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BuddhaBar

How do you cope with not being able to eat whatever you want?

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I've always loved food and never had any "issues" with it. Never restricted, never thought about what's healthy or not, never been on a diet, never had a wish to lose weight. Loved going to restaurants etc. Food was a great joy in my life. Been overweight, but not obese for many years and just enjoyed food until now. It is a great sadness for me not to be able to eat whatever I want anymore. I miss regular bread, pizza, burgers, lasagna and various types of candy so much! Of course I've tried the gluten free options, but to be honest it doesn't taste as good. 
Recently I found a gluten free bread that is actually alright, but it's so fluffy and light it's like eating air. Tried numerous types of flour and tried to make pizza myself, but nothing works. Found out that I'm one of the super sensitive celiacs. I can't eat foods that contains glucose sirup, modified starch etc which means I have to be super strict.
I have become a lot healthier after I went gluten free and I guess that's a plus, but I didn't choose it myself. It is a great loss for me and from time to time pretty depressing. Feels so unfair that someone like me who has never in my entire life even reflected over food, it's content and what it does to the body gets a disease like this. There are tons of people (especially women) who got all kinds of issues with food and weight and restrict themselves although they look perfectly normal and are not even overweight. Sometimes when I'm sad I think it would be better if they got Celiac disease because it seems like they WANT to have issues with food.

How do you cope with this loss? 
 


If the doctor mention IBS, run. 

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You are grieving.  This is normal.   Over time, it becomes easier.  Feel free to vent anytime on this forum, as we have all been in your shoes!  

I am sure you are thankful that you do not have an immediate life-threatening illness, like cancer.  I am sure you are thankful that at least you can treat your illness with food instead of medicines.  

How to better cope?  

I try to plan friend and family activities that do not include food like hikes, bike rides, museum tours, dancing, movies, game nights, exercise classes, etc.  Picnics are fun!  

I meet with friends for coffee.  My true friends are used to me ordering a drink while they dine.  They understand and the initial awkwardness has long passed.  

I get involved in charity.  It is to forget about your woes when you are helping others.  It is important for your health  to stay connected to your community.  

Get a hobby.  I play in a band, ride my bike...speaking about band,  I need to practice!  Rehearsal is tomorrow night.  

Hang in there!  It does get better.  ?


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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I do sympathize with you, as we all do here.  It's hard because when we don't think about or HAVE to think about what goes into our mouths and then all of a sudden we do!  

For the last ten years, since diagnosis of celiac, I went through all of those emotions.  But I felt so much better, was healing, so that was motivation for me to keep on.  There's no easy answers to it...I like what one person says to get involved with other activities,  to not have get togethers so food centered.

This last year, I was also diagnosed with diabetes....talk about depression!  It's been so hard to also eliminate most carbs.  But it forced me to realize how food is only fuel for my body to help me get done what I need to.  Still haven't always accepted that yet, though.

Bottom line, this is a good forum to vent frustration, ask questions etc.  Wish you good luck on this journey!

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We all come from different places at the time of our diagnosis, thus we mourn differently. What you’re feeling is perfectly normal. I was very ill when diagnosed, with many of my systems not functioning properly (vision, muscles, GI) so I would have done ANYTHING to feel better. Once I recovered I became a distance runner and eventually became certified to teach yoga and spinning. I had so much energy and never felt so good prior to that. Going out at that time was a drink and maybe nachos. That was 25 years ago. 
 

Several years later my child was diagnosed. I mourned for him because of the burden he faced growing up with this. Around the same time, my sister was diagnosed. So my mom, sister and I jumped into converting our family recipes into gluten-free. It’s been an ongoing adventure for the past 20 years because two more of my sisters were diagnosed with NCGS, Hashimoto’s and several of our children are diagnosed. Our family dinners are all gluten-free. 
 

As Celiacs we are blessed now to have many food sources. That wasn’t the case even 19 years ago. For pizza crust, I use a stone and Chebe mix. Bake the crust first and then add your toppings. Schar brand has yummy treats for your sweet tooth. Cosco has a gluten-free bread that is similar to whole grain, moist and spongy. The best I’ve had, for sure. King Arthur has the best cake mixes. 
 

What foods are you craving??  I’m certain several of us can offer alternatives. Now I’m hungry thinking about food!

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I am on a much more restrictive diet than just "plain" gluten-free, because I have intolerances to most foods. Long story, but the only foods I can currently eat are fish and beef.

Ironically, I love food and cooking. Apparently, I am quite a good cook and prepare (what I'm told are) delicious gluten-free dishes for my partner. It's weird not to be able to taste them at least for salt, but just going through the process of finding a recipe, thinking of how to enhance it both in terms of taste and nutrition, preparing and cooking the ingredients is very satisfying in itself. And when the feedback is positive, I am doubly happy.

Most of the time, I don't crave the foods I cannot have. It's like my brain has developed a coping strategy and makes me look at these items as non-food. Other times, I have dizzy dreams of strawberries dipped in chocolate sauce or baked Camembert with walnuts and quince preserve ? However, these go away fairly quickly. I simply tell myself this is not possible at the moment and it is best if I don't think about it. I try to take joy in the thousand non-food-related positive things in my life. I occupy myself with something completely different, like cuddling with a good book, going for a walk in nature, dressing nicely and putting on jewellery and perfume even if only to go to the cinema.

Unlike you, I am lucky because I never crave gluten foods. On the contrary, shortly after finding out I have celiac disease, I used to have nightmares where I had forgotten I cannot have gluten and remembered only halfway through a sandwich; or where I was starving and there was nothing else to eat but gluten bread; or where people were shoving pastries at me without knowing they would harm me. These stopped after a while. But then, I have never been so keen on gluten foods. I did like cake and pasta, but only because of the fillings and sauces respectively - which would not be a problem if only I could tolerate the ingredients.

Perhaps what has helped me most is daily mindfulness meditation. Its biggest merit for me is that it helps me accept the things I cannot change, at least at that moment, and either move on or keep looking for solutions without breaking down.

Bottomline, the transition to gluten-free can be pretty difficult. It's definitely a tough life and lifestyle changer, not a simple dietary tweak, as many make it to be. However, there is so much more to life than food! Also, along the lines of what cycling lady was saying, not feeling sick is priceless!

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>.< I started a gluten free bakery after diagnosis and now I do catering, baking, and setting up and making/selling food at events.

I miss something...I make it gluten free, and keep playing with it til I get it, I also have to make it dairy free, corn free, and low carb due to my other issues (you can develop new food allergies, sensitivities, and other AI issues with this especially if you cheat or get glutened)

I developed my own bun recipe for hotdog and burger buns and even use them for catered events.
I have developed and modified tones of cookie and dessert recipes....heck I even once made some great cinnamon rolls flour free using pork rinds. I served them to friends and everyone loved them and had no idea.
I can give some tips...best Gluten Free pizza is a fat head type crust in my opinion, I make them with dairy free cheese, heck even did a double recipe and Chicago style in cast iron pan. But you can get the softest doughiest like crust following the original dairy version. I use a Califlour foods crust for a low carb thin crust pizza
I make my lasagna with Palmini noodles sheets..just boil to make more tender prior to assembly....btw doing it dairy free was super expensive.
I replaced my nachos/chips with pork rinds recently love the soft cloud like ones from 4505 and I order 5 cases at a time.

Eating out...last few years we lost the only safe places in my town for me to eat...I now have to drive a hour and a half to get to a gluten free pub ran by a celiac family up north of Fort Worth. Few other places I have yet to try but corn/dairy allergies make me hesitant to try them.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Thank God I can still eat tacos!

Ennis_TX: Those gluten free burger buns you invented sounds interesting. Every burger bun I've tried so far has been so dry I can barely swallow.

Cyclinglady, you're right. I am greiving. At first I was just excited to start my gluten free diet and get better and I was one of the lucky ones who got better pretty quickly. Some of my symptoms disappeared within a couple of weeks. But then it sunk in that this is for the rest of my life. I'm not going to heal, be alright and eat normally again. I can never eat normally again. Never... 
I have been trying new foods I probably wouldn't have tried, I'm eating twice the amount of fruit and vegetables, a lot more fish etc. There are benefits of this too and I'm trying to see the positive side of it, but watching people at work eating cake at a co-workers birthday while I get a fruit salad because the bakery didn't have anything gluten free is pretty sad. 

I have lost weight since I went gluten free and of course there are positive effects of that, but when people are praising me for losing weight and want to know "how I did it" when it's because I have an illness, I get mad. And they KNOW I have an illness. It's like a heroin addict losing weight because of the addiction and people are praising him/her for becoming skinnier and healthier. It's just weird. 

I do have hobbies, but I've been thinking about putting more time and effort into them to occupy my mind a bit more. Eventually I will get used to this. It's only been 7 months. Maybe I should go to the gym. With all this protein from fish and nuts in my system I should have no problems building some muscle mass. 


If the doctor mention IBS, run. 

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Will PM single serving version of recipe does require a certain dish to form it in and a scale to measure ingredients.

There are plenty of gluten free options for cakes etc. Heck there is even a few store bought ones safe for me like Good Dees, and Swerve mixes being grain free, dairy free, gluten free, and low carb, few other smaller brands out there. Still prefer my own, but the trick with parties...is to buy a mix or mix up your own from scratch, make and bring it. Then you can have cake to...heck make different and throw in redvelvet emulsion or extra goodies.

I got a homegym off Ebay cheap years ago, best investment ever considering gym memberships. Few other things and improvised workout routine and I am set.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Gym next week or the week after! Have to wait a while because of the flu. First a major glutening, then the flu... ?

I investigated a lot yesterday and downloaded tons of recipes. Found a few cold sauces both for fish and meat that sounds yummy. No flour in them. Also found a couple of really dark chocolate bars that doesn't contain glucose sirup or traces of gluten. I've never eaten dark chocolate before because I thought I wouldn't like it, but it's not that bad with a cup of coffee. And it's good for the magnesium.
I'm so thankful I'm not lactose intolerant and never will be. At least some of my genes are alright. 

How do you guys do it when you're travelling? I like to travel by train, but all train stations here only have 7 Elevens and similar shops. 99% of the food they've got here is bread based. Baguettes, pizza, hot dogs. 




 


If the doctor mention IBS, run. 

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The flu!  Oh no!  ?

Get plenty of rest.  It can take a week to recover.  Be patient, you will feel better soon. 

I bring food when I travel in case I can not find gluten-free food. But even those convenience stores carry cheese and yogurt.  I had that last summer, along with a bag of gluten-free potato chips and a banana.   Nutritious?  Not really, but better than starving.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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It's a good idea to check the internet for gluten-free options before traveling.  There may be restaurants in the areas you go to.  Also bringing fruit and nuts or boiled eggs is easy to do.  Many restaurants at least have a salad bar you can eat at.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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On 1/15/2020 at 3:00 PM, BuddhaBar said:

Gym next week or the week after! Have to wait a while because of the flu. First a major glutening, then the flu... ?

I investigated a lot yesterday and downloaded tons of recipes. Found a few cold sauces both for fish and meat that sounds yummy. No flour in them. Also found a couple of really dark chocolate bars that doesn't contain glucose sirup or traces of gluten. I've never eaten dark chocolate before because I thought I wouldn't like it, but it's not that bad with a cup of coffee. And it's good for the magnesium.
I'm so thankful I'm not lactose intolerant and never will be. At least some of my genes are alright. 

How do you guys do it when you're travelling? I like to travel by train, but all train stations here only have 7 Elevens and similar shops. 99% of the food they've got here is bread based. Baguettes, pizza, hot dogs. 




 

OH we have a few of those bars like Primal Chocolate here, pure dark with coconut flakes and a keto butter one I have yet to try. They also have some sugar free bars that a bit more processed, like Lilly's Baking bar (has soy and is sweetened with erythritol and stevia) and Lakanto (taste like a hershey but sweetened with erythritol and monk fruit extract)  Oddly I sometimes just grab a bar of Baker's Chocolate ...that pure dark stuff...kills the cravings lol.
There is a special company called Phi Chocolates I sometimes order truffles from on the holidays.

I generally find a meal bar I can tolerate, make a protein shake, or bring prepared foods on the Amtrack Trains when I used to travel annually. They had no food options so on the double deckers car I just went below on the coaches and ate stuff out of my bag, or if they allowed it sneak it into the observation car and eat while enjoying the view. I once got the person managing the snack booth in the bottom to heat up some baked goods I had made at home wrapped in paper towels in the microwave.
I think I started a post awhile back about food options at gas stations, I had found various things like Rythem Kale Chips, Epic Pork Rinds, Wonderful Pastachios, some brands of certified jerky, few Kind Bar options, cans of tuna, along with various Lay's Chips, and a few other things I personally could not eat but were labeled gluten free.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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My husband and I flew from the Michigan cold to the California sunshine yesterday. There were several delays making the trip 12 hours instead of 6. In the meantime, I ate shrimp cocktail and enjoyed a glass of wine. My hubby (gluten-free DF, too) had a seafood Cobb with vinegar and oil and a vodka tonic with Tito’s. The airport had plenty of Kind Bars and Clif Bars for us to choose the gluten-free options. Potato chips, hummus and veggies, yogurt (if you’re not DF) were  also available. I’ve also been able to eat freely in my seat on an Amtrak when traveling by train. 
 

While in Cali, we enjoy fresh seafood and authentic Mexican food while we soak in the sunshine. We find the lifestyle in Cali more conducive to fresh, Whole Foods and healthy living, which makes our restrictions easier. We also avoid sugar, and haven’t had difficulties with that. 
 

I can say, when first diagnosed in 1995, it was scary eating away from home. My job required me to travel and stay overnight, so I had no choice but to be informed and learn how to communicate politely in a manner that would be received well by busy servers in restaurants. “I have several dietary restrictions, and some questions regarding your menu. What’s in _____? How is ______ prepared? Would the chef mind preparing my order in a separate pan?”  I have never had an issue with this. 
 

Find your groove with your restrictions and then venture out. 

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You can eat out.  I try to steer newbies from eating out For a few months, just to help expedite healing.  The gluten free diet has a steep learning curve.  But I travel as does my husband.  You learn to be assertive (but nice) and ask the right questions from the manager or staff. Listen to your “gut”.  If you do not feel comfortable, do not eat there.  Read through the reviews made by celiacs in apps like “Find Me Gluten Free”. Research the area first to find good food choices.  So easy to do in this day and age.  

As a general rule, I take fewer risks than my husband.  It is because I am dealing with more than one autoimmune disorder.  If I get exposed to gluten it triggers those making my life pretty miserable.  But most celiacs can take a lot more risks. 

 

 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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The grief... Oh yeah, it is real. I mourn for the opportunities I knocked back food wise, for I was one of those women you spoke of! I avoided fattening foods, and I had no guidance on how to eat, and THEN I took up body building in 2010. Been clean eating since then. All those croissants I never ate, the pizzas I have never tried, the fish and chips I watched others eat on a Friday night... Sigh. You, at least, have known unbridled food joy. 

Still, we are both given a second chance at better health. I am FINALLY finding food joy in low carb high fat living. I dip into keto eating now and then, but it is a sheer relief to eat and not worry, be in pain and to actually relish all I eat. 

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I tell myself that I am saving my health by sticking to it, and yes, I do miss those days of eating whatever, whenever. Sometimes there are unseen symptoms of Celiac or gluten sensitivities, one being osteoporosis, and I sure don't want that. The other is ruining the lining of your stomach, which I've done, making it harder to eat gluten free things, like deep fried anything. Sometimes I've gone to restaurants with friends and not eaten anything because the servers have no clue and I just don't feel like being a test subject. As time goes one, it became easier, I'm used to it, and tell myself I caught it before it did real damage.

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It was hard for me at first because I didn't know what I could and couldn't. I was basically on a plain meat, veggie, fruit, rice sort of diet for a while. Eventually I was able to start learning to make some foods gluten free and found out some foods I used to eat were already gluten-free.  

Over time, I've learned to make more food gluten-free and also found new foods that are gluten-free that I didn't eat before. 


Abdominal Pain/GI symptoms started= ~01/02/2014

Gallbladder out= 02/20/14

tTG IgA Postive= 03/21/14

DX via Biopsy (Marsh 3b)= 04/21/14

Celiac Antibodies within Normal range(Gluten free diet)= 10/23/2014

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