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

Lo And Behold


tiredofdoctors

Recommended Posts

tiredofdoctors Enthusiast

Ash went back to the doctor today at school. They now have her going to the Chief GI and the Chief Hepatologist.

They did TONS of bloodwork today (she said 10 tubes drawn), but "three of the tests were specific for Celiac Disease" --

They have her scheduled for an endoscopy, and probable colonoscopy.

Their other two (scarier) but less likely diagnoses: a rare form of colon cancer or liver cancer.

The doctor did say, however, that with my disease, the fact that they DIDN'T do an HLA DQ1 test (said they couldn't??????), but that I have gluten intolerance, everything points to Celiac Disease. My daughter is furious. She said that my pasta "is disgusting". It's not like REAL pasta. (She grew up on home-made noodles, spaghetti noodles, etc.) Hoping VERY MUCH that it's Celiac and no more than that.

Thought that it was kind of ironic that she had a really hard time believing that my difficulties were not in my head -- and were due to gluten -- and now, the tables have turned . . . . . . .


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

Ashley still has the TB problem, doesn't she?

If she has celiac disease, I would love to be a mouse in her home. The rantings are going to be worse then they are now. I would be sorry that she has it, but hope that if she does, some good can come out of the diagnosis. Like treating her Mother's illness seriously and with caring.

CarlaB Enthusiast

For so many people a celiac diagnosis would be so scary ... but since it's familiar to us now, you can honestly say, "Thank goodness it's ONLY celiac!" It definately sounds like the best choice of the three ... not that there's a choice involved. Keep us posted.

happygirl Collaborator

Keep us updated, Lynne. I'd definitely be interested to know how this all plays out. xoxo

Canadian Karen Community Regular

Oh my...... The irony of it would be just too much to fathom!

What goes around, comes around..... Above all, God does seem to work in mysterious ways, doesn't he?.....

Luv ya always,

Karen

tiredofdoctors Enthusiast

Isn't that the truth????? She has her endoscopy on Wednesday at 11:00. I'm gonna be there, because I want to hear it STRAIGHT FROM THE SURGEON if those villi are flattened!!!!!

It would make ABSOLUTE sense, though, as to why she is having so much difficulty. She is pale, she is RAIL thin, she swears she's eating, not purging, and her husband backs this up. When she is at my mom's she is always "grazing" . . . of course, on all things gluten-filled!

Should be interesting to see how this plays out. I SERIOIUSLY hope it's "only Celiac". Funny -- two years ago, I would have FREAKED OUT if I found out my daughter had Celiac!

AndreaB Contributor

As Carla said, we've come far when we hope it's just Celiac.

At least that is totally treatable with the diet change.

Please keep us posted.....I know you will. :)


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. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    2. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

    3. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    4. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    5. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies 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.