Jump to content
  • 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

New Here, My Story


mattathayde

Recommended Posts

mattathayde Apprentice

hello all,

ive been using this site for a while for info but i finally thought i should join.

i am a 19 year old college student who was diagnosed with Celiac last year about this time. the applied kinesiologist (kind of like a chiropractor with a lot of eastern/natural medicine mixed in) my family goes to is the one that figured it out. he had figured out i had a wheat issue a while before but i didnt think much of it and kept eating it.

for years i had a horrible immune system when it came to colds (would have them for months at a time), lived on immodium for probably 8 years, and senior year of high school i started gaining weight (about 20-25 lbs in just over a year). once i stopped with the gluten i dropped the weight in just over 2 months, my immune system got much better to the point that i could kick a cold in a few days like a normal person, over all started to sleep better (still need a good amount of sleep though 8+ hours and whats weird is when i wake up is more important than how much sleep i get some times, not sure if its related or if im just weird). my stomach issues have become much better, not totally gone but part is probably due to accidentally glutening my self when i thought i was cooking gluten-free and probably other sensitivities i have yet to figure out.

i have ended up cooking much more and the only places i eat out at any more are qdoba and 5 guys burgers (they were very good here about keeping my bunless burger separate from their normal preparation area and changing gloves to prevent cross contamination as best as they really could).

for the most part my family has been pretty understanding and being half italian food is a huge way to show the love so they had to do a lot of adjustment. my grandparents didnt understand the severity of it at first and my grandma trying to show her love would try and get me to eat some stuff with gluten in it (like cakes, pies, cookies) but since i explained to them that its really poison to me they go out of their way to find gluten-free foods and try their hardest to read all the labels.

i am trying to get my family to go gluten free. my dad i am convinced 100% has celiac disease but be is a stress eater and travels for work so it makes it hard for him, my mom tries to go gluten light because she has found the less gluten she eats the better she feels and the better her shingles feel (she got that like sep of 07 and is still having issues, better but not gone). my sister i only recently realized probably has it she had and still has some times horrible asthma and "ADD", and my brother just has a bad immune system and gets depressed easily (given he has had a lot of stress in his life but i think gluten may add to the issues) .

i guess i am kind of rambling at this point but any way, glad to be here now and hope to get info and share info

-matt


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



Celiac.com Sponsor (A8-M):



audone Newbie

Hey Matt--

I'm new here too. Going gluten-free is tough. I've been gluten-free for 5 weeks. I'm lucky that my DH is supportive but I'm sure it's hard getting your family and extended family to adjust. I miss Qdoba. Where I live now doesn't have it. So far I've found Outback and a local Mexican place that will work with me. Have been cooking a lot! I'm glad you joined. People here seem to be very nice and helpful. I'm looking forward to tapping into some of their knowledge as I continue in my gluten-free journey!

Wendy

ginnybean32 Newbie

Im new here too so I dont have much advice except to say its good to see you taking it so seriously so young. Im 35 and dont want to take it serious plus my family is not supportive hardly at all. Good luck!

mattathayde Apprentice

thanks for the welcomes

Im new here too so I dont have much advice except to say its good to see you taking it so seriously so young. Im 35 and dont want to take it serious plus my family is not supportive hardly at all. Good luck!

well as to taking it seriously its not too hard, i would have to take soooo much immodium everyday to be able to function its not a hard choice. plus seeing the other chronic health issues family members and friends have i just see it as something that i need to deal with. it also helped a bit when my parents kept telling me how worried they were with how much immodium i had to take (and my mom being a nurse gave it even more push). if i didnt have the digestive issues i would cheat all the time i know it. i have a friend who has celiac disease but she cheats all the time because it doestn bother her in a way she sees, i really wish she would take it more seriously because she is a very nice and pretty girl and know what its doing to her.

as to the supportiveness i found once you explain "gluten=poison" for your body they are much more helpful

-matt

ranger Enthusiast

Hi. I'm fairly new to all this, too, but cannot tell you how much this sight has helped me. It would be tougher to be a college student with this problem - I cook all the time. If all I had were a dorm room, I'd be lost but I guess that I would figure something out. It helps to have a supportive family. Hang in there. It's worth it!

mattathayde Apprentice
Hi. I'm fairly new to all this, too, but cannot tell you how much this sight has helped me. It would be tougher to be a college student with this problem - I cook all the time. If all I had were a dorm room, I'd be lost but I guess that I would figure something out. It helps to have a supportive family. Hang in there. It's worth it!

ya the last few months of freshman year sucked, i ate chicken wings (unbreaded) and stuff that was more so gluten light, like stuff that just has some soy sauce on it. i didnt go hard core gluten-free until over the summer, but even with gluten light i improved a lot, lost the extra weight, stomach issues were not as bad, better immune system, over all better mental state

-matt

DakotaRN Newbie

Welcome! I too am quite new at this but this site is awesome. I check it out every day because there iso much to learn and the support is great.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    2. - trents replied to GlorietaKaro's topic in Super Sensitive People
      3

      Am I nuts?

    3. - lalan45 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      My journey is it gluten or fiber?

    4. - Russ H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Anti-endomysial Antibody (EMA) Testing

    5. - Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Just diagnosed today

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

    IleneG
    Newest Member
    IleneG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • GlorietaKaro
      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
    • trents
      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
    • lalan45
      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
    • Russ H
      I thought this might be of interest regarding anti-EMA testing. Some labs use donated umbilical cord instead of monkey oesophagus. Some labs just provide a +ve/-ve test result but others provide a grade by testing progressively diluted blood sample. https://www.aesku.com/index.php/ifu-download/1367-ema-instruction-manual-en-1/file Fluorescence-labelled anti-tTG2 autoantibodies bind to endomysium (the thin layer around muscle fibres) forming a characteristic honeycomb pattern under the microscope - this is highly specific to coeliac disease. The binding site is extracellular tTG2 bound to fibronectin and collagen. Human or monkey derived endomysium is necessary because tTG2 from other mammals does not provide the right binding epitope. https://www.mdpi.com/1422-0067/26/3/1012
    • Scott Adams
      First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.