First Time Out To Eat Since Diagnosis

[kerri124]

I went out to eat for the first time since being diagnosed. I asked for plain grilled chicken with nothing on it at all. They put it on top of lettuce, tomatoes and cucumbers. I had them bring oil and red vinegar to the table. That was all I ate there. I woke up the next morning feeling so sick. But not with gastro symptoms like I have heard many of you talk about. I felt extremely tired, muscle aches and pains, a little dizzy and headachy. Is this a normal reaction? And what do you think I reacting too? I was pretty sure everything was gluten-free. I've only been on the diet for about 3 weeks. I was starting to feel a little bit better until this happened. Any thoughts would be appreciated. Thanks!

Kerri

[kerri124]

I just wanted to add did anyone ever feel anxiety as a symptom of celiac disease? Thanks!

Kerri

[Guest jhmom]

Hi Kerri ~ I'm not sure about the symptoms you experienced. I am sure you already know that you have to be careful when eating out. I will not eat out anywhere that does not offer a gluten-free menu. After some people go gluten-free they become VERY sensitive to just a crumb of gluten. Here is a perfect example my family had Wendy's the other night and as I was bitting down on a french fry my son pulled a peice of chicken nugget (stuff) out of the box. About 30 minutes later the symptoms hit me like a ton of bricks and remember I DID NOT eat the french fry, I only bit down on it but the oil was released into my mouth! Later that night my daughter has a terrible reaction but she did eat the fries, so NO more Wendy's fries for us, from that particular location!

Did you go somewhere that has a gluten-free menu? If not the chicken you ordered could have had spices on it that were not gluten-free or cross-contamanation could have been the culprit.

[Tye-Kon]

Stacie:

I had the same thing happen to me with french fries, but these were from a MacDonald's. I had ordered french fries several times at different MacDonald's locations and never had a gluten reaction, but this was a MacDonald's I had never eaten at since being gluten-free. I ate the french fries and within 30 minutes I knew, boy did I know, I was sick for about 4 days. I'm afraid to go to MacDonald's again after that. Maybe I should have gotten a clue after opening up the box my burger was in and it had on it ketchup, mustard, and onions after specifically ordering a plain meat patty! I learned from that experience to check what the food looks like before driving away!HaHa

Tye-Kon

[Guest jhmom]

Thankfully my local McDonalds uses a dedicated fryer for their fries, but trust me I will check it out each time before I eat there! As for Wendy's I have had to many problems with their fries, so I won't be eating there anymore

I don't blame you for being afraid, it kinda makes you leary, doesn't it? Yeah it sounds like they probably just took the bun off your patty, people just don't get it do they??

[Guest Haypaula]

I too have only been on the diet for 3 weeks and I react to slip ups and many other things with fatigue, muscle cramps and irritability. I wish that there was some sort of monitor like the ones used for glucose. Atleast then we would be able to pinpoint things better!! Paula

[mijoryma]

I am glad that I am reading all of everyone's information. I have been gluten-free since Feb. 16th, and I am feeling a little better some days and terrible on others. I feel like I am eating everything the right way, but then I end up sick again. For example today I ate a gluten-free rice roll with peanut butter and strawberry jam and I have been sick ever since. I think that my body is still taking time to heal, after I have read all of your comments. (or maybe my pb has bread crumbs in it)

I did want to let everyone know that I work at a McDonald's part time and they are the only fast food place that has a dedicated fryer for fries. Wendy's and Burger King do not. I have eaten there several times and have not gotten sick at all. I guess when we go to Wendy's we will have to stick with the baked potato.

If anyone has any ideas on how long it takes to feel better, please let me know. Thank you again for all of your help.

[Guest aramgard]

I've been gluten free for three years and am now doing very well. But it really took me a year or so to settle down to a normal routine as far as the diarrhea went. Now it is really rare for me to have diarrhea, cramping or bloating. But after 53 years of misdiagnosis, my immune system is shot and I get sinus infections, colds, flu (even with the shots), everything that comes my way. Right now, I've been reasonably healthy (except for respiratory allergies) for 3 months, for which I'm very grateful. You people who are younger and have been diagnosed early are very lucky, although it might not seem so at first. But your digestive and immune systems have a much better chance of healing. Good luck, Shirley

[mijoryma]

Thank you for the info. I am only 30 and have been dealing with misdiagnosis for 6 years. I cannot even imagine if it took any longer. I was very persistant and found a doctor who took the time to figure it out.

I was wondering if you completely eliminated everything from your diet (except meat and veggies) at first and then readded them after some time or if you just were eating gluten-free and dealt with the sickness. I have read other entries and noticed that some people thought that adding dairy and sometimes even grains after 6 months or so worked better for them. I had been feeling better as soon as I switched my diet, but now more recently have been having problems again. I hopefully will be able to see a nutrionist soon and get some answers.

Thanks again for your response. It made me feel better.

Michelle

[wildones]

There are two restaurants that I know of that have gluten free menus PF Changs and Outback. Chick-fil-a was always a favorite for my kids and also has gluten free items on their menu. I was there the other day and asked for a grilled chicken breast with out the bun. I usually just say I am allergic to wheat, because most people understand that, and they just don't get the auto-immune disorder thing. I got probably the stupidest comment yet about gluten . A woman told me that "our buns don't have wheat in them" when I asked her why she would say that she said "because they are white bread" I was trying not to laugh at her stupidity and could only say to her that she should NOT tell anyone else that there buns are wheat free. The Chick-fil-a near us has a dedicated fryer for their fries and we have not had any problems with them.

I have had reactions from various gluten accidents, that vary from GI, to extreme fatigue, achiness, irritability, headaches, depression, feeling 'in a fog' and my sons have had vomiting and shaking and skin reactions besides the classic GI reactions.

[kerri124]

Thanks everyone for sharing your experiences. I guess I will have to stick with eating only at places that have gluten-free menus. I am sure that my body still has plenty of healing to do as I've only been gluten-free for about 3 weeks.

[lovegrov]

A few comments.

Somebody said McDonald's was the noly place with a dedicated fryer, yet every single Wendy's I've ever checked also has a dedicated fryer. And every Burger King. The problem is that even at places with dedicated fryers, accidents happen.

PF Chang's and Outback are the most prominent and well-know places with a gluten-free menu (and the folks there might be better trained than at most places), but many others have them as well. Places like Wendy's and McDonald's you can go to their web sites and find what's gluten-free. Shoney's has a book at the restaurant that shows what foods have each of the eight major allergens (although not barley or rye). Numerous restaurants will send you a list if you contact them (and some will jst tell you to buzz off). I remember a woman on the St. John's list who collected gluten-free menus for something like 30 restaurants, although that list would be old by now. There's a fellow who sells a list for more than 50 restaurants.

Your best bet, at least when you're eating close to home, is to find some good local places that cook with mostly with fresh ingredients and then introduce yourself to the owner or the chef or cook.

Eating out is always risky, even at the most conscientious restaurants. Somebody who has been gluten-free just three weeks has not healed and should not be eating out yet. I didn't eat out for almost three months and I know gfolks who didn't eat out for a lot longer than that.

richard

[angel-jd1]

Every Wendy's I have checked with does not have a dedicated fryer for the fries. The fries are cooked in the same oil as the nuggets. I have even found a chicken nugget in my fries before!! (this was what prompted me to ask about it!) You are lucky to have found a wendy's with a totally seperate fryer for fries.

-Jessica

[Guest Haypaula]

Hi all,

My son was working for Wendys and said that they do have a dedicated fryer however, when it gets busy they use whatever fryer is available!! Scary...basicly, if you think about who works at Wendys...mostly kids ...do you want to trust your health to a bunch of kids?? NOT ME!! Paula

[Guest aramgard]

If there is an In and Out Burger place in your vicinity, they have a protein burger (wrapped in lettuce) and they only serve frys and burgers so their fryer is dedicated. Also it is cheap and that's a big plus for a Celiac. We eat there occasionally and I have not been sick from eating there. Shirley

[kerri124]

Thanks for the great info Richard. I would not have chosen to eat out if it could have been helped. I was at my cousins bridal shower which was a 5 hour event and had to eat something! I suffer with low blood sugar as well as celiac disease so its hard to go without eating something. There was no outside food allowed so bringing my own was out. I guess my next venture out to eat will be at her wedding in June. Hopefully I'll have a better experience then. Thanks again everyone.

Kerri

[mijoryma]

I just wanted to thank Theresa for the nice email. I am not sure how to contact you directly to respond. I am actually awaiting bloodtest results from my doctor and should hear more info tomorrow. How do you know if you are a stage 3 or 4? Actually you are the first person to mention that there was even stages to celiac disease. I guess I do not know too much about the disease yet. As far as the bread goes, I was very happy to find some really good tasting bread (as good as this bread can taste anyway) when I was in DisneyWorld. I ate at one of the parks and the chef came out to talk to me directly about what she was going to serve me. I had some rice rolls with my dinner and they were good, so I asked her about them. She said she mail orders them from a website. The only downfall was that you would have to order in bulk. The website is www.cybrosinc.com. They do have other things on the order form besides gluten free in case you want to order for other family. I found that the the rolls and the rice bread was good. The cookies were not too good. I actually dried the rice bread and made bread crumbs with it and used it to make my italian meatballs. They tasted just like they always used to. I also found Glutano spaghetti tastes very good too. I hope this helps you too. Thanks again.

Michelle

[lovegrov]

I also liked the rolls I got in Disney World (at Akershus, but I assume they use the same brand everywhere there), but I wasn't too thrilled with the bun I had with my chicken sandwich. I also had a very yummy brownie at Hollywood and Vine and very fine pancakes at one of the character breakfasts. I really wanted French toast but they were out of gluten-free bread.

For those who want to send private e-mail to somebody just click on the person's name and look for the e-mail function on the right.

richard