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Guest LJannise

Some Urgent Questions.. Please Help

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Guest LJannise

Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this?? I've visited before telling everyone my dilemma to which the reponses were a good & solid agreement that I would indeed be a celiac, etc. (not that anyone posed as a doctor & that was completely understood) However, I have searched many places & dont see an area of the 'nitty-gritty' of this issue.

I dont get diarhea, I get the opposite. I am not skinny, I'm the opposite.

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

Is anyone out there???

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You have to do what is right for you. Not what anyone else wants you to do.

If food is making you ill, then you have to stop eating it regardless of how others egg you on to eat what they are eating.

I went through this too, but now my family is supportive. They don't want to see me sick again.

As far as going vegan, it is not always an option for women. We lose too much iron on a monthly basis and some of us can not catch up without meat ..

And it will limit your food choices more than you have to at this point. Have you tried going gluten-free yet ?

Have you gotten any of the other common allergens out of your diet ? Soy, dairy, corn and eggs.

Try eating a bland allergen free diet for awhile to see if you can get your digestion under control.

Also, probiotics are great for your digestive tract. I drink kefir even though I can not tolerate any other dairy ...

Hope this helps ... marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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I really hear what you're saying about food and drink being a social bonder in our culture. I do not drink, and I find it often is a barrier for my inclusion in social events. People try to include me, but after a while and so many drinks, it's hard to relate with folks, and I represent to them a healthier way that on some levels, they likely feel guilty for not pursuing, especially if they think they have drinking problems.

I experience this with food as well, to a lesser degree. In my house, we've gone gluten free even though my dh is not celiac. Except for pizza and beer, we have no gluten in the house whatsoever. This helped, because then he was eating gluten-free as well -- there was no innate separation based on WHAT we were eating. Further, I was a vegetarian/vegan (veggie plus fish -- but no dairy...there's no word for that) for some years before that. In that sense, I was used to be separate...but the town in which I live is chock full of veggies (college town) and lots of our friends are veggies, and my dh's family is veggie. So the veggie bit was easy. About six months ago, I stopped being veggie. This was because when I found out I had celiac, the limitations were such that I no longer could find enough to eat. I tried the Paleolithic diet which was great (in the summer) and I'll stick to it to a large degree nine months out of the year (I find I have to eat some rice or something in the winter, or potato, or I just feel cold and undernourished).

If you are vegan for political or ethical reasons, then you need to respect your values. However, if your values are getting in the way of your health, you have to ask yourself why you don't value your health more. If it is not the vegan/veggie lifestyle that is causing your illness (physical or social) and you're ethically bound to it, you should stick to it.

Just one last thing. I've been thinking a lot lately about how we as humans often consider ourselves outside of nature, when in fact, we are part of nature just like every other animal. Vegetarianism was not an option for early human beings -- this is something made possible by settling down and farming, which is part of our evolution I understand. What I'm saying is, the last time I bbq'd some trout for some friends, and I slapped the trout bodies onto the BBQ I thought, 'I could've caught these for my sustinence - that is perfectly ethical to do - it is perfectly ethical for ME (perhaps not you, I understand that) to cause the death of another living creature in order to live myself. That is the biological imperative. (It is NOT ethical for ME to eat poorly treated animals, or animals fed things they don't digest well, or animals kept in confinement, etc.)

If you're vegan for health reasons, you might consider researching the difficulty of digesting grains and beans, the staples of a vegan diet.

I hope you find some way to feel comfortable amongst others with your eating issues -- it is extremely difficult, I know. Good luck to you, and sorry for rambling so much.

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I'm sure most of us struggle with eating out at other places. I know I do. It is really hard sometimes. People sometimes seem hurt or offended if you don't eat something they touched or made. I don't eat anywhere now unless my mom has made the food or the restaurant is really strict on making gluten-free foods. I usually take food with me went I need to eat out and I find that if I don't tell people why I'm not eating, they will start assuming incorrect things about me.

Being a vegetarian or a vegan may be tough. I am dairy free because of an allergy and avoiding dairy can be just as hard as avoiding gluten by times. If you do decide to become a vegetarian or vegan I would consider keeping fish and/or eggs in your diet or talking to a doctor or a nutritionist.


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this?? I've visited before telling everyone my dilemma to which the reponses were a good & solid agreement that I would indeed be a celiac, etc. (not that anyone posed as a doctor & that was completely understood) However, I have searched many places & dont see an area of the 'nitty-gritty' of this issue.

I dont get diarhea, I get the opposite. I am not skinny, I'm the opposite.

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

Is anyone out there???

Difficult issues, I agree. I've been wrestling with the same and sorry, had to laugh, maybe because it's January here in Maine and there's just nothing we can do about it. I think that people who want you to be "normal" are not trying to abuse you, they just want you to be well, whatever that means for them, although it's not what means the same for us. It's taken about a year and much research to get back to my confidence in eating vegetarian and multi-vitamins can cure a whole host of sins. I'm allergic to soy, so will probably never be able to be a complete vegan, but there are a lot of cookbooks out there that provide recipes for pretzels and pasta, etc. that are gluten-free.

Hang in there!

I'm doing some pierogies today. :)

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Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this??

I can't speak for everyone, but my biggest cravings turned out to be for the foods to which I'm intolerant (breads, cookies, and cheese to name a few), and my appetite for them (and pretty much everything else) was insatiable. Frankly, I could have never imagined life without these things, let alone having the willpower to resist them. My transition started slowly with a few months of eating gluten light, but it wasn't until fully committing to being gluten free (along with casein, soy, and egg which I had discovered were also problems for me) that things really started to change. One of the biggest and most suprising changes for me was that not only did the cravings stop, but my lifelong insatiable hunger has finally subsided.

I am not skinny, I'm the opposite

Me too...that's part of the reason I'd never seriously considered Celiac to be the problem. But in the nearly 5 months since going completely gluten free, I've lost nearly 60 pounds without even trying! :blink:

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude.

My personal experience is that the more comfortable and confident I become with my own diet, the easier it is for me to "assimilate" in social situations. It definitely takes a bit more planning, but I avoid getting overwhelmed by dealing with each event as it comes. The most important thing for me has been shifting my own focus from the importance of the food to the importance of the people.

BTW, cooking shows and even traditional cookbooks can still be great resources as many recipes are naturally gluten free or can be easily modified. Just the other day I was really excited to find recipes for mayo-free tuna salad and mayo-free potato salad from Rachael Ray that will work gluten free. Haven't tried them yet, but can't wait! :D

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian.

I was vegetarian many years ago, but found that ultimately it did not work for my body. There are others here who are/were vegan/vegetarian that may be able to offer more input.

Marcia is right...it's about doing what's best for you and not anyone else. It will take some time and effort to get there, but you can do this!!!

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Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this??

I don't know how much this is biological and how much this is psychological - either way, I've no doubt it's real. You get over it the same way you get over any craving - finding a way that works for you, and being patient. It may be strict avoidance. It may be replacing these items with gluten free ones you can have (Tinkyada or Glutino/Ener-G, in this case, for example). It may be something else. Recognize it's there, and it's a challenge that you'll have to face, and you're on your way to it. It'll take longer for some, and it's important not to forget about the psychological element (we're *used* to eating that stuff, after all, and everyone around us still will).

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.
You don't have to get over these things, but you may have to change your mental approach to them. If you can't bear the idea of eating differently from others, then there's the option of having everyone eat gluten free things. (This really is not a huge imposition. I usually cook the holiday meals for my family, and host dinner parties all the time for friends, and everything is always gluten and dairy free, and everyone loves the food.) But to a certain degree, this condition forces the acceptance of differences - it's alright to be different, and now that you are, there's no time like the present to at least accept the fact that it's ok to be different.

Besides the issue of same/different food, there are times when you just can't find anything safe to eat, and then you can choose to not eat. It's not being antisocial. This is one of the cases - along with a few other conditons (possibly diabetes, and food allergies) - where you learn to separate eating from socializing, mentally. You *can* partake in the socializing at a meal without partaking in the eating, once you have accepted the difference thing, and are prepared to deal with a question here and there (or are with people who already know the answers and don't ask the questions any more).

Part of this is learned experience - you learn how to speak up for yourself in selecting food situations you can partake in, you learn how to choose food you can in difficult situations, you learn how to answer the well meaning questions and ignore the rude ones, you learn how to separate the food and the socialzing, and you learn how to navigate the whole situation.

It takes time, takes a lot of effort, and it can be draining. I think of concentric rings, where it's easy at the center (with my husband), expanding out to areas where it's not difficult but a little more effort (with some close friends and family), to a little more effort (other close friends), to some effort in food deciding (the rest of my friends), to more effort in food deciding/bringing food and question answering (aquaintances), to a lot of effort in bringing foods/not eating and question answering and odd looks (large events). The ones at the center I do more often, the ones at the outside I do much less frequently.

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

*Never* do what someone else wants you do to at your expense. You know what you need to do for your health, and being a people pleaser won't make *you* happy and healthy.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

Vegan celiac can be tough, when you're eliminating a number of basics, but you're not the only one. You're going to have to do some cooking, with so many eliminations and the reliance of so many vegan products on wheat gluten. Check out cookbooks from the library, flip through vegan cookbooks - and non-vegan cookbooks - at the bookstore. Get ideas from anywhere. Explore new foods you may or may not eat right now (millet, buckwheat, quinoa, and amaranth are good grain sources of protein - more complete than wheat as well). Check out a raw foods cookbook, which has some lovely vegan options, if you haven't already. And I think someone here may have a couple links for recipes - in the meantime, Google may help you find "gluten free vegan recipes". :)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I agree with Tarnalberry. I have disassociated socializing with food. I make the necessary arrangements so I have something to eat. If it's a pizza party I will bring my own gluten free pizza.

I have come across my share of people who are insistent that I gluten containing food. If after two polite "No, thank you's" and a brief explanation that it will make me ill, they are still insistent :angry: I inform them that "I really don't want to go to the hospital" Yep, a white lie but it works.


Phyllis

Gluten Free - 30 years

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I dont get diarhea, I get the opposite. I am not skinny, I'm the opposite.

I'm searching for ways to be a VEGAN celiac. Striving for Vegan, but sometimes the most I can manage is Vegetarian. These days, my blnder is the best, but there is only so much vegetable or fruit smoothies can do.

LJannise,

I'm like you on both counts! Since becoming gluten-free, I've lost @30 lbs!

With some cravings, it has been said that sometimes we crave the things that we are in fact most allergic to...

I agree with the other posters who said that they have separated socialization from food; you have to for your own sanity. Even so, eating something that is different from everyone else doesn't bother me anymore; I remember very clearly how I used to feel before and I love how I'm feeling now, so I eat for me and my body and am not tempted to do otherwise for any reason at all! But arriving at this point is a process, and we all reach there at our own speed...

I've been a vegetarian for @ 10 years now, and I find that it's been great for me - but you have to find what works best for your own body! I eat a little fish and chicken occasionally; I used to eat eggs but I'm now allergic to them! No diary - always been allergic to that. I eat a good portion of raw food, and one day a week am totally raw, and have found that I actually eat a greater variety of foods after going gluten-free (for a little more than a year ago) than I did before! But I've always been into nutrition and have had several sessions with a nutritionist so I know what to watch out for and how to keep my body in balance...

I have been experimenting with new fruits and veggies, I now do stir-fries with lots of Indian and Thai spices (yummy!), and get a lot of ideas form cookbooks and cooking shows which I then extract from and tailor to my own needs ( "Take Home Chef" from TLC has some good ones!). Of course my Vitamix is my friend! :lol:

I have been interested in going vegan as well for a while mostly because of my own reactions...fish is the only 'flesh' that I don't have any reactions to... and I'm allergic to soy so all those fake meats are out now but, know what? I really don't miss them, to be honest!

I encourage you to hang tough, eat to please yourself and learm what works for your body. And oh... have fun looking at new recipes and experimenting! All the best to you!


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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Is it true that celiacs crave things? (pasta, pretzels, etc?) If so, how do you get over this?? I've visited before telling everyone my dilemma to which the reponses were a good & solid agreement that I would indeed be a celiac, etc. (not that anyone posed as a doctor & that was completely understood) However, I have searched many places & dont see an area of the 'nitty-gritty' of this issue.

-I used to crave gluten-foods before I went gluten-free. Now that I'm not eating gluten anymore and my body's not addicted, I don't have these cravings.

How do you get over the meals so many ppl have together? Cooking shows? We're all surrounded by ppl, families, media where it's all geared towards an "eat, be together & happy" attitude. It's not warmth or togetherness unless there's a big slab of gluten on a plate & everyone eats until stuffed & that's that! The celiac always has to be prepared with their little baggie of food so they can enjoy eating with others. Or even though they are 'sitting' with others, their food is exactly the opposite of what everyone else is having, hence the form of seperation anyways? It's always easier to just not go to these things altogether, posing antisocial.

-I now view social meals as "be together & happy enjoying others' company" rather than "eat, be together & happy". I never used to go to dinner parties for the food. If it was only the food I wanted, I would have stayed home and eaten. I clearly go to dinner parties because there are people there. I always bring my own food. I almost always bring food to share. I don't feel separated because I don't define the event as being about the food, it's about the people and as long as the people are there it doesn't matter what you're eating. [i will note that my friends are fabulous at being inclusive so no one hassles me about having to eat different.]

If it's not one thing, it's another. I'm so tired of doing what everyone else wants me to do & ending up in a week long pain or my skin boiling with rashes to make them happy. They sure arent wreaking havoc on their bodies from it.

-It is time to put your foot down and do what you know is best for your body. Other people might not understand, but it's you who has to live your life and in your body so ultimately you have to do the best for yourself.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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i crave gluten things too. lately more than ever...don't know why. but i feel like i eat things now that i never ate much of before (i was never much of a chocolate/ice cream person) and now i eat those...usually without even tasting it cause i'm scarfing it down. i think it's like i'm craving these foods i can't have so i just stuff myself with other "bad" things that i can have. i really crave papa john's pizza and a cinnabon or a panera bagel...things you just can't replace...

sorry this isn't much help, but i thought i'd let you know you weren't alone :unsure: i'm still trying to figure it out. if i do, i'll let you know :) i'm currently reading "intuitive eating" with makes some good points, maybe you might find it helpful. good luck--

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