• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Feeling Alone
0

Rate this topic

5 posts in this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!!!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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 :) .

Share this post


Link to post
Share on other sites

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. :)

Share this post


Link to post
Share on other sites
Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,156
    • Total Posts
      939,969
  • Member Statistics

    • Total Members
      66,141
    • Most Online
      3,093

    Newest Member
    Victoria Zoey
    Joined
  • Popular Now

  • Topics

  • Posts

    • So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway? Why is this disease so confusing for the medical world?  Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi.  It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it.  Makes me so infuriated I just laugh about how I already seem to know more. 
    • Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.   
    • cyclinglady, I think Joseph is hoping to exclude celiac disease.   I feel for him, as I also had a hard time accepting my daughter's celiac.      I had this gene test done hoping our GI doctor made a terrible mistake.   But now I have triple prove that my daughter really does have it! I agree with you and others, that if biopsy confirmed celiac disease, you do have celiac disease. (But on occasion, doctors can be wrong, right?) However, I have a distant relative (not related by blood) who thought she had celiac diease for 10 years (no biopsy done), lived a strict gluten free life style, but still suffered from health issues, ended up in the mayo clinic, and found out that she did not have celiac.    She did not have the celiac gene.
    • Our doctor ordered the Prometheus Celiac Plus test for us.   It is some sort of in depth celiac blood test.   This test report showed  which celiac gene my daughter has.   I think you can ask your GI for a celiac blood test with EMA.   When I asked for the EMA test, we got this Celiac plus results back.   I believe Prometheus is the name of the lab. Our insurance paid for this test.   If your insurance won't pay for it, I know there is a lab in Colorado that offer this test for a few hundred bucks.   You have to google for it.   I forgot their name.
    • Why?  Some 35% of the population carries the genes that could develop into celiac disease.  But only a few actually develop it.  It is used to exclude celiac disease and not to diagnose it.  There are some outlier genes too that have been discovered recently, so the gene test is not perfect.   My daughter has tested negative on the antibodies test.  She will have to get retested in the future. But we will not get the gene test.  It may impact her ability to get life insurance or maybe even health!  Just something to consider.  
  • Upcoming Events