Jump to content

  • 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

Feeling Afraid To Eat

learningtobreathe

Recommended Posts

learningtobreathe Newbie
learningtobreathe
Posted

I'm not sure if it is common for everyone, or if I am just being weird, but I have days where I don't want to eat anything because I get freaked out that there could be some kind of cross contamination or that I will react. This also comes on the heels of having a horrible episode of ingesting gluten via cross contamination. 

 

We use farmers for our produce, and I worry about them having eaten something with gluten and having it on their hands when picking our produce and then ingesting it. I worry about manufacturing practices. I worry about glutened peoples hands touching the gluten-free boxes and then me touching them and ingesting something from their hands on the box/bag/whatever. I just returned from my inlaws, who tried very hard to make their kitchen an okay place for me to eat. It was difficult to eat anything there: they don't have a dishwasher, they use the same towels to dry all the dishes and wipe their hands as opposed to separate ones- but were gracious in going to separate towels, the list goes on. My sweet husband washed and washed and washed some more and kept those dishes separate and the towels to dry them separate. He was such a blessing to have there to help. We cooked everything from scratch and worked so hard to avoid cross contamination. Still, I ended up feeling lousy a day after we returned home; it wasn't a full blown episode like last time, but a much smaller one. It was still very uncomfortable. (I really do want to acknowledge the absolutely kind efforts and thoughtful gestures his family extended while we were with them.)

 

Does this ever go away? Or will the discomfort and lack of trust in things being safe to eat go away? 

 

How do people handle being away from home? I do not eat processed food (or at least I avoid it at all costs, but I understand the option of it when traveling if that is needed. I absolutely refuse to let this rule my entire life, but right now it seems to. I'm okay with the adjustment part of it. I don't like it, but I am okay with it. I'm grateful for knowing what was going on within my body for so long! I feel like I have answers. Navigating the time after answers is where I am hoping to find some more support.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

So sorry you are going through this awful anxiety. While it doesn't happen to everyone it isn't unheard of to be so frightened especially if your symptoms were severe. You may also be going through a withdrawl that can highten those feelings of anxiety.

If you wash your produce before eating or cooking that will be enough to keep you safe from any gluten risk or for that matter any number of nasties. Fresh meats, chicken, eggs etc will be fine so no worries there. If there are packaged items that you would like to try you can ask here if anyone has info on any possibility of CC. You can also call the maker and ask them.

Try to not eat out if at all possible until you have healed a bit and your CC fears resolve.

I hope you are feeling better soon.

lea01 Rookie
lea01
Posted

Hello learningtobreathe,

 

I just want to let you know that you are not alone in this battle. I've only been gluten-free for a couple of months now. The thought of eating outside of my home is pretty frightening. I have found a couple of 100% gluten free places that I've enjoyed, but other than that, it's homecooking for me. I have come to the conclusion that this is just one of those things that only time can help. When visiting family or really close friends, I literally bring my own food and in some cases, my own dishes. Other than that, I unfortunately have to turn down invitations. When I think of the week of feeling awful I experience after being glutened, I would rather politely say I can't make it than take a chance. 

 

Hang in there! I believe we're going to make it out on top!!

weluvgators Explorer
weluvgators
Posted

We have found that it has gotten much easier to navigate this over time.  You meet more people that can relate and share what worked for them.  And all of the "new" things to learn after diagnosis become your normal routine.  Family can also get better over time and with some practice.  Time helps with the physical healing, and it gives you different perspectives when troubleshooting issues.

 

If we are going to try gluten free processed foods, we prefer to look for those with gluten-free certifications.  Which reminds me that I am still looking for a resource of what the different certifications mean.  And we do tend to travel with our own gluten-free kitchen basics.  It makes travel that much easier.  And don't discount that grocery stores are fabulous places to stop and refuel when travelling.  We have found a quick trip to the shops will usually get us plenty of food (think meats, nuts, fruits and veggies). 

bartfull Rising Star
bartfull
Posted

I always bring my own food and usually disposable dishes when traveling.

 

As far as the rest of it goes, of COURSE, wash your produce! You will not only be washing off any gluten, but pesticides and dirt and germs too.

 

And always always ALWAYS, wash your hands before putting anything in your mouth. If a gluteny hand has touched the package in the grocery store, transfer the contents of the package to a clean Tupperware type container, wash your hands, then eat, knowing you are safe.

 

As far as manufacturing practices, you can trust Kraft and Con-Agra and Nestles to disclose not only any gluten sources, but also same facility/same equipment. Those are large parent companies whose products are available in just about any type of food. There are others too but I lost the list when my old computer died. Unilever is one, I believe. I know Ben and Jerry's is really good about that too.

 

You'll get used to it and as you start to heal your anxiety will be reduced too. Hang in there! :)

learningtobreathe Newbie
learningtobreathe
Posted
  • Author

Thank you all for your responses. I appreciate the thoughts that you shared. Looks like I have some things to sort out with traveling and with my own healing. I'm looking forward to the day when the fear and anxiety of it are not in the forefront of my mind. 

  • 1 month later...
DandelionH Apprentice
DandelionH
Posted

I can really relate to this! But can safely say it's fading. Originally when I started I was terrified of even gluten-free processed foods 'just in case' someone working on the production line had eaten gluten and touched something. Or... I don't even remember the other scenarios that were in my head but I do remember how exhausting that need to control it all was. Exhausting and understandable. I'm still probably a bit irrational (my partner eats gluten free by choice except when out but also except nightly beers and I still fear kissing him after those (but I do and have never gotten sick)... but I've loosened up a lot through experiencing and remembering its not in peoples' interests to get us sick so they are as careful as we are a lot of the time.
Definitely prefer eating at 100% gluten-free restaurants but the 'risk' of enjoying meals elsewhere with friends has been worth it and unproblematic in all cases thus far :) and when it's not I'll re-evaluate perhaps, instead of worrying about something that hasn't happened (which I do a lot :) ! ).
I hope you're feeling ever better !

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

Celiac.com Sponsor (A8-M):


Jays911 Contributor
Jays911
Posted

It gets better. You just have to find your own protocols and follow them. I double check everything. But I just got back from a trip to Denver and Boulder. gluten-free menus and food all over. The farmers market in Boulder had six gluten-free bakeries. Life is getting easier. 

julissa Explorer
julissa
Posted

I feel for you as well. I basically live my life only eating food I made myself, unless it's a 100% gluten-free restaurant. this is going on 3 yrs for me. it doesn't get easy per se, but definitely easier to incorporate into my life and social situations. bring your own food, etc. totally doable. good luck! 

icelandgirl Proficient
icelandgirl
Posted

It gets better. You just have to find your own protocols and follow them. I double check everything. But I just got back from a trip to Denver and Boulder. gluten-free menus and food all over. The farmers market in Boulder had six gluten-free bakeries. Life is getting easier. 

Hey Jays...would you share where you ate safely in Denver and Boulder?  I don't live too far from there and if we go I'd love to have a safe place to eat.  Thanks! 

Jays911 Contributor
Jays911
Posted

Hey Jays...would you share where you ate safely in Denver and Boulder?  I don't live too far from there and if we go I'd love to have a safe place to eat.  Thanks! 

There is a new national chain, started by Dr. Andrew Weil, that has a location at the Cherry Creek Mall.  It is called TrueFoods.  Wonderful gluten-free and vegan options.  Also had gluten-free pizza and salad at Pizzeria Locale (I think), which is in both Denver and Boulder.  Salt and Riff's in Boulder were great and good to work with.  And the best, in Denver, was Beast + Bottle.  Just make sure you let them know when you order.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      14

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
    2. Scott Adams
      - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      12

      gluten free cookie recipes

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    3. Florence Lillian
      - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) . I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir...
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      14

      Severe severe mouth pain

      @cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!
    5. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      14

      Severe severe mouth pain

      @trents Thank you so much, I will try that
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,909
    • Most Online (within 30 mins)
      7,748
    probinson3870
    Newest Member
    probinson3870
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      Fermented foods, Kefir, Kombucha?

      By Florence Lillian · Posted

      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @cristiana Hi, thank you so much, I will look into those books for sure! And get bloodwork at my next appointment. I have never been told I have TMJ, but I have seen information on it and the nerve issue while googling this devil plague in my mouth. Thank you so much for the advice!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.