Could I Be Anymore Pathetic

[paw]

I don't eat dairy or gluten. I did not cry at Christmas but we had two dinners with family. At my side there was NOTHING for me that was safe to eat. I was ok with that because I had a migraine headache so bad I was vomiting and could not have eaten anyway. I think there were safe potato chips (but were they cross contaminated by the kids grabbing chips and Grandma's cranberry bread and cookies?)

At my husband's family, the Turkey was ok. And that was all that I could eat. Every vegetable had dairy on it, green bean casserole with cream soup and fried (GLUTEN) onions, cheese sauce on other things, pretzels instead of potato chips that I could have had and cakes and pies for desert . . .

So I had turkey and a can of coke. There was no place to stop to eat on the 150 mile each way drive and I would not have known what to get if there were a fast food place open. I am glad Nikki cooked the dressing on the side or I would have been down to a can of coke. It is too far to carry cooked food safely and the kitchen is so wheaty that warming something up would not even be safe. I would not feel comfortable to walk into her house and demand to scrub the counters, microwave and everything in sight in the middle of the confusion of cooking a big meal. The kitchen is small and every inch was busy. It looks like any future holiday meals won't have food in them for me.

I don't think the family is willing to bend -- they knew that I would get really sick if I ate wheat and there were still no offers of safe food. I was told there would be vegetables, but they were changed for cheese dip and crackers. I would have to choose to take away my kids chance to see the family at the holiday to make sure I got food to eat those days. Both are a drive and eating first would not be enough. I was not going to eat something unsafe and make myself sick with a long drive home, it is just not worth it.

[IronedOut]

i WAS AT WORK AND ONE OF THE DRUG REPS BROUGHT IN OLIVER GARDEN ( ITALIAN FOOD) I KNEW IT WAS THERE IWENTOVER TO GET SOMETHING TO DRINK AND THEN I STARTED SMELLING AND SEEING ALL OF THE FOOD AND WHEN I LEFT THE ROOM I CRYED. I KNOW ITS A STUPID THINK TO CRY OVER BUT WELL I COULDNT HELP IT.

I read this and started to cry for you. My diagnosis has been sudden and unexpected since I am very asymptomatic. I sat in the parking lot of the grocery store after a monumental 2 hour shopping trip and cried.

We will get the hang of this and it will get easier (my new mantra). We will have teary moments but we deserve to indulge our emotions every now and again.

And we have all these great new friends to help us feel better afterward.

[tiredofdoctors]

I don't think it's pathetic at all. Don't be so hard on yourself. The entire process, in my experience, takes a long time to go through. I still grieve, still get my feelings hurt, still get really angry . . . . The fact that my family doesn't make any accommodations for birthday cake for me (birthdays are a big deal with our family) is extremely hurtful. I cry on the way home after every event. Last year, when I was first diagnosed (gluten ataxia), my docs wanted me to have counselling to help deal with the changes in my life. We discussed the food issue quite a bit. She told me to take my time . . . I just think it's natural for feelings like that to pop up -- sometimes when you least expect it. I probably would have cried over Olive Garden, too . . . Lynne

[num1habsfan]

thats not pathetic, I do that too..even though Ive been on the diet for almost 3 years, every once in a while i totally have to break down and cry.

You arent alone, thats for sure, i'm sure we all know how you feel.

If you ever need anyone to talk to, just let me know, i'm always here to listen, as i'm sure is everyone else!

~lisa~

[jknnej]

I get upset over foods I miss, too. Like Philly cheesesteaks and NY bagels. Oh I can't watch others eat them. Or Oreos cookies. Man, it sucks sometimes LOL!

What actually upsets me the most, enough to make me cry, is just simple things like going out with others and watching them eat...like a pizza party at the school I teach. Feeling left out is almost worse sometimes than the actual food. But I always remind myself of how blessed I am to feel healthy now:)

[num1habsfan]

I get upset over foods I miss, too. Like Philly cheesesteaks and NY bagels. Oh I can't watch others eat them. Or Oreos cookies. Man, it sucks sometimes LOL!

What actually upsets me the most, enough to make me cry, is just simple things like going out with others and watching them eat...like a pizza party at the school I teach. Feeling left out is almost worse sometimes than the actual food. But I always remind myself of how blessed I am to feel healthy now:)

If you want Oreo's, order from Kinnikinnick!! I just got some and OMG i wouldnt know the difference between it and the real thing...

~lisa~

[teebs in WV]

Elonwy,

I do the same thing! Today at work I went into our kitchen and there was a huge platter of deli sandwiches on the counter (crumbs everywhere of course). I was ranting and raving about their nasty "gluten- infested"food.

[Canadian Karen]

That reminds me of someone who posted here a long time ago (I can't remember who) who said that every time their kids walked down the bread aisle, they chanted "Aisle of Death! Aisle of Death!"....

Karen

[mouse]

I guess that I really don't miss that much (except the fish n chips-but I am originally from Seattle, yum). I was so thankful to be alive after almost being dead that I really embraced this way of eating. I have to admit that I do live vicariously - I look at the foods I can't eat and sniff. My friends are used to it. But, the one thing I have not had for about 20 years is a glass of milk with my tuna fish sandwich...I REALLY miss a glass of milk at that particular moment.

[Canadian Karen]

I miss my chinese food the most. Broncobux gave me a good recipe for Schezwan that I am going to try this weekend though. (I am sooo excited!!) I was never really a pasta freak before having to go gluten-free, so that wasn't so hard to pass up. Fish, never liked any seafood. Being from a Newfie family, I am the black sheep. If my family lived in Newfoundland while I was growing up, I would have starved to death!

Hugs.

Karen

[hlm34]

i definitely think that the place i notice my celiac the most is at work. There is always baked goods in the kitchen that someone brought in. Or there are plenty of times where we have meetings over the lunch hour where they order in pizza or something - and then you just sit and stare at that wonderful pizza and realize you can never have that again. Or many times we will take clients out to a fancy restaurant and all these exotic tasty appetizers are being passed around and you can't partake in any of them. And then you have to alienate yourself even further by ordering something like a plain chicken breast. I know that a lot of people's solution is to bring food with them to restaurants - but it just seems weird to me to be at a nice restaurant in front of clients and pull out my enjoy life bar and some trail mix, you know? anyway, i know what you are going through. there have been plenty of times that i have been on the verge of tears at work. at home i just dont buy any of that stuff so it isnt sitting right in front of me and tempting me. But at work - of course co-workers have that stuff and can bring it or order it in. work is a whole different ball game than home for sure.

P.S. Elonwy - i have the grocery store jiggy dance too. its kind of like when football players do the touchdown dance. i like to mix it up - try new dances. I dont care - those people just don't understand. you should have seen me practically breakdancing down the aisle when i bought some cocoa krispies the other day. i found out from this board that i can have those (i had no idea), and man, soooo happy.

[DingoGirl]

I was just diagnosed with this, my GI suspected it and endoscopy/blood tests confirmed it. I sent a private message to a member who seems to kind...but I have to post my first post. I feel literally grief-stricken, as though life is over! I can't believe I have to pay so much attention to food, which I never gave a thought to before. I am extremely anemic and pretty much malnourished. Went to Whole Foods today, and also had a breakdown, crying in every aisle. Where else can I shop that isn't so expensive??? Had to turn down a gallery opening tonight because I was HUNGRY and had to stay home and figure something out. What the heck do we eat, that doesn't require lots of cooking time and ingredients and recipes? What about cheese and dairy? What about my belobed spearming gum, that I'm addicted to? my lipstick? How do I find out about cosmetics? What do I sit down right now and eat for a snack? I think that gluten-free loaf of bread was around $7 today....can we find it cheaper? what about canned refried beans - is that allowed on those hated corn tortillas I had to buy today? I don't know how to eat to get through every day. There is no microwave at work - how am I going to eat there?

I am trying to tell myself the upside. that I"ll feel better in a few weeks with this diet....if I don't starve to death! I have read all of your comments, and I am just dumbfounded to find myself in this other-worldly situation. How long does it take to feel NORMAL, or do we ever??

I think I'm just going to finish this glass of wine - I THINK that's allowed - and cry myself to sleep.....sigh.

[JKJ]

I've cried over food I can't eat too.

tonight I made my hubby and son fried pasta with my homemade sause, meatballs, sausage..with fresh italian bread.

I has bologna sandwich on a gluten-free roll with mustard at least it was something to eat besides chicken!

Oh my - -I do hope you have tried wheat/gluten free Pasta! We still enjoy spaghetti and pasta salads and I really don't detect much difference at all -- (especially day old - after all the flavors have really "married" !)

No need not to enjoy Pasta!

JKJ

[mouse]

Welcome Dingo Girl. This really does get better and EASIER. The food labeling law will help. There are still some old labels out there so just look for the ones that will say food allergens above the list of ingredients. What helped me 2 years ago, was that I bought the blue binder book from The Celiac Sprue Association and took it with me to the grocery store. It took me a long time to do my grocery shopping, but it was a big help. The book is not the best list, but it is an easy place to start. Now I just check it at home if I am looking for something special. There is fantastic bread, cookies, awesome brownies, etc. from Kinninnick (sp) foods and they have a web site. The shipping is a flat $10 and so I wait until I am on my last loaf and then place a large order. There is Tinkyada pasta that my family cannot tell the difference. I get my pasta at my local grocery store in the health food aisle. I use regular receipes and just convert what I have to. I feed two teenagers who are not gluten free and they love my dinners. I make gluten free brownies that no one can tell they are gluten free. You can make yourself a wonderful sandwich on Kinninnick bread to take to work. Most Lays potato chips are gluten free. There are now many main stream items in your local grocery store that are gluten free. It will just take some research on your behalf and we are all here to help you. It seems overwhelming at first, but trust me, that it will become second nature to you. And you will be so happy not being sick anymore.

[Rachel--24]

Hmmm....so far I havent cried once over food. It definately sucks to not have that convenience factor anymore. I work in a grocery store with a deli and a bakery and I can smell all the things I cant have all day....but still no tears about it. Apparantly I'm in the minority here. Maybe it hasn't hit me yet?

Oh...I cry plenty when I'm glutened or otherwise not doing well....just no tears over the loss of everything I've eaten and loved my entire life. Is that weird?

[Guest nini]

I was just diagnosed with this, my GI suspected it and endoscopy/blood tests confirmed it. I sent a private message to a member who seems to kind...but I have to post my first post. I feel literally grief-stricken, as though life is over! I can't believe I have to pay so much attention to food, which I never gave a thought to before. I am extremely anemic and pretty much malnourished. Went to Whole Foods today, and also had a breakdown, crying in every aisle. Where else can I shop that isn't so expensive??? Had to turn down a gallery opening tonight because I was HUNGRY and had to stay home and figure something out. What the heck do we eat, that doesn't require lots of cooking time and ingredients and recipes? What about cheese and dairy? What about my belobed spearming gum, that I'm addicted to? my lipstick? How do I find out about cosmetics? What do I sit down right now and eat for a snack? I think that gluten-free loaf of bread was around $7 today....can we find it cheaper? what about canned refried beans - is that allowed on those hated corn tortillas I had to buy today? I don't know how to eat to get through every day. There is no microwave at work - how am I going to eat there?

I am trying to tell myself the upside. that I"ll feel better in a few weeks with this diet....if I don't starve to death! I have read all of your comments, and I am just dumbfounded to find myself in this other-worldly situation. How long does it take to feel NORMAL, or do we ever??

I think I'm just going to finish this glass of wine - I THINK that's allowed - and cry myself to sleep.....sigh.

Old El Paso refried beans are fine, but I also found AT WALMART their Great Value Brand refried beans and they were actually LABELED gluten free!

It does get easier. There really is a lot of mainstream food that is gluten free, it just takes a little patience, research and reading to figure out which foods are safe. The Delphi list and other lists available on this forum are extremely helpful.

[lonewolf]

I am trying to tell myself the upside. that I"ll feel better in a few weeks with this diet....if I don't starve to death! I have read all of your comments, and I am just dumbfounded to find myself in this other-worldly situation. How long does it take to feel NORMAL, or do we ever??

I can so totally relate to being "dumbfounded". I found out one day (almost 10 years ago now) that I couldn't have wheat, as well as several other foods and literally had nothing in my house that I could eat for dinner. I cried. It took a while to figure it all out and I didn't have any resources - no internet or anyone I knew that had any food restrictions. I hope you learn all you can about Celiac from this website and post lots of questions- everyone here is really nice and happy to help.

As far as easy to make food goes, try chicken, fish or steak with baked potatoes or rice. Buy gluten-free pasta and sauce. Salads are great too. It won't take long before you figure out how to make most of your favorites gluten-free. Do a search for "Lunches" and I'm sure you'll find a couple of threads that give lots of great ideas about what to take for lunch. I take lots of salads (Chicken Caesar, Taco, etc.) and sandwiches on gluten-free bread.

Good luck and hang in there. It really will get easier.

Liz

[elisabet]

I have cried over food my son can not eat.

[teebs in WV]

I have been on the gluten-free diet since the end of October and definitely remember what it feels like at first. I felt the same way that you are describing that you feel. It does get easier (althought I'm not sure that I will ever feel 'normal' about all this, but only time will tell).

Another thing - I am noticing that my taste buds are adapting to this change. In the beginning, I could not stand to eat the gluten-free bread or pizza crusts. Now, I don't seem to mind them so much. Also, I know what you mean about the despised corn tortillas - I hated them before going gluten-free. Now I find that I eat them quite frequently (at least once a week). They are a quick snack if you put shredded cheddar cheese on them and stick them in the microwave for a minute to melt the cheese. I am really starting to like them now! So be patient and give it time.

Hang in there - the more you read this forum, the more you will see that there are many, many people out there going through the same things you are. It definitely makes it easier to get through tough days.

One word of caution - be very careful relying on every food/brand that is identified by individuals as being gluten-free on message boards. Most people on here are very reliable and have done their own research. However, I have seen a couple of posts indicating a product is gluten-free when in fact it is not. I find that this board is a good place to start by asking questions, but it is always a good idea to confirm with manufacturers, or other official celiac disease organizations if a product is gluten-free. I have made mistakes with this myself - I have thought that I had confirmed that a certain product was gluten-free, and later found out that I had misread something. I am not saying that people are intentionally leading anyone astray - it is just that we are all human and sometimes make mistakes.

One of the issues is that this is a GLOBAL forum, and each country's policies regarding what is considered gluten-free is different. Also, manufacturers may have different practices in one country, than what they do in another.

Take care,

[num1habsfan]

Another thing - I am noticing that my taste buds are adapting to this change. In the beginning, I could not stand to eat the gluten-free bread or pizza crusts. Now, I don't seem to mind them so much. Also, I know what you mean about the despised corn tortillas - I hated them before going gluten-free. Now I find that I eat them quite frequently (at least once a week). They are a quick snack if you put shredded cheddar cheese on them and stick them in the microwave for a minute to melt the cheese. I am really starting to like them now! So be patient and give it time.

Yeah i totally noticed the change in taste buds too. And I can usually tell when I might be contaminated. gluten has a very weird bitter taste to it haha. So while I'm eating something its like "crap, that aint good". Can you do this too?

~lisa~

[DingoGirl]

I have been on the gluten-free diet since the end of October and definitely remember what it feels like at first. I felt the same way that you are describing that you feel. It does get easier (althought I'm not sure that I will ever feel 'normal' about all this, but only time will tell).

Another thing - I am noticing that my taste buds are adapting to this change. In the beginning, I could not stand to eat the gluten-free bread or pizza crusts. Now, I don't seem to mind them so much. Also, I know what you mean about the despised corn tortillas - I hated them before going gluten-free. Now I find that I eat them quite frequently (at least once a week). They are a quick snack if you put shredded cheddar cheese on them and stick them in the microwave for a minute to melt the cheese. I am really starting to like them now! So be patient and give it time.

Hang in there - the more you read this forum, the more you will see that there are many, many people out there going through the same things you are. It definitely makes it easier to get through tough days.

One word of caution - be very careful relying on every food/brand that is identified by individuals as being gluten-free on message boards. Most people on here are very reliable and have done their own research. However, I have seen a couple of posts indicating a product is gluten-free when in fact it is not. I find that this board is a good place to start by asking questions, but it is always a good idea to confirm with manufacturers, or other official celiac disease organizations if a product is gluten-free. I have made mistakes with this myself - I have thought that I had confirmed that a certain product was gluten-free, and later found out that I had misread something. I am not saying that people are intentionally leading anyone astray - it is just that we are all human and sometimes make mistakes.

One of the issues is that this is a GLOBAL forum, and each country's policies regarding what is considered gluten-free is different. Also, manufacturers may have different practices in one country, than what they do in another.

Take care,

Thank you all for these words of comfort and advice. I am just continuing to read and study as much as I can. I know my ferritin level is 3, so I feel very weak, am taking iron supplements 2x day - hope that helps.

I ate bacon today and yesterday, thinking that was okay, happened to look at ingredients - SOY SAUCE. Super! So I'm still eating gluten, unbeknownst to me....

Oh, the loaf of bread at Whole Foods (which I affectionately refer to as Whole Paycheck) was actually $8.29. Um, any ideas for cheaper bread??????

[teebs in WV]

Sorry that I don't have any advice for any cheaper breads. I know that many on this forum make their own (bread machines), but I have not attempted that yet. I found that at first, it was best for me to just forget about bread. For me, I would rather go without, than eat something that I thought tasted like crap. I am not implying that quitting bread is an easy feat by any means. I'm sure that others with much more experience than me will chime in with suggestions on breads.

As for soy sauce - did you try to find out if the type that was used in the bacon that you ate contained wheat? Not all soy sauce is bad - you just have to check.

[ianm]

Welcome DingoGirl. I just don't eat bread anymore because I don't like expensive cardboard. For me I just stick with fruit, veggies, meat, cheese and yogurt along with buckwheat and flaxseed. The gluten free processed stuff is just too expensive.

[jerseyangel]

Hi dingogirl--welcome in! I can see that you are feeling overwhelmed. I can tell you that it will become easier--after you've been at it a while, it becomes second nature. There are lots of things we can eat. All fresh meats, fruits veggies, nuts, and most dairy foods (if you can eat them, check labels) are naturally gluten-free. Oscar Mayer bacon is gluten-free and very good. Wrigley Spearmint gum is gluten-free. Also, Neutrogena Moistureshine lipgloss and lipsticks are gluten-free. You have to make sure that your shampoo, lotion, soap, etc. are gluten-free also. I use products from The Gluten Free Savonnerie (1-888-6GF-SOAP). There are also drugstore brands that are safe--Thermasilk is one that I checked on myself. You can do a search here and find many others. I use Bare Escentuals makeup--there are other brands that have gluten-free items. Neutrogena has many (but not all). Do a search for the complete list. Make sure to go through the kitchen and replace any wooden utensils and cutting boards. You should have your own toaster--I got mine at Wal Mart for $11.00. The collander should be replaced and only used for gluten-free food. Tinkyada brand is an excellent rice pasta--Whole Foods has it as well as some regular grocery stores. Now that I'm "over" using a lot of pre made mixes, I do almost all of my food shopping at a regular grocery store. I go to Whole Foods once or twice a month to pick up the few things I can't get anywhere else. You can always come here to ask questions as you go along. Also--make sure any vitamins and meds you take are gluten-free. BTW--I was extremely anemic--I had trouble standing for long periods, my hair had begun to fall out, I bruised easily and was so pale, my husband said I looked "transparent"! I had blood work done after 6 months on the diet--the anemia is gone! The changes will come--not overnight--but it will get better

[DingoGirl]

Hi dingogirl--welcome in! I can see that you are feeling overwhelmed. I can tell you that it will become easier--after you've been at it a while, it becomes second nature. There are lots of things we can eat. All fresh meats, fruits veggies, nuts, and most dairy foods (if you can eat them, check labels) are naturally gluten-free. Oscar Mayer bacon is gluten-free and very good. Wrigley Spearmint gum is gluten-free. Also, Neutrogena Moistureshine lipgloss and lipsticks are gluten-free. You have to make sure that your shampoo, lotion, soap, etc. are gluten-free also. I use products from The Gluten Free Savonnerie (1-888-6GF-SOAP). There are also drugstore brands that are safe--Thermasilk is one that I checked on myself. You can do a search here and find many others. I use Bare Escentuals makeup--there are other brands that have gluten-free items. Neutrogena has many (but not all). Do a search for the complete list. Make sure to go through the kitchen and replace any wooden utensils and cutting boards. You should have your own toaster--I got mine at Wal Mart for $11.00. The collander should be replaced and only used for gluten-free food. Tinkyada brand is an excellent rice pasta--Whole Foods has it as well as some regular grocery stores. Now that I'm "over" using a lot of pre made mixes, I do almost all of my food shopping at a regular grocery store. I go to Whole Foods once or twice a month to pick up the few things I can't get anywhere else. You can always come here to ask questions as you go along. Also--make sure any vitamins and meds you take are gluten-free. BTW--I was extremely anemic--I had trouble standing for long periods, my hair had begun to fall out, I bruised easily and was so pale, my husband said I looked "transparent"! I had blood work done after 6 months on the diet--the anemia is gone! The changes will come--not overnight--but it will get better

THANK YOU so much!! It is great to hear about specific cosmetic products.....AND I can still chew my gum. I am so encouraged to hear about your anemia and that it actually turned around. My hair has been falling out in handfuls for about a YEAR. I bought very expensive shampoo which seemed to stop it, but hopefully this diet will help as well. It makes sense, though, malnutrition leads to hair loss. I wonder if it also led to my recent breakup - I have been moody, exhausted, depressed and easily irritated for a long time. Heck, I usually feel just plain lousy. But, even after only three days, and even though the bacon I ate the last two had soy sauce, most of my abdominal symptoms seem to be gone ALREADY.

I am grateful for the support here - makes it not quite as lonely.

Susan