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

Waiting Stinks.


NotMollyRingwald

Recommended Posts

NotMollyRingwald Apprentice

Warning: somewhat irrational, kinda childish, mini vent forthcoming. Read at own risk. (Lol)

I've started back eating gluten, going for at least 2 pc of bread a day, while waiting for my GI appt (initial consult). Five days in and I'm in a funky place...the appt is still 3 wks away (well, 19 days, 13hrs, 28 min...but who's countin?) and I just wish I had a magic time portal that would whisk me away to May 17. My brain is foggy, I'm weak, I cant keep a thought in head, my stomach aches, my belly is distended, I could out fart my husband, (after a night of beer, nachos, and bean dip,) all I want to do is sleep. The tragic part is, I'm so afraid the GI will dismiss me, no endo, no additional testing, no answers...and then I'll be backto square one. Either way, more waiting and more gluten... Anyone have a magic wand, or something hard I can beat my head against?!?! Ahhhhhhhhhh!!!!!! \\ END RANT \\

Ok, ok, just had to get that out of my system. :)


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Oh, we are very familiar with the "I'm doing a gluten challenge and this stinks" rants. :lol:  (but people use more salty language than "stinks")

 

You absolutely get to to rant, vent, scream, whine and throw stuff around the yard....Oh., and punch pillows (just not the hubs)

 

This is a brave thing you are doing and not many could survive it (I couldn't)

 

Some enlightened docs will diagnose based on the symptoms that come roaring back on gluten and a positive gene test.

 

Nope, sadly no magic wands. Sorry, kiddo.

 

In the meantime, we can be your cheerleaders.

 

smileys-cheerleading-755332.gif Go Amy, go Amy, go Amy and here's a ((hug))

Celiac Mindwarp Community Regular

Hang in there.

I lasted 3 weeks, and was very unwell by the end of my challenge.

I know it is horrible to think you might go through this and not get a diagnosis, but even if that does happen, there may be a silver lining (though you might not think so right now...). Your reaction to eating gluten is evidence to doctors. I wrote down my symptoms and my GI used it for a diagnosis of non celiac gluten intolerance. Secondly, you may well find it easier to stick to a gluten-free diet if you don't get a celiac diagnosis. Plenty of us are NCGI. My life has transformed gluten-free.

Wish I had better news to get you through right now. Like Irish says, we've been there and will shout from the sidelines.

NotMollyRingwald Apprentice

Lol @the "salty" language. I must admit, there have been a few words unsuitable for children out of my mouth lately. Hehe

Thanks for the support and hugs!! I just keep repeating that line from Finding Nemo...just keep swimming, just keep swimming, just keep swimming (repeat x400000000)...May 17 be here soon (I hope!)

NotMollyRingwald Apprentice

"I know it is horrible to think you might go through this and not get a diagnosis, but even if that does happen, there may be a silver lining (though you might not think so right now...). Your reaction to eating gluten is evidence to doctors. I wrote down my symptoms and my GI used it for a diagnosis of non celiac gluten intolerance. Secondly, you may well find it easier to stick to a gluten-free diet if you don't get a celiac diagnosis. Plenty of us are NCGI. My life has transformed gluten-free."

Great perspective, thanks :)

Adalaide Mentor

In the end, no matter whether you get the support of doctors or not, you now know without a doubt that gluten is poison to you. That is something at least. And yes, just keep swimming. Because from your signature I know this may help, always remember... when life gets too hard to stand, kneel.

IrishHeart Veteran

Lol @the "salty" language. I must admit, there have been a few words unsuitable for children out of my mouth lately. Hehe

Thanks for the support and hugs!! I just keep repeating that line from Finding Nemo...just keep swimming, just keep swimming, just keep swimming (repeat x400000000)...May 17 be here soon (I hope!)

 

 

You have a few necessary ingredients for survival--a sense of humor and great faith.

 

Tough times don't last. Tough people do.

 

Hang in there, hon. We're here for you.


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



Celiac.com Sponsor (A8-M):



NotMollyRingwald Apprentice

" always remember... when life gets too hard to stand, kneel".

AMEN a 1000x to that!!!

NotMollyRingwald Apprentice

"Tough times don't last. Tough people do.

Hang in there, hon. We're here for you."

You are so right, "I can do all things through Christ, who strengthens me." Most important truth. This board has been such a blessing to me, I am lucky that my husband is supportive (albeit clueless), but there is NO sub for the support/advice/shoulder of those who have been there/done that/got the shirt!!

Celiac Mindwarp Community Regular

We have the best selection of shirts here!

Stick around and we can help you find yours :)

IrishHeart Veteran

Her shirt today would probably read:

 

"This is  bull$&#.! "

NotMollyRingwald Apprentice

Hahahahaha!! Right now, mine would read: "Warning: atomic fart zone"

IrishHeart Veteran

Hahahahaha!! Right now, mine would read: "Warning: atomic fart zone"

 

 

:lol:  you're adorable, even though you feel like crap. Kudos!

1desperateladysaved Proficient

Hi Amy,

 

Okay, so when you can no longer kneel, be carried.  See my profile?  Isaiah 43 and 44 are encouraging to me lately.

 

"You are precious."  "I love you," the Lord says.

 

I can keep going.  Please keep going too.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,201
    • Most Online (within 30 mins)
      7,748

    Judy Wysocki
    Newest Member
    Judy Wysocki
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.