Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How To Deal With Losing The Freedom To Eat Out?

HavaneseMom

Recommended Posts

HavaneseMom Explorer
HavaneseMom
Posted

Hi Everyone,

 

I have been gluten free for 5 months now. The first few months I accepted that gluten free was my new life and was so happy to finally know what had been making me sick all of this time.

 

For the last month or so, I have been really down about never being able to eat gluten again. It's no problem at all for me to think about eating gluten free at home, but when I think about all of my favorite restaurants and the foods I can never have at those places again, I get really down. I'm not typically someone that feels depressed or down, but this is really bothering me for some reason. Not only can I never eat my favorite foods at those restaurants, I don't think I will ever fully trust someone to cook a gluten free meal for me at a restaurant. Being a curious person, I often notice what's going on behind the scenes, and for the most part I can't imagine that my food won't get cross-contaminated. So, I also feel like I have loss the freedom to ever enjoy eating out, because I will always worry about getting glutened.

 

I am wondering if others have experienced these feelings and how you dealt with it? I kind of feel like I am going through a little mourning period over loosing this aspect of my life. I know my life will be better now, because my health will be better, but I associate so many good memories with these places...

 

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

I know what you mean! There is a new restaurant that just opened here in town. Everyone is raving about how good the food and service are, and how low the prices are. They don't have a gluten-free menu and from what folks have told me, I wouldn't dare to eat there.

 

I too can deal with eating gluten-free at home, but I miss not only the "treat", but the convenience of eating out. Yes, I can meet friends at restaurants if I eat first and just join them for coffee, but it's hard to watch them chowing down on french fries cooked in a non-dedicated fryer, burgers cooked on the same grill they toast buns on, or whatever else.

 

I just try not to think about it. And I HAVE had success at a couple of restaurants. I didn't get sick at Outback, although the meal was nothing to rave about, and there is a pizza joint about 50 miles from here that does gluten-free right. Maybe if you could find just one restaurant you could safely eat at it would lift your mood.

 

In the meantime, know that you're not alone. I think restaurants are the hardest part, both actually and emotionally, for most of us. ((((HUGS))))

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Thanks so much Bartful!

It's nice to know I am not alone in feeling this way.

I know I have to get over my mental road block and trust a restaurant at some point. I just am so afraid of getting glutened. I'm not 100% better yet, and I don't even know what it will feel like if I get glutened. Hopefully it won't happen, and if it does, it won't be too horrible!

bartfull Rising Star
bartfull
Posted

Is there an Outback or a PF Chang's in your area? Although it's no guarantee you won't get glutened, those are the two that seem to be most consistantly safe.

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Hi Bartful,

 

Yes - We have a PF Changs and Outback here! I will give them a try for sure.

 

I will try not to think about it too, like you mentioned.

I think it might be on my mind more right now because we have a vacation coming up. We always go to this little resort type area for a week every year. They don't have many chain restaurants there, and we always would plan which of our favorite restaurants we would eat at on our drive there. I really don't think I can trust any of them to make me gluten free food. We will have a full kitchen where we are staying and I will probably freeze some meals to bring too. It just won't be the same as before though, but I know this is just one of those things we have to deal with to feel better. I'm just surprised at how much it bothers me when I think about it, but I'm guessing this first year of making these adjustments will be the hardest.

bartfull Rising Star
bartfull
Posted

Go to findmeglutenfree.com and see if there are any restaurants in the area you plan on vacationing in that are safe. Now, just because a restaurant may be listed there doesn't mean it's safe, but if you read the reviews and people say they didn't get sick, it might be worth taking a chance. (I would wait until the last day of vacation though, just to be on the safe side. :lol: )

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

I think it might be on my mind more right now because we have a vacation coming up. We always go to this little resort type area for a week every year. They don't have many chain restaurants there, and we always would plan which of our favorite restaurants we would eat at on our drive there. I really don't think I can trust any of them to make me gluten free food. We will have a full kitchen where we are staying and I will probably freeze some meals to bring too. It just won't be the same as before though, but I know this is just one of those things we have to deal with to feel better. I'm just surprised at how much it bothers me when I think about it, but I'm guessing this first year of making these adjustments will be the hardest.

 

 

Sorry your'e having such a hard time. Try not to be hard on yourself about feeling this way. You are experiencing a loss, and just like any other kind of loss, it's painful. It is a big deal to adjust to no longer be able to have something right now that meant a lot to you. Going on vacation is usually associated with a feeling of freedom to let go and do what you want to do. Over time you will adjust and be content with your life just as it is. I think acceptance comes in waves. It really does get easier, it just takes time and it's a gradual process, but it does happen! Just know you are in good company and that we are all going through the same things, and you will feel better!!!!

 

I'm sure you will have a great time on your vacation and maybe you'll try new activities you wouldn't have before, or notice some great things you might have overlooked in the past. Have a great time!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Bartfull - Thank you for that info. I went that site and there were about 10 restaurants listed in that area. I will wait until the last day to try one like you suggested, just in case :)

 

FruitEnthusiast - Thanks for the kind words. It's nice to know that it will get easier. I will try my hardest not to focus on this and will enjoy my time away!

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Yep - day-to-day I'm fine with this whole thing.  But it's the not being able to eat out safely that gets me now and then.  Every once in a blue moon it's nice to be too busy and tired to cook and just stop by Pizza Hut on the way home - or KFC.  Or be at a mall for a few hours and get hungry and grab a bite somewhere.  There is a certified gluten free Italian restaurant near me which is awesome - but it is very expensive.  I have braved Outback once and did not get glutened, but the meal was fairly tasteless - and the whole time I was saying to myself, "please don't let me get sick... please don't let me get sick..."

 

The way I try to look at it is that realistically I only ate out about two or three times a month anyhow.  So I've really only lost two or three convenient meals a month.

 

But I'm with you... the loss of being able to easily eat out or order up a delivery when the mood strikes is something I really miss.

1desperateladysaved Proficient
1desperateladysaved
Posted

On the road, I heat my food in a Kooltron car stove lunchbox.  This plugs into the car outlet.  For me right now there doesn't seem to be any options.  I do struggle with this somewhat, so if you see a lone lady in a van somewhere having her dinner alone give a wave.  There is a cost, but having a clear mind and energy is what one needs on a trip.

CaliSparrow Collaborator
CaliSparrow
Posted

On the road, I heat my food in a Kooltron car stove lunchbox.  This plugs into the car outlet.  For me right now there doesn't seem to be any options.  I do struggle with this somewhat, so if you see a lone lady in a van somewhere having her dinner alone give a wave.  There is a cost, but having a clear mind and energy is what one needs on a trip.

Ditto! Putting new Koolatron to the test!

Yes. I know the feeling too. I did find a restaurant that I've eaten at about five times without being glutened! It's 20 miles away and super expensive, but it is nice to have one restaurant I can trust.

Congratulations on being gluten-free for five months! Am I to understand that you haven't yet had a glutening?!?

When I first started out, I kept trying restaurants and got glutened a lot. Someone posted that they didn't eat out the first year. I wished I had known that as taking risks definitely made life harder constantly getting sick WHILE sick. I was out of my head and kept taking other people's suggestions! Now, I have that one restaurant (plus a completely gluten-free restaurant about 45 miles away). I guess all of those experiments were good for something.

My husband is sensitive and he eats at one Pei Wei but not a different one up the road. I've eaten at the one he has successfully but am nervous about it and stopped going even though it's turned out okay. I miss eating with people. About to travel and will be taking my Koolatron and induction stove top for cooking in the hotel room. When I meet the group for dinner, I will not be eating at the restaurants. It should make for some exciting times.

Good luck on your quest and your continuing health!

livinthelife Apprentice
livinthelife
Posted

It truly is a grieving process and a huge HUGE lifestyle change. I still come across foods I can't eat and for lack of a better word, I "miss" them. It's a loss plain and simple. When I found out I couldn't have my guilty pleasure gas station nachos I can't explain how sad I felt. Silly maybe but I still miss 'em!

 

I've had both great luck and been glutened at both Outback and PF Changs. It won't keep me away but I do pause every single time out to eat. It's an odd type of stress that everyone here completely understands. Protein bars are my new best "out to eat" friend and I take my own crackers so I'll have something to munch on while everyone else has bread. And ya know, it's more for them than for me. I can sip my wine and nibble a cracker and nobody bats an eye. 

 

Hope it gets better and better for you!

dilettantesteph Collaborator
dilettantesteph
Posted

You can make some restaurant type meals at home.  Every once in awhile, buy some special items to cook with and make an event out of it.  You can invite special people etc.  If you can trust someone to cook for you at home, have them do a restaurant type event for you.  With all the money you are saving on restaurants, you should be able to get lots of special things to try at home.  Watch cooking shows and try new techniques.  My son got into searing our meat before roasting it and it was really good.

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Thanks so much for all of the advice and support! It's nice to know I am not alone in feeling this way.

I am going to start making special meals once in while and I'm sure it will help make up for not being able to eat out.

I didn't really eat out a whole lot before, but like others, that convenience aspect once in a while will be missed for sure.

It was kind of a funny coincidence, but after I wrote this, my husband decided to stop at Taco Bell for dinner. He doesn't eat out much anymore so he was pretty excited. When he got home and unpacked his food, they had completely messed up his order and he couldn't eat any of it because of the special diet he is on. So, it helped me realize that it's not such a big deal, since the food isn't always that great, and around here they seem to mess up orders a lot!

I am going to look in to the Koolatron car stove lunchbox for day trips too. I had no idea they made such a thing!

mbrookes Community Regular
mbrookes
Posted

I have found that being a "regular" at a restaurant makes a huge difference. My two favorite restaurants (one up-scale and one middle of the road) know me and have learned how to make my meals safe. Generous tipping doesn't hurt.

JNBunnie1 Community Regular
JNBunnie1
Posted

HMom, I've been gluten free for ten years now, and I STILL get sad sometimes at the

grocery store when I see the Texas Toast in the freezer section. I'm mostly ok, but every

so often I'll get pouty and my better half will kiss me and push me along lol. It's normal,

reasonable, and perfectly acceptable to grieve this kind of loss/change in your life. It

will get better, I promise!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,411
    • Most Online (within 30 mins)
      7,748
    Nicola mcculloch
    Newest Member
    Nicola mcculloch
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Pablohoyasaxa · Posted

      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By ElisaL · Posted

      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Ocd making gluten fears unmanageable. Need advice

      By Wends · Posted

      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...