVE CELIAC ! and Yes, if you cheat, SORRY but you are not very smart. There, I said it. So, STOP IT!!!

    Don't apologize, I need to hear it. It is a huge thing to wrap my head around, and no it is not a burden. I actually have come to enjoy my UDIs gluten-free bagels and bread, I even found pasta I like. For the most part, my husband is supportive, but once in a while he will say something like, "its the newest thing" and "Drs dont really know what the reason is, so they say gluten" ANd then I hear it from some cooks at work, that is the "fad" and I start to doubt myself, even though I know better.

    Then, my symptoms aren't as severe as others, so I think, maybe I don't have it then..I almost feel guilty for claiming to have celiac disease when others are very very ill, and I am not.

    It's a mind thing that I need to get over. The proof is the proof. I guess I dont want to admit that anything is "wrong" with me.

    my cheats have been fewer and farther between. I just need to nut up and not do it again. I dont consider it cheating, its more like testing. But I never really thought of the damage one time can do.

    That is why I keep coming here even when I think I dont need the support.


  22. I hear what you are saying, and yes I agree with you.

    Here is my thing though,

    I have been sick for years with stomach issues (IBS, as they said) but it wasn't until 2 years ago that I started having bigger issues, brain fog, stuttering, numbness in my hands, dizzy spells, waves of nausea. I have been through so many tests in the last 2 years that have all come back negative for Celiac Disease, but I am IGA deficient, and my symptoms are fairly recent. My GI believes I am in the beginning stages, that I don't have much damage so the Endo didn't show much other than Ulcers, and I was negative for HPylori, and some slight inflammation. It wasn't enough to convince her at first that it was celiac disease.

    She put me on the gluten-free diet any way and it was evident that after just a few weeks, my migraines stopped, the dizziness, nausea and stomach "distress" stopped. I start to stutter within 20 mins of eating gluten. SO she said OK..it MUST be Celiac Disease..and diagnosed me.

    For me..I have a hard time wrapping my head around it. I was raised to trust doctors and I sort of feel like she wasn't totally sold on the idea, but she diagnosed me because I was really pushing it. It has only been since October that I was formally diagnosed and I go through phases of denial.

    For the most part, I eat gluten-free. I even went to Disney World the first week of December and was strictly gluten-free, the chefs were amazing. But what happens is I go so many weeks of feeling awesome that I begin to doubt that I actually have a gluten problem...so then I will eat something. Some times, I feel sick right away, some times, it is days later. SO then I wonder...most people with celiac disease get violently ill, but I dont. I just get really uncomfortable.

    I read on these boards of people who get deathly ill, but I have never felt that way. I don't know if my reactions are different, or if I was diagnosed before that happened to me, or if my reactions will get worse the longer I am gluten-free.

    SO I guess I do cheat, because I am stupid and am still having a hard time wrapping my brain around it. I question whether I really have a problem, and then I have no doubt that there is..

    I work with a kid who has been diagnosed since he was little (21 now) but he still eats gluten and never gets sick, but he is SO TINY.

    So I think, as I have said, it is a psychological thing for me.

    99% of the time I stay gluten-free, but I guess I test myself now and then, waiting for a big reaction...which is stupid, but I dont know how to change my thinking.


  23. I work in a restaurant and have had ppl bring in McDonalds for their kids, it really doesn't bother me. WHat WOULD bother me is if more than 1 person was bringing their own food and only like 1 person was ordering from me.

    What I cannot do is bring people's gluten-free bread to the kitchen for them to make a burger/sandwich. They also will not alter or cook in any way, any outside food. SO I have ppl who bring in their own bread and ask me to have it grilled. Nope. can't do it. We won't even warm outside food, including baby food, in a microwave.

    I would just discreetly bring my own food, without making a big deal about it, and eat it.


  24. I just traveled an hour to the nearest health food store that carried Julian Bakery Bread. All they carried was Cinnamon Carb Zero and then just plan Carb Zero, so I bought both. I put a slice of each through the toaster and tried them...and promptly spit them out. I could not choke it down, so awful! I woul dlike to try the other types but I would have to order them online. What a waste of 16 dollars and the gas/time it took to get it!


  25. That is a tough one,

    It is hard to decline when it is obvious they are trying to go out of their way for you. My mom once made cookies for me and was all excited that they were "gluten Free" I said, did you buy a gluten free mix and she said yes, here it is...she showed it to me. It was NOT Gluten Free...it was SUGAR FREE. To this day, she still thinks Gluten= sugar and that I am having a diabetes like problem. SHe even bought me WHOLE WHEAT rolls one time because she thought I couldn't eat the sugar in white rolls.

    I try and try and I only seem to hurt her feelings because she does NOT understand how Gluten and wheat relate to each other. :(