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

Looking For Some Support.


IrishEd

Recommended Posts

IrishEd Newbie

I'm 20, and I figured out that I have celiacs about a year ago after suffering from progressively worsening symptoms for the past three years and many doctor's visits. I am having a rather hard time dealing with this on top of the other things I have to deal with. I have been in and out of the hospital all my life, having had 9 major surgeries, developmental disorders requiring speech therapy and extensive work to develop fine motor skills, possible brain damage, and even one point where the doctors where sure that I was going to die as just an infant. I also have alpha-1 antitrypsin deficiency, which was discovered when I was just a baby.

Aside from the medical conditions, I also was a shy kid who had to deal with an older sister with aspergers, who had been a huge strain on my family. Along with that, and some bad choices in friends to confide in has left me with self-isolting and unable to really trust anyone, even those who really care about me.

I am pretty much at my wits end and am sort of tired of having to deal with everything, since I have never really had many healthy times in my life and I already have a fair amount to deal with and, partly through my own action, no one I can really turn to that understands all this and is willing to be there for me.

I don't know what I really am expecting from this website. But, I could always use some help on this. Part of the problem I am really having is just, it is very hard to have a social life and connect with people when so much of the food and places my friends and others go to have gluten. It is especially tiring for me since I am extremely uncomfortable talking with people and then to always have to deal with and describe celiacs to others, on top of the others things I have, is just getting to be to much.


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Welcome IrishEd!

It sounds like you are having a difficult time of it right now.

Sorry you are feeling so overwhelmed and stressed about socializing. I find that it is hard to eat with people too without explaining gluten intolerance. But really, I am doing that way less than when I first was learning it live with it.

Are you feeling better when you eat gluten free like in the last year? I found that my social anxiety and depression were significantly reduced after going gluten free.

Wanted to give you some support and wish you well.

GF BRO Newbie

Hey man,

I can relate to you a bit. I'm 21 and have had my fair share of medical issues. Had a couple of tumors removed from the back of my head in the parotid gland over the past few years. I've had to deal with being anaphylaxis to nuts, peanuts, and coconuts my entire life. While I can't say that my experiences are the same as yours, I understand what its like to deal with having a social life and coping with stupid medical issues that are out of your hands. Pertaining to the gluten thing, at first it seems like you are trapped and stuck. I was bugging out at first. However, I lead a very active social life at college now. Sure, you may have to do some research at restaurants before you go out, but there is almost usually something you can eat when you are out with friends. Big dinners are the only thing that scare me and if the restaurant can't help me out, I eat beforehand and have a drink or two instead. Everybody who I am friends with knows my deal and are pretty cool with the idea. It also makes for easy conversation with the ladies, especially when I tell them how this diet has allowed me to keep fit. Not saying its easy bro, but its really manageable. I look at all my medical problems not as curses, but character traits that make me more aware and cognizant of my surroundings. At the end of the day, theres always worse stuff to have to deal with. Hang in there dude. Gets better.

eatmeat4good Enthusiast

Outstanding reply gluten-free Bro! :D

lizziebee Apprentice

I'm 20, and I figured out that I have celiacs about a year ago after suffering from progressively worsening symptoms for the past three years and many doctor's visits. I am having a rather hard time dealing with this on top of the other things I have to deal with. I have been in and out of the hospital all my life, having had 9 major surgeries, developmental disorders requiring speech therapy and extensive work to develop fine motor skills, possible brain damage, and even one point where the doctors where sure that I was going to die as just an infant. I also have alpha-1 antitrypsin deficiency, which was discovered when I was just a baby.

Aside from the medical conditions, I also was a shy kid who had to deal with an older sister with aspergers, who had been a huge strain on my family. Along with that, and some bad choices in friends to confide in has left me with self-isolting and unable to really trust anyone, even those who really care about me.

I am pretty much at my wits end and am sort of tired of having to deal with everything, since I have never really had many healthy times in my life and I already have a fair amount to deal with and, partly through my own action, no one I can really turn to that understands all this and is willing to be there for me.

I don't know what I really am expecting from this website. But, I could always use some help on this. Part of the problem I am really having is just, it is very hard to have a social life and connect with people when so much of the food and places my friends and others go to have gluten. It is especially tiring for me since I am extremely uncomfortable talking with people and then to always have to deal with and describe celiacs to others, on top of the others things I have, is just getting to be to much.

dear irishEd i understand how frustrated you are im 13 and i was diagnosed in the begining of the year with my heartt condition which is a major struggle im on medication 3 times a day (and have to take it at school which can be a hassle) ive missed so much school for it and on top of that i was in and out of the emergency room and hospital with chronic stomach pains at the begining of the month i was in the hospital for a week because of the pain and how bad it was but the docters kept insisting it was only a virus even when the tests for all the viruses came back negative i was so confused and scared when my mom brought up exploratory surgery because of my families long list of health issues they only denied it i was so frustrated on day 7 i was finally released yet still in pain about 2 weeks later i was in the emergency room because i had the same pain but worse it was so bad it woke me up from my slumber in tears and on the verge of screaming because it was so bad i was taken to the emergency room they did the cat scan and my insides came back inflamed the docter came in and said my symptoms sound like celiac confused i asked what that was and after he explained it to me it made perfect sense that night for dinner i had a lovely bowl of pasta he told me we couldnt do the test there so we had to go to a special lab my stomach docter told me he thought it was just me still suffering the after math of a bad virus but said he would do the celiac test any ways a couple of days later my mom got a phone call from the docter telling us that the blood work came back positive extatic to know what i had, had a name and wasnt just in my head but i was heart broken to know what i had would be such a struggle on the 28th of february im going in for my endoscopy for further testing im very very nervous and dont know what to expect but im glad their are other people like me i was afraid that i was alone and sadly at home i am but people like us need to stick together ;)

  • 2 weeks later...
happybfree Rookie

Hey man,

I can relate to you a bit. I'm 21 and have had my fair share of medical issues. Had a couple of tumors removed from the back of my head in the parotid gland over the past few years. I've had to deal with being anaphylaxis to nuts, peanuts, and coconuts my entire life. While I can't say that my experiences are the same as yours, I understand what its like to deal with having a social life and coping with stupid medical issues that are out of your hands. Pertaining to the gluten thing, at first it seems like you are trapped and stuck. I was bugging out at first. However, I lead a very active social life at college now. Sure, you may have to do some research at restaurants before you go out, but there is almost usually something you can eat when you are out with friends. Big dinners are the only thing that scare me and if the restaurant can't help me out, I eat beforehand and have a drink or two instead. Everybody who I am friends with knows my deal and are pretty cool with the idea. It also makes for easy conversation with the ladies, especially when I tell them how this diet has allowed me to keep fit. Not saying its easy bro, but its really manageable. I look at all my medical problems not as curses, but character traits that make me more aware and cognizant of my surroundings. At the end of the day, theres always worse stuff to have to deal with. Hang in there dude. Gets better.

Wow! Thank you gluten-free BRO! Great post! I especially like that line about character traits...

Eatmeat also has a true point. Probably because of the energy I have now, I can socialize better than ever before, and (even) especially off gluten I can have a great social life.

I got used to just ordering a salad everywhere I go. The joke is that I'm gonna one day turn into one. Or at least create a new green coloured race.

Things get better :)

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. - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

    2. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    3. - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    4. - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

    5. - pdm1981 replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,851
    • Most Online (within 30 mins)
      7,748

    Roselle
    Newest Member
    Roselle
    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

    • BIg Nodge
      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
      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
      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.
    • Dawn Meyers
      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
    • pdm1981
      When I went to the Mayo Clinic back in 21' it was pretty amazing. The doctor sat and went over everything with me for a couple hours. I finally had to ask him if he had other patient to see. He said that not until he was done with me. I went back to my hotel room that day after some blood work and then got an itinerary of tests to be done over the next 5 days. It was unbelievable. I had what would've been 4 years of testing back home done in 5 days. I went home at the end of 5 days and got my results a week later on a zoom call. EPI and rapid gastric emptying syndrome. I do have celiac disease but that wasn't the cause of my continued symptoms. Those people up there are great. Wouldn't that be amazing if all medical care was like that?  That's weird that the antibodies are that high. Hopefully it's not refractory celiac disease. Good luck.
×
×
  • Create New...