CarolinaKip

If I'm staying at someone house I bring my own pan to cook in as well as a good knife and cutting board. If I'm staying at a hotel, I take plenty of food that is ready or easy to prepare and picnic ware (plastic spoons, plates, foil, saran wrap, containers to put leftovers in etc). I pretend I'm going camping and try to think of everything I could possibly need if I didn't have access to a store.

I also figure out ahead of time where the nearest grocery stores and safe restaurants are and make up a binder with directions to them from my hotel. I include in the binder the lists of safe and unsafe food from this site. I also put in the printed gluten-free menu's of the places I plan to eat (if available online). I also try to find out where there are wifi hotspots if I'm going to be in a big city and away from my hotel for extended periods of time. I have a GPS so I just write down the names of the places and addresses, but it helps to have printed directions as well if I know I will be goign from one place to anohter (sometimes my GPS routes me a funky way and online direction or asking people who live there can give a more direct route).

Three musts in a hotel room are: microwave, fridge and highspeed internet. If I'm staying for more than a day or two I try to get a suite with a kitchenette at one of those extend-stay type places. They usually have a stove to cook on and a full size fridge with freezer as well so it makes it possible to cook meals in room and save money (or avoid boredom having to eat at the same place for a week if there's not a variety of gluten-free friendly restaurants).

I hope you have a good trip! I love to travel and have always planned my travel out, but being gluten free takes extra planning. You cannot over-prepare or over-plan IMO.

Thank you both so much! I brought some food and did find some places with gluten-free menus. I have a good store to go to, bought foil etc. I have my own pan too. I am still learning so much!!! I stopped at a Wendys and got a baked potato. I didn't tell them about the cleiac. I watched as the girl make a burger then unwrap the potato! So, I stopped them and the girl who toook my order said "are you allergic to bread" so, they had the girl change gloves. I know now to tell everyone everytime! I'm learning!

I'm traveling for the first time as a celiac. I was wondering some of your "must haves" when you travel. From food to other products. It's 6 hours away, so I'm bring what I feel I need and my personal products as a first timer. Do any of you bring your toaster etc?

For shopping there is a fairly good health food store, directly next to the Outer Banks Bread Company in Kitty Hawk. Farm Fresh has gluten free foods, but not in a specific section. You should be able to find breads, pasta and cereals.

High Cotton, at mile post one, has super ribs, brisket and BBQ chicken and are knowledgeable about gluten free service. Just let them know. Ask for Will Thorp. But, most restaurants have fresh seafood and can cook it to your liking and most are happy to accommodate special requests.

Lone Cedar Restaurant (on the causeway toward Manteo) had the best scallops and a dedicated fryer for fries. Also, they serve the best cold plate I have ever eaten, with fresh seafood. There is an Outback in Nags Head.

Ordering in a restaurant at the beach should not be a problem, but I would suggest you go during non busy times, or call a head, late afternoon and talk to the manager.

It's beautiful there. Hope you have a great time.

Thank you!!

I've read some old post about gluten free in the outer banks of NC. Anyone have updated info? Somewhere to dine and or to shop gluten-free. Thanks!

I was diagnosed with coeliac 6 months ago. Since then I have been following a strict gluten free diet but haven't improved much. I've also developed a recurring rash on my scalp which I suspect might be DH.

About the time I was diagnosed I started getting numb fingertips on my left hand. This has worsened over time. Now I get varying degrees of numbness in my left hand fingers extending up the side of the hand and arm to the elbow. I've also started getting occasional numbness on my right hand's fingers and the toes of both feet - but not as badly as my left hand. I've also been getting joint pain occasionally in my knees that co-incides with the toes numbness.

My extremities have always been prone to getting very cold. But this last month I've had two occurrences of all my fingertips going completely numb and bone white. Except under he finger nails which went dark purply/black. It freaked me out because it looked like frostbite for no apparent reason.

I went to see my doctor and specialist and it turns out I have something called Raynaud's Phenomenon which is an autoimmune disease that affects the blood flow to the the body's extremities, ie fingers and toes. My specialist says it has strong links to coeliac like a lot of other auto-immune disorders and that getting coeliac probably triggered it.

http://en.wikipedia.org/wiki/Raynaud's_phenomenon

Does anyone else have this? I've been googling pictures of it and I've convinced myself that my digits are going to become gangrenous and need to be amputated. The internet is a dangerous thing.

I have Raynauds. I had this for three years before finding out I was Celiac. I have the most trouble with it in the winter. I have to do outside duty at my school and have to wear three pairs of gloves/two coats etc. I bought some heavy duty ones! I also have trouble with my toes sometimes if it's very cold. I have trouble with it in the summer if the air conditioner is really cold. So, I bring a jacket and gloves when shopping. I find that I am really sensitive to any type of cold. Sometimes I have had all fingers totally white! When my fingers warm up, they will be a rosey purple. It is painful! My sister has lupus and has raynauds as well. We protect our hands and feet so far no damage to them. Sometimes the internet can be our friend or scare us to death. Hand and feet warmers that hunters use are helpful in the winter!

I'm going to be visiting for a few days and know the people I'm with will like to eat out at least once. Any suggestions? Thanks!

I have two of them that I do great at, one not so good. I have yet to try the fries.

...After six months of very little progress - still feeling bloated and icky, should post about that soon - I noticed today that my fingernails are getting longer and stronger. Not sure if I should put it down to coeliac recovery or my efforts to increase my calcium intake but hey, one part of my is looking healthier. Woooo!

I used to bite my nails all the time. I noticed after going gluten free my nails were longer and I wasn't doing that anymore??? I've been gluten free for two months and still having pain and bloating. I am having a difficult time with CC. I think.

Thank you both!

I'm sorry, I have a different perspective... but sorry you had an unpleasant experience.

Although Panera offers several lunch options that do not contain gluten, it's a HIGH risk for cross contamination. Surely, you knew that before your ordered. It's a bread company that served meals.

I am not one that is subject to cross contamination. And I eat there frequently and comfortably.

Dining out is our choice. Choose wisely. And the bottom line is, you and you alone are responsible for what you put into your mouth.

I would never hold a restaurant, especially one specializing in bread and breaded meals, to be responsible to keep my gluten free body safe. It's just not realistic and highly unfair to that establishment. Most restaurants cater to 90% of the general public. We are not special, but grateful to those who acknowledge dietary issues.

The risk is yours, accept the responsibility as yours.

The manager, that you asked for assistance...I presume during the peak lunch time, was multi-tasking for all the employees who did not show up, training, or assisting in all areas during a condensed time.

Continued criticism of places such as Panera, will soon result in the withdrawal of any gluten free menu or gluten friendly foods. I always try to be a good guest.

This post was not directed personally toward anyone, yet everyone that finds it interesting.

But, I have to add (per your statement) if you truly had a peanut allergy..and an anti-fa lactic response, would you be eating at Panera?

I do not have a peanut allergy, and it was at 2 pm and they were not busy at all. No one

was rushing to fill n order and he was matter of fact. Thats fine I get what you are saying, but you missed what I was. I knew the risk when I ordered. Thought I was passing on some info on being more aware for new celiacs! I am not saying all paneras are like this, but others should use caution,when ordering and see the top manager, not one that won't listen to what you are trying to explain.

Does anyone have the brand UTZ chips in their area? I have come across these and they all have "this is a gluten free food" on them except their bake tortilia chips. Wondering if anyone had tried them. I also came across chips by the brand name "Kettles" that are a kettle cook potato chip. I have found these in Food Lion and Lowes Food. Anyone tried thses??

I was having lunch with my friend today. We both love paneras and I thought I'd try to have it safely. I explained Celiac and how I couldn't eat wheat etc without getting sick. I asked if my salad could be made in back, the young mamager said no, it's the same as on the line. That the sandwiches are made across from it. I asked if they could at least change gloves. He said they would, the girl that took my order told they guy on the line to change his gloves. I knew half way into my salad I had been glutened. Side pains, stomach cramps. Now I have the headache. I didn't want to spoil lunch, so I didn't say anything to my friend. However, after my friend left I ordered something for my daughter to take home and told the same girl who took my order that I wasn't feeling well and feel that I was CC. She went back and talked to a few people and came back and said I am so sorry that will never happen again. The guy didn't change his gloves. I said no it won't because I'm not taking anymore chances here. As I was waiting for my order, I watched as a girl made 8 salads right next to lettuce. These salads had courtons and tortilla strips on them. I told the orginal girl, Look this is how CC happens. You have the courtons/tortilla strips next to the salad ingredients, plus she is making salads that contain gluten near the lettuce. Even if crumbs get in there it is CC and can hurt someone with Celiac. I did this all nicely, she told me if she was me she would be mad.

So far the only place I have had a good experience with eating out is chick fil a. I order the chargrill salad with honey mustard. I aske every chic fil a how the salads are prepared and I have been told they have their own seperate station.

You know, I wonder if I told them I had a peanut al;lergy if they would have treatedme differently??

Hello all,

I'm the only Celiac living in my house (and I've only got one cousin who has celiac) and I'm feeling kinda lonely.

Every time I think I've over not being allowed to have gluten, it comes back and smacks me in the face and I just wanna cry....

Does anyone else feel like this?

I can relate, right now my children are gluten eaters. I'm in the process of organizing my kitchen and fridge so I don't CC myself. I have had some depression over this and it is worse when I gluten my ownself. What wears me down and scares me is that I'm still in pain everyday. However, I've only been going gluten free for about two months. Can you talk to your cousin or visit? I spoke with someone from my church who has celiac and that made me feel better.

I just found out im pregant, im happy and my husband is. I thought I mightn't be able to have another baby so this is a miracle to me. My news of having another baby is darkened by my own mother who is not happy about it. Im married Im almost 26 and I have another little girl and my mom is not happy, its not like im a teenager. Im just really upset right now, how can she not be happy. All I get is your sick, you should have waited. I cant tell anyone about my mom not being happy because they will get mad at her and I dont want that. What can I do?

Congrats! Sorry about your mom, perhaps as time goes by she will think differently. Especially whe she get to see your miracle

congratulations!

My mother had the same attitude when we started trying 10 years ago. For her, the reaction was worry about our financial stability at the time. You are fortunate to have this baby now and that the two kids will be close together in age. Remind yourself that yes your mom loves you even though she can say stupid things sometimes. Take good care of yourself and eat LOTS.

PS. I just found out I'm expecting for the first time about a week and a half ago, so we are probably due about the same time. I figure March 6th for me.

Congrats SGWhiskers!

Can I asked how you ordered when you had a positive visit at Paneras? Did you have themmake it in the back or just change gloves? I've been asked out to lunch this week and my friend wants to go there.I used to go all the time and I'm hoping the manager will remember me. Any suggestions?

Thank you for your replies. I am going to have them tested. I'll print off what tests they need. Their doctor told he would do if I wanted it, but I think he still thinks I don't know what I'm doing. My daughter is moody at times and my son started telling me he just didn't feel right after eating. That started about a week ago. He said he didn't feel pain,. but like he had eaten too much and was going to be sick. He is 17. Thanks for the info, it's a big help!

Enjoyed this thread.

I had an ER doctor to ask me if I was there for her to find out what was wrong with me or control my pain. I replied to find out what's wrong. She rolled her eyes and said That's not going to happen!

I had my PCP give up and pat me on my knee and said, well it's probably something for the GYN, he'll fix you up. If something was going to rupture, it all ready would have.

I had CC and didn't know I had done it last month. I was in so much pain when I called the gastro on Monday, the nurse said we have no appointments until Friday, you'll have to go to the ER. What?! I didn't go to the ER BTDT!

My dietition was the bigeest help!

I've been trying to communicate with my children's doctor's about having them checked for celiac.. I finally got word this morning that he said "Celiac is asymptomatic and as long the children have no weight loss, pain etc there is no need to test them" They don't have alot of symptoms like those, but my son is ADHD, my daughter gets a lot of headaches and had ecsema early childhood. I feel at the end of the day I am trying to prevent them from getting as sick as I am now. I want them tested. What do you all think here? I am new to this and wondering.

Wanted to share what my dentist said to me during my last visit. I wanted to know if the toothpaste was gluten free. They couldn't tell me. The dentist said "you're not going to ingest it and it's just trace amounts if it is" It was clear he had no clue about celiac. I told them "surely I am not the only celiac you have here??!

Generally speaking, are gastroenterologists more celiac-aware and more celiac-friendly than GP

Hello Everyone!

I really appreciate all the comments and suggestions I have had here! I'm Kip, a 44 female and I was diagnoised with Celiac May 2010. I've had intestinal issues most my life and I have Raynauds. Lost muscle and weight and had no idea why. I started having severe abdominal pain the week before Thanksgiving 2009. Been in some type of pain everyday since. Yuck!

I am usually a very happy upbeat person with a big sense of humor. I have to admit, the celiac has taken some of that away for now. Just for now! I work with kindergarteners, and have two teens myself. They keep me going and make life interesting at times!My children are not happy with the thought they may have to go gluten free. In proccess of getting them tested.

Been through a lot so I am happy to know why I have so much pain. Yet, the doctor didn't give me much to go on or talk about CC.

I'm trying to find my way! The nurse at my Endo told me several places to shop in the next city over from me. My community has very little knowledge of Celiac JMO. Most people wonder if they can catch it from me or that I am being neurotic. The dietition was a big help with food etc. Thanks for your help here on other products!

It's helped so much read ther post knowing others have been through the same thing and have the same concerns.

I'm from NC as well

Y'know, the statement that shampoo would not cause glutening prompts me to ask everyone a question: Hasn't anyone ever gotten their shampoo in their mouth? Am I the only one who rinses their hair with their mouth open? Otherwise the water runs in my nose, not good. Am I strange?

I don't think you're strange. I have been in so much pain everyday during the past 8 months trying to find out what's wrong with me. At times the pain was so extreme, I went to the ER. I just found out I have Celiac and to me it is worth changing everything to stop the pain.

aloe juice can cause D and all sorts of nasty stuff. I wouldn't do that.

Here's some info I found.

it is important to pay attention to the side effects of this drink especially when you are suffering from a medical condition such as Crohn's disease, colitis, appendicitis and intestinal problems.

Allergic Reaction: In certain cases, aloe vera juice has been known to trigger off mild allergic reactions including skin rashes and itching. Too much of aloe vera juice or a poor quality of juice can also result in allergic reactions such as vomiting.

Abdominal Cramps: The laxative aloin present in aloe vera juice which has not been processed properly can lead to intestinal and abdominal spasms along with cases of the urine turning red. The reason for the aloe-induced toxicity are anthraquinones present in the aloe juice which can result in severe diarrhea and kidney damage.

Electrolyte Imbalances: Dehydration and electrolyte imbalances are one of the most common side effects of aloe vera juice. The stimulant laxatives in unprocessed aloe vera juice can cause dehydration with frequent use.

Medical Conditions: People suffering from gastrointestinal diseases and irritable bowel syndrome need to stay away from aloe vera juice as the laxatives present in it can increase the severity of the diseases. In addition to this aloe vera juice is a strict no-no for people suffering from colitis, intestinal obstruction, diverticulosis, appendicitis, hemorrhoids and stomach pain or ulcers. People who have kidney or heart disease are advised to stay off aloe vera juice.

Pregnancy: Consuming aloe vera juice during pregnancy or while breast feeding is severely restricted due to its irritant and purgative properties. Aloe vera should be restricted during lactation as the presence of anthraquinones in the breast milk may lead to diarrhea. In pregnant women aloe vera juice can cause uterine contractions and even result in a spontaneous miscarriage.

Medication: Certain drugs and medication when combined with herbal products can cause a number of side effects. So in case you are on any of the drugs such as digoxin(Lanoxin), drugs that cause potassium loss, such as Bumex, Demadex, Edecrin, Lasix, and Sodium Edecrin, diuretics, drugs for irregular heartbeats and steroids, then it is advisable to abstain from aloe vera juice.

Thank you all for the ideas! I'm going to try them. Thanks for the research on the aloe. This is very much appreciated! I'm sure now that I cannot handle the Lindberg cjips. I loved the lime flavor. I think I am fine with the ricewroks, however, will wait to introduce them. I have checked my medicationS as well. The DR has ruled out many conditions, but the allergy panel. I will mention them all to him when I see him.

On 7/5/2010 at 9:55 AM, TEMP876556 said:

Have you done an allergen panel since the blood test and endo? It may just be that you have leaky gut syndrome and are reacting to other foods. This is very common in people who have celiac. Your intestine may be building up intolerance towards the foods you eat most often (even healthy ones). I would get the panel done and ask your doctor about a gut healing regimen if that ends up being the case.

I've had every other test done, but the alergen panel. I've had a colonoscopy as well, plus 3 ct scans. I am thinking more and more I'm having trouble with other foods. I know I have a problem with diary. Thanks for the suggestions! I'm going to ask to have this done.

I have been eating the Lundberg! I stopped and looked at my food diary and all three times I have eaten them, I have had a lot of pain. One time even developed a headache afterwards. I will lay off all that and do the whole foods thing. Thanks for the suggestions!