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

Sick Of Being So Different

GFMochi

By GFMochi
in Coping with Celiac Disease

Recommended Posts

Loey Rising Star
Loey
Posted

Well, there are issues.. I don't think it was malicious.. they just don't get it on so many levels. I am still trying, after three years, to cope with the fact that I have to guard my own little safe corner.. walked in to the kitchen last night as I was cooking up some burgers and picked up the spatula without checking or thinking.. had been used for their dinner and was dangerously cross contaminated. Seems like the wife got upset with me. I seem to be the one causing all the inconvenience. No wonder I still have damage consistent with celiac after two strict years of rigorously gluten free. Could very well be why I am out here during dinner while they are all having a good time around the dinner table. Oh well. Had to leave because the pasta boiling was making me feel nauseated.

I wish your family knew how much you would like to be able to eat whatever you wanted and not be worried about CC. They don't realize how lucky they are to not have to deal with the food issues that we do. Went to a funeral recently and we stayed overnight at my husband's cousin's house. He didn't quite get the restrictions but left my food alone and let me heat it myself. At the luncheon after the funeral they had a special salad for me (it was a buffet but I was prepared with more little containers).

This time of year is particularly hard on all of us. We're lucky to have our online community. We just moved to a new state and one of my husband's friends at work has IBS (he referred me to a new GI because I am NOT happy with my current one) so when I cook us all dinner next weekend (they're coming over and I plan on picking his brain) it will be gluten and acid free.

Sending healing hugs with holiday wishes,

Loey

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

Celiac.com Sponsor (A8-M):


Gutsy Girl Rookie
Gutsy Girl
Posted

Who else is sick of having to deal w celiacs? I hate having to be so careful w my food, having to make my own food to bring to parties. I hate it!! No one else in my family has this, they don't understand how bad it sucks to be so different. They keep telling me that I'm over reacting, it's not that bad to have this allergy, but they don't have it, it is not going to personally affect them! If they are hungry, they can grab anything.

I am so frustrated. I have 3 gatherings to go to next week, all surrounding food. I don't know how I am going to handle it. I was just curious how everyone else deals with it.

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Gutsy Girl Rookie
Gutsy Girl
Posted

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

Oh, now that's no fun! Sorry!

kareng Grand Master
kareng
Posted

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Glad you have a sense of humor about it! When my boys were little, your chair would have been the hit of the party for them! The oldest is about to go to college for mechanical engineering and the younger loves to build things, too. Because people have always been nice to show him things like thier chairs and prosthetics, he has an interest in designing and building adaptive devices.

Somwtimes, I'm eating my food and its sooo much better than the rubber chicken everyone else is eating. And they can see that! :)

Loey Rising Star
Loey
Posted

I'm nodding with understanding, yet chuckling too. Whenever I go ANYWHERE and need to eat, it looks like the carnival is coming to town. Wheelchair and/or crutches, cooler, water jug, utensils and plate for me myself and I, bag of pain medicines and TENS unit/pain relief devices, etc.

Talk about being "different"! Wheelchairs, crutches, and things of that nature sure add another whole dimension to that category! I feel for ya, but be grateful for what you have. *Smile, wink.*

This week I was at a party too, and my "special diet" became the topic of conversation among the people there.....AGAIN. :/ Oh well. *Shrug.* Next up....Christmas dinner with family.

Just remember we're all here for you and you're never alone. Feel free to PM me anytime to vent. You've got a lot on your plate (no pun intended). If your biological family doesn't get it your adopted forum one does!!!!

Healing hugs,

Loey

Skylark Collaborator
Skylark
Posted

I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.

I went through some personality changes as I recovered and some of my friendships shifted around. I also had a broken engagement when the fellow realized how much I had changed. It turned out to be for the best. I started new hobbies and made some new friends that way. I also throw my own parties, so that I know I have something safe to eat.

To rebuild, get out of the house. Take up a sport, go to dance classes, take a painting class, volunteer for charity, whatever sounds appealing and involves a few other people you can meet.

BethM55 Enthusiast
BethM55
Posted

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

I have no idea what to say, other than {{{hugs}}} and a belated happy birthday! I hope you treated yourself to a gluten free cake. Shame on your family for being so insensitive.

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

Celiac.com Sponsor (A8-M):


Loey Rising Star
Loey
Posted

I went through some personality changes as I recovered and some of my friendships shifted around. I also had a broken engagement when the fellow realized how much I had changed. It turned out to be for the best. I started new hobbies and made some new friends that way. I also throw my own parties, so that I know I have something safe to eat.

To rebuild, get out of the house. Take up a sport, go to dance classes, take a painting class, volunteer for charity, whatever sounds appealing and involves a few other people you can meet.

Coincidently I have done what you suggested and started taking painting classes. I also tutor a dyslexic child for free one day a week. I'm too sick to work but for at least two days a week I feel normal.

Wishing everyone a HEALTHY and happy gluten-free holiday,

Loey biggrin.gifbiggrin.gif

  • 3 months later...
kellynolan82 Explorer
kellynolan82
Posted

My eyes just cannot avoid the sight of wheaten bread and cakes. They gloom at me, they stare at me, they watch me very closely, they can't wait for me to give in and have their opportunity to attack my insides. That decadent looking piece of cake; should I eat it or should I not? If I do... It will eat ME! Seriously, I can tell when foods are DEFINITELY NOT gluten free and there is always a "HATE" expression engrained on the texture of wheaten cakes and breads. It's a temptation we all need to overcome. And a self-absorption I need to avoid.

Socially, I just try not to bring up the subject if it doesn't come up. I tend to not volunteer unless I'm asked. Too many variables here and there. :rolleyes:

That being said, don't get me wrong, I'm always more than happy to talk about it ANY TIME with ANY ONE if it comes up. :D

etta694 Explorer
etta694
Posted

I wanna say it's getting easier, but it's not. I was diagnosed with celiacs in january, and in march, found out I was allergic to dairy, eggs, all citrus, all poultry, celery, strawberries and hazelnuts. This year I went to one party. I used to average about 15 a year. I've somehow grown tired of all my friends, so I barely talk to them, if at all. I've even grown tired of my boyfriend who seems to think i'm making it all up. I'm wondering if anyone else has inadvertently seperated themselves from the rest of the world. And any ideas on how to rebuild.

I also have laid low and, I think because of recovery, have been too exhausted to invest in relationships that are wearing. It has gotten somewhat better especially as the diet kicks in. But, I hear ya....

My family threw me a birthday party recently ... and had cake, ice cream, punch.. and nothing..NOTHING ..for me to eat. What? I just sat there and watched everyone else eat..

That sucks! :( Yes, and I hope you did treat yourself.. you know, that new purse.. :P

Marilyn R Community Regular
Marilyn R
Posted

I think depression is part of celiac disease, and with that comes self pity and fatigue and all sorts of self-defeating attitudes.

The one thing I use as a mantra is that I have a disease. A disease that is controlled by what I eat. How lucky are we that we can eat so many foods and not pay for really expensive treatments or drugs to feel better? How lucky are we that we found out before it turned into full blown MS, Lupus, or other autoimmune diseases?

It's perfectly normal to feel bad about having to cope with this disease. But we're still lucky. We found out. :D

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. knitty kitty
      - knitty kitty replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip. The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all. Nothing budged. I tried Milk of Magnesia...
    2. Manaan2
      - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Hidden Gluten in distilled vinegar

      @knitty kitty The information you've provided is invaluable! I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!). This weekend my husband and I plan to solidify all the details for a start point, then adjust as...
    3. BIg Nodge
      - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information. I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS...
    4. Dawn Meyers
      - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too. I was supposed to do testing to find out metal's I was allergic to because I can't wear jewelry of any kind. Mayo felt I had other allergies also.
    5. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,857
    • Most Online (within 30 mins)
      7,748
    FranciL
    Newest Member
    FranciL
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
×
×
  • Create New...