I'm Going Nuts

[Mo92109]

I don't know what to do? I got a celiac test done 2 years ago after a blood test showed I was wheat intolerant. Well, the test was negative and I continued to eat gluten and feel like crap. Just assumed I was meant to feel like crap. After about a year of reseaching, I decided to go full on gluten free and WOW. I didn't know it was normal to not have D everyday or not have a stomach ache.

Anyway, since then, pretty recently, actually, when I have eaten something with wheat/gluten, I have a classic allergic reaction right away (itchy, sneezing, watery eyes) then the next 2-3 days, I just don't feel good, have D and the stupid's. So, I went back to a specialist who confirmed what the test said, but thinks I developed Celiac since then. However, he does not want me to take the gluten challenge (was 1/2 hoping I could... miss so many things) because of the allergic reaction similar to someone with a peanut allergy. Anyway, he took a blood test and I am wating for that, but I swear my friend does not believe me!!

For example(s): When I get gluttoned and say I must have eaten something bad, she says I am a hypochondriac and that sometimes people just get upset stomachs.

She had a dr. tell her to not eat "white" carbs, so when I say I can't have something, she'll say "Well, I am not SUPPOSED to either, but I still do sometimes..."

I told her how upset I was at this last appointment, I need to see a dietitian and may be allergic to other things and she's like "Well, no big deal, you'll just have to eat healthy like I do" (She's a vegetarian). I told her thanks for trying to be nice, but my diet is NOTHING like hers just because she eats "healthy", that I can't have condiments, can't go out to eat and be 100% safe, I have to watch everything. Well, since then, she just ignores anything I say about it I mention finding something gluten free and she'll tell me where she's going after work. She'll tell me she got a great sandwich for lunch and I'll say how I wish I could have a sandwich (and I'm not all weepy about it) and then she'll change the subject again. I am so frustrated. She's supposed to be my best friend but won't talk to me about a HUGE part of my life. I seriously think she doesn't believe me! My husband wants me to ditch her (he took awhile to get on board with me, now he eats rice pasta) but she is a close friend. Anyone have advice?

Thanks for letting me vent, I feel a little better.

[cgilsing]

I don't know what it is about celiac disease that makes sooo many people lable us as hypochondriacs There are a lot of people on this board who have someone in their lives that acts like that! Yours truely included! What gets me is that no one would ever dream of rolling their eyes and telling a diabetic to get over their sugar problem! Or hand someone with a peanut allergy a PB&J sandwich and say "a little isn't going to hurt you!" But with celiac disease people seem to think that this is perfectly acceptable behavior! I guess maybe it's because our symptoms are often a private matter and not something that they are going to have to deal with personally (like diabetic shock, or someones throught closing up). People act like this is some low-carb diet on crack that we all made up to make everybody's life difficult! Your friend is being rude....and downright uncaring.....I just wouldn't even talk to her about it anymore. And maybe I'd serve her a hotdog or something and tell her to get over her veggie thing and eat up!

[wolfie]

((((HUGS)))))

I don't have much advice b/c my sister is very similar to your best friend. Telling me just to pick the croutons out of my salad, take the bun off my burger, etc. She and I are very close, but that really does drive a wedge between us. I will say that she did respect my gluten-free diet when I stayed with her for a week, but ignored some of my other food intolerances. That is okay, though, those won't cause as much damage in the long run hopefully.

I have to say that she isn't being a very good friend right now. If you aren't comfortable with sitting down with her and having a heart to heart, maybe send her a card and include a note letting her know how you feel. Maybe she is in denial and doesn't want you to have to follow a strict diet like this? I don't know. In my opinion, though, I'll take this diet anyday over how I felt before I went on it.

[Mo92109]

Thanks you guys. Really needed to vent.

I have been reading about this in depth for a few months now and am learning that it's pretty common. Not that I am wishing people GET this, but I hope the ones that have it already hurry up and find out about it and then eventually everyone will know about it (Like the peanut allergy or diabeties like you mentioned).

Is that mean I think that way?

[Mandy F.]

I too have dealt with a lot of friends and coworkers who labled me a hypochondriac but it was mostly with my endometriosis. I haven't had any major celiac sympotms so that hasn't been an issue for me. I found that the easiest thing to do was to accept that my relationship with someone had changed. There are some people who were once close friends that I'm just not as close to because they can not relate to or minimalize the problems that I have to cope with every day. I would not suggest that you drop your best friend because in most of the other areas of your life, she is and could still be very close to you. I would just look for others who are more willing to share this with you and avoid the topic of celiac around her -- unless it comes down to deciding where you are going to go out to eat or something. Maybe over time she'll come around...

[tarnalberry]

It sounds like there's a bit of a power struggle going on there, between the two of you on dietary issues - and it's probably quite normal given that you're both being faced with some dietary changes that you don't necessarily really really want to make. (Regardless of whether or not the changes are qualitatively different, it sounds like she doesn't want to make her changes, and I know of few people who are clamouring to go gluten free 'cause it sounds like a hoot! ;-) ) I'm sure a psychology buff could have a blast trying to analyze the motivations and signs in the whole thing, but I think the easiest solution is to back off from it.

I'm not saying give up your friend, I'm saying to disengage from the food war. If she says "I just got a great sandwhich today", don't say "I wish I could have one" - that's a ploy looking for sympathy, and you've already determined that you're not going to get it from her. Just say "that's great, I'm glad you're enjoying it". Disengage from the competition or the search for sympathy in a place that she doesn't understand. It'd be great if she could help you out there, but apparently she doesn't understand. Heck, she may resent that you have a limitation that you ARE able to stick with (even if the consequences are greater), because it means you're more successful at it than she is...

No one can provide all the support we need in all the areas we need it.

[VegasCeliacBuckeye]

You can have tons of condomints...

French's Mustard

Heinze Ketchup (not the organic kind it has gluten)

Mayonaisse (I'v never seen one with gluten)

Lea and Perrins Worchestishire Sauce (sp?)

Franks Red Hot Sauce

And the list goes on and on...

For some reason, some vegetarians and vegans have a difficult time giving sympathy or understanding to Celiacs. You would think they would understand.

Then again, they are dealing with a diet by choice and we have no choice.

The best way to feel better is to keep educating yourself about Celiac and food. Once you get you cooking skills up to par and once you know where you can eat safely, you won't need as much understanding from friends and family. After awhile, you will look at celiac disease as a "benefit" rather than a hinderance. At least that is the way I look at it.

Regardless, you have 9,000 people on this site who are always here for support or a shoulder to cry on.

p.s. Ditch the basic rice pasta and order some Tinkyada pasta -- it is the best on the market (doesn't get mooshy)

[Mo92109]

I would just look for others who are more willing to share this with you and avoid the topic of celiac around her -- unless it comes down to deciding where you are going to go out to eat or something. Maybe over time she'll come around...

It's funny you say that because the last time we were going out to eat, she told me to choose where because I am the "picky" one. I was seething about that for days. PICKY.....

[tarnalberry]

It's funny you say that because the last time we were going out to eat, she told me to choose where because I am the "picky" one. I was seething about that for days. PICKY.....

In a sense, we are the picky ones. We won't eat a number of things. We are very choosy over what we will eat, and will turn down a number of things. By most people's definitions, that is picky. Whether we choose to associate the word 'picky' with a negative connotation is our own choice. I learned this lesson the hard way as my husband is a 'picky' eater - he's got rather sensitive taste buds, and if it's got a bit of a taste that might turn someone off, he'll find it 100 times stronger. There are a number of things that he just really really doesn't like the taste or texture of. I suspect he's a super taster. (There's a chemical basis for this in the taste buds...) So he is 'picky', in that there are a number of things that he doesn't like, but there are reasons for it, and it's a matter of preference, and it's alright to have that preference. So, we still use 'picky', but in our household, it is not a negative thing, at all, it's just like saying that someone prefers to wear 'nice clothes' or saying that someone prefers to wear 'comfortable shoes' or that someone prefers to drive 'automatics instead of stick shifts'. It's just a choice.

Of course, you're friend does sound like she could use a lesson in manners, but hey, if she wants to give you the sole power of choosing where you eat... OKAY! Sounds good!

[Mo92109]

In a sense, we are the picky ones. We won't eat a number of things. We are very choosy over what we will eat, and will turn down a number of things. By most people's definitions, that is picky. Whether we choose to associate the word 'picky' with a negative connotation is our own choice.

That is an excellent point, actually, and kind of made me feel a little dumb reading it. I guess I associate "picky" with not liking a lot of foods. I LIKE everything, I just can't have anything.

[Mandy F.]

Is she Vegan? Because I would love to just say, "Well, if I'm picky, what does that make you?" I know... Childish... but sometimes you just want to say it, don't you? I'm sorry she's being so awful... I wish there were more I could do for you.

[tarnalberry]

That is an excellent point, actually, and kind of made me feel a little dumb reading it. I guess I associate "picky" with not liking a lot of foods. I LIKE everything, I just can't have anything.

Eh... Probably because a lot of parents used to use that word that way. My husband was really sensitive about the word being used that way (and I didn't realize it until we talked about it) until he mentioned that his whole family would calling him "a picky eater" in a negative way, saying "you should be such a picky eater" - and his family is by NO means mean AT ALL. But it adds up to feel negative when you hear it over and over and people are weird about food in our culture.... Blah. You're doing what's right for you - Good for you! :-)

[Mo92109]

Is she Vegan? Because I would love to just say, "Well, if I'm picky, what does that make you?" I know... Childish... but sometimes you just want to say it, don't you? I'm sorry she's being so awful... I wish there were more I could do for you.

Ha, thinking about it, it's kind of funny. She will eat chicken, but not on the bone. Will eat turkey too, but not pork, red meat, or seafood. So, not vegan, just, dare I say, picky?

[Mandy F.]

Ha, thinking about it, it's kind of funny. She will eat chicken, but not on the bone. Will eat turkey too, but not pork, red meat, or seafood. So, not vegan, just, dare I say, picky?

LOL!!!

Well, I have my own opinion on "vegetarians who eat poultry." No matter what they say They're Not Vegetarians! They're just people who don't like most other types of meat!

[penguin]

Ha, thinking about it, it's kind of funny. She will eat chicken, but not on the bone. Will eat turkey too, but not pork, red meat, or seafood. So, not vegan, just, dare I say, picky?

Erm, did she not get the memo about vegetarians not eating chicken? Milk and eggs sure, if you swing that way, but not the animal of origin

I thought the point of vegetarians was NOT to kill an animal to eat that. Maybe she's picking her chicken off the poultry tree.

It seems that she's one of those people that find bones, blood, and skin "icky"

She's not a vegetarian, she's a bossy twit. I don't think there is a diet for that.

Tell her you're bull*hit intolerant in addition to Celiac.

[Matilda]

..

[GreySaber]

You can have tons of condomints...

Heinze Ketchup (not the organic kind it has gluten)

Mayonaisse (I'v never seen one with gluten)

On what basis do you say Heniz Organic has gluten? The only thing suspecious I see on the label is viniger.... ? Did you check with Heniz or some such?

As to Mayo, I find light mayo sometimes have 'suspecious' ingrediants. I can't say for sure it's gluten though.

[angel-jd1]

GreySaber, The Organic does have gluten according to the Heinz company. Here is a list that I recieved from them on 4-24.

Thank you for your interest in Heinz Products. We certainly understand how

difficult it can be to find foods that meet the requirements of a restricted

diet.

As you requested, the following is a listing of all of our products that do NOT

have gluten containing ingredients. If the product you asked about is not on

this list, then it does have gluten containing ingredients.

HEINZ PRODUCTS:

Heinz Ketchup

One Carb Ketchup

No Sodium Added Ketchup

Hot & Spicy Kick'rs

NOTE: Heinz ORGANIC Ketchup DOES have gluten containing ingredients

Lea & Perrins Products-- All Varieties

Jack Daniel's EZ Marinader -- Teriyaki Variety

Jack Daniel's EZ Marinader -- Garlic & Herb Variety

Distilled White Vinegar

Red Wine Vinegar

Apple Cider Vinegar

NOTE: Heinz Apple Cider FLAVORED Vinegar DOES have gluten containing

ingredients

AUNT MILLIE'S PASTA SAUCES

All Aunt Millie's Pasta Sauces

CLASSICO PASTA SAUCES:

All Classico Pasta Sauces

TGI FRIDAY'S SALSA:

Both Mild and Medium Salsa in 16-ounce jar

DELIMEX PRODUCTS:

UPC CODE: PRODUCT NAME:

1769600012 Taquitos, 36 ct. Delimex Chicken

1769600018 Tamales, 12 ct. Delimex Beef

1769600019 Tamales, 12 ct. Delimex Chicken & Cheese

1769600020 Taquitos, 24 ct. Smart & Final Beef

1769600024 Tamales, 6 ct. Delimex Beef

1769600028 Taquitos, 25 ct. Delimex Beef

1769600029 Taquitos, 25 ct. Delimex Chicken

1769600048 Taquitos, 36 ct. Delimex Beef

1769600095 Taquitos, 12 ct. Delimex Beef

1769600096 Taquitos, 12 ct. Delimex Chicken

1769600133 Taquitos, 22 ct. Schwan's Beef w/ Salsa

1769600155 Tamales, 15 ct. Costco Beef

1769600159 Tamales, 20 ct. Delimex Beef, Costco

1769600180 Taquitos, 60 ct. Delimex Beef

1769600186 Taquitos, 60 ct. Sam's Club Beef

1769600206 Tamales, 2 ct. Trader Joe's Beef

1769600207 Tamales, 2 ct. Trader Joe's Chicken & Cheese

1769600214 Taquitos, 25 ct. Delimex 3-Cheese

1769600222 Tamales, 6 ct. Schwan's Beef

1769600481 Taquitos, 36 ct. Delimex Beef (Mexico Import)

1769600500 Taquitos, Delimex Beef / Deli-Pak

1769600505 Taquitos, Mini, 40 ct. Beef, Snacker Tray w/ salsa

1769600554 Tamales, Cheese Deli Bulk Pack

1769600555 Tamales, Chicken Deli Bulk Pack

1769600556 Tamales, Beef Deli Bulk Pack

1769600565 Tamales, 20 ct.Beef, Sams Club

1769600684 Taquitos, 66 ct. Costco Beef

1769600685 Taquitos, 66 ct. Costco Chicken

1769601208 Tamales, 2 ct. Trader Joe's Cheese & Green Chiles

ORE-IDA PRODUCTS:

UPC CODE: PRODUCT NAME:

13120XXXXX- ALL VARIETIES of Ore-Ida® Tater Tots®

1312000080 Ore-Ida Golden Patties® (9 ct.)

1312000198 Ore-Ida® Snackin' Fries T (10.5 oz.)

1312000258 Ore-Ida® Golden Fries® (32 oz.)

1312000278 Ore-Ida® Golden Fries® (5 lb.)

1312000286 Ore-Ida® Golden Crinkles® (32 oz.)

1312000291 Ore-Ida® Golden Crinkles® (5 lb.)

1312000296 Ore-Ida® Pixie Crinkles (26 oz.)

1312000377 Ore-Ida® Cottage Fries (32 oz.)

1312000392 Ore-Ida® Southern Style Hash Browns (32 oz.)

1312001417 Ore-Ida Extra Crispy Fast Food Fries (26 oz.)

1312000469 Ore-Ida® Potatoes O'Brien (28 oz.)

1312000647 Ore-Ida® French Fries (8 lb.)

1312000654 Ore-Ida® Country Style Hashbrowns (6 lb.)

1312000801 Ore-Ida® Shoestrings® (5 lb)

1312000809 Ore-Ida® Crunch Time Classics Straight Cut (24 oz.)

1312000810 Ore-Ida® Crunch Time Classics Crinkle Cut (24 oz.)

1312000828 Ore-Ida® Shoestrings® (28 oz.)

1312000829 Ore-Ida® Shoestrings® (40 oz.)

1312000833 Ore-Ida® Country Style Hashbrowns (30 oz.)

1312000845 Ore-Ida® Deep Fries Crinkle Cuts (24 oz.)

1312000854 Ore-Ida® Hash Browns (5 lb.)

1312000862 Ore-Ida® Country Style Hashbrowns (6 lb.)

1312001012 Ore-Ida® Potato Wedges with Skins (24 oz.)

1312001190 Ore-Ida® Steak Fries (3.75 lb.)

1312008564 Ore-Ida® Golden Crinkles® (8 lb.)

1312008565 Ore-Ida® Golden Fries® (8 lb.)

1312008572 Ore-Ida® Golden Crinkles® (8 lb.)

Again, we appreciate you taking the time to contact us. If you need further

information, feel free to call us at this toll-free number (1-800-255-5750).

Our offices are open Monday through Friday from 8:30 AM until 6:00 PM, Eastern

Time.

Heinz Consumer Resource Center

Heinzconsumeraffairs@us.hjheinz.com

Hope it helps.

-Jessica

On what basis do you say Heniz Organic has gluten? The only thing suspecious I see on the label is viniger.... ? Did you check with Heniz or some such?

As to Mayo, I find light mayo sometimes have 'suspecious' ingrediants. I can't say for sure it's gluten though.

[blueeyedmanda]

My best friend, wow, I am lucky she stuck by my side. For 3 years I was always sick and in agony. We grew up together and we went to college in seperate directions both leaving home. We were within 2 hours of each other. Well, I stayed in the area I went to college in and she went to Temple and left Philly and moved to my area. it was right after she moved here that I was getting sick more often. We made so many plans and I always broke them since I was having D real bad and the stomach pains. I felt awful. Right after I cancelled on a trip to the beach I got a card in the mail from her which said get well soon, I miss my bud and all the crazy things we do. I was crying because it made me see she wasn't mad that I couldn't go out and do what we used. One day right after that I got my postitive celiac test and started to feel better because I changed my diet. I never have to cancel plans now unless something at work comes up.

Sorry for the rant, my point is try to explain to her that this is hard and takes some time to get used to but you would feel more comfortable if you had her support or at least her understanding. My bud and I used to eat at the chinese buffet religously before. HNow we do Outback and she understands and she really likes Outbacks food as well.

Hope this helps. I know this process is easier to go through when people understand, I thank God everyday that my finace is great.

[JenAnderson]

My mother is the one who refuses to recognize that I have celiac disease. When my parents come visit, she always wants to go out to eat because she knows that I cook food that Ican eat. When we go there to visit, if I don't bring food I can eat, I don't eat. She fries meats and she uses canola oil (which makes me sick) and the veggies have sauces on them (so my dad will eat them she says). My dad loves to come here because he knows that we eat "healthy" and he likes the fact that I take time to cook food that tastes good. My mother always says, "Why don't you eat the middle?" Last time she said that I told her to go eat the middle and tell me how well she likes it. That and "Can't you just have a little" are her favorite questions.

[GreySaber]

1769600012 Taquitos, 36 ct. Delimex Chicken ?

Taquitos are gluten free? Aren't those the little things that look like burritos in the freeze asle? I've been avoiding them.

But I wonder how the gluten gets in the organic kectup.

[eKatherine]

I think there are a variety of issues involved that cause people to discount necessary dietary restrictions.

Almost everybody nowadays takes on discretionary dietary restrictions, based not on medical diagnosis or even personal observations, but on some passing fad, dislikes, or philosophical considerations. I'm sure you know people who move from one set of dietary restrictions to another in this way. Many of these people will say that these are absolutely necessary restrictions, yet they are seen cheating on a regular basis. So what we have is so many people setting a bad example that nobody takes anybody's dietary restrictions seriously. And you can hardly expect somebody who's been a committed vegetarian, then on atkins, then on paleo, then on blood-type diet to give any credence to your requirements.

It's also true that many people take it as a personal offense that somebody has given up a favorite food of theirs. You did this to deny them the pleasure of feeding you their store-bought cookies or frozen pizza. Since, based on their own personal observations, wheat is not harmful to them, then it is not harmful at all, to anyone, and you not only are mistaken, but they need to save you from this insanity and bring you back into the mainstream. Having absolutely no understanding of statistics or how science works is necessary to feel this way, but as I work in schools, I know that this represents the scientific awareness level of most Americans.

[CMCM]

I don't know what to do? I got a celiac test done 2 years ago after a blood test showed I was wheat intolerant. Well, the test was negative and I continued to eat gluten and feel like crap. Just assumed I was meant to feel like crap. After about a year of reseaching, I decided to go full on gluten free and WOW. I didn't know it was normal to not have D everyday or not have a stomach ache.

Anyway, since then, pretty recently, actually, when I have eaten something with wheat/gluten, I have a classic allergic reaction right away (itchy, sneezing, watery eyes) then the next 2-3 days, I just don't feel good, have D and the stupid's. So, I went back to a specialist who confirmed what the test said, but thinks I developed Celiac since then. However, he does not want me to take the gluten challenge (was 1/2 hoping I could... miss so many things) because of the allergic reaction similar to someone with a peanut allergy. Anyway, he took a blood test and I am wating for that, but I swear my friend does not believe me!!

For example(s): When I get gluttoned and say I must have eaten something bad, she says I am a hypochondriac and that sometimes people just get upset stomachs.

She had a dr. tell her to not eat "white" carbs, so when I say I can't have something, she'll say "Well, I am not SUPPOSED to either, but I still do sometimes..."

I told her how upset I was at this last appointment, I need to see a dietitian and may be allergic to other things and she's like "Well, no big deal, you'll just have to eat healthy like I do" (She's a vegetarian). I told her thanks for trying to be nice, but my diet is NOTHING like hers just because she eats "healthy", that I can't have condiments, can't go out to eat and be 100% safe, I have to watch everything. Well, since then, she just ignores anything I say about it I mention finding something gluten free and she'll tell me where she's going after work. She'll tell me she got a great sandwich for lunch and I'll say how I wish I could have a sandwich (and I'm not all weepy about it) and then she'll change the subject again. I am so frustrated. She's supposed to be my best friend but won't talk to me about a HUGE part of my life. I seriously think she doesn't believe me! My husband wants me to ditch her (he took awhile to get on board with me, now he eats rice pasta) but she is a close friend. Anyone have advice?

Thanks for letting me vent, I feel a little better.

Don't ever underestimate how into denial people can be. Here's my own example: my mom was diagnosed with celiac 40 years ago. I have obviously had some form of it my whole life (I'm now 56), but since I didn't react the way my mom did (sever vomiting, lost huge amounts of weight, nearly died) my mom of course didn't think I could possibly have it. She figured I had some sort of milk intolerance problem. And I do, but just a few months ago I got the Enterolab tests done to fine it for sure about all this, and sure enough, I've got 2 genes and evidence of antibodies to gluten.

So you'd think of all people my mom would be completely understanding...but NO....she still wants to think I might not have it, or might not have it "bad" like she did. Whatever. She sort of accepts that I have it, but on the other hand she seems to be denying it....and for her as my mother, I think it's guilt that she passed it on to me.

As for friends and other family, people just can't get a handle on an illness unless they can SEE it very clearly. People are uncomfortable discussing a "disease", especially when they don't have any real knowledge about it. Perhaps if you invited them into the bathroom with you they'd get it

I'd suggest gathering some concise but very relevant information about celiac/gluten issues and give them to people in your life to read. Educate them a little bit. And tell them the hypochondriac comments are frankly insulting. Their comments come from total ignorance about this condition. Also....it might be worth your while to get the Enterolab tests so you have some "proof" to show people as well.

[JenAnderson]

My parents refuse to go get tested for it. I seem to believe that my grandfather had it because he would get sick a lot after eating certain things. He was really skinny with a pot belly, too.

[cultureslayer]

After trying to be nice, you need to draw the line. My mother b%$@#es about how bad she feels, but REFUSES to try going gluten free for even 2 weeks! I just don't listen anymore. Everytime she starts complaining, I ask if she's tried going gluten-free. She'll say something about how hard it is, I'll say that it's so worth it, and that ends it. I left rice noodles there weeks ago and she hasn't touched them, so no sympathy from me.

For the friend, she's NOT your best friend. More like a close enemy. Honestly, I haven't known a vegetarian that wasn't a little bit psychotic and delusional. If she pulls the "eat like me" crap one more time tell her FU and don't come back until she's realized that you have an allergy and not psychological problems like she does. Harsh? Yes! But you need to surround yourself with positive people to become a happier person, and she's just bringing you down. All of my friends have varying medical knowledge and all understand the difference between a food allergy and dietary choice. If she's too dense to get that I wouldn't enjoy spending any more time around her that it would take for her to refill my soda at Wendy's. Once I consider someone a friend they have to really F'up to change my mind, but I think this is one of the maybe half dozen things I won't negotiate. The others are simple stuff like grad school, sportbikes, bicycles, psycho puppies, alternative medicine, stuff that's such a part of who I am that you have to accept them as part of the package.