Traveling w MC

[kimtg68]

Let me throw out there that I'm sooo new to this that whether I'm home or away I'm still messing up BIG TIME. But it does seem more difficult to travel while trying to learn to avoid Gluten. I'm in Colorado Springs visiting family and going to restraunts is TOUGH! I just did some research this morning on foods containing gluten and discovered two things I've done and will have to change. I gave up caffein so I went to a caffein free coffee but I use non-fat dairy cream to add to it. NO NO NO! I did a search on gluten ingredients and found my flavored cream I carry with me on trips and use daily has gluten in it. So I will give up coffee completely. Also we went to a buffet for dinner and I tried so hard to be good. I ate fish and green beans but treated myself to an ice cream cone. NO NO NO Again! The cone has gluten in it. GEEZ! I feel it this morning. Now at lunch yesterday I knew I was going to suffer. Everyone wanted pizza. YUP I did it. DUMB DUMB DUMB! LOL I will have to get tougher about this. Even if I had only done a salad, I learned this morning that dressing can have gluten. WOW. This is gonna be a challenge. I feel like I need to print the lists I found this morning and carry with me to avoid this alien beast called gluten! I'll get better....or suffer the consequences.

[Olivia-Micro-Colitis]

aww i'm so sorry Kim it does suck but there are stores like Fresh and Easy that have many gluten free products. i'm a fan of the pretzels and the brownies! Yum Yum Yum! lol Good Luck!
-Olivia

[Ginny]

Kim, it is difficult and I have to entertain customers every so once in awhile. I have way too many intolerances and have found that eating out is not the way to go unless I want to load up on Imodium! However, there are restaurants that will go out of their way to accommodate your needs. Don't be shy, tell them of your intolerances and ask to talk to a manager if the waiter/waitress looks at you clueless. I also call ahead to see what safe foods are available. Sometimes I just have a cup of decaf coffee or a glass of wine if I am not in the mood to suffer for the next 36 hours or more! Better to be safe than sorry!


Olivia is right, there are lots for GF/DF foods out there now to buy even in your local stores. The kicker is the soy........it is in everything! Just keep educating yourself and stay in tuned with this website, it has invaluable information. Ginny

[Stanz]

Yeah, it's everywhere, Kim, eating out is a real challenge and rarely trouble free.

They even put gluten in salsas, so you need to read read read labels. I know it sounds daunting at first, but it won't be long before you know what's safe and it becomes second nature. Hang in there.

[Jan]

We have a member here who is from Colorado Springs. She and her husband own two restaurants in the area that are gluten free. I think her "name" is kscolorado. She hasn't posted in a while. I don't know if you can search her name on the site and see her posts. In one of them she named both of the places.

I hope this helps while you are there.

Jan

[tex]

Here are links to the websites for the two restaurants that Jan mentioned, and they're near to Colorado Springs. The first one is for a fine dining experience, while the second one features family style dining:

http://www.craftwood.com/

http://www.stagecoachinn.com/

And this is the thread where she mentions the restaurants, in post number 11 in the thread:

http://www.perskyfarms.com/phpBB2/viewt ... ght=#63860

You won't get "glutened" at one of her restaurants. If you go there, and happen to see Kathy, tell her that the Potty People said "Hi".

Tex

[Gabes-Apg]

Kim
like most things with MC - eating out or travelling with MC takes planning, organisation you cant just wing it!

i take my own snacks to the pictures (rice cakes and gluten free snakes)
if we are going shopping and my partner wants to eat in a food hall i take my own food with me
at work i take my own lunch and snacks into meetings - i have been transparent about my situation and everyone is really supportive.

it takes time to adjust.... i am 6 months post diagnosis (and finding this family) and it is not too bad. there are foods i miss but I value D free days more!

[Joefnh]

Tex thanks for that info, I will be traveling to Colorado Springs in August and its good that there are a few restaurants in the area to choose from. This is my first week with a GF diet thanks to Gabes recipe plan, so far it is not too bad at all.

I cannot imagine trying to travel without either knowing were there are some restaurants or bringing some prepared food.

Best wishes Kim

--Joe

[grannyh]

You are much braver than I was. I never went anywhere very far from the bathroom/house for years. It was just so embarassing to fill my drawers.. no matter what the packaging says.. the diapers don't prevent odor..LOL
grannyh

[kimtg68]

Thanks to all for your advice and support. TEX-thank you for the links to the restaurants. I was just by one of them yesterday and will try to convince everyone to go back up that way today. If I do and see Kathy I will tell her the Potty Ppl said hi My husband will get a kick out of that! Although for the most part he has been extremely supportive in pushing me NOT to give up searching for a doctor that would properly diagnose me, now that I've been told a few things my hubby doesn't seem the same. He thinks I obsess over it. I don't believe I do. I'm trying to educate myself since doctors don't offer any education about this stuff. For an example: we went to Border's book store yesterday and I decided to look for a book on eating gluten free. He rolled his eyes at me. I found one but also found another one. "Living Well With Autoimmune Disease" by Mary J. Shomon. I read about 80 pages of it last night. OMG! I'm floored. It's been such a long haul getting to a diagnosis for the D and belly bloating and rashing on my face that I had forgotten some of the other things that were mentioned by other doctors. My family doctor, to be exact, tested me for Lupus which was negative but she felt that the night sweats, butterfly type rash on my face, struggling with kidney/bladder infections, etc was indicitive of Lupus. She also did a blood work up on me and sent me to a rheumatologist because although I was negative for Rheumatoid Arthritis I was very high on the normal side. The rheumatologist just told me a negative is a negative and didn't even bother with me. My family doctor also told me way back towards the beginning that it appeared that I have Raynaud's because my fingers and toes go cold and numb and the under side of my forearms and my legs look like purple road maps of veins. Like my skin is transparent and you can see the blood paths. Exposure to the sun makes my neck, chest and arms blotchy. There was no test involved but she started me on a fish oil type supplement she felt would help with circulation and lower my cholesterol (oops! Just realized I stopped taking that). Also about two years ago I had to stop wearing my contacts because my eyes were too dry. My optomologist thought it could be pre-metapause type symptom and tried Restasis but my eyes didn't respond favorably to the drops so I just opted for glasses. I could go on if I wanted to bore everyone but the shorter version is in reading this book I'm learning that these symptoms put together all lead toward autoimmune disease. Sometimes having one autoimmune disease may make you susceptible to other autoimmune diseases also (if I'm reading this right that is). Although I've not found any research linking MC as an autoimmune disease, Raynaud's is. Most if not all of my symptoms also appear to be linked to possible other immune diseases. Now I could take the road of just treating the symptoms but from what I read some of the AD's left untreated can become worse if not lead to complications. Not sure if I should continue learning and practicing a gluten free diet (I'm anxious to feel better) for fear that it might confuse future test's for AD. NOT SURE HERE! It took months and months and months just to get the MC diagnosis so no telling how long it may take to get other tests or doctors willing to do the testing. I believe for now I will continue in my research, get educated to a point that I feel comfortable going to a doctor and knowing what I need done and in the meantime I will pursue practicing and learning gluten free lifestyle. When I'm ready to go to yet again another doc I will discuss with that doc what I've been doing and if going off the gluten free diet is recommended for testing I will do so. Yeah, I think that might work.
I'm posting all this just incase someone comes along and reads this and thinks....'wow I have some of that going on too but never thought about it being autoimmune'.
I'm looking forward to chatting more with you all and learning as I go. Thanks for all your input!

[tex]

Kim,

Yes, autoimmune diseases tend to "attract" additional autoimmune diseases, and MC is an autoimmune disease.

Please be aware that many/most of us have found that when we get our MC symptoms under control, most or all of our other autoimmune issues fade away, as if by magic. IOW, they are due to the MC. Take RA for example - many of us have relatively severe arthritis symptoms while our MC is active, and yet our Rheumatoid Factor, (RF), will test negative. (That's why your rheumatologist lost interest in you). The arthritis is real, however, and I have permanent disfiguration of several of my fingers to prove it. After I achieved remission from MC, however, my arthritis symptoms all disappeared, (that is to say, the disfiguration is still there, because it is permanent, but I no longer have any pain or inflammation in those joints, IOW, my arthritis is no longer active).

Incidentally, Mary Shomon is an excellent authority on autoimmune issues, especially thyroid issues.

It's a shame that your husband feels that you are "obsessive" about this disease. Most of us have found that no one, (including our immediate family, and our doctors), understands this disease, and how broadly it affects us. Only those who actually have MC, truly understand how it feels, and how debilitating it can be. I can guarantee you that if your husband had the disease himself, his attitude would be totally different, so please don't take his attitude personally, because he is typical of most people who do not have the disease, unfortunately.

Also, be aware that unless you have celiac genes, you will never test positive to a celiac screening test, regardless of how sensitive to gluten you might be. The tests simply will not detect the type of gluten sensitivity that we have, even though we are just as sensitive to gluten as most celiaces. Once you are in remission, it would probably take a minimum of 3 or 4 months of eating gluten again, before your body would be producing enough antibodies to register on a celiac blood test, and even then, the test results would be negative, if you do not have fully-developed celiac disease. IOW, if you do not have celiac genes, then trying to get a celiac diagnosis is like

Tex