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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,059
    • Most Online (within 30 mins)
      7,748

    VictoriaNaoma
    Newest Member
    VictoriaNaoma
    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

    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • 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.