Googles

I found a sign at one store that had been put in the wrong place (on a food that was obviously not gluten free). I pointed it out to a store employee who didn't seem to care. After that I ignored all those signs. I'm sorry this happened to you. You should let the store know if you haven't.

As you are 19 I would suggest going back on gluten (as soon as possible) and get the testing. If you are in college or want to continue school, you will need the official diagnosis for accommodations. There are also work places that may require this also. You don't know where you are going to end up, so it would be good to have this.

Hello.

I have the same worries. Since the lesbian dating scene is already so much smaller than the straight dating scene it makes it a lot harder. I'm afraid I wont be able to find anyone who will be willing to go gluten free at home which I am going to need to have that to stay healthy. And how do you deal with things with like the other person's lipstick? Please pick one that is gluten free (here are some options) or wash it off if you want to get close to me? How do straight guys do it? Anyone?

Do you have to put on the website that you eat meat? Are people avoiding your profile even though you don't have this information? Do you have a friend who could look over your profile and let you know if there is anything else you can change? If there are meet up groups where you live (or something similar-some are glbt specific) I would suggest trying something like this as then people will get the chance to know you before the issue of what type of food you eat comes up.

Good luck.

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.

Hi.

Your situation really sucks. It sounds like there was miscommunication here. (Thought during the meeting with the boss that was just plain rude). Sadly, there are steps that are required to get accommodations. You can't just come in and say that you have something and go about what you want. If the childcare facility has an HR department that is who you want to talk to. You want to bring in a letter from your doctor stating that you have celiac disease and what you have to do to stay healthy. Then you talk with your employer about accommodations. Just going and doing it on your own, while makes sense, isn't how the law works. Some places will be okay with that, but others will be sticklers and make you go through the whole process. It sounds like your workplace is one of those places. I would think they would have a staff lounge where you could eat your lunch away from the children and then wash your hands before going back to work with the children. If you are not diagnosed by a doctor (and your doctor wont diagnose you with the changes in your health) they you are out of luck. There is not protection required if you are not diagnosed by a doctor (which is why for some of us it is important to be diagnosed by a doctor). I hope you get this all worked out.

Addition: If they are being prickly about this they don't have to provide you with accommodations until you have officially met with them and provided them with the paperwork.

I had pressure/pain in that v spot below my rib cage when I had acid reflux. It made me feel so awful. Sometimes it felt like something was trying to burst its way out of my chest. I had this really bad when I would eat acidic foods (oranges, tomatoes etc) after going gluten free, and then again if I got glutened then I would be sensitive to it again for awhile. I hope you are feeling better again soon.

I have donated blood, actually only after going gluten free. I did feel weak the next day the first couple times. And still a little now. But I put up with it. Are you making sure to stay hydrated (both before and after) and eating well? Those are important.

He has picked the restaurant. I am going to call them, but I'm worried about eating out. He seemed to become very insistent that I don't bring my own food. He said it would make him uncomfortable if I brought my own food. How much should I push to bring my own food. If I don't feel safe, should I just get a drink and leave it at that as I know he wont make a scene?

I am finishing up my internship. My supervisor has been great during my internship. However, a problem has arose. He wants the interns to go out for dinner before we all leave. He wants to take us somewhere that I can eat because he knows about my celiac. I told him not to worry about it and that if I didn't feel like the place he picks would be able to feed me safely I would bring my own food. I don't think he quite understands the extent of the sensitivity. I don't eat out unless I absolutely have to (ie traveling). He pretty much said that he would feel uncomfortable if I brought my own food. I go out with friends to restaurants but I just get something to eat. I have to check out the restaurant he wants to go to, but I am worried if they can't provide something I can eat. I can just do what I do with my friends which is order something to eat, but that might be awkward. While I am leaving this internship I may end up working here and having him as my supervisor again in the future, so I can't burn this bridge. Any advice would be appreciated. thanks.

First of all, let me congratulate you for your achievement. Remember, you did it for you, not your parents, so enjoy it for yourself.

Now, for the scolding (gentle and loving, I promise!). If the real issues have nothing or little to do with your celiac, please don't use celiac as an excuse. Part of the issues we gluten-sensitives have with the general public is the perception that we are using celiac as social or psychological crutch.

If you are ambivalent about your field of study, or your family's lack of concern, please work through those issues directly. That is far more productive than throwing celiac in as a red herring. To your credit, you recognize that you are doing that and admitted it.

Now, go out with your friends and celebrate your achievement!

Excuse ME! I can be pissed about more than one thing at a time. I can be frustrated with Celiac which I'm usually pretty good at dealing with most of the time. But it is much harder for me when big things come up. I can deal with the questions at pot-lucks when I bring my own food. I can deal with having to do extra planning when it comes to eating out with friends. But sometimes I just want to be able to enjoy myself like everyone else.

At the same time I can be upset that my parents aren't coming. I can be upset about two things at once.

Some people not only take hours to react, they can take a day or more. I think I respond in about 24 hours.

Yes, I also have a recurrence of joint pain, anxiety, neurological issues, cognitive impairment, insomnia and a major swing in moods when I am CCed. I hate that part the most.

I call it the return of the seven dwarves: weepy, cranky, racy, spacey, dopey, angry and achy.

Not my personality at all to be in such a funky mood and this is how I know I have been "hit".

Drink a lot of water and ride it out.

Tell yourself you know what it is and that you're going to get past it in time.

Hope you feel better soon!

This is totally me too, though I get depression (really really bad) instead of anxiety (at least hardly ever). Though there are some times I get anxiety. I find it much worse than the GI symptoms I get.

Thank you all for your replies. I think to some extent the food is an issue, but really it is a lot of other stuff going on as well. It is just easier and simpler to be frustrated about the food. It is easier to be frustrated about the food rather than angry that my parents don't think it is important for them to come to my graduation, another major accomplishment that they are missing. That coming to this program was probably the worst decision I have made. (Though I am so thankful I am done with it). That I am terrified that I wont be able to find a job. It is so much easier to be frustrated with celiac than have to face all of the rest of this. Thank you all for the support.

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.

I got diagnosed at a major north eastern hospital (world renowned). So you would think that the doctors/dieticians there would know about things. However, when the GI doc told me about my celiac diagnosis it was over the phone (and sadly 15 minutes before I was supposed to start an overnight work shift). She told me the diagnosis and that was it. Then she sent me to the dietician. The dietician had a list of gluten free foods (that was out of date- I pointed it out to her). I asked her if she could help me any more and she said she could not. I learned everything I know about celiac from this board and other on-line resources. That the dietician couldn't help me at all made me really angry. And the dismissal of the diagnosis by the GI doc since there was nothing she could do about it. Like it wasn't important since it was just changing how I eat. That it was some simple thing to avoid gluten (which we all know is not true).

I have dermatitis on my face and something on my scalp. I also get dry hands and have these little red splotches with darker red dots in them. I have never had those identified. I use something called protopic for the dermatitis when it gets really bad. I am lucky that most of it doesn't bother me (I actually have to look into the mirror to tell if there is dermatitis on my face). But the meds make my face burn, so I try to avoid using it.

Thanks both of you.

So I have decided it is a gluten reaction with a few other possible things on top (including sinus infections), the typical gi symptoms started today. I had been mostly pain free for five years on the back injury, so it really sucks having the pain back and not being able to move without pain. I hope that I don't have to go back to physical therapy as I don't know how I would pay for it right now. Maybe I have some of the stuff they gave me last time. With this pain I can't lift anything heavy (ie over the weight of a gallon of milk, and I have to be very careful with that). Last time I reached the point where i couldn't sit for more than 15 minutes at a time. I can't end up at that point now. Ugh. I wish my symptoms would stay the same as they were when I first went gluten free, they seem to change so much from glutening to glutening.

I am feeling awful. I am having aches and pains in my joints and muscles. I am feeling tired. My back which I injured about six years ago is inflamed (to the point that any movement sends shooting pain). But I'm not having much (though there is some) GI issues. I don't have a fever, but I have had a sore throat and have a headache (which might be allergies). I can't tell if this is a gluten reactions (which I have no idea where this would have gotten in) or if I'm sick. How does one tell the difference? I took some dayquil, but it didn't help at all. How do I tell the difference? Has anyone had previous injuries become problems again when they are glutened?

Thanks.

I'm sorry your family is being so awful.

I also get suicidally depressed when I get glutened (and anxiety sometimes). It helps me when I realize it is the depression and not my clinical depression returning with a vengeance. Then I know it is going to stop. I didn't know other people experienced the same thing. Have you tried providing your parents with written documents talking about the sensitivity of people with celiac disease? Sometimes it helps for families to see information from other sources than their family member with celiac (yes it sucks that they wont listen to us). Then it isn't just us telling them how sensitive we are, it gives proof. Another thing I do is I will still go out with friends/family but I will eat beforehand or take food with me. If I don't take food then I will just order pop when people order their food. That way I'm still being social but not risking glutening. Stand strong with them. If you give in, they will expect you to keep giving in. Hopefully as they see you getting better they will realize that you need to be this careful.

I get their hot chocolate with whipped cream all the time. I have never had a problem with it in the last almost three years (since my diagnosis) (well, unless it is not hot enough for me because I forget to ask for it extra hot )

You need to get your parents involved. You need to tell them about your fears about them putting gluten in your food. This is not a small issue. This is a BIG issue. The exposure to gluten causes your risk of long term consequences to increase. While the reaction to gluten isn't as fast acting as peanuts (and unless there is an allergy on top of the celiac) will not cause anaphalaxis, it doesn't mean it is any less important. Tell your parents. It is your parent's job to help protect you. I know it can be hard for teenagers to ask for help from their parents, but you need their help. This situation has gotten out of hand. Don't only talk to the youth minister, talk to your parents.

I spent two years after diagnosis living by myself. So my apartment was gluten free. This year I had to have a roommate because of financial issues and so I live in a shared kitchen (a very small one). She is not here most nights (she spends the nights w/ her boyfriend) so it isn't as bad. But I have been glutened more this year than I was in the previous two years combined. I can't wait until I am able to live on my own again and have a gluten free house.

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.

It isn't that I think he is wrong. I understand that he processes his thoughts out loud. And he wasn't trying to be dismissive. It is just the emotional reaction that I was having. I guess since so many people are "gluten light" and are like it is just the "diagnosis of the time" (I work in a field where there are diagnosis that go in cycles and so over diagnosis or misdiagnosis is a problem). I know that my emotional response to his comments are out of proportion to what he said and what he meant. But I still seem to be having an emotional reaction to his comments. I guess that is what I am more talking about. It is my emotional reaction to what he had to say, not what he had to say specifically. I grew up in an abusive family and my feelings and experiences were often discounted as me being over emotional or having unrealistic expectations (to not be abused). So I know I'm really sensitive to feeling like my experience is being discounted.

I'm not sure if dismissed is the right word. Sometimes when talking about Celiac with people (especially one person) they will bring up that the rate of Celiac (or it's diagnosis) has been increasing over the last 20-30 years. He will then say that it must have something to do with the environment (changes in wheat etc). I'm not challenging whether or not that is an accurate reason (beyond more knowledge about it) for the amount of diagnosis. However, when people say this it makes me feel like they are dismissing my illness. That because it is a change in the "environment" that is causing it, it is somewhat my fault for having it. That it isn't as legitimate of a diagnosis of illness as other people's illnesses. I know this isn't what they are trying to imply, but this is what it makes me feel. Does anyone else experience this or anything similar?