Had A Big Reaction Yesterday Because I Was Embarrassed To Tell The Extent Of My Food Issues

[April in KC]

Hi all,

I am here and feeling frustrated with myself for not being able to tell the truth (quite) about this awful business of being intolerant to foods. Yesterday I took a risk I should not have taken, and I had a reaction.

I had a business lunch to attend. My employer was going to be with me, it was a serious luncheon that included an executive with the restaurant itself. They indicated they could handle the Celiac diet because one of the owner's children had Celiac. Great! (I am not going to name the restaurant because I feel like I am the one to blame for what happened, not the restaurant).

Background: I have Celiac and dermatitis herpetiformis, was dx about 6 months ago and quickly developed secondary intolerances on the gluten-free diet. Headaches with coconut. Mid-back pain with any grain, rice and corn included - this is an ongoing problem as it's hard to avoid corn. Headaches and sleepiness with any milk product. I have been off milk for a long time. I recently challenged soy and did not have obvious symptoms, so I have reintroduced in moderation. A couple of weeks ago, I tried quite a good sized block of cheddar cheese and developed a headache - so I "knew" dairy was still a problem but I guess I didn't want to be obsessive about it if it was ONLY a headache.

So when I got invited to this business luncheon, I called ahead they day before and said that I had special dietary needs and would need to eat gluten free AND (apologetically) also rice and corn free. I just couldn't quite make myself speak the words that I also needed to be dairy free. In my mind, I thought, it's probably only a headache if you get a dish with dairy - so suck it up.

Long story short, I ended up getting a good dose of dairy with my meal, and I paid for it. Either that, or I got glutened, but I don't think so as I have not had GI symptoms today, and so far no itch of oncoming DH. On my way back from lunch, I got a bad headache and started having problems connecting my words and thoughts. By the time I returned to work, I was useless - my hands were buzzing, I felt drunk for lack of a better description (no alcohol consumed), and I was reversing letters when I typed. Within an hour, I was asleep. I actually had to stay at work late just so I could sleep off my reaction enough to safely drive home. It was the tranquilizer reaction I have experienced before. I am never quite sure if that is gluten or dairy, but now I am leaning toward dairy.

Today I am frustrated. I feel dumb for not stating all of my needs in a clear way. I knew that gluten free was "one strike", and I felt like grain free was strike two. I just felt like if I said dairy free, that would be strike three and I would be out. Out of the norm. Out of serious consideration. Out of my mind.

Does anyone else know what I mean? Do you feel like if you tell people the truth, they will think you're some kind of delusional weirdo?

Honestly, I don't really feel like telling this to my GI doc - it just sounds too unbelievable.

This is where I can vent and post this. Thanks.

April

[Yellow Rose]

Oh April what a horrible experience. But!!! you really need to think about your needs and not what others think. It is just not worth all the reactions that you go through. Most people won't even remember it by the next day anyway since it doesn't directly effect them. Look at it another way if this was someone else and you were the company or employee they told you about their needs wouldn't you want to do what was necessary to accodmodate that person. That is what customer service is all about. If the experience turns out to be good for you than you can call the place and talk with someone in charge and thank them for such good service. If the experience is not good then you can still call and thank them for trying but explain what happened and give suggestions on what needs to happen. It will go along way for the next person who has special needs. Feel better.

Yellow Rose

[Guest Happynwgal2]

Hi all,

I am here and feeling frustrated with myself for not being able to tell the truth (quite) about this awful business of being intolerant to foods. Yesterday I took a risk I should not have taken, and I had a reaction.

I had a business lunch to attend. My employer was going to be with me, it was a serious luncheon that included an executive with the restaurant itself. They indicated they could handle the Celiac diet because one of the owner's children had Celiac. Great! (I am not going to name the restaurant because I feel like I am the one to blame for what happened, not the restaurant).

Background: I have Celiac and dermatitis herpetiformis, was dx about 6 months ago and quickly developed secondary intolerances on the gluten-free diet. Headaches with coconut. Mid-back pain with any grain, rice and corn included - this is an ongoing problem as it's hard to avoid corn. Headaches and sleepiness with any milk product. I have been off milk for a long time. I recently challenged soy and did not have obvious symptoms, so I have reintroduced in moderation. A couple of weeks ago, I tried quite a good sized block of cheddar cheese and developed a headache - so I "knew" dairy was still a problem but I guess I didn't want to be obsessive about it if it was ONLY a headache.

So when I got invited to this business luncheon, I called ahead they day before and said that I had special dietary needs and would need to eat gluten free AND (apologetically) also rice and corn free. I just couldn't quite make myself speak the words that I also needed to be dairy free. In my mind, I thought, it's probably only a headache if you get a dish with dairy - so suck it up.

Long story short, I ended up getting a good dose of dairy with my meal, and I paid for it. Either that, or I got glutened, but I don't think so as I have not had GI symptoms today, and so far no itch of oncoming DH. On my way back from lunch, I got a bad headache and started having problems connecting my words and thoughts. By the time I returned to work, I was useless - my hands were buzzing, I felt drunk for lack of a better description (no alcohol consumed), and I was reversing letters when I typed. Within an hour, I was asleep. I actually had to stay at work late just so I could sleep off my reaction enough to safely drive home. It was the tranquilizer reaction I have experienced before. I am never quite sure if that is gluten or dairy, but now I am leaning toward dairy.

Today I am frustrated. I feel dumb for not stating all of my needs in a clear way. I knew that gluten free was "one strike", and I felt like grain free was strike two. I just felt like if I said dairy free, that would be strike three and I would be out. Out of the norm. Out of serious consideration. Out of my mind.

Does anyone else know what I mean? Do you feel like if you tell people the truth, they will think you're some kind of delusional weirdo?

Honestly, I don't really feel like telling this to my GI doc - it just sounds too unbelievable.

This is where I can vent and post this. Thanks.

April

You poor thing. I feel for you, and I am sorry you had such a horrible day. Please do not blame yourself - we all know how difficult it can be to explain our dietary challenges at times. Just use it as a learning experience. Perhaps you could tell your co-workers what happened so they can also be a help to you for future luncheons, if you are comfortable telling them how sick you became from such common foods.

I am not sure what to do about telling this to your GI doctor. If you don't trust him or her, perhaps you should look around for a doctor you would trust 100%, and who would be supportive and helpful to you, so you could better deal with the severe reactions you have to some foods.

Hang in there, April! We are all rooting for you.

[nora-n]

My daughter sleeps for a day if she gets food with milk or traces of milk. There waws also an article on celiac.com that in many celiacs, casein does things to the villi too.

I reverse letters etc after glutening but not with milk.

[hathor]

I do sympathize. I hate feeling so high maintenance. It is one thing to deal with one or two intolerances. You string them together and the wait staff rolls their eyes, the kitchen messes up, or the restaurant says it can't accommodate you. (I'm vegetarian, with no gluten, casein, egg, or soy. I'm considering whether I should eliminate corn & see what happens.)

Within the last week, I've gotten hit twice at restaurants. At one, which advertises gluten-free pasta, I ordered that plus asked for a dairy-free sauce (also vegetarian). That was too much for the chef to remember; I got a nondairy, vegetarian sauce on regular pasta. Which I discovered after eating some of it Then after a few days (finally recovered), I go to a restaurant where I order a few sides, explaining the gluten-free necessity and that I was ordering sides because I was vegetarian. Well, they handled the gluten-free part, but my sides had big chunks of bacon in their sauces. (Silly me, thinking roasted potatoes would just be roasted potatoes ... no sauce, and certainly no bacon, particularly after saying I was vegetarian). I ate around the bacon because I was pressed for time, having to get to the airport. Sick the next day, of course.

I'm thinking I need to develop a card that shows all my dietary needs & preferences. Then I will order something provisionally and ask the waiter/-ress to take the card back to the chef to doublecheck.

I guess we learn from our mistakes. At least I hope so. Get feeling better!

[April in KC]

You guys are the best - thanks for all the replies!

I have pretty much given up on 99% of restaurants, but the "business lunch" thing presents a problem. I have considered writing a card that has a suggested meal - grilled meat or fish, steamed veggies, potato with olive oil, etc., for cases when I have to eat out. Bland fare is not really my thing - I spice things up at home - but safety is important.

I really miss good-tasting food. I used to love eating out - Indian, Thai, etc. I have found that I can still eat some wonderful dishes from the gluten-free menu at the P.F. Chang's on the Plaza in Kansas City. I ate there three times over my anniversary weekend this summer. The manager, Paul, was super nice and very concerned about allergies, service and taste. The Chang's Spicy Chicken is rolled in potato starch, which is fine for me. I eat it with their gluten-free garlic peas instead of the normal rice it comes with. I think there is a tiny amount of corn starch in the finishing of the chicken, but it is small enough that I do not get any big symptoms from it. I also like their gluten free salad. By the way, they do have vegetarian items on their gluten-free menu. I can't remember if they are vegan or not.

From my Friday experience (at a different restaurant, not Chang's), I am stumped about whether I was glutened or if it was just the effects of the dairy. If the latter, my dairy issues are rather severe. However, my elbows itch a little bit today, so it could have been gluten (would make more sense with the neuro type issues, unless there is such a thing as "casein ataxia", LOL.)

I may have to do a search to see which dairy items contain the highest concentration of casein - milk, cheese, or butter. As unpleasant as this sounds, I might need to intentionally challenge dairy. I would like to know which foods produce which effects.

[Guest Happynwgal2]

I may have to do a search to see which dairy items contain the highest concentration of casein - milk, cheese, or butter. As unpleasant as this sounds, I might need to intentionally challenge dairy. I would like to know which foods produce which effects.

I am just thinking the same about casein - my big problem now is that I am ALWAYS tired. I am not sure what is causing it; my naturopath thinks it may be that my adrenal glands are not working well. However, according to what she has told me, I don't think that would explain why I feel so tired when I wake up in the morning. I have thought about sleep apnea (spelling?), but I don't believe you dream much with sleep apnea, and I dream ever single night.

I suspect there is something I am eating, or that perhaps my thyroid med's are not where they should be. The problem right now is that I am going through a very challenging class at work, and don't have any time off to make it to the lab while they are open. I just have to hang in there another three weeks.....

I am glad I finally know that I cannot eat gluten, but still frustrated that there are so many other things I seem to not be able to eat: many of the alternative flours which makes it feel like I have a rock in my stomach which is very uncomfortable, eggs, yeast, dairy, sugar makes me hyper and keeps me awake at night... Corn in the form of polenta makes my face swell up with huge bags under my eyes... Many fruits make my stomach ache and give me gas...

The other day I craved a good old fashioned hamburger on a wheat bun , but of course, I did not follow up on that craving. I stay away from most red meats, and am cutting back on poultry, too. When I do buy poultry, I buy the more expensive organic kind that has been raised without antibiotics. In fact, I am more and more going over to organic foods, believing that perhaps I am also reacting to some of the nasty chemicals they put on our foods that are so-called "safe".

I am really frustrated right now, but perhaps some of that is the stress of my class at work: I love what I am learning to do, which is operating the light rail trains we have in Portland. It is stressful, but oh, how fun because I have always loved trains of any size. It will be better when I am all done.

I am just telling myself to hang in there until I have time to go to my naturopath again.

This is SO frustrating... And yet, I am so glad I finally understand more about my strange dietary needs...

[Gentleheart]

I'm allergic and intolerant of several major foods besides gluten. Shortly after diagnosis, I went on a cruise for business. I naively brought along a list of the 7 main foods I couldn't have. I also was too shy and embarrassed to give them the whole list. When I handed the list of 7 to the Maitre D he shook his head and said, "That's too many!" and handed it back to me. It was downhill from there.

Gluten free is difficult enough. But when you add other significant food groups to the mix, it can get downright isolating. I can't even participate in our state celiac group potlucks because they don't recognize and eliminate anything but gluten. From what I read on this board, a significant number of gluten people are also allergic or intolerant of dairy, soy, corn and eggs, to name a few. You certainly can't cater to everyone, but you would think fellow gluten folks would be the most likely to be sympathetic to our plight.

[Guest Happynwgal2]

You certainly can't cater to everyone, but you would think fellow gluten folks would be the most likely to be sympathetic to our plight.

Yes, you would think so, huh? I think the problem may be that some gluten intolerant's and Celiac's are getting wrong information from their doctors. Depending on how up to date the doctor is in his oer her knowledge about gluten and secondary sensitivities, he or she may refuse to recognize that there are indeed many of us who have serious secondary food sensitivities.

I believe that it will be years before we truly understand the full extent of symptoms that are possible when you are gluten intolerant or Celiac. Too much misinformation has been had for many years. We are just getting out of the dark ages with knowledge about this serious disease.

Don't give up, but trust your body. Your body will never lie to you. I KNOW when I get sick from non-gluten foods! No doubt in my mind. Some days I am really puzzled, and feel extremely frustrated, but I am NOT giving up.

A friend just called me and said she was so sorry to hear I have such a nasty disease - Celiac - and that she felt for me. I had told her about it earlier, but it has obviously taken another (unknown) friend of ours to really help her understand how tough this is. I thought I had described it to her, but it did not sink in until now, when she heard about it from somebody else. I do not know why it is so difficult for people to understand this gluten thing: perhaps it is as simple as this: Food is good for you - this is what we keep hearing from the time we start eating solids. Everybody knows that alcohol, sugar and too much fat is bad for you, but WHEAT? OR RYE? OATS? EGGS? YEAST? DAIRY? I think it is simply beyond some people's willingness to accept.

That may also go for part of the Celiac community - there is still a lot of misinformation out there. My own health provider at Kaiser does not accept how sick I can still get from some non-gluten food. Therefore, I now also pay for my own visits with a naturopath.

Don't give up - trust your body. It knows better than many doctors!

[hathor]

Oh dear, I went on a cruise this last summer & had all sort of problems too. And this was with (at least) six celiacs among the 100 plus passengers. (I don't know how many there were for sure; just six of us found each other and tried to help each other out, or at least we ranted to one another.) One of them told me that Norwegian Cruise Line is very good in catering to food sensitivities, though. Keep that in mind for future reference.

Anyway, the people I dealt with didn't even seem to know what was IN what they recommended for me to eat. Why wouldn't a chef know that mayonnaise or hollandaise sauce contains egg? Yeesh! My telling them I couldn't have egg (actually I react to it even worse than I do to gluten) seemed like a revelation every time. I gave them a written list ... repeatedly ... and they still messed it up.

And then I told them not to bring the recommended "Oriental Vegetables" if they contained soy sauce -- and they brought them anyway, I tried them, & I got sick.

Oh well, I got distracted there Still kinda irked, obviously.

And I was even being flexible. I ate fish, because otherwise I wouldn't get enough calories. I don't get sick from fish, at least. It was dang boring, though, since the chef only knew how to season things with cream sauces and cheese.

What I was going to mention was that I've looked at Chang's menu and I'm not sure there is any thing I can have. It seems like I'm getting more sensitive to soy now that I've eliminated it. Chinese restaurants seem to be out of the question these days, unfortunately. But thanks for thinking of me

[Gentleheart]

Oh dear, I went on a cruise this last summer & had all sort of problems too. And this was with (at least) six celiacs among the 100 plus passengers. (I don't know how many there were for sure; just six of us found each other and tried to help each other out, or at least we ranted to one another.) One of them told me that Norwegian Cruise Line is very good in catering to food sensitivities, though. Keep that in mind for future reference.

Anyway, the people I dealt with didn't even seem to know what was IN what they recommended for me to eat. Why wouldn't a chef know that mayonnaise or hollandaise sauce contains egg? Yeesh! My telling them I couldn't have egg (actually I react to it even worse than I do to gluten) seemed like a revelation every time. I gave them a written list ... repeatedly ... and they still messed it up.

And then I told them not to bring the recommended "Oriental Vegetables" if they contained soy sauce -- and they brought them anyway, I tried them, & I got sick.

Oh well, I got distracted there Still kinda irked, obviously.

And I was even being flexible. I ate fish, because otherwise I wouldn't get enough calories. I don't get sick from fish, at least. It was dang boring, though, since the chef only knew how to season things with cream sauces and cheese.

What I was going to mention was that I've looked at Chang's menu and I'm not sure there is any thing I can have. It seems like I'm getting more sensitive to soy now that I've eliminated it. Chinese restaurants seem to be out of the question these days, unfortunately. But thanks for thinking of me

I don't want to get off the main subject of this thread. But I can't believe I finally found somebody else who DIDN'T have a successful gluten free, allergy free cruise. Many other people on this board have very successfully gone on cruises and had wonderful experiences. Mine was awful, at least in the area of food. I realize that cruises are a great privilege and everything else was fantastic. I was beginning to think it was just me.

I'm about to go on another one. They are for my business. I've done everything humanly possible to alert the cruiseline ahead so they can be prepared. I even finally got them to agree to accept dry mixes for pancakes and rice pasta for spaghetti if I bring them. But I don't know if griddles and waffle irons can be trusted after so much wheat batter having been on them. The trouble is, I have so many allergies that there are no pre packaged mixes on the market that will work. If I buy cellophane bags, go to my printer and make up official looking labels and fill them myself with mixes I can tolerate and figure out how to appropriately seal them, I don't know if that will be considered OK. It also might look pretty suspicious in my luggage.

My last cruise consisted of plain meat, plain fish, plain lettuce with olive oil on it and fresh fruit, which I can't tolerate very much of. No appetizers, no soups, no salad dressings, no seasonings, no desserts. They were not willing to branch out for me at all and chose to not season anything either. I hate to sound so ungrateful, but I guess cruises are all about food and I was disappointed.

Sorry to get off the main subject. Maybe this does help to show that multiple allergies along with gluten intolerance are a challenge when you are trying to live life sociably. But we have to face them boldly and not be shy. As more of us educate these restaurants and cruiselines, someday they will finally figure it out and things will be better for us all.

[hathor]

Yeah, cruises can be tough. The one I was on actually had a chef who went out and got gluten-free pasta and made gluten-free bread (probably because there were so many of us to try to placate). The pasta was nearly always with sauces I couldn't have, unfortunately. And the bread ... well, I fed some to some ducks that were tracking the ship. The poor things really struggled with the stuff. I think that was the funniest thing that happened to me on the entire trip I was worried the animal protection folks would get after me.

My idea to improve gluten free life among my compadres was to crumb up the bread in bouillon. We couldn't have the appetizer course usually, nor the regular soups in the soup course. So we would order gluten-free bread & bouillon, which would stave off hunger until we got the main course. The main course was usually small too ... I think they expected people to fill up with these fatty appetizers & soups, plenty of bread, and these decadent desserts.

Lunch on my cruise was OK, because there was a nice salad bar. Breakfast was a problem, because, beyond fruit, there was only potatoes. And the dang other passengers kept serving them up with the same spoon with which they did the eggs. There was another spoon -- what is their problem? (Insert scream here.) I ended up picking bits of egg off of my potatoes every morning and choking down the bread.

OK, to stop hijacking the thread

About casein -- I don't know how much cheese has. Butter doesn't have nearly as much as milk. Indeed, I think some casein intolerant folk can handle it. Ghee is butter that is clarified enough there is no protein left. I'm pretty sensitive, but ghee doesn't seem to bother me. Or I tell myself that so I can continue going to Indian restaurants

Goat's milk has only a tiny amount of casein, or none at all (at least according to something I just heard). So if you are hungry for dairy or want to challenge yourself, you might want to start with that.

[Luisa2552]

April I did the same thing this weekend and I feel stupid. I was at my brothers and his wifes family was all there for a family gathering. They're big hunters and really wanted me to try fresh venison. The meat was marinated in worchtershire (sp) sauce, spices and beer. Here we are all sitting around and the plate is passed to me and I took a piece and ate it. I was expecting my abdominal pain that I get with gluten but what I got within the hour was exhausted! My head was spinning like I had too much to drink (I wasn't drinking) I couldn't keep my eyes open and all I wanted to do was put my head on the table and sleep. I drank tons of water hoping to flush it out. I felt mostly well in the morning, my abdo pain showed up but it was not as bad as it's been in the past.

I feel foolish putting myself through that for the sake of saving face, especially with family! They really don't get it though and I just didn't fel like dealing with it.

Hopefully we have learned from our silly mistakes and put ourselves first next time.

[April in KC]

Thanks, guys. No need to aplogize for thread hijacking. It's all interesting to me.

It is sooo strange that different forms and amounts of gluten (or other foods) can produce different reactions. The "drunk" feeling is just crazy, but it has happened to me at least ten times in the six months I have been gluten free. Less frequently as I get more careful...

When it happens, I know that it will take approximately 3 hours and a nap to feel clearer.

[Di-gfree]

[JNBunnie1]

Eat out? What

[hathor]

If it makes anyone feel any better, last time I got glutened, I was talking with my mother and I couldn't think of a word. Now, you might think no big deal, right? The word was 'punctuation'. I had to ask her, What's the word for periods and commas and stuff? That was a month ago and we're still making fun of me.........

Look on the bright side. At least we all have an excuse for brain freeze other than simple aging The other day I was reminding my daughter to pack her camera, but I couldn't remember the word. I made the motion of taking a couple pictures and my husband said, "Oh, the click click." Nobody will let me forget this

What's irksome is when I have the word but I talk too slowly and my dear family suggests the words for me. Please, I'm not that bad. Plus sometimes they don't get the point of what I'm saying and suggest the wrong words.

[JNBunnie1]

Look on the bright side. At least we all have an excuse for brain freeze other than simple aging The other day I was reminding my daughter to pack her camera, but I couldn't remember the word. I made the motion of taking a couple pictures and my husband said, "Oh, the click click." Nobody will let me forget this

What's irksome is when I have the word but I talk too slowly and my dear family suggests the words for me. Please, I'm not that bad. Plus sometimes they don't get the point of what I'm saying and suggest the wrong words.

I'm 23...........

It's been accepted in the family that Julie isn't allowed to do math, pay bills, or drive much when she's been glutened........

[silly celiac]

(in the spirit of the seeming drunkenness that gluten gives us):

Man, I love you guys!

Sometimes it's so reassuring to know that it's not just me or "all in my head" (haha).

[sfm]

Hi all,

I am here and feeling frustrated with myself for not being able to tell the truth (quite) about this awful business of being intolerant to foods. Yesterday I took a risk I should not have taken, and I had a reaction.

I had a business lunch to attend. My employer was going to be with me, it was a serious luncheon that included an executive with the restaurant itself. They indicated they could handle the Celiac diet because one of the owner's children had Celiac. Great! (I am not going to name the restaurant because I feel like I am the one to blame for what happened, not the restaurant).

Background: I have Celiac and dermatitis herpetiformis, was dx about 6 months ago and quickly developed secondary intolerances on the gluten-free diet. Headaches with coconut. Mid-back pain with any grain, rice and corn included - this is an ongoing problem as it's hard to avoid corn. Headaches and sleepiness with any milk product. I have been off milk for a long time. I recently challenged soy and did not have obvious symptoms, so I have reintroduced in moderation. A couple of weeks ago, I tried quite a good sized block of cheddar cheese and developed a headache - so I "knew" dairy was still a problem but I guess I didn't want to be obsessive about it if it was ONLY a headache.

So when I got invited to this business luncheon, I called ahead they day before and said that I had special dietary needs and would need to eat gluten free AND (apologetically) also rice and corn free. I just couldn't quite make myself speak the words that I also needed to be dairy free. In my mind, I thought, it's probably only a headache if you get a dish with dairy - so suck it up.

Long story short, I ended up getting a good dose of dairy with my meal, and I paid for it. Either that, or I got glutened, but I don't think so as I have not had GI symptoms today, and so far no itch of oncoming DH. On my way back from lunch, I got a bad headache and started having problems connecting my words and thoughts. By the time I returned to work, I was useless - my hands were buzzing, I felt drunk for lack of a better description (no alcohol consumed), and I was reversing letters when I typed. Within an hour, I was asleep. I actually had to stay at work late just so I could sleep off my reaction enough to safely drive home. It was the tranquilizer reaction I have experienced before. I am never quite sure if that is gluten or dairy, but now I am leaning toward dairy.

Today I am frustrated. I feel dumb for not stating all of my needs in a clear way. I knew that gluten free was "one strike", and I felt like grain free was strike two. I just felt like if I said dairy free, that would be strike three and I would be out. Out of the norm. Out of serious consideration. Out of my mind.

Does anyone else know what I mean? Do you feel like if you tell people the truth, they will think you're some kind of delusional weirdo?

Honestly, I don't really feel like telling this to my GI doc - it just sounds too unbelievable.

This is where I can vent and post this. Thanks.

April

April,

I have been through the same. I always downplay the seriousness of my "issues." Eventually I arrived at calling it a severe food allergy, as I feel that restaurants tend to take that more seriously.

But I agree - those times when I do expose myself to cross-contamination, it is usually my own fault, as I am not clear enough about what I need. I have had some excellent experiences at restaurants, where they were completely on top of the separate preparation, etc. - but only when I make it clear. So why do I still sometimes downplay it?

I also tend to become lax when I am feeling good, which is downright stupid. This weekend I had breakfast at a local restaurant where I've eaten numerous times with no problems. But they said they had hash browns, and I thought, yum, it never occurred to me that they might have bread crumbs until after my first bite, when my daughter said, Mom, those look like they have bread on them.

So needless to say, this week I'm not feeling quite as good...

Sheryll

[sfm]

Goat's milk has only a tiny amount of casein, or none at all (at least according to something I just heard). So if you are hungry for dairy or want to challenge yourself, you might want to start with that.

My understanding is that goat milk does have casein, which is slightly different from cow's milk casein. It will vary from person to person how strongly they react, but it is not really recommended for someone with a casein intolerance.

[krebbecca]

I cruised on Carnival last month and it was wonderful! I warned them in advance and they made sure my waiter, dining room hostess and chef all knew about gluten. Between dinner and dessert each night the hostess showed me the menu for the following night. She knew about ingredients in almost everything and I was able to eat fruit and usually some sort of soup. I picked out my meat and the chef prepared it plain with steamed veggies and plain red potatoes instead of the normal sides. I had duck, steak, polenta, pork... all were wonderful. I was able to have the chocolate melting cake, ice cream, and creme brulee for dessert and one night the chef even made me a special "cheesecake." It was delicious, if not anything like real cheesecake. :-)

My hostess was also able to help me with food on the Lido deck for breakfast (omelets, yogurt and fruit). I tried a cheeseburger, no bun, for lunch but ended up sick so I would suggest only eating in the dining rooms where the chefs can prepare things without contamination.

Anyway, I'm sorry you had bad cruise food experiences, but it is possible to have wonderful dining on a cruise. I hope you'll try again! I gave the waiter, hostess and chef very high remarks on the comment card so hopefully they'll be rewarded for their extra effort.

[krebbecca]

I understand your frustrations. I don't go out very often, but when friends or co-workers go out I feel obligated to go once in a while. I feel bad that it takes longer for me to order, and I get depressed that I'm paying so much money for plain meat and steamed veggies while they are all ordering delicious-sounding items. Just last week we went to a nice, fancy new place with another couple. I was fairly optimistic and the chef's daughter has Celiac so I was confident that there wouldn't be contamination. Unfortunately, there was little on the menu that the chef could prepare gluten-free without it "losing all its flavor." So I ended up with a normal sirloin with safe "spices" (salt, pepper and garlic salt), brushed with butter and without the normal demi-glaze. I was excited not to order plain meat but it turns out that without the demi-glaze to offset all the salt it wasn't very good at all. It was disappointing and I found I couldn't even enjoy the time with my friends.

It's difficult for others to understand that everytime I eat something anyone else has prepared, it is stressful for me and there isn't anything they can do to make it better. I feel high maintenance and when I do get glutenized I try to hide it because I don't want others to think I'm being difficult.

It's only been 5 months... does this feeling ever go away?

[Guest Doll]

Awww...hugs everyone! I know how you feel April. You want to be normal and enjoy life like before. I miss those days too. Until Celiac, I had never had any problems with any food whatsoever. No stomach issues of any sort either.

Everytime I have to eat out for social events (which I refuse to miss since I want to get some enjoyment out of life), I have to point at my Medical Alert and stress "severe gluten and milk allergy". I do try to go to large resturants familiar with the gluten-free diet. Say Celiac Disease and it is often not taken as seriously or has no meaning. I say that I want to have a good time and not end up in the hospital tonight. Usually the waiter/chef tries hard, and it's a crapshoot if I react or not. A printed list (i.e. allergy dx sheet for me) of what you cannot have can be given to the kitchen. NEVER be ashamed to speak up, although I know how it feels to worry that people think you are "crazy", high maintainance, or overly sensitive. And I have to accept that some people will. But at the same time too, people with allergies tend to have more than one, so why is it such a stretch for those with intolerances?

When I eat out, I often pay $50 for a plain steak (no spices), plain steamed veggies (no butter or margarine), and a plain baked potato. I cannot usually ever have anything off the desert menu, sometimes fruit cups are offered. I have long given up on "tasty" food. I used to LOVE good food. Now, it's the interactions with the people that matter. You can even bring your own lunch if you want. Although most people are clueless about Celiac (but not all), a good portion understand food allergies. Another good bet is ASIAN FOOD. Many of those places use cornstarch and are Celiac friendly.

Your best bet if you do choose to eat out is to go plain, plain, plain. Bring your own spices and a small portion of dairy free margerine.

You are NOT alone.

I hate getting wistful over food (it could be worse), but it's more then that. It's loss of freedom, normalcy, and choice.

P.S. Holy cow! I get the "drunk" feeling too, but in my case it seems to be allergy related as I get it even if not glutened, and feel better when I avoid eating (not that this is a good thing).

[Matilda]

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