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  1. Traveling with celiac I would like to relate my experience today and then ask for advice on traveling and bringing food along (being prepared). See last paragraph Today we traveled to a new place and meet new people. We had a project to do and then everyone wanted to go to lunch. So I didn’t have an opportunity to research this place before hand - I could’ve used Find Me Gluten Free - but I didn’t. I took a risk. (I know better now) anyways the place we went had gluten-free options so I asked the waitress if I got the gyro without the pita would it be gluten-free. She said yeah. She asked if I wanted fries even though fried in same fryer as other gluten items. I said yes because I’ve done it before without any repercussions. I love fries. So the place seemed pretty knowledgeable about gluten-free food. My food was great! But an hour or so later I was vomiting in the men’s stall at a gas station (all the fries, TMI?) - the woman’s was occupied! I have only recently started vomiting when I have a cc gluten exposure. Ugh! Ok so I know my mistake was getting the fries. Taking a risk. Not double checking the restaurant. Not maybe being more vigilant for my health. I hate being that person at the restaurant who has to make a scene asking all the gluten free questions. Especially in front of new people. So now I know I need to be better prepared. But does that mean not eating out at new places every again? I need advice in how to travel with celiac disease, how to be better prepared for going to a new restaurant. At this point should I just pack my own lunch every time I go somewhere new? My husband (bless his heart) did pack me veggies to eat but I need more than that or I’ll get hangry. Also I am terrible at being that prepared that I could have brought my own lunch along. Also do I eat my own lunch in the restaurant? I can’t do that right plus it would be weird?
  2. Tabbmarie

    THINK I'm celiac

    So I havent been diagnosed. But was experiencing some pretty terrible stomach pains, And started paying attention to what i was eating. And that's when I realized that wheat and bread really do not agree with me. So it's only been a few days of trying to eat gluten free, And it's so terrible. This sounds so dumb, but I feel like life is over because i won't be able to eat some of my favorite things. And the idea of being infertile from this absolutely terrifies me. I'm only 23. And I keep googling things about celiac and making it worse for myself and freaking myself out. This sucks so bad. Even trying to be gluten free, it's just so hard. Everything has gluten. I'm just having a rough time coping with the idea of this already. Any tips on how to get better at This? And how long it takes to feel better? And if you have any amazing recipes, please do share.
  3. Last November I was diagnosed with Celiac disease. Ever since I haven't been able to remain gluten-free for more than two weeks. I always make excuses and tell myself that I will start "tomorrow." Before being diagnosed, I thought I was gluten intolerant for over a year. I never visited a doctor or anything, I just had a horrible skin rash every time I ate gluten plus stomach pains and other symptoms so I made assumptions. The thing is, when I thought I was gluten intolerant I had no trouble being gluten-free because I thought it was only a temporary or superficial thing. Like it was ok to get sick every once in a while if the consequence was only a skin rash and symptoms for some hours or a day. I ate almost fully gluten-free for the past year, except for special occasions when I made the decision to indulge. As many of you all know, it is mentally very difficult to accept that you have to restrict yourself from foods you love forever. I am Mexican and food is a central part of our life and family traditions, making it even more difficult. To make matters worse, my family owns a bakery that is next to my house so the kitchen is constantly filled with gluten treats, cakes, cookies, everything. But when I thought I was gluten intolerant, I had absolutely no trouble restricting myself from all the foods that were around my house. I also developed other food sensitivities recently: corn, legumes, most nuts, soy, etc. I also feel discomfort when eating gluten-free processed foods, perhaps because I haven't complied with the gluten-free diet for a long time. I most definitely understand how destructive gluten can be for a celiac. I know that by eating gluten I am damaging my body and health. It is not physically difficult to abstain from gluten, I am having trouble adjusting mentally and socially. I have read all the scary posts about what can happen if I don't follow a gluten-free diet, so I am not posting this so I can be motivated by scare tactics. I am posting this because I am honestly desperate. I feel physically terrible after eating gluten, but it is not enough to make me stop. In my mind, I justify myself by thinking that I should eat X food one last time before actually starting my diet. It is mindblowing to me that even if I know what can happen to my body, I just keep binging on gluten. I believe that a huge reason for this is that I feel misunderstood. I have never met another celiac in my life, so I don't really have anyone that actually understands how difficult it can be to change your lifestyle permanently. The advice I constantly get from my friends is "just stop because it makes you sick," which is not very helpful. I really think that I need to talk with actual people that are also going through this or that have successfully transitioned to a gluten-free lifestyle postdiagnosis. I figured this forum was a good place to start, but I am new here and don't really know the "social etiquette" around here. I would love to connect with other celiacs and hear about how you managed to go gluten-free. What resources where helpful? Do you have any helpful tips? Thanks for reading!
  4. Melody Stiles, MSW, LCSW, MAC, LCAC

    You're Not Crazy: Coping with Celiac Disease & Gluten Sensitivity

    Celiac.com 12/29/2017 - Do you remember the moment when you were diagnosed with celiac disease or gluten sensitivity? Most people I talk to have it etched in their memory. After all, the information is life transforming. Yet, I doubt if most of us understood the enormity of the information until time passed and we had the opportunity to actually fully understand what it meant besides the gluten free diet (GFD). Along with having to learn that gluten is everywhere, we also learn that having to eat differently is, to put it mildly, upsetting. In fact, the psychological impact of living with celiac disease or gluten sensitivity usually involves depression and anxiety. There are other emotional responses as well; these include grief and, for some, trauma (depending upon how long it took for a diagnosis and how sick the person became). Celiac disease or gluten sensitivity is such a difficult illness to live with because of the social and cultural fallout we are forced to deal with as a result of having to be on the gluten-free diet. We quickly learn how difficult it is to negotiate the world having to live on the gluten-free diet. Let's start with how much food is involved in normal social situations: a family gathering, a party, going out to eat for any meal, a wedding, and for kids of all ages, school, camp, etc. Until it happens to you, it is very difficult to comprehend the enormity of the change and its limiting impact. Change is something people do not like, even if that change is good. And we most certainly do not like to change the way we eat. Just talk to anyone who has ever been on a diet. Unfortunately for those of us with celiac disease or gluten sensitivity, the diet is not optional. And, it's hard; so hard in fact that some people cheat. And ultimately, they pay. Culturally, food is hugely important. Food is almost always involved in every occasion that involves spending time with people, dating, any rites of passage including bridal showers, baby showers, weddings, and birthday parties. And there are the holiday gatherings. Every single time you are invited to attend one of these events, you have to stop and think about whether it's worth it to attend. If you go you will either have to eat before you go, take your own food or ask the hostess to make special arrangements. You not only feel like a burden upon those in your social and family circles, but you find yourself stressed out by the mere prospect. And the social consequences are enormous. The very people life you have always relied upon for support, begin to drift. You find yourself shocked and saddened by the reactions and behavior of family and friends who you never suspected of being unable to handle change in you. It's hard not to take personally, but their reaction is not about you. They most likely react this way because your life is now too restrictive for them. Just like you, they want to be able to go wherever they want to eat, serve whatever they want to serve and not have to think about it twice. But unlike you, they still can. And this inevitably leads to conflict. Then your feelings get hurt and they are frustrated and you simply stop getting together as often because, in the end, it's just easier. I believe that is why people with this disease enjoy socializing with others who are also living on the gluten-free diet. We are trying to avoid the social isolation, loneliness, and shame. We want to forget our fear of the unknown, feeling like we no longer fit in, as if we are lost, or in denial and maybe needing more information. In a nutshell, we feel crazy. Because we cannot do something most people can do: eat normally. These feelings are only a portion of what I have learned about people who are forced to live on the gluten-free diet experience. Parents of children impacted with celiac disease or gluten sensitivity share these feelings as well. In the end, you need to give yourself time to fully understand the gluten-free diet, and in order to keep yourself safe, become vigilant to all of the hidden places gluten can hide. We do know that those who stay on the gluten-free diet and avoid gluten as much as possible feel better emotionally much more quickly than those who do not. I cannot underestimate the need to consult a good dietician. You need to find others living on the gluten-free diet; they can often be found through local support groups. Some of us might find it helpful to talk with a therapist who is familiar with celiac disease, gluten sensitivity or chronic illness in general. Lastly, you also need to remind yourself that you cannot change how your body reacts to gluten. And you cannot change other people. What you can change is your perception and attempt to understand that while we may require a different diet to stay safe and healthy, those who do not have our diagnoses do not. Our experience of life, then, is changed. We have had change forced upon us. Our friends and family have not. The only thing different to them is that we are telling them we can't eat the way we used to. I think the sooner we accept these facts, the sooner those around us will as well. You are not crazy. The way you have felt since the day all of this began for you is perfectly normal. Yes, some people have serious depression in addition to celiac disease and gluten sensitivity. This requires treatment in addition to the gluten free diet. For some, the depression and anxiety are alleviated over time because of the gluten-free diet and subsequent healing. In the end, this is a difficult but doable road and you are in good company.
  5. You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc. You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights.
  6. glutenfreegirlfriend

    Coping with Celiacs

    Ladies, Gentleman, my fellow Celiacs, I need your help, please!! As of December 2015, my boyfriend got diagnosed with Celiacs disease and has not been able to cope and adjust to it. He tries- very hard- but for whatever reason his body still is not agreeing with him. He has no idea I made this account, but I need to try and research things that will help. It is really having an affect on his life, he is not himself anymore and it is definitely starting to take a toll on our relationship as well. As his girlfriend, I have tried a lot to help...even though there is not too much I can do. Instead of eating out, 95% of the time we cook together. I make sure everything I get him is gluten-free and I will randomly bake and cook him things, just so I know he has things to eat. My main concern, as well as his, is that his appetite is completely gone. He will wake up in the morning and can barely get himself to eat anything once 1 or 2 pm rolls around. He'll eat once a day, if that. He dropped about 20 pounds, too. He has tried probiotics, the only thing that it really helped was the vomitting...which still happens occasionally, just not as much. He also doesn't really like talking about the matter, especially with me. Whenever he brings it up and I try helping I get a lot of backlash. I know its hard to adjust too, but I am just trying to help. What do you guys recommend? Going back to the doctors? Is there anything or any supplement any of you take that helps with your appetite? I need help! Thanks, A concerned girlfriend.
  7. EasterLily

    Glutened myself :(

    Pretty sure I just glutened myself. Twice!! First let me start off by saying my nausea has finally started letting up. (Clapping excitingly) The first time I felt a problem was last night. About a half hour after dinner. I became more bloated than I already am and I felt a lot of pressure. An hour after dinner I started feeling pressure in my chest and it seemed like I had to take a deep breath just to catch my breath. It let up a bit by bedtime, but I wasn't able to sleep at all last night. I've struggled with insomnia for the past 20 years so I didn't think anything of it until my Trazadone didn't work. Which has never happened. I got a few hours of sleep and when I woke up I had really sharp pains in my stomach and had to rush to the bathroom. It was an unusual amount. I had breakfast today and the same reaction as last night and more sharp pains and diarrhea plus nausea. The common denominator was store brand cooking spray. I used it on the pan I cooked the chicken on and I used it in another pan this morning when I made my eggs. Both pans and utensils were gluten free. I didn't see anything ominous in the ingredients and my gluten-free app doesn't recognize most store brands, so yes, I was playing Russian Roulette. I am trying not to be mad at myself. It was an accident and there is a learning curve. However, I am still irritated because the nausea is going away and I was actually going to leave the house today for the first time in 2 weeks. My son get's married this Saturday and I am desperate to feel better so I can enjoy myself and last the night.
  8. Today is day 7 of my gluten free diet. Withdraw symptoms starting yesterday and have gotten more intense. I've had a pounding headache for 3 days now and nothing seems to ease them. I can't sleep so I am absolutely exhausted and run down. I have little to no energy. Even talking is an effort. My throat feels swollen and it feels like I'm about to choke or gag. It's causing a great deal of anxiety. My nausea is still in full force, but it feels different since yesterday, if that makes any sense. My body hurts, I 'm lightheaded, my arthritis is flared, my stomach is gurgling, I have indigestion that won't go away, I am having weird stomach 'spasms' (so my doctor calls them. It feels like butterflies ingthe top of my stomach) and I am starved!! But because of the nausea - that I've had for a month now - I can't eat much at once. And because of my acid reflux I cant' go to bed with food in my stomach, so my last snack has to be by 7:30. By the time I wake up I am so hungry I feel like I'm going to pass out. I can't handle these withdraw symptoms. I so much want to run into the kitchen and eat my husbands white bread. I was crying this morning and I'm really struggling. My kids seem to be minimizing my condition and that is hurtful. Only you can really understand the frustration and depression that comes with this. Any advice for coping would be greatly appreciated. Thank you.
  9. EasterLily

    Glutened myself :(

    Pretty sure I just glutened myself. Twice!! First let me start off by saying my nausea has finally started letting up. (Clapping excitingly) The first time I felt a problem was last night. About a half hour after dinner. I became more bloated than I already am and I felt a lot of pressure. An hour after dinner I started feeling pressure in my chest and it seemed like I had to take a deep breath just to catch my breath. It let up a bit by bedtime, but I wasn't able to sleep at all last night. I've struggled with insomnia for the past 20 years so I didn't think anything of it until my Trazadone didn't work. Which has never happened. I got a few hours of sleep and when I woke up I had really sharp pains in my stomach and had to rush to the bathroom. It was an unusual amount. I had breakfast today and the same reaction as last night and more sharp pains and diarrhea plus nausea. The common denominator was store brand cooking spray. I used it on the pan I cooked the chicken on and I used it in another pan this morning when I made my eggs. Both pans and utensils were gluten free. I didn't see anything ominous in the ingredients and my gluten-free app doesn't recognize most store brands, so yes, I was playing Russian Roulette. I am trying not to be mad at myself. It was an accident and there is a learning curve. However, I am still irritated because the nausea is going away and I was actually going to leave the house today for the first time in 2 weeks. My son get's married this Saturday and I am desperate to feel better so I can enjoy myself and last the night.
  10. Hello. I have not been officially diagnosed with Celiac Disease as of yet. My doctor has put me on a Gluten-free diet to see if my condition improves. If so, then we will take it from there. My grandmother had celiac disease, so he thinks it's a good possibility given my history and symptoms. I have been diagnosed with IBS, which I've had since I was a teenager, Fibromyalgia, arthritis, anxiety disorder and depression. About 2 years ago I noticed my stomach was really getting bad when it came to eating. Figuring it was just my IBS, I stopped eating most processed foods. After a few weeks I noticed my diarrhea and stomach cramping were greatly reduced. I have alternating IBS, so I never know whether I'll be constipated or not on any given day. I lost a lot of weight - which was good because I was gaining weight quickly which is unlike my metabolism. Any issues I had after that I chalked up to my IBS and/or nerves. About 8 months ago I was having issues with extreme nausea and other symptoms and was diagnosed with acid reflux. I was put on Omeprazole 20 mg in the morning and over-the-counter Omeprazole 20 mg in the evening. All the symptoms disappeared. (Nausea and reflux symptoms.) then a month later they all came back again and I adjusted my diet after noticing a pattern of certain foods. (Or so I thought.) The nausea would come and go, but I didn't have the indigestion, dry cough or sore throat anymore. When the nausea would come back I would up my Omeprazole to 40 mg and in a few days I would feel better and go back to 20mgs. 3 weeks ago, that method did not work and I have been extremely nauseous for the past 3 weeks. I had new symptoms however, bloating, burping, gas and diarrhea and constipation more often than normal with my IBS. The bloating was so severe my stomach was distended. I have been wearing sweatpants for 2 weeks because I cannot fit into my jeans. I had a endoscopy and nothing was found. I was to do a barrium study, but I am too bloated and nauseous to drink it. I was given Zofran but that never really worked. It took the edge of the nausea but that 's about it. It constipated me horribly so I don't bother using it anymore. I have been waking up in the middle of the night with the WORST pains in my stomach that would go away about 10-15 min after moving my bowels. However, the past week it has been diarrhea in the middle of the night and far more often. I would wake up in the morning feeling ok, but as the day goes on I become more nauseous and bloated and the more bloated I am the more nauseous I am. I have been struggling with body aches. It's to the point where it feels like I'm coming down with something. AFter I eat, it feels like a lead weight sitting in my stomach. Even the smallest meal feels like a three course meal. Gas X wasn't working so I stopped taking it. I've read it is not gluten free so I am glad I stopped it. I have been eating 4 small meals a day, which has helped, but not lately. Nothing is working anymore. I am on day 3 of my gluten free diet. I am hungry, lightheaded and still nauseous. I've been reading posts and information on this site for a few days and I have to say there is so much information on here, it'll take awhile to read it all, but I am thankful I found you. I am back on my 325 mg of Iron because that's what I use when I get lightheaded. Today it's taking a bit longer to work. My last blood panel, about 8 months ago, showed low levels of B12. I was given something to take but fell out of the habit months ago. I know it's only been a few days, but I've been fighting depression for the past 3 weeks. I'm trying to find small positives to focus on and it helps for awhile, but then the nausea gets bad and it all goes out the window. My phobia is vomiting, so I've been having anxiety attacks daily and it's triggering the IBS and the acid reflux. I have given up more of my favorite foods and I am beginning to think bananas - my all time favorite food - may be contributing to the nausea, so I have temporarily cut them out. The indigestion, burping, gas and bloating have gotten a bit better and I'm not having spasms in my small intestines area anymore. But the nausea is horrible as well as the sharp stomach pains. It's like someone is inside me with a knife. The pain before, during and after a bowel movement takes a lot out of me. How much longer until I begin to feel better? My life has been on hold for 8 months. I can't do things I enjoy. My son is getting married in 2 weeks and I am desperate to feel better. Nothing will ruin that day more if I'm not well. Thanks for listening.
  11. After 6 years of having many many medical issues (I am now 20), I finally got tested for Celiac and it came back a big fat NEGATIVE. In the past I have been scoped in upper and lower but all the doctors could find was gastritis causing my episodes of acid reflux. Years have passed..a topical ointment for this rash...a migraine medicine for that migraine headache....that sinus surgery...here's a steroid...I just don't understand why you need all these root canals...you have many swollen lymphnodes...the asthma...the dizzy spells....the weakness....I am only 20 and needing to take supplements for a Vitamin D deficiency when there was no reason for me to even have it in the first place! So after talking to my GI doctor, we decided it was IBS and nonceliac gluten intolerance (which he has yet to put on my chart but he said it was that if it wasn't celiac). It has been a week since that diagnosis and quite frankly, I just don't know how to feel. Like it's like one day you just walk in your doctors office, they give you a diagnosis, expect you to make this big change, and just send you on your way forever with no follow ups. So I feel quite lonely but okay. I am pretty sure another reason why i feel lonely is because my family just doesn't believe me. It is plain and simple like that. I tell them I can't eat something and they will say "well I worked hard to make it after working all day so just have a little bit" ... and then they wonder why I am in my bed all night long with the ice, heating pad, and meds that don't work. Ever since the diagnosis I was not taken seriously at all. The gluten free diet has made me feel FANTASTIC!!! But they don't see it. They think I "just need to chill out" when I explain that I will literally get heart palpitations if I were to eat gluten. They think my gluten driven rash (which my GI doc said is the gluten rash) is just some form of STD or something. The other night my chinese food was contaminated and I was so nauseous for 2 days and my mom just couldn't wrap her brain around that cross contamination bothers me and blamed it on "sleep deprivation". The list goes on people. After tonight I was just done with it all. I live with my parents because I am in nursing school and it is the most convenient. My mom made me dinner and swore it was gluten free. I ate it and felt off. I had worked a long day and was just like "well okay". My brother brought home breaded chicken wings which I was very attacked for not eating. Then around 20 min after my consumption of dinner, I broke out in my rash, got stomach cramps, diarrhea, nausea, a headache, acid reflux, etc. I told my mom I think her dinner had gluten in it and she was just walking around and huffing as if I had actually ruined her life by stating that. She even dug through the garbage ready to prove me wrong until she found the soup can...yes it did have gluten. And all she can say was "oh well sorry" and barely even spoke to me for the rest of the night regarding any of it. Didn't even turn to me to talk when i was speaking to her. Why does my family act this way and how can I deal with this? Why do they act so annoyed because my body is reacting to something? I explained to them millions of times what will happen if I ate it but they honestly don't care about it. They just don't. I dont have celiac but gluten obviously makes me react to it, even in very severe ways. So why should I have to eat gluten and suffer because of them? Why would they even be expecting such a thing? Non celiac gluten intolerance is real right? I just feel silly for doing something for me for once instead of taking care of their needs like I usually have to do. In the past I have gotten called hypochondriac by them to the point where I dont wanna even see the doctor for a sinus infection because I am afraid all doctors think the same of me. If anybody has any advice, I would greatly appreciate it!
  12. Just had my 2nd visit with a new GI doctor I started seeing earlier this year. I was diagnosed with Celiac by another GI in June of 2015. Wasn't happy with him because he said he "might" diagnose only one celiac per year. Told me to just do gluten free and sent me on my way. Diagnosis was with EGD biopsies as well as celiac panel. If I remember correctly (only because it has been a year ago) my biopsies showed Marsh 3B for villi damage. This new GI told me yesterday that she was going to re-do the EGD, which I agreed with, but then she added "so this way we can really determine if it is Celiac or if you are just gluten sensitive and might just even get you to add some gluten back to your diet." My response? No way will I be putting gluten back into my diet in any way, shape or form. I explained to her I know what it does to me. I have determined that the only service she can be to me is to do my EGD's and give me my results. This is ridiculous. You go to a doctor and you have prior results showing the damage. But they still want to try and get you to "gradually put gluten back into your diet". How moronic can you be? You are supposed to be helping me feel better, not worse. I have already had to eliminate milk, by choice because of constant aching and swelling in my joints. Which I did explain this to the new GI. All she seemed to be concerned with was diarrhea, but I told her I do not have the diarrhea. Only time I get that way is when I have had milk and then I have bad gas pains, bloating, etc. then can't eat for several days because every thing (regardless of what it is) sets my system into a tizzy. I can see why people get so frustrated. I don't understand why doctors just won't listen to you. And it just hit me that she didn't even order new labs to check my tTG-IgA. Go figure. Guess she will do that after the EGD. My specific question to her nurse and to her when I first saw her was do you treat Celiac's and the answer was yes. Starting to think this won't be the doctor I stick with. We shall see after the EGD is done. Feeling even more frustrated now than when I was first diagnosed. Does anyone else have any recommendations? I know I have heard stories where people have gone through several doctors. But it just seems like a waste of time when all they need to do is check for certain things. What good is it to go to the doctor if they don't know what to do with the test results. Can anyone else share their story for when they were first diagnosed until they found the right doctor?
  13. I was diagnosed Celiac in June 2015 and have been trying to make this gluten free diet work as well as possible. I have just had a round of antibiotics for a bad tooth, my son broke his arm and during the trip to the ER, we stopped and I was glutened by what I think was cross contamination from some fries because it was late and the place was getting ready to close. Mind you all of this was about 4-5 weeks ago and I am still feeling the effects. Mostly from the anxiety and the not wanting to eat. I was just curious if it is worth treating the symptoms that go along with the glutening or does it help at all? I have seen some who say it is and some who say not but I would like honest opinions here. This is the worst glutening I have had by far and am really hoping things get better soon. Any information ya'll can give me will be a big help. I have read and read and read until I can't read anymore but most of it is from way back. I know things change and the way people look at things change so any advice will be more than useful to me right now.
  14. I've recently come to terms with my issue with gluten. Those terms being : drug addiction. When a craving hits I'd rather feed it than face the unsettling loss of control I feel when I go without it. I feel pathetic and desperate and I don't like feeling that way. Especially about etwas as silly as food. It's like there's a hole that will cause me extreme anxiety and irritability unless I plug it up with bread. Until I got online and learned that wheat foods act upon our brain in the same way opiates do I just felt like I was losing my mind to some strange eating disorder. People on gluten intolerance message boards even said that they have faced heroin addiction and withdrawal and gluten is no different. I don't even need to eat gluten immediately when a craving hits. Oddly enough, if I plan how I will soon be consuming gluten that'll stave off the desperation for a few days. I make excuses for it. Like, it's a holiday, or life has been stressful. I act like I can have just a little & it doesn't open the floodgates to full on cravings for the stuff. Wheat products will help me sleep when I have insomnia. Help me cope when I have anxiety or depression. They are an option for pain management when I either don't have my prescribed opiate or don't want it cuz it makes me very nauseous and itchy in a way that bread will never do. I recently realized that the only way I know to come down from feeling extremely suicidal and manic (dealing with depersonalization) is to eat wheaty foods. I've got these very good, valid reasons for why I continue to use it. But, I'm using it. Using it instead of learning healthy coping techniques. Instead of facing demons. And worst of all, I have chronic lyme disease on top of gluten intolerance. Chronic inflammatory disease plus inflammation from gluten intolerance. I see the hair loss, the weight gain and bloating, the pimples and clogged pores. What I don't see is how much damage I'm doing to my insides by continuing to eat gluten. It makes my arthritis flare, so my hands and back hurt worse. I brush that off though, cuz they hurt anyway; what's the big deal with worse. My hair is falling out, my complexion is wrecked, my arthritis is worse, my stomach is huge....and I'm still trading my health away for the comfort of breads. What if this choice, this bad choice, I keep making is going to prevent me from being functionally healthy....like ever?! If the hallmark of any addiction is continued use despite the negative impact on your life, then it's safe to say I'm addicted to gluten. Admitting I have an addiction is a big step. It means that now when I use, I say to myself that I am "using" and no longer refer to it as, "going off my diet". I'm slowly recognizing the ways that I use it. I'm overcoming some of those issues. I can deal with not sleeping; sleeping at night instead of the day is not worth eating gluten for. It's a challenge. I know just what to do; how "using" would fix it. I feel guilty and anxious about sleeping all day instead of at night. But, I can stay strong in that situation. When I fold and hit that gluten hard is pain and suicide. By pain I don't mean , "oh ow, I'm not comfortable, I don't want to do anything." I mean pain like my leg is being torn from my body by a mac truck and writhing in bed, screaming (actually screaming) in agony until I'm too exhausted to move and too hoarse to cry out. I mean pain like I can't move out of my bed to even eat or pee and even a normal breath is excruciating so I have to consciously breathe. By suicide I don't mean that I just want to kill myself. For me, it's a spinning out, losing my grip sort of situation, where continuing to participate in this hell is just illogical and thus killing myself is the solution. The world is just wool over my eyes; nothing is actually real. I died a long time ago and this is now a prison for my mind. I guess it's more like psychosis. (been a problem since I got dosed with anti-psychotics cuz doctors didn't realize my leg/back pain was nerve pain; they thought it was a delusion) Yeah, gluten is the best for those two things. I'll consciously trade away my hair, my beautiful body and youthful clear complexion for less pain and no psychosis any day. But that doesn't legitimize my drug use and it doesn't excuse it. I imagine a lot of heroin addicts are opting out of worse suffering too. They still need help. And so do I. Friends and family literally scoff at me when I tell them I'm addicted to gluten & tell them how their encouraging me to eat it is like handing heroin to heroin addict or cigs to a smoker. They say I'm a adult and I can make my own choices. They don't want the responsibility of helping me stay clean. I need like a sponsor or a gluten addicted buddy to help me thru this. I've been trying for years on my own & am still failing. Where can I get that help?
  15. Since being diagnosed with celiac disease, I have read so many accounts of non-supportive family and friends. I had never experienced it first hand though. I thought I understood and could sympathize with others in this position. I was wrong! I have two sisters from my father's side of the family. I have seen them maybe 5 times in the past 25 years. Most of our interaction has been over facebook and such things. We really wanted to spend some time building a stronger relationship. We decided to go on vacation. They came my direction from ohio and florida. We made plans for a trip even farther west than where I live to Cali. As we planned I was very clear " I must have a room with a kitchenette." I will bring all my own pots and pans and such things, but I will NEED to cook my meals at the room or have a cooler of things that I can eat with us. I am very sensitive and have not had great success in eating out. My house and car are COMPLETELY gluten-free. " I was trying to be understanding and even said " You two can take my car if you want to eat out. I know that for a lot of people that is a big part of vacation." They seemed all on board and excited about saving money by eating in some etc.. Then came the airport pick-up. We stop for snacks. My sister picks up chex mix with cheez-it and pretzels in it. I was like oh you can't eat that in my car or in my house. I then pointed out the lays and the ruffles and fritos, cheetos etc.... all gluten-free snack options. Oh I love lays chips and fritos etc... But I want these. Ok you can eat them on my porch. REALLY? yes really. . I made Lemon poppy seed muffins and blueberry muffins ( both of which they requested the flavors) that I have served to people not gluten-free that never knew and ate multiple muffins. for the car ride. I even found a completely gluten-free resteraunt in Hollywood for us to try . Only the Absolute ATTITUDE I got about having to go out of the way and WASTE 20 extra minutes to go there was so Overwhelming I allowed myself to be cowed into once again trying to eat out in a reteraunt they wanted to go to. 30 minutes of them picking things like Pizza parlors that I had to say I cannot even attempt to eat there I finally exploded and was like " I told you not to worry about me just pick a place to eat and I will go on my own and find something I can eat!" ( we were walking in an open air market area) They looked at me like I was so crazy and mean for getting upset when they were trying so hard. So they went and got two whole pizzas and I went and found a sushi place. (This was usually a good option for me) After about 45 minutes I got a little nauseous and a lot of GERD ( my first symptoms of being glutened). The next day we ended up at a taping. Again we couldn't bring our own food in so I eneded up eating a snack bag of fritos while they ate burgers, fries and wraps. No biggy. It was noones fault. We didn't know. after the taping I NEEDED food. I wanted to stop at a gas staion to warm up my hamburger ( I had brought pre-cooked burgers and buns) only they were not hunger and just wwanted to get to the next hotel that was 2 hrs away. Now I have to wait 2 more hours. We get tot he hotel I want to get to the grocery and make some food I feel safe eating. Oh no they want to go to the beach. I put my foot down. I am going I need to eat. They go with me. After I get stomping and slammed doors because they missed the sunset on the beach because I " rolled eyes" just had to go to the store right then. I look over and on the table is a crumpled crumby cookie exploded all over the food preparation area. I almost cried. When I finally tried to open a conversation I got "We washed our hands and tried to keep our food away from you. Its our vacation and we are not gluten-free so we should not have to deal with your problems on our vacation!" Really, you cant eat your cookie outside or your pie in the restaurant. Those things were so dang hard so that I could enjoy a pain free healthy vacation. Anyway I decided to come home a lone and they could not have to deal with my illness interfering with their need for cookies and pies. Now they are calling me crazy and told me I don't deserve to breathe because I left them there. I feel somewhat guilty about that, but they were sneaking their crumbly cookies and cheez its in my car. CRUMBS everywhere that I put my groceries! UGHHH. They didn't want to respect my property or my health or make any sacrifice to have me with them. I gave them what they wanted. To bad they now have a new set of issues to deal with like renting a car ( both are capable of for sure) and now finding lodging for the next 7 days. They also have lost any opportunity to have any relationship with me. To those of you that have to deal with this sort of insensitivity and lack of concern on a regular basis..... My prayers and thoughts and love to you all.
  16. This has got to be one of the saddest days for me. Although I think the doctors have finally figured out what's wrong with me, I'm now faced with a life-changing illness that has gotten hold of me at age 28- and I still have my whole life ahead of me. Now, for the rest of my life, all the foods I've enjoyed eating or cooking are making me miserable and I can no longer just be part of the many people who enjoy whatever they want whenever they want. For so long, I've been battling with gluten sensitivity but never truly knowing what was the problem. For years I've felt it coming on but always chalked it up to feeling too full or eating too much sugar or greasy foods. Within the last 6 months, my body has severely rebelled and the moment I ingest any gluten into my system, I blow up like I'm 9 months pregnant and it takes several hours to begin to deflate. I always compared the feeling of the extreme bloated reaction to having a balloon inside me that just wouldn't pop. No matter what I did, I could gain no relief. I'd begin drinking tons of lemon water and working out but sometimes, working out would just make things worse. I would actually feel pain when I did a sit up- probably from all the inflammation occurring inside my body. I think the biggest problem I'm dealing with now is, I'm only 28. I feel like my life is just beginning. I'm engaged to be married, I want to have a family soon, and now for the rest of my life, I can't live a "normal" life anymore. Now I'm one of the people I always laughed at and thought "how awful to have to be a label checker"- now I am one. I'm going to have to be the person who turns around every box to check the ingredients. I'm someone who cannot just go into the kitchen and start baking unless I'm baking for someone else, but how fun is that? I'm living the life of someone I never wanted to have to deal with. I always became so annoyed by my mom and aunt constantly talking about nutrition and talking Paleo and all the other diet fads. Little did I know, I would become one. I'm absolutely beside myself with now feeling like this is all I have left. I know life doesn't revolve around food, and I know there is so much wholesome and delicious food out there to be had and I realize all of the benefits like weight loss that will probably come as a result from this, but I didn't think at this point in my life, I'd have to be dealing with this. What about those who don't take care of their body, eat 10 times worse than me, snack on cookies and chips all day and drink soda with every meal?? I was never even that bad at my absolute worst! My biggest vice was pizza and bakery goods. So what? That's probably 75% of all americans. I love water and drink it daily- probably 2 gallons a day without even thinking about it. I never felt the need to snack, but I would make my meals mostly about gluten. I'm sure about 75% of my meals revolved around gluten. Ordering pizza and breadsticks as my meal. Going to a restaurant and ordering beers, fries, and wings wasn't the best option but who doesn't do that once in a while? I just feel targeted. Why me? Pity party for 1 right here. If anyone out there has a similar story, a success story, any helpful tips on how to cope, or just any general uplifting comments to add, I could really use it. I'm beginning a new journey, one that I tried so hard to rebel against, but now I'm out of options. I don't want to take years off my life. I want to live long and happy the way I always envisioned my life. I need inspiration. I would love to upload a picture of what the gluten looks like in my belly- but I can't figure out how to do that either. I'd appreciate help with this as well
  17. Does anyone else have a problem with stomach cramps just from smelling wheat bread? Since my dx I have really had problems when I go to the grocery. 1st I am seriously paranoid about being glutened. The migraine, hot poker stomach and instant tired are awful. It has gotten tot he point where even walking through the bakery at the store makes my stomach sort of crampy. It goes away once I leave the area or cant smell the baked goods anymore. It has been nice on one hand. I don't crave gluten foods; however, its pretty bad going tot he grocery. Does anyone else have this issue?
  18. Hi there everyone, I don't think I've posted on this section of the board before. My boyfriend invited me to go away on a Christmas Vacation with his family! I'm so, so looking forward to it but I'm a little nervous because I've only met them a few times (they live 4 hours away). They seem really great though, so it should be fun! Here is my problem: I really, really don't want to get sick because my problems are pain and neurological… I get depressed, snappy, teary and kind of feel crazy. Once I heal this all goes away 100%. Not an awesome (almost first) impression. I also desperately don't want to inconvenience his family in any way or make them feel uncomfortable at all. I don't see though, how I can have both. I wish it weren't so but I'm extraordinarily sensitive. I would probably have to have my own food prep area and I wouldn't be able to sit at the table with them if the meal is very gluten-heavy. I got very, very sick the first time I visited them, likely because I wasn't vocal enough about how sensitive I really am. I'm scared they will feel weird if I'm not eating with them but I want them to be able to eat whatever they want! I tried explaining to his mom on my second visit that I wanted to find a way to not inconvience the family or make them feel uncomfortable. I was trying to say I could eat separately and maybe a few days my boyfriend and I could cook dinner for everyone and we could all eat together! I think (hope) she misinterpreted me somewhat because she seemed tense and upset and (I forget the exact words) thought I was trying to make the whole family go gluten free :-( I tried to explain I wasn't saying that at all… I really want everyone to have whatever food they want and enjoy. I tried to explain that, but I'm not sure she believed me. Hopefully that doesn't cause problems... Any advice? What can/should I say that will be really clear and not make anyone feel bad?
  19. Hey guys! I'm kind of looking for some help, support, and advice here. Starting in October of last year, I woke up one morning feeling like I had a rock in my stomach for no reason and I knew something was different. I had a hard time initially describing my symptoms except I felt "full" and didn't know what else to say about it. My symptoms got steadily worse. I got to a point where I could feel hardness when I lay on my back just left of my belly button and when I REALLY pressed down while standing up. I can also feel a very strong pulse there. I had to sleep on my side though I have always been a belly-sleeper because it was uncomfortable to sleep on the lump. After seeing several doctors and having to wait a lot for test results, I was finally diagnosed after a biopsy/endoscopy in early April and have been (trying to be) gluten free ever since. I feel relieved finally knowing what is wrong with me, but I feel like I'm getting even sicker so I'm paranoid that something else could be wrong with me. I can no longer sleep on my sides because I've been experiencing weird stiffness sensations in my sides, extending from my waist down to my hip. My left hip especially feels like it has a rock sitting against it. Sometimes I get weird pressure sensations across my back and back pain. When I try to lie down on my stomach, it no longer feels like specific swelling in my low stomach but like a generalized tenderness from ribs to hips. It also causes my back to break out in a tingling feeling and these weird prickly sensations will last a full day afterwards. I feel like I'm allergic to literally everything I eat. I get D every time I eat vegetables. I get gassy, squishy intestinal feelings whenever I eat cheese. AND THE BLOATING, HARD, FULL FEELING STILL REFUSES TO GO AWAY. I've experienced some headaches and fatigue recently (though I can't really tell if that's just humidity/stress). I am due for a checkup with my GI and gyno recently so maybe I can get a lot of these questions answered but I am really at the end of my rope. All I want is to feel normal again and I have to wonder why the heck I'm on this diet anyways if it isn't helping me. I'm a very anxious person and the fact that I'm getting worse just leads me to thinking the worst, like cancer and MS. Anyone who has had similar feelings or equally as rough a recovery would be really helpful. I'm just looking for comfort and any sort of advice you could possibly have.
  20. Hi all. I am sorry if this gets long, but I have a story to tell and I think if I tell it to people that understand and relate I will feel a lot better emotionally. Even if no one reads anything this long. I remember having my first health problems my first day of second grade, that was 30 years ago. I had the worst headache and puked up my spaghetti on the principle's shoes. The first of many migraines. They started out just a few a year and then gradually increased to the point that my mom was taking me to a specialist. They swore up and down that childhood migraines were so rare and I didn't have them. How right they were. They just kept gradually getting worse and more frequent which then led to years and years of tests, ER visits for pain, hospital stays for intense vomiting. Those are they only symptoms I had until I was 17. At 17 I started getting stomach aches all the time, sometimes followed by vomiting, D or C ( either one depending on which one the gods felt I needed to go through) and intense pain. More doctors visits, more tests, more BS. You are constipated, you have IBS, you have a stomach virus, more BS. I learned to deal with it and quit frequenting the doctor so much. I was also breaking bones, some of them multiple times. Around 20, I started gaining weight. I have always been a little on the thin side, always had a low BMI, so when I gained 50 pound out of the blue I was concerned. I also started getting a tingly sensation in my arms and hands. Off to the doctor I go, more tests, more BS, yada, yada, yada. This time it was muscular, off to the physical therapists. Didn't work. Imagine that. After about three years of more testing to figure out why the physical therapy wasn't working, I started to get awful back pain. I also started to get weird reactions to food. My lips were swelling after eating, constant runny nose, rashes. Off to the allergist and off to a back specialist. More testing, more ah crap, you know the drill. The lip swelling cleared and no food allergies. Amazingly I wasn't tested for wheat. Fast forward a year and I end up pregnant with by boyfriend. I ended up with a tubal of one baby and a vaginal miscarriage of the other. Guess what, twins. I had to have surgery for the tubal. At this time I heard that on of my co-workers said " she just got her period late". They were fed up with all the missed work I had and thought I was making it all up. Hard things to swallow. A few months later I got pregnant again. This time the fetal heart tones were too low and I ended up getting a D&C after the heart tone was Zero. No late period this time. About six months later my migraines were getting progressively worse, I was getting about three a week some weeks. More testing, different doctors, and more BS. This time it Polycystic Ovarian Syndrome. Hormone replacement therapy. It didn't work. We then tried a ton of different rescue meds for when I get the migraines. None of them worked. HMMM. Then we tried medications for prevention. Some of them were anti-depressants cause "hey I'm depressed I just lost three babies". They didn't work, didn't help with the mood swings that I had attributed to the lost pregnancies. Mean while, I am planning a wedding with the man I was pregnant with. Two months before my wedding I found out I was pregnant. Sicker than a dog with morning sickness, hellacious migraines, swollen feet at two months ( was concerned, was blown off). I then started to have some other problems as my pregnancy progressed. I was having stomach pain all the time, racing heart, the vomiting never ceased, and awful heartburn. I was going to the doctor multiple times a week trying to figure out what was wrong. On March 28th 2003 I went to the ER because I wasn't feeling well at all. I had just been diagnosed with pneumonia a few days before and I have an awful migraine and just felt like over all poo. My aunt came and picked me up. When I opened the door she suggested that maybe I pack a bag. I guess I looked as bad as I felt, or worse. She thought I was going to die on the way to the hospital. When I got there, my blood pressure was 220/180. Doctors told me I was lucky I didn't stroke out and die. Was immediately admitted and treated for preeclampsia. They then induced me, which didn't work at all. It was three days of hell. On Monday morning March 31st 2003, I was rushed into emergency surgery because they couldn't pick up the babies heart rate and my blood pressure was sky high. They were running down the hall way trying to give me drugs on the way and then my blood pressure bottomed out. From what I heard, my daughter was born without a heart rate and not breathing, they had to resuscitate her. Glad I wasn't there for that. Also learned that my placenta was 80% dead. I woke up half a day later to learn I had a baby girl. Spent eight days in the hospital and almost died, but it was worth it. Fast forward four months, my milk dries up. No cause what so ever. I have also lost 60 pounds since the baby was born. But hey, I just had a baby. About five months later I couldn't walk up the stairs, I had profuse sweating, rapid heart rate, hair falling out. Then I couldn't even pick up my daughter. I was at work one night as a lab tech when I started asking my co-workers what they thought it would be. Everyone said thyroid. They drew my blood and off to test my TSH, T3, and FT4. Hell, I will be my own doctor now. Grave's disease. I went to the doctor the next morning, was told I had a huge goiter ( I some how never noticed it until it was pointed out), and my heart rate was through the roof. Was admitted to the hospital, was told I was hours away from a thyroid storm. Another close call with death. Get the radioactive iodine and things improve. UNTIL..... I am still dealing with the migraines, I am on FMLA at work so I can keep my job, and I find out I am pregnant again. My endo told me it would be impossible for me to get pregnant with my TSH so high. It was 80. We had a very hard time regulating my TSH. I had just switched hospitals, so I had a new doctor. He wanted to see me quite frequently for the first few months, they were good months. Until I hit 3 months. Migraines with auras four times a day. I had to go on bed rest. My son was born 2 months premature at 3 pounds 6 ounces and spent a month in the NICU, that was March 23rd 2005. My placenta was also very dead and there was almost no amniotic fluid. I am lucky they were monitoring me so close or my son would have died. My OBGYN actually bluntly told me he was going to die and then promptly left the room. She was fired that day. I lost my job due to missed work shortly after I had my son. Then came the year long struggle with nausea, awful pain under my ribs, no matter what I ate I felt like crap. It was an inactive gallbladder. More surgery. Felt a little better for a little while. Things from there just got worse. Weight fluctuations from one extreme to the next, the tingly sensation in my arms then went to my back and neck and was no longer tingly, it was painful. More testing, find a mediastinal ( I sure am glad I took all those medical terminology courses in school) mass surrounding my aorta. More testing. PET scans, CT's, referrals. The pulmonologist said it was a broncho-somthingerother cyst ( I am calling brain fog) and it needed to be removed. The surgeon he sent me to said that it would be to risky of a surgery and didn't think it was causing my pain. He referred me to Mayo. Back to another Pulmonologist. He tested me for everything under the sun, couldn't determine what the damn thing was. " It needs to come out". Off to the head of the Cardiothoracic department of Mayo Rochester. I am someone special now. He agreed, explained it would be an extensive surgery to get it out. They would have to make an incision from the front of my chest in-between my breasts, and loop down below the right and continue to the middle of my back. While they are explaining this to me he gets a call from the CT people and the thing has grown. It's Friday, we are going to do the surgery Monday. I go home, get my affairs in order, I am going to be in the ICU for a week and then in physical therapy for three before I can come home. I won't see my kids in a while. I am wheeled into the operating room Monday morning still awake. I look up to a gallery full of people, guess the surgery was a big deal and they wanted to watch. They were disappointed! They decided to do a small incision in my neck and look at it with a scope. The then sliced it up the middle and slid it out. I was in the hospital that morning for 7 hours and then filled full of drugs and sent on my way. I was back to work six days later. Lucky me. A month later I left my husband. Best thing I ever did. He saw all my sickness as a burden, was never supportive. I lost 30 pounds right away. Pretty soon, I was losing weight, sick all the time, tired all the time. More tests, more no answers. I lost another job due to missed work. Fast forward to January 30th 2014. I was very ill and in lots of pain so I went to the ER. Had a CT scan done, all that was noticed was an inflamed appendix. Did some labs, no increased WBC, no fever, no sign of infection. Sent home. Meanwhile, the brain fog is so bad I am starting to think I have early Alzheimer's. By the end of March I was so sick I had been to the doctor 8 times in a month. Someone finally sent me to GI. The admitted me to the hospital and schedule my endoscopy and labs for the next morning. I wasn't sure what they were testing for, I had just come out of the procedure when they told me. Sent me home, made an appointment for two weeks later. Diagnosed with Celiac on Monday April 7th 2014, they think I have had it since birth. My daughter was diagnosed a few weeks later, same with her. Had never heard of it. I was just so happy I had a diagnosis. My GI walked me through the beginnings, I read a lot on here, and I set myself to work. You know the drill. Two weeks ago, I was again seen in the ER. My appendix is still inflamed, still no elevated WBC or fever. Given anti-nausea meds, pain meds, told if the pain and vomiting get worse to come back. I'm back six hours later. They repeated all tests ( to make sure something didn't change in six hours), was ready to send me home again. I refused. Got my s$#&ty (literally, it was impacted with stool) appendix out two days later. That morning I had a colonoscopy and the surgery was a triple header ( they fixed a hernia that they had discovered during the CT's, my appendix out, and they explored my lower belly). Yay, more holes and scars. Since my diagnosis I have found out I also have diverticulosis, slow intestinal movement, osteoarthritis in my spine, an elevated ANA ( more testing to figure out why), and all the other related deficiencies that we like to have. To date I have lost 168 pounds and they just keep flying off. I have had three glutenings in the last two months ( accidental, I didn't go eat that blueberry donut I have been craving). I was at the doctor on Friday and had lost 6 pounds since my surgery ( went from taking three anti-nausea pills a day to three in two weeks) so I would say my surgery has been successful. I have been eating up a storm. My TSH is high so I should at least be leveled off on the losing. Went to the doctor Monday morning and had lost two more. My GI thinks there is something else going on. I have to keep a diary until July 8th of everything. What I eat, calories consumed, what I drink, when I poop, everything. Then if I have lost more than ten pounds on my next appointment, it's off to the hospital for more testing, nutritional therapy, more BS. Does it ever end? One good thing is I haven't had a migraine in over two month. Childhood migraines are really rare LMFAO I called my GP this morning to see if I could get on an anti-depressant, this is all too much to take. Well, it took a lot longer to write about thirty years than I thought it would. If you read this, Thank you for taking the time. I hope you didn't see too much of yourself in this. If you didn't read it, that's ok. I already feel a little better just getting it off my chest.
  21. Hi everyone! So I wanted to see if anyone else runs in to this, but when I "get glutened" and become sick, the symptoms can last for a while (and even come and go without warning. one day, it's doable, and the next, it's not). On the not-so-doable days, I have had to call out of work. Nobody wants to be in a bunch of pain and/or going to the bathroom a bunch during work. I got in trouble the other day for calling out, though, which was quite frustrating. I was wondering if anyone else has ever dealt with something similar to this? And how do the rest of you cope with managing your day to day tasks. Mind you, I am very strict about maintaining a gluten free diet, but there's times you ingest gluten without meaning to
  22. I feel hopeless and overwhelmed I’m a 29-year-old mom and newlywed undergoing testing for Celiac/NCGS, and I’m fairly certain that my dear husband is tired of hearing about it all the time…. So here I am. We’ve been together for three years, and I have to tell my husband that I swear that there was a time in my life where I was “normal.” I’m always achy, have crazy GI issues (not great for our sex life), my skin does insane things, and I alternate between raging irritability, anxiety, and depression. Basically, I’m not much fun to be around. We can’t eat out with friends. I don’t do fun things with my daughter. My life revolves around food and my stupid body. I just want to crawl in a hole and stay there. I started my gluten trial 11 months ago after realizing that the host of symptoms that I was experiencing weren’t normal and could potentially be diet-related. I mentioned the idea of cutting out gluten to some nurse (who, in hindsight, didn’t know jack!) and she told me to go ahead, “cut it out for four weeks and then reintroduce it and see what happens.” Then I could “‘call back’ and they’d enter a gluten allergy into my file.” Yes, she seriously said that. And in my naiveté I followed her advice—little did I know that any attempt at an actual diagnosis would be thwarted from there on out. Anyways, I was diagnosed with Salmonella after eating a bag of recalled lettuce in 2010. But other than that, I’ve always had an iron stomach. Nothing fazed me. But over the past four years my health has gradually deteriorated--and this has been so gradual a process that I can’t even pinpoint any onset, and I never even realized that what was happening to me wasn’t normal. [in case you’re curious, here’s a list of some of my symptoms: Neurological—anxiety (dx); depression (dx); irritability; brain fog; and memory problems. General—chronic rhinitis (dx); chronic sinus infections (dx); headaches; joint pain; weak dental enamel; fatigue; chronic dehydration; UTIs; dysmenorrhea (abnormal periods); night sweats; and water retention. GI—nausea; insatiable appetite; chronic diarrhea (dx); hemorrhoids (dx); painful gas; abdominal pain; and bloating. Skin—keratosis pilaris (dx); geographic tongue (dx); dark circles; adult onset cystic acne (dx); dry skin; eczema; and strange petechiae like rashes that look like I’m bleeding under my skin on my legs.] I do yoga. I’m a runner. I eat organic. I don’t eat processed food. I haven’t had fast food in over a decade (literally). I’m 5’6”, and depending on my water retention, range from either 112-120lbs. I’ve always considered myself a healthy individual. But over the past few years that notion has been destroyed. It finally took my husband, my daughter, and my family calling me out on my “antisocialness” to realize that something was wrong. I would seriously rather lie on my bed or sofa in my sweatpants than go anywhere, do anything, or see anyone. My stomach pain interfered with my quality of life that much! It was like there was a war going on inside. And my previously clear skin looked like a 16-year-olds! It was humiliating. I tried everything for that—clarisonic, topical antibiotics, prescription retinoids, creams, washes, masks, birth control—all to no avail. Over time, I guess I just assumed that multiple loose bowel movements a day was normal; that the stomach gurgling, gas, pain, and bloating were just unfortunate; and that the acne was just hormonal [P.S. That went away as soon as I cut out dairy. Quel surprise!] At that point I was desperate. I did a bunch of research online, and I decided I’d try cutting out gluten like the nurse suggested. And it helped! And when I cut out dairy a few months later it was like heaven on earth! All of my symptoms either went away or started to go away. And when I reintroduced either of them, all of my symptoms came back; so I knew something was up. I’ve since learned that I can’t tolerate dairy or gluten (all grains except for rice, and especially not corn). And it’s been do-able. Not fun, but do-able. [i used to consider myself a “foodie,” but not so much anymore]. The problem is, my husband and I are pushing 30 and we want to try to have another kid soon. Since I’m nervous about having such a restrictive diet, potential allergies, or a serious disease, as well as the impact that my health could have on a child, I talked to my PCP about it and she suggested that I see an allergist and a Gastroenterologist. So I did one more reintroduction test (wheat only) just to make sure, and lo and behold, my body freaked out! Except this time I got a crazy rash that I’d never had before (which four doctors haven’t been able to visually identify). That was in February. In March I did a second reintroduction test (again wheat only). The dumb rash came back. So I went to an allergist. She did a full food allergy blood panel on me and they all came back negative. She also did a Celiac panel on me and that came back negative too (though it’s no surprise since I had only eaten one serving of gluten/day for four days, and had been gluten-free for nine months prior). My PCP told me the blood work means nothing because of that. Anyways, a little over a week ago I got sick again, only this time, it was on accident. And the dumb rash came back, except it's spread more this time. My stomach is freaking out, I’ve had diarrhea for ten days, blood in my stool for three, and am passing undigested food. Basically anything I eat goes right through me. I’m starving, dehydrated, and look and feel like death. I saw my PCP and she said I need to go in for a colonoscopy and probably an endoscopy. I’m scared, frustrated, tired, and feel sort of crazy. I’m so tired of feeling like this! I don’t know what I’ll do when the GI tells me that I’m going to have to start eating gluten again! If I could hide I would. So this is where I’m at now. I truly appreciate those of you who took the time to read this! I just know I need to stop relying on my husband as my sole support because it’s not very healthy, and my family just doesn’t understand. Any words of advice, insight, or comfort would be much appreciated! Shannon Gluten-free since May 2013 DF since Sept 2013 Grain free (excl. rice) since Sept 2013 Allergy testing (negative) Mar 2014
  23. Hey everyone, this is my first post about becoming gluten free, or really it's my first time ever talking about it. I guess I'll start with the fact that I was on the verge of tears when I was reading my vegetable broth that I had bought for my dinner tonight to find that it had wheat in it. Thats when I decided I needed a little support. It's very hard to transition in the beginning and I have had a very hard time getting any support. I constantly have to bug my sister and her boyfriend, whom I live with, about keeping things gluten free like dipping their regular chips in the entire hummus container or not eating my gluten free treats I buy. Constantly getting picked on for being "difficult" or "expensive" to buy for doesn't help either. And they constantly question whether I'm telling the truth. I'm 17 and just discovered I was gluten intolerant. I have had severe anxiety and digestive problems my entire life and finally have gotten rid of those problems (still have anxiety but not as bad). My intolerance seems to keep getting worse also. Before If I would come in contact with something with gluten in it I would get a bit of a stomach ache, bloating and such. Now I get all those problems and extreme itchiness. I break out in welts and it is awful. Ive also lost a significant amount of weight and am suspect Im becoming malnourished. Not having a lot of money to buy a bunch of gluten free things has taken a toll on me and I am also a vegetarian to top it off. So ending the tangent, does anyone have any tips to make this easier on me and also does anyone have any idea what vitamins or supplements I should add to my diet?
  24. d33dee1988

    Celiac At Work

    Hi All, I'm looking for some input about an on-going situation I've had at work. When I started at my job about 2 years ago (I'm 25) the lady that trained me (my predecessor) indicated that it would be my responsibility to pick up bagels for the office every friday morning. I've always kind of resented this part of the job, though I've come to a point where I understand that things like this are an element of many entry level positions. I dislike bringing these bagels in my car every week, because I've definitely gotten crumbs on the seat and floor that I'm not sure I will ever be able to get out. It's not a big deal, but it lends to my general sense of gluten-related anxiety, which can be fairly oppressive at times. Since then, I've been promoted, but I still pick up the bagels every week. This is sort of an unspoken expectation. Everyone at work knows I have celiac disease (and generally I think they think I'm sort of nuts.) I've had conversations with co-workers where they've said "what will really happen to you if you eat gluten." This is awkward, because it's a complicated answer. My sensitivity to cross contamination seems to fluctuate with my stress levels. I've accidentally picked up/sipped my boyfriend's beer bottle before (when I had a redbridge right next to it) and ended up totally fine. Other times, I've gotten SO sick (joint swelling, hives, bad poops, fatigue, fog, etc.) from eating "gluten free" at restaurants or my dads house (I'm not sure how good he really is about checking things/cross contamination.) Anyway, my boss gives me an amex giftcard and I've resigned to picking up the bagels every week. It's really fine, except when I run out of money on the giftcard. My boss will sometimes take weeks to get me a new card. In the interim, I end paying out of pocket for these stupid bagels because people get upset when we don't have them. I always submit the receipts to accounting and get reimbursed, but I'm starting to think my boss purposefully delays giving me a new amex giftcard. He'll wait weeks and let me pay out of pocket, then when I finally get fed up and come in to work without bagels, he'll hand the card over that day. I don't understand why he's difficult about this, because it's not like the bagels are free during that time. I'm still getting reimbursed via direct deposit. On principle, it bothers me to pay out of pocket, wait for reimbursement, and complicate my weekly budget when I can't even eat the things. Am I being a brat here? Input appreciated.
  25. I find that this diagnosis is, in turn, both a blessing and a hindrance. We all know that one person who seems to be virtually allergic to everything, well, I am that person. I have an allergy list that is a mile long and all my friends think they are going to kill me when I come over for dinner. I have never been able to loose much weight, even though I eat a pretty balanced diet and hit the gym a few times a week. I have never been one for snacks or fast food. And, now, on top of a really restricted diet already, I find that I can not eat gluten either. While this is sad, I find that I have a bit of a leg up on most people. I am used to a limited diet, having to inform people of allergies, getting into those awkward situations at Thanksgiving and other get together when you inform people that the food looks wonderfull but it might just kill you or cause you to have a not so pleasant day.... My doctor has told me that I might actually loose some of my allergies after I give my body a chance to heal. I hope, beyond hope, that this is true. He believe this mainly because most of my allergies are intolerance ( I just call them all allergies because it saves me time explaining the difference to people). And once my inerds heal, I may find that my body will be able to digest them again I am currently on day 6 and I have never wanted a piece of bread so bad in my life lol. I am not even overly particular to bread, but, by golly do I crave a piece. On the bright side, my head is feeling clearer, I have lost 2 lbs, and my pants seem lose, and my face less bloated. I never really realized how much stuff had gluten in it. But I am glad that my Doctor was finally able to find out what was wrong with me. I am so glad that this site is here. I have read so many stories. I feel that they have inspired me for my journey with getting off of gluten and adjusting to its lifestyle. They have also given me hope that I can beat this bread craving I have developed. lol For the time being, I have thrown out my loaf of bread, bought some gluten free pretzels, and am munching on a few here and there in hopes of tricking my craving lol. My question to you, how have you coped? Whats a good tip to keep in mind? Thanks