• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Am I Unreasonable?
0

7 posts in this topic

My family is planning a long car trip. On the forum, people were discouraged that my family would choose to eat at a restaurant that I would not eat at. Traditionally, we have eaten out atleast 1 time a day on our family trips often twice. We have 7 people in the car, and a car oven that can perhaps accomodate food for 2 people at the most. At our destination, we have booked a hotel that includes a kitchen, so we will eat there. What else can my family do?

At home we got all of the gluten out of the areas I use in the kitchen. My family no longer makes gluten containing foods in my house. My family tried to find eating places that could cook for me. Jason's Deli has gluten free, but when I was there once, they actually told me they couldn't guarantee it was gluten free! I have seen places with "gluten free noodles or chips." I can't eat those either since I am not tolerating grain.

I saw a post on the Five Guys burgers and was so impressed, I was ready to go. Five Guys Burgers was also mentioned by my chiropractor, who is gluten intolerant, and had a safe experience there. Then someone on the forum reacted to going to Five Guys burgers and I didn't want to try going there either. Basically, I am refusing to go to any restaurant.

I am 6 months into grain free. I have feelings like I am just beginning to really heal. I am on a rotational diet besides. I was 30 years with symptoms. I have been feeling good. I am going to be away from home and needing energy.

Does anyone blame me for being so careful?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


When I travel, I always pack my food and get a hotel with a kitchen. My family might get sandwiches and I just go in and get iced tea and eat my stuff. Sometimes we go to Wendy's and I get a Frosty and don't feel left out at all. I make sure I have something I really like, like Fritos, in case I feel left out. Often we just pack picnic stuff. I will get packs of cold cuts, chips, fruit, carrot sticks, make gluten-free cookies, fruit snacks, drinks, etc. they have gluten bread, so I pass out the cold cuts and cheese & fruit, etc to paper plates and they handle the bread. It's cheaper than eating at McDonalds and healthier as my family will eat fruit or carrot sticks in a picnic but not at McDonalds. It's not relaxing as I have to keep passing out more grapes, etc but it keeps everything gluten-free.

Sometimes I put a few carrots or grapes in little baggies and label them with a big K. Then I have my safe carrot sticks and they can gluten up the bigger bag. This might work best with so many people.

You could get a little camp stove. Mine is big enough to make 4-6 burgers at once or many hot dogs. You could grill out lunches or at the hotel along the way.

Got interrupted by 16 yr old boy seeking food!

If it doesn't bother you to either watch the others eat at a restaurant or stay behind in the hotel or car, then do it. With that many people traveling, it might be nice to have a half hour of quiet! I know when I travel with 40 teens for Robotics, I enjoy staying back from dinner in my room and eating a snack dinner ( nuts, crackers, fruit, etc)

Edited by kareng
0

Share this post


Link to post
Share on other sites

Diana,

I just posted about this little food warmer. About $20 and I have seen them at Target in the last week or so. You might be able to get a car adapter and plug it in in the car to heat some soup or casserole for your trip. Freeze portions before you go so they will last a few days in a cooler.

1

Share this post


Link to post
Share on other sites

Protecting your health is NEVER unreasonable. Do whatever you have to do, and if others don't understand that is their problem.

1

Share this post


Link to post
Share on other sites

No, you're fine. Everyone has different levels of carefulness they need to practice, so they don't get sick. :)

0

Share this post


Link to post
Share on other sites
Ads by Google:


It's your choice. A pain, maybe, but your choice. I do think, however, that means you have to figure out how to pack/travel so that you can have enough food, even if they choose to eat out too. For starters, I would suggest a roof rack!

1

Share this post


Link to post
Share on other sites

I am very sensitive and I can travel now. I have a small microwave and a cooler that plugs into the car that I can also plug in at a hotel. I am pretty much healed and have my diet figured out.

I can see how during the healing and figuring out process it would be difficult to travel. You need to give your health the importance that it deserves. Others need to appreciate the importance of that. The next trip might be better for you.

1

Share this post


Link to post
Share on other sites




Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,378
    • Total Posts
      935,770
  • Member Statistics

    • Total Members
      65,070
    • Most Online
      3,093

    Newest Member
    Catseyez
    Joined
  • Popular Now

  • Topics

  • Posts

    • The full celiac panel includes: TTG IGA TTG IGG DGP IGA DGP IGG EMA IGA   You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works. Good luck in your search.
    • You could certainly try.  Just remember that, if the mix doesn't have xanthum gum, you may need a little.  
    • Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works. I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.    I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress.  Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal.  I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean! Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds.   
    • I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
    • Reviving this thread as I am in search of better care for my child, diagnosed this spring with off the charts antibodies. She experiences significant mood effects from gluten and all I get from her GI and ped are blank looks - they aren't familiar with the idea that it can affect one's mental or emotional equilibrium or brain. (I would bet that if we scanned her brain, there would definitely be some evidence of damage.)  Obvs we have her 100% gluten-free and are very cautious, but given that even the slightest glutening sends her into despair and suicidal ideation, I am looking for a doctor that *does* understand the connection and can give us better guidance so I can feel more confident that she'll stay safe until her gut heals. Any recommendations (in SF bay area, or anywhere really) would be welcomed! 
  • Upcoming Events