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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Feeling Alone


Tessa

Recommended Posts

Tessa Newbie

Well, here is my first post on this forum.

I have been gluten free for three months. It was so easy at first, but now I am having the hardest time. I feel so frusterated and alone. No one seems to understand how I feel. All my friends get to eat whatever they want,whenever they want. I am so jealous.

Sometimes it feels like I have no control over my emotions.

Will this end up going away? How long will it last?

Tessa


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
GliadinX
Food for Life



Celiac.com Sponsor (A8-M):
Authentic Foods


HSM Newbie

Well, here is my first post on this forum.

I have been gluten free for three months. It was so easy at first, but now I am having the hardest time. I feel so frusterated and alone. No one seems to understand how I feel. All my friends get to eat whatever they want,whenever they want. I am so jealous.

Sometimes it feels like I have no control over my emotions.

Will this end up going away? How long will it last?

Tessa

I have been gluten free for over a year and after a few months I started to feel the same way. My friends are quite accommodating when it comes to eating together, but there are definitely times when the frustration kicks in.

Things will get easier over time, you will get used to it and even learn to embrace it.

Also, it helps that the awareness level among the general public is increasing everyday!!!

  • 2 weeks later...
starrytrekchic Apprentice

It may help to remember that although your friends don't have celiac, they have all sorts of other problems themselves, whether it's medical, family, relationship oriented--just about anything! It should help to think about how much better you feel off of gluten, how relieved you may be to be diagnosed, how good it is that you don't have to be on medication and that you have an illness that can be treated with diet, that you got knowledge about the disease before complications like cancer set in--basically, that of all the illnesses or life problems you could have, celiac may be a right pain, but it could be much, much worse!

That said, it's perfectly okay to feel frustrated and all too easy to feel isolated--it's frequently a socially-isolating condition. It's something you have to deal with on a day to day basis, and some people simply won't understand. I'd suggest finding people to surround yourself with that are supportive--ones that go out of their way to find places you can eat too, who won't ever question your illness or try to get you to eat something you shouldn't. The more supportive the people around you are, the easier it'll be for you to deal with it.

Be sure you're treating yourself whenever possible. Maybe cook something gluten free and invite your friends over? That way you can enjoy the food too--like cookies or pizza (I don't know what your specific diet restrictions are outside of gluten.) Or if you're going over to a friend's, be the one who bakes and brings something over. The easiest way to deal with them getting to eat whatever--is if you're the one with the great food they want to eat!

And be sure you know what you can and can't eat when you're out on the town. Plenty of candies, ice cream, etc., are gluten free. You may need to concentrate on what you can eat, rather than what you can't.

Outside of that--maybe a celiac support group near by? Do research to find out what restaurants you can and can't eat at ahead of time--that way you can always have a suggestion ready? Whether or not your frustration with it goes away--or at least becomes manageable--is going to depend on you and how you approach things. There's definitely a learning curve on how to deal with people who aren't celiac.

  • 2 weeks later...
Mike7 Newbie

I was undoubtedly embarrassed whenever I went out with my friends at a restaurant or around a table with food. The thing I had to realize was that it wasn't MY choice to not eat the food with gluten, it was my body's choice. My body rejects gluten like Dwight Howard blocks jump shots.

A classmate I knew would always say that he was allergic to wheat whenever we ate lunch so when I had to go gluten-free, I decided to do the same. Don't feel alone, because I felt the same way. Think of it as a good thing, going gluten-free can lead to eating organic and healthier foods. You can be a Celiac AND the leanest looking of anyone you know! Of course, that is if you want to be fit :) .

mushroom Proficient

A poster on this forum has in her signature block something like "Be kind to everyone, because everyone is fighting a big battle."

Most battles are not visible and are known only to the battler. Something along the line of "we all have our crosses to bear" :P Ours just happens to be the gluten and (fill in the other foods here) cross. Our job is to find a way to carry the cross easily, so it doesn't drag along behind us and weight us down. :)

Archived

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


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      130,345
    • Most Online (within 30 mins)
      7,748

    Nana3
    Newest Member
    Nana3
    Joined

  • Celiac.com Sponsor (A20):
    Daura Damm


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Food for Life



  • Upcoming Events

  • Posts

    • Ginger38
      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
    • Wheatwacked
      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
×
×
  • Create New...