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Member Since 25 Jun 2009
Offline Last Active Aug 30 2015 04:11 PM

#938572 Chef That Wants Your Feedback

Posted by on 17 January 2015 - 02:23 PM


I just saw this thread. I have a number of issues. 

1) Trust: Being able to trust the restaurant that I want to eat at. That they aren't going to make me sick because they are doing stupid things. The one that blew me the way the most and has kept me from eating anything at their restaurant was when I went and they had their french fries on their gluten free menu (yay for me as I hadn't had french fries except ones I made in over 2 years) and when I was asking questions about them they said that while they had a dedicated gluten free fryer, when things got busy they would just throw everything in whatever fryer. But yet they had their french fries on their gluten free menu. 


2) Dessert. I want a yummy satisfying dessert that isn't ice cream. I love ice cream, but when everyone else can have cake and cookies and other nummy looking and smelling desserts and I'm left with ice cream, it makes me sad. 


3) Cinnamon rolls!!!! I have not had any good fluffy cinnamon rolls, I've tried Udi's and they just don't cut it though I love their muffins.. (I have cravings for Cinnabon cinnamon rolls). Everything is so dense across the board when it comes to baked goods. 


4) Being taken seriously.By wait staff and friends and the public in general. That we aren't asking questions to be obnoxious. That it isn't something to joke about. I want to be able to go out with my friends to eat and not have them feel uncomfortable because I can't eat with them. 

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#906854 Waiting For Reaction.

Posted by on 22 February 2014 - 02:08 PM

I am outside my regular reaction  time. So I'm going to assume that the processing got rid of the gluten. The bag that I had only said that the syrup was made from wheat (didn't give corn as an option.) But I feel like I got safe by  the skin of my teeth. A good reminder to always check labels.

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#803812 My Wonderful Dad

Posted by on 15 June 2012 - 09:26 PM

My dad was so wonderful today. I played kickball last week, tripped on a base, and felt a little sore afterwards and by Monday was fine. Then went again today and my legs were in severe pain feeling like my muscles were tearing and I needed NSAIDS to deal with the swelling. So I had to stop by the drug store on my way home as I didn't think I would be able to get back out to the store after I got home. I haven't taken any NSAIDS since diagnosis because up until this last year I was on medication that wouldn't let me take any, so I hadn't looked to find out which ones were gluten free. But today I needed one of them but it was after 5pm and the pharmacist couldn't help me even to tell me if the store brand had gluten. So I walked away from them crying because I was in so much pain. I called my dad and luckily he was able to get on a computer (I don't have internet on my phone) and check and find out what I could take. I talked him through how to check and see if a med was gluten free. It probably took us 15 minutes to get the search done and get an answer I was comfortable with. As I sat on the floor of the drug store. He is so wonderful to help me! I love my Dad! Happy Father's Day!
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#797659 Life Has A Way Of Playing Cruel Jokes On You...

Posted by on 22 May 2012 - 07:49 PM

I am sorry you are having such a hard time. I went through this when I was first diagnosed. I was so angry and felt like my body betrayed me. It does take time to adjust. Realize that in getting this diagnosis you go through a period of grief. Anger is one of the parts of grief. You will find foods that you enjoy cooking and like. I thought I would never find anything I ever wanted to eat that wasn't bland. But I have. It takes time to learn how to cook gluten free. Give yourself time to grieve. It is a major loss. Then work on finding things that you can create that you love.
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#795414 My Prediction

Posted by on 14 May 2012 - 08:28 AM

The only problem with that one is my mom works at my family Doctor and knows what my tests said =( of course she is only a file clerk but still

Hi Sacredblossom,
Are you over 18? If so, no matter what position your mother has at your doctor's office, she should not have access to your files. If something needs to be done with your files, someone else should be doing it unless you have signed a release for your mother to have access to your file. Your mother should not have access to your file, especially if it is causing problems for you. Talk to your doctor about this.
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#784801 Graduation

Posted by on 02 April 2012 - 11:59 AM

I am graduating from my MS program at the end of the month. I am trying to figure out what I want to. For a lot of complicated reasons I'm not sure if I am going to go to the actual ceremony. I have a lot of mixed feelings about graduation. This is the first major milestone for me since I was diagnosed(I was literally diagnosed two months before moving for graduate school). If I do end up celebrating with friends I know it will center around food. I know I shouldn't care if we go out to eat and I have to bring my own food to make sure I don't get sick. I'm so angry that this makes it so much harder. I hate food. I hate having to deal with it. I don't want to be an inconvenience to my friends. As there are two major graduations in my area the weekend I graduate, there wont really be any "non peak" dining hours. I definitely don't have the space or money to invite people over to my (very small) apartment to eat. I don't know what to do. I know we say on the board that celebrations (and social occasions) don't have to center around food, but that isn't really realistic in the society we live in. I want to be able to enjoy without worrying about what I am eating and be able to enjoy my food. I hate my life. I've always been a picky eater, not really cared about what was served (I could always get by on salad at dinners and such). But I was always able to eat something. And if I was going out somewhere for something for me, ie celebrating an accomplishment, there were enough places where I could find food I liked. So it was still special. Now I just feel bitter about food. Whereas before at least I had food I liked (even if it was somewhat limited), now I just want to be able to go back to enjoying food. Instead of having to plan and think about every single thing. I just want to be able to enjoy life and being social without planning everything around my dietary needs.
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#779257 Problems After Eating?

Posted by on 07 March 2012 - 07:25 PM

Does this happen every time you eat, or only when you eat those two products? If it is just those products it may be another ingredient (non gluten) that is bothering you. You should look and see if there is anything that is in both of them. Good luck figuring this out.
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#770702 Oh The Joys Of Contamination

Posted by on 03 February 2012 - 04:02 PM

If you are not already registered with your school's dissability office you should register with them. It is their job to help you with situations like this. With providing the staff with the training they will need to feed you safely. This is especially true if you are forced to buy a meal plan. They will be able to help you contact the right people to get things done. They are there to help you navigate this stuff. Get the help you are entitled to. They will know the ins and outs of this stuff.
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#761554 I Had Hoped To Never Return To This Place

Posted by on 01 January 2012 - 10:59 PM

I am so sorry you are going through this. I know that whenever I got glutened for the first year and a half after going gluten free I would have cravings for bread. Going to the store would make my mouth water. I can't say if you do have celiac or not. It is up to you to decide if you want to go gluten free or not. The only thing that made it so I could make through the transition from getting the diagnosis and going gluten free is that I was already in therapy. I talked about my celiac diagnosis with anyone who would listen. (not about the diagnosis so much as the food that I could no longer eat). Every time I found out a new food that I couldn't eat (for example that most soy sauce had gluten), I was telling everyone around me. I was telling my therapist, and my office roommate, and my house roommates. They were all supportive and allowed me to blather on about it. I don't know how many of them really listened to what I had to say after a while (besides my therapist), but they allowed me to get out my anxiety and frustration about the diagnosis and the life changes. I spent months of therapy session talking about my diagnosis and what was going on. I pretty much spent the first part of every session talking about what I had learned since the last session (and I was going twice a week). This lasted for at least 9 months before I moved and then when I started with a new therapist after I moved (I have other issues besides just the celiac diagnosis) it comes up from time to time again.

Everything below is about finding a therapist and advice on how to go about doing it if you want to.

As to finding a therapist if you want to my suggestion is to check out this resource: http://www.psychologytoday.com/ and in the upper right hand corner you can put in your zip code and it will bring up a list of therapists in the area. Then you can go to the left side of the screen and select under Issues, chronic pain or illness. This will provide you with a starting place for therapists in your area that have this experience. You can limit the search to specific insurance also. If you live in a small area, this might not be as helpful, but it is a place to start. Then just check with your insurance list to make sure they are still covered by your insurance and the specific policy you have. Your insurance will have a list of covered providers and all you have to do is call and ask for it and they will provide you with it. You may be able to get this list from on-line if your insurance has a website.

Other ideas for fining a therapist if you don't want to use the site above are: contact your doctor and find out if your doctor has any recommendations for therapists. They might have names of people they refer people to when diagnosed with chronic illness. If you work at a business that has an Employee Assistance Program (EAP) contact them. This is how I eventually found my therapist and psychiatrist. They will have lists of people. I met with the EAP person and told them what I was looking for and they did the leg work for me. If this isn't an option, whenever you do make contact with a therapist who does not fit what you need (they don't have the right experience or they aren't taking new patients) ask them for referrals. Tell them what you are looking for and ask them if they know of anyone who might be taking clients. The world of therapists is small. They often know other therapists in the area and refer people to others when they can't provide the services needed. If you live in a city with a hospital contact their psychiatry department. Tell them what you are looking for. If they don't have anyone with the experience you are looking for, they should be able to refer you. Just like looking for a new doctor in a city, looking for a therapist takes time and energy. If you live in a city with a university you can look and see if the psychology department at the university has their own therapy clinic. Often they do and provide low cost therapy. There are therapists who work specifically with people with chronic illness. Even if you don't want to talk about the celiac, it seems like dealing with the liver issue would be a good idea.

If you want to find a therapist and want/need more help let me know and I can provide you with more resources if these do not work out.
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#759459 Need Help Settling A Gluten Disagreement

Posted by on 23 December 2011 - 11:08 PM

Just remember to grab your own rolls before people start passing them around and possibly cc'ing them. As soon as they touch food with gluten and then the rolls, you have the potential of cc.

I also agree that you don't have to make an announcement of it. If they ask you can tell them, otherwise go and enjoy. It would be weird (I think) for you to bring (or them to expect) you to bring something you can't eat.
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#758699 What Is Your Worst Symptom When Glutened?

Posted by on 21 December 2011 - 11:08 AM

I was wondering what people's worst symptom is when you get glutened. I have been gluten free for about 2.5 years now. When I first started learning about celiac and what would happen when glutened I assumed that the GI problems would be the worst thing about being glutened. However, for me it ends up being the emotional dis-regulation and the insomnia. The two together just make me a mess. I end up being a weepy mess that can't control my down moods. What is your worst symptom to deal with when glutened?
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#755552 Homeless Celiacs

Posted by on 10 December 2011 - 01:32 PM

Some people in this thread seem to think that you can't become homeless after you get diagnosed with celiac disease. Just because someone at one point had the ability to see a doctor who could diagnose them with celiac does not mean that they can not become homeless, or need to get food from a food bank. A lot of people who work or have homes, still need help from food banks. There is a large percentage (can't remember the exact amount off the top of my head), of individuals (before the recent downturn in the economy) who work paycheck to paycheck. Losing their jobs can mean losing their housing or ability to buy food. I have faced the prospect of homelessness twice, once before diagnosis (after graduating from college and refusing to move back in with my severely abusive parents) and once after (when I moved for graduate school and could not find a job that would work with my school schedule when they said that you could go part time and work and yet had required classes in the morning and afternoon every day for the first year). The worst fear when I was facing possible homelessness after diagnosis and was trying to figure out how I would live in my car if needed, was what I would do if glutened. You say that people would just go back to eating gluten. Have you read the experiences of people who have done gluten challenges? How would you expect someone who is homeless, and hence doesn't necessarily have ready access to a bathroom, to deal with the D that comes with it for some people? Getting the effects of gluten for me would make it even harder for me to be able to get back on my feet. Not all people who are homeless are mentally ill. It really only takes job loss to make someone homeless. And it isn't like that isn't happening all over the place right now.
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#727990 Does Anyone Know?

Posted by on 05 September 2011 - 05:55 PM

I was wondering if anyone knew the mechanisms of action that causes ingesting gluten to lead to things like joint and muscle pain with one glutening. I could see over a long period of time, but how does it do it all at once? I don't know if this is known, but I thought I would just ask my question anyway.

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#727987 Sooooo Angry

Posted by on 05 September 2011 - 05:18 PM

I am sorry you had such a negative reaction from your practicum supervisor. I supervise students in a clinical psychology Master's program, and I can't imagine ever having that reaction to a student asking me how to talk to a practicum site advisor about a disability, gluten-sensitivity or otherwise. If you are in the mental health profession (which it sounds like, but I could be wrong), what I would tell you (as I would tell my own students) is that if you end up having a reaction in front of your clients, just be honest about it. People seeking help from those in the helping professions often like to know that their helpers are also human. You can model for them a healthy way of dealing with an obstacle, which can only serve as a help to them. As for your practicum site advisor, just be honest with them about it, and let them know that for the most part it can be controlled but you never know when that cross-contamination can happen, especially when there are shared food spaces. If you can be open, honest, and professional, then that's the best you can do. And if you ever have to leave a client because of a reaction, just use it as a teaching moment. As for your supervisor, maybe you should be asking him if he should be in his profession!

Thank you very much for your reply. It really helps knowing that there are other advisers out there who are more supportive of their students. I will take your advice when I talk to my practicum site adviser. I hope I get the same type of response you would provide to your students when I talk to him. Thank you very much.
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#727394 Sooooo Angry

Posted by on 02 September 2011 - 02:52 PM

I am so so so so angry. I went in today to talk to my professor of my practicum class. I gave him the dissability paperwork for the class, and then the letter that my case worker at dissability services wrote about my concerns for dealing with this in my practicum. This is the first time I've really had to deal with this in a work environment because I was diagnosed right before I left for grad school (after I had accepted the offer of admission and given notice at my 2 jobs). He is supposed to be there to help us negotiate with our practicum locations if there are any problems that develop. As such I was giving him more information that I would usually give to a professor about the rapid onset and asking him how I should bring this up with my adviser at my practicum. He stops me in the middle and is like, "are you sure you should be in this profession?" I had just told him that I hardly ever get sick, but that I need to be prepared for the worst case scenario (getting sick while working with a client). I don't know of a profession where this disease would not possibly be a problem, unless you work from home and have no deadlines. I work very very hard at not getting sick. How am I supposed to trust him to help if something happens if he thinks I shouldn't be working here in the first place? I don't know what I am supposed to do at this point. He even knew what I had when I had never even told him previously that i had a dissability. My department makes me so pissed.
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