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

Frustrated With celiac disease!


l-lyn01

Recommended Posts

l-lyn01 Rookie

I have been diagnosed with celiac disease for almost two years now, I share the same frustration that many ppl with celiac disease have. Eating out, parties, conflicts with family meals and such; but it seems to get become almost boring trying to explain myself every time I go eat something. Yes, it is gluten-free, no I did not eat any chips and so on... I understand some ppl that I am close to have concerns, but it becomes very tiring. I was just wondering has anyone ever felt the need to just giving up? I am to the point where I do not care anymore. It is my body, my health, not theirs... Then again that almost sounds mean... Right?


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



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice
I have been diagnosed with celiac disease for almost two years now, I share the same frustration that many ppl with celiac disease have. Eating out, parties, conflicts with family meals and such; but it seems to get become almost boring trying to explain myself every time I go eat something. Yes, it is gluten-free, no I did not eat any chips and so on... I understand some ppl that I am close to have concerns, but it becomes very tiring. I was just wondering has anyone ever felt the need to just giving up? I am to the point where I do not care anymore. It is my body, my health, not theirs... Then again that almost sounds mean... Right?

oh yeah. Been there many times - so tired of watching, worrying, cross-contaminated... I was at a seriously low point when I found this forum. It's been helpful, especially knowing that there are so many others in the same situation. Keep at it - you are not alone!

Annette

IronedOut Apprentice

After I was diagnosed, my MIL worried herself sick about CC every time we came over. Finally, we agreed that I would just bring my own stuff and have a clean cabinet in her pantry. Now when we are there, she constantly asks me if I got what I'm eating out of the 'special place'. Well, duh! I know she means well but it's getting old.

bluejeangirl Contributor
I have been diagnosed with celiac disease for almost two years now, I share the same frustration that many ppl with celiac disease have. Eating out, parties, conflicts with family meals and such; but it seems to get become almost boring trying to explain myself every time I go eat something. Yes, it is gluten-free, no I did not eat any chips and so on... I understand some ppl that I am close to have concerns, but it becomes very tiring. I was just wondering has anyone ever felt the need to just giving up? I am to the point where I do not care anymore. It is my body, my health, not theirs... Then again that almost sounds mean... Right?

I can only give you perspective as the parent. We just want to connect with our teenagers and forget we're asking the same questions all the time. I can see how that can be annoying reading your post. Maybe you have to explain that to them. When I would ask my son to many questions about something he would just look at me and take a breath and not give me the answer. I knew to back off. Sounds like your not wanting to give up because of the diet but because of all the explaining.....its not worth it, I would just let people know your sick of the scrutininy and would like a better subject.

gfmelissa Apprentice

I feel the same way too sometimes. I won't give the diet up but it is frustrating dealing with people. I find it frustrating that its one extreme to another, someone who has to know every detail of what you ate and whats wrong with you to the person who doesn't care at all and just wants you to eat their food they swear is gluten free with out understanding even what gluten is, and they don't want you to ask any questions about the ingrediants. I am in my mid twenties and my mother does both. Sometimes she is all over what I have eaten, and sometimes, she messes up when she is cooking and makes me feel guilty that i should eat it anyway to make her feel better. And i think for me, whats more frustrating is being diagnosed almost 3 years ago sticking to the diet really well and feeling great for about a year, then being diagnosed with another autoimmune disease. It feels like what was the point of sticking to the disease if you get sick with something completely different?

However, I guess the answer is to just focus on healing and find other avenues of life more satisfying than food when possible. i recommend yoga. : )

M

tarnalberry Community Regular

When you get really tired of explaining, don't. (I can see having to explain to your parents, but that's about it.) Other than that, it's a "I know how to handle the diet, but it gets tiring having to be reminded of it by everyone all the time, so just let me do what I need to do" thing.

Lollie Enthusiast

My husband is on top of my diet all the time. If I go to eat something he doesn't know what it is, he'll ask if its gluten-free. Sometimes I want to just throw the food on him, but deep inside I know he does it because he cares for me and has seen how sick I can get. I bet those in your life are trying to be helpful and only care for your health. Don't give up, not on the diet and not on the people who care for you!

Good luck!

Lollie


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.