Ok…the good news is that I am dedicating time to go thru all of the emails I’ve received the past month. The not-so-good news is that I have A LOT to go through. Like a real lot. If you’ve emailed me for advice/guidance/whatever, I’ll do my best to get back to you. If you’ve emailed me asking me to diagnose you, sorry, but you need a doctor, not a blogger.
Here’s an email from a fellow celiac and it has a line I love so much, just wanted to share it with you all on this sunny Friday morning.
I was dx about 5 years ago at age 40ish. Like a lot of celiacs, my gut reacts to more than just gluten. The list is long and growing (which is worse because you never know what ingredient was the latest culprit). I loved your what three things do you miss blog. I’m just recovering from my latest exposure to something (lousy potato starch is the culprit this time) and after several days of pain and severe bloating to 7 months prego – like I said to my husband “I need a vacation from myself!”
I am lucky to have an extremely supportive husband and family. My friends are awesome too. I’m grateful for my dx versus the unknown years of suffering. I’m even happy about the fad gluten-free life-stylers who have made eating gf more common.
It’s just that some weeks when you have some reaction, you just really wish you could have that vacation from celiac and all it brings.
Thanks for your efforts for the celiac community.
“A vacation from myself.” Yes…this. A thousand times…this.
I’ve said it so many times in the past: celiac sux but for the most part, it’s manageable. And not by expensive drugs or therapy, but simply by food. So in the context of some other diseases, let’s face it…it could be worse. But the one thing about celiac is that it’s constant. If on a given day, you feel great, you still need to think about every morsel of food you put in your body. It is what it is, but it can be tiresome.
So yeah…a vacation from myself sounds pretty darn good. I’m off to find my happy place.
Where should I go??
You could go to Denmark with Jennifer! I would love a vacation from celiac! Or even just a few days where I could eat everything but gluten. It is totally unfair that some fruits and vegetables or sometimes I think too many fruits and vegetables have me running to the bathroom over and over. Sigh!
Perfect! A vacation from myself. And I am relatively sure my family and friends would enjoy that, too.
I’ve found that I can take a vacation from my illness. I go to Walt Disney World for a week and order from the gluten free menus in their restaurants.
It’s as close to a vacation from my illness that I can get.
I’m sorry you have been feeling ill so often. I wonder if you may be dealing with frequent cross contamination at the restaurant level or from pre-packaged foods. I struggled for years after being diagnosed with Celiac disease and on what I thought was a very strict gluten free diet…I called restaurants ahead of time and spoke with the manager/chef to ask my questions-had only a select few I would frequent that seemed “safe”, ate a balanced healthy diet with some packages foods that were labeled gluten free. Then, I realized about a year and a half ago that I was being glutened much more often than I thought, and it was causing my “bad days” or “bad weeks”. Food that wasn’t certified gluten free can sometimes be an issue (for me it was) and a whole food diet with a select few certified packaged foods was the way to go for me. I haven’t found any local restaurants than can get the GF thing down (in my area at least, might not be the case for you), so I stopped eating out. You may benefit from trying this and making your own food for a period of time, say 2 months, and see if you stop having those bad days. You could try a whole food diet. I hope you have been feeling okay since you posted this, I see it was a little bit ago at this point. Sometimes I feel like I want a vacation from Celiac too..ugh! I wish you well! 🙂
My wife has celiac disease and eats nothing but, gluten free foods. She’s terrified to go any where to eat unless it’s at our house. She very concerned and should be of cross contamination. I eat out by myself two or three times each week with her approval and support. It’s almost impossible to go anywhere for a long period of time, we haven’t had a vacation in over five years. Do other couples experience the same problems? The bottom line we have NO SOCIAL LIFE. What can we do to improve both our lives as a couple? I hate to say it but, will we ever have a life together? Any comments or suggestions will be appreciated, I need all the tips possible. Thanks,
Hi Gerald,
I don’t know if this is an option for you, but have you thought about moving to an area that has 100 percent gluten free restaurants? I have Celiac and stopped eating out about a year and a half ago…my symptoms drastically improved right away, and I haven’t gone back to eating out bc I know now that I was clearly being glutened, despite all my efforts. Everyone’s body responds so differently, and from what I have researched, some don’t feel the effects of being glutened, though their bodies still deal with the consequences internally. Personally, I feel the symptoms and can tell very easily…symptoms I thought were just part of having Celiac and that I would just “flare” from time to time, went away. I was very very cautious and did everything possible, but the restaurants in my area just aren’t competent on gluten free. My husband does not have Celiac and already after this past year and a half we see how difficult it is to engage in social functions…next to impossible. He also stopped eating out and we have really taken to cooking- it has become a fun hobby, but would still be great to go out sometimes…we used to frequently. So, we have considered and still are considering making a move. Another idea…if you are into camping, a camper outfitted with a kitchen can make it easier to go away for the weekend, week, etc.
Hope this helps!
Heather
I don’t know what kind of community you live in, but in some areas there are gluten free support groups that would give your wife some outside contacts, and might be a way to develop some new social contacts. That is, if you can stand all the celiac talk. (We’ve been to a couple of banquets put on by a local celiac organization. I’m the celiac in the family, and my wife found all the table talk not very interesting. But it sure was good to be able to eat anything served without worries.)
If you haven’t already, go to the “Forums” section of this web site and read through some of the stuff there. On the “Travel Success (& Horror) Stories” forum there is some stuff that may be of interest, in particular the thread on “Cruises”. I’ve been very happy with the food service on some cruises we’ve been on since I had to go GF. People who have been on Disney cruises have been impressed with the handling of GF diets (and I’ve also seen high praise for the GF food service at the Disney parks).
There are many gluten free travel options. Airlines can usually supply gluten free food on international flights. There’s a company, Bob & Ruth’s Gluten-free Dining & Travel, that has lots of trips, and they do the heavy lifting on getting the gluten free food. We haven’t traveled with them yet, but I intend to. There’s a resort in Costa Rica called “Arenas Del Mar” that has trained kitchen staff and has certification from some celiac group (read the details on their web site; the owner’s daughter has celiac disease); they even do some totally gluten free weeks at the resort from time to time. (I haven’t checked, but I think they’re somewhat pricey, though.) Here in the blog you’ll find a couple of descriptions of Gluten Dude’s outings to the Caribbean with family groups where they had a private chef in a large rented house and he had gluten free food without worries.
More and more gluten free information is becoming available online. Somewhere I ran across a company “Gluten Free Travel–Us” that does trip planning for GF trips. Another trip planner is “Crafted Ireland”; they have a GF itinerary they could set up for you and your wife. The app and website “Find Me Gluten Free” can be helpful in finding safe places to eat; it’s not the only source of info on eating gluten free in various places. Researching possible travel destinations on the web is worthwhile. For example, Google “San Diego gluten free”– you could spend a week reading through all the information that turns up.
I totally get what you and your wife are going through. My husband and I would have no social life, either, if I hadn’t learned to pack my own GF food to take with me wherever we go. I have even brought food to restaurants. When they tell me I can’t bring in my own food I show them the script my doctor wrote me that says “must have gluten free food only … Celiac Disease”. Then I ask if they can 100% guarantee their food is 100% gluten free. None can. So they let me eat my own food. If they didn’t, we would leave. My husband is the non-celiac. He refuses to be gluten free at home and refuses to eat most gluten free foods I cook. I refuse to cook gluten food for him so he eats a lot of fast food. It isn’t always easy to either be a person with Celiac or live with one. But, if you love each other enough, you will learn that there are worse issues that could be faced besides food issues, and you will carve out a new way of life together. Road trips can be taken easily. Pack a cooler and go. There are great GF protein bars out there she can put in her purse. There are many times I have watched the people we are with eat, drink and be merry while I ate before we went, and just skipped to the drink and be merry part. Compromise and adjust. Life will be different. But it can still be good.
I know what you mean about no social life. I was diagnosed with celiac in January and have struggling with the same issues. Eating out is/was such a big part of our social life. My solution is to invite people over to our house where I can control the menu and preparation. It is a lot of work, but so worth it. We still get to socialize AND I can eat along with everyone else. As far as travelling, I was worried and hesitant to go anywhere. I had a week long workshop to attend this summer and so dreaded having to eat away from home that I almost cancelled. All meals were included in the workshop and when I got there and saw the huge buffet tables with shared serving utensils, etc., I knew I couldn’t risk it. Instead I found a great heath food store nearby, bought fresh fruits, vegetables, hummus, and coconut yogurt, along with freshly prepared salads. I filled my hotel room fridge with these groceries and ate breakfast before I left each morning. I packed my lunch with fruit, veggies & hummus, yogurt,and grain-free granola, protein bars, and grain-free crackers that I made at home and packed along with me. I also found a farm-to-table restaurant in the city that had a nice gluten-free menu. It is doable! Good luck. 🙂