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

Columbia Conference


flagbabyds

Recommended Posts

flagbabyds Collaborator

I was was wondering if anyone is going to this, I am, April 2nd and register @

Just wonderingOpen Original Shared Link


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator
:( i would love too, but i work on saturdays and since it is a new job i dont feel i can request time off---anyone that goes can fill us in--otay----deb :lol:
celiac3270 Collaborator

That's so cool! Thanks for posting it--I sent the link to my mom and I think I can go :). It might be very interesting and I'll make sure I take scrupulous notes or save brochures so I can share all the information here.

angel-jd1 Community Regular

The only activity that I see on the 2nd is a screening fair. Am I missing something?? -Jessica

I only found this:

April 2, 2005

Celiac Disease Center

flagbabyds Collaborator

YOu have to click on the calendar of events and then you can get the pdf agenda and there are a lot of talks and discussions.

I'm flying out from California on Wednesday and leaving on Sunday and going with my sister who is getting the screening, it's going to be really fun

Wow I keep editing this, ok it is a screening fair but you don't have to get the screening done, there are also talks and sessions if you look on the calendar of events

stef-the-kicking-cuty Enthusiast

Does anybody know, how the screening will be done? Blood test??? And do you need more than one person from one family since it said family screening???

Hugs, Stef

flagbabyds Collaborator

you don't have to have more than 1 person it is just reccomended so you can get your whole family tested, and i think that it is done by blood but i'm not sure, you can email the lady if you want to know


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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

I just registered! It's going to be so interesting and fun!

celiac3270 Collaborator

No--you don't need more than one person. It's just marketed that way. My mom and I both registered last night--she's going to do the screening even though she's tested negative for celiac in the past because she seems to have symptoms that match up with celiac: hypothyroidism, bloating/distended stomach after eating particularly gluteny foods, etc.

If you register, you have the option to do the blood screening, for which you need to pick a time frame, such as 8:00-8:15, 8:15-8:30, etc. in which you would like to do the test. I'm not getting tested, obviously, but I'm doing the other option you need to sign up for, the "teen cooking" thing, which you also need to pick a time for: a morning one or an afternoon one at 2:30. Then there are people talking throughout the day--you listen to whichever talks you want and they have a Q and A section after each...lecture? speech? whatever they call it.

To answer your question--simply, get as many people from your family tested as you want--or none.....

flagbabyds Collaborator

I'm not getting tested either... But my sister is even though she has been doing mostly gluten-free, she wants to get tested again, because her Biopsy was negative, but she feels better on the diet. I'm doing the afternoon teen cooking, all teens who are going should do this one ;)

celiac3270 Collaborator

I'm also doing the afternoon teen cooking....yay, I'll meet somebody else from the board! :) Then I'll be able to put a face with the name :P

If your sister is on a nearly gluten-free diet, though, she probably won't get accurate blood results, but I guess if it comes free with going to the event and it only takes a few minutes, it can't hurt.

mela14 Enthusiast

now that I am officially here in NJ I will probably register to go! I just oed in today....everything is in boxes but got to my lap...yeah!

I really need you guys now! I am soooooooooo sick. I have been officially glutenized to the max! I am going to post a new topic just to keep things straight...but the bottom line is I bought a whole rotisserie chicken in Wegman's and am deathly ill from it! I spent an hour crying in the bathroom and feeling like I was poisoned! My gut is raw and painful and distended. I am in AGONY!

I had this same chicken at this same Wegman's 3 weeks ago and did not get sick. I specifically went to this store . the label said whole chicken...nothing else...no added ingredient. . I spoke with the cook and she said nothing was added............. I walked out of a different store that I had gone to before this store because the chicken they had was full of "bad" ingredients!

I am getting worse! I just flew in last night and was still suffering from the Lays Potatoe chips and now this. I did NOT eat on the airplane and had a banana for breakfast....so that wasn't it. I ate the chicken and immediately got sick.......... I had a baked sweet potatoe with it but it wasn't that. I microwaved it myself so it couldn't be that. I ate nothing else! it's not 7 hours later and haven't been able to eat. I feel so ill........

If my stove would have been connected this might not have happened. I had workers in my house during the week and the kitchen should have been in order. I get here only to find my stove in my dining room along with my frig. The ony place that I felt safe to go to was Wegman's and now this. The workers are back tomorrow at 8:00am to do the floors in the kitchen. After that I will have my kitchen back.

So much for a smooth move! I should have stayed in Florida. I am so depressed and still in so much pain.

Help! I thought about slitting my wrists today. I can't do this anymore!

I have so much to do this week and just want to lay down and rest. Make the world go away!

I'll have to call my new GI and move my appt up. At this point he might as well do the biopsy that I've been avoiding............I really need to be sedated (just to get some rest)....even if for a little while. Maybe I won't wake up ...won't that be an added bonus.

So much for putting this in another post. I got it all out right here.

oK.the migraine is setting in and I don't know how I will be able to sleep from this pain..........I dare not even take anything for it.

irishchick04 Newbie

Wow. I wish I could go to this. Luckily it sounds like the people who are getting to go will be able to give us a full review.

Mel,

Hang in there. I know how you are feeling. I just spent the last hour crying on the phone to my mom because I have been feeling so sh*tty.

I had to go on a four day field trip with my college class and I accidently got gluten the day before and I had the worse reaction while I was on the trip. It is so <i>not</i> fun to be out in the field doing research and suddenly need to use the bathroom for like four hours. I know what you mean when you say you feeling like slitting your wrists. But believe me, that's not the solution.

Just hang in there. It's so hard sometimes (actually ALOT of the time). I often feel like I just can't win but you just gotta keep putting one foot infront of the other.

Good luck!

Caryn

KaitiUSA Enthusiast

I think I am going to go too my parents seem interested in taking me but I'm not 100% sure if I'm going yet. I hope to :D

  • 3 weeks later...
celiac3270 Collaborator

The registration deadline for this event has been extended to March 21st. So for anyone who has an interest in going and hasn't registered--you still have two more days!

Kaiti, are you going?

Carriefaith Enthusiast
The admission fee includes screening for celiac disease, test results, educational sessions, cooking classes for teens, exhibits, food sampling and entertainment.

Oh wow... that sounds like fun! I'd love to go but I am insanely busy for the next 3 weeks <_< Hopefully, I can make it to the next event! :)

For those that do go, let us know how it went!

celiac3270 Collaborator

I will :). I'll take scrupulous notes and post them in a new thread. I'll try to make everyone who can't make it feel like they did :D;)

Carriefaith Enthusiast

Thanks celiac3270! That's very nice of you! B)

It would sure be nice if we could all make it to an event like this... It would be like a

Celiac.com reunion :lol:

celiac3270 Collaborator

I know--wouldn't that be amazing?!

I've only met Kristina (mysuicidalturtle) in person...but I'll meet Molly (flagbabyds) at the conference...that'll make two celiacs from the board :D

dreamhouses Newbie

Mela, I hope you feel better soon. We will not be defeated by one funky chicken!! Since you are wondering about that chicken you ate: do you know that sometimes chicken has stuff injected into the meat by the processor, like a some sort of salt solution containing who knows what. I was really surprized to read a label in the grocery on some raw chicken saying it had this stuff, - I don't know if that would have gluten in it, but it makes me suspicious, maybe the place you got it used a product like that the second time.

FYI when I had really bad food allergies(in my early 20's) I was helped the most by sublingual drops which trained my body to tolerate stuff by putting tiny doses under the tongue...and interfering with the IGE reaction. Cool stuff. I'm having a few more food allergies now (much later) ... and I'm about to do the Bioset program with my naturopath - which uses accupressure. I'll post on how that goes, but she says its really effective. Keep your chin up. Valerie

celiac3270 Collaborator

Online registration is extended to Friday, March 25!

There are still openings for celiac disease screening at the Celiac Disease Center Family Screening Fair.

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

      Am I nuts?

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

      Anti-endomysial Antibody (EMA) Testing

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

      Just diagnosed today

    4. - Scott Adams replied to GlorietaKaro's topic in Super Sensitive People
      2

      Am I nuts?

    5. - Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      My journey is it gluten or fiber?

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

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lalan45
    Newest Member
    lalan45
    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

    • 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.
    • 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.):    
    • Scott Adams
      Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already.
    • Scott Adams
      Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again.
×
×
  • 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.