JennyD

I really appreciate all of your advice and motivating words, this really is very helpful. I think I need to get better at being assertive before I get into a situation and stop feeling like I need to accomidate folks lol. I know that sounds silly but this has been a huge adjustment for me. I will keep posting and again, I appreciate all the positive encouragement. This will get easier  

Hi, I am new to the forum and somewhat new to Celiac. I was diagnosed in January of this year. I’ve got a couple questions and some venting I need to do. I’m not sure where to start, with the feeling of isolation, or the feeling of having all the pressure on my shoulders with every meal when we travel/eat out while watching my dining companions get more and more frustrated with me, the anger that rears its ugly head from time to time, or the incredibly frustrating process of healing and learning to cope with and accept Celiac.

Don’t get me wrong, I am thankful for my diagnosis; I am now 28 and spent the last 20 years of my life ill with “mystery” symptoms that would come and go. Doctors never could figure out what was wrong with me and I was always dismissed and told I was fine when I was clearly not. I am really thankful to know what is actually going on now after years of struggling with feeling terrible, but it is still quite frustrating learning to cope and live again for both me and those around me.

I guess my questions are…

1. Does it get easier? I’m sure it does I am just having a hard time seeing a light at the end of this frustrating tunnel.
2. My boyfriend’s family is incredibly unsupportive and do not listen to me or read any of the material I give them about Celiac, it’s not that they don’t care; they just take the attitude of “we know better”. Any advice for dealing with people like this? We typically go there for holidays and they come by the house a few times a year.  Just this last week my boyfriend’s mother house sat for us while we were out of town, I gave her instructions on how and where to store her food along with more material and long long conversations about do’s and dont’s and why things are this way. When we got back I had wheat thins all over my counters, Oreos on top of a knife set (not sure how she managed this) and open containers of gluten-y food in my refrigerator… I was so upset and infuriated by the lack of consideration and I’m not sure how to approach this. I ended up sick for the better part of last week, I’m fairly certain that my hours of cleaning didn’t get rid of all the cc in my kitchen, I want to point this out to her but do so in a constructive way.
3. Does anyone have any tips on dealing with glutenings? I get terrible brain fog and fatigue; I’m essentially useless for about a week. As of now I do plenty of water and walks throughout the day to help with joint pain.
4. How do you all deal with impatient friends when eating out? We travel a lot and I pack as much as I can with me but inevitably we end up eating out at some point. We were in Vegas last week and the restaurant we were going to was booked so we had to change out plans. I had one of our party get quite impatient with me while I located another restaurant that I could eat at and feel safe about it. I am so over sensitive about this that I find I just get frustrated in these situations instead of being assertive, help lol…
5. I have a gluten eater in my household, so far we have been successful to avoid cc (minus when his mother threw it all over my kitchen), any extra advice on this topic is appreciated.
6. Any advice for the holidays? To this point I have been pre-cooking all my meals and bringing them with me on trips to families’ homes, I have not yet gone through a holiday season with Celiac however. I have family that wants to cook for me but that makes me incredibly nervous with some of them. How do you tell someone you don’t trust them to cook for you lol, this seems so… rude doesn’t it? At least it does to those who havent listened or read anything about Celiac.

I think this is It for now, thanks in advance for your all’s help. Just reading through others’ struggles and stories has been a huge help so far. Sorry for the novel lol.

A friend of mine reccomended this website when I was diagnosed with Celiac: Open Original Shared Link

Its been fairly helpful, though I would reccomend using it in conjuction with the Find Me Gluten Free app so that you can read other celiac/gluten intolerent reviews of the restaurants. If your not familiar with the app, you can download it free on any smartphone and use your GPS location to find gluten free restaurants near you, there are typically reviews and ratings for how well or poor the place actually handles orders and cc issues. It's been a life saver for me.

Best of luck!