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 Celiac.com!
    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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
eatmeat4good Enthusiast

Outstanding reply gluten-free Bro! :D

Link to comment
Share on other sites
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 ;)

Link to comment
Share on other sites
  • 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 :)

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,057
    • Most Online (within 30 mins)
      7,748

    paulaglover
    Newest Member
    paulaglover
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
    • knitty kitty
      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
    • Spacepanther
      thank you knitty kitty I don't have a vitamin deficiency and I supplement omegas.  Are there other more mild symptoms that co-occur with your joint pain as well @Moodiefoodie? I am suspicious my own joint pain could be related to another autoimmune issue. I am wondering if it is Crohn's or something similar because I've continued to experience some issues despite having normal celiac antibody levels. What have you considered?
×
×
  • Create New...