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tiredofdoctors

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

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 . . . . . . .

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mouse Enthusiast
mouse
Posted

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
CarlaB
Posted

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
happygirl
Posted

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

Canadian Karen Community Regular
Canadian Karen
Posted

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
tiredofdoctors
Posted
  • Author

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
AndreaB
Posted

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. :)

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    • knitty kitty
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    • NanceK
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    • knitty kitty
      Is this celiac?

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    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
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      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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