My dad wants to believe I have celiac disease

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Cyborg Ninja
Veteran Member


Date Joined Jan 2006
Total Posts : 660
   Posted 6/11/2009 7:07 PM (GMT -7)   
It's been over three years since I was diagnosed, and he's been trying this for a long time - trying to persuade me to think I have celiac disease. I was diagnosed when I had appendicitis, and they could easily see my stricture on film and see my fat-covered terminal ileum as I laid on the operating table.

Celiac disease, I believe, affects the little appendages in the small intestine - those appendages absorb nutrients. Something like an allergic reaction develops to food with gluten. It's likely autoimmune similar to Crohn's disease.

I don't know how I can help him understand that it's Crohn's disease. His wife (my stepmom) had celiac disease, btw. How much does a celiac disease test cost and what does it entail? I don't want to have any more tests for my Crohn's, considering I drank enough cement for a lifetime and have had enough of anal probes.
Current DX: Graves' disease, Crohn's disease, gallstones, scoliosis, syringomyelia


Veebo
Regular Member


Date Joined Nov 2007
Total Posts : 147
   Posted 6/11/2009 7:16 PM (GMT -7)   
Hi Cyborg Ninja,

Ironically I have the opposite issue my father wants me to believe I don't have Celiac disease and is always trying to tell I can have little piece of bread (it won't kill you). Anyway...Celiac disease can be screened for using a blood test for specific antibodies. I believe the test is called tTG. If that test comes back positive then they will typically take an intestinal biopsy (via upper endoscopy) and test to see if the villi in your intestines are atrophied following a pattern consistent with Celiac Disease. I hope this helps. Be well :)

78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 6/11/2009 9:32 PM (GMT -7)   
I understand your frustration. My Mo.ther was in denial for quite some time after I was diagnosed. She would come up with all kinds of crack-pot ideas for me to try..because so-and-so's brother's sister-in-law's cousin had done this, this, or that, and it cured him. Or maybe you are lactose intolerant. (Gah! I *love* my milk!) Maybe you don't even have Crohn's, maybe it's *this* ? condition. Maybe if you eat *this* way or try *this* specific diet regimen. How about drinking Noni or Aloe or whatever the drink-du-jour was.
...and on and on it went. Ad nauseum! 0_o
(M.om does medical billing for Kaiser and she was running *every* conceivable ailment by me...)
I had a very difficult time telling her CD is *not* brought on by food problems. It doesn't matter WHAT I eat, I WILL have problems if my intestines are inflamed. Period. ...and I could not have celiac or lactose problems because my GI Specialist (after I told her of my Mo.ther's concerns) advised my symptoms and problems would be much, *much* worse than what I was currently experiencing.

Pa.rents, you gotta love them, but I find the way they express their love/concern is sometimes aggravating. They are just trying to help.
heidi

*edit*  For some reason, some of the words in my post (mother, mom and parents) were showing up green with underlines and if I scrolled over them, an annoying little pop-up window advertisement came up with a little kid and a cartoon bear in a mirror...for a toothpaste...  I hope I've made the changes to stop that.

Anyone know why that happened? heidi

CARP!  They're *still* there!  ...off to make more changes...


I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  No remission.  No improvement with Remicade.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returned after resuming 6MP.  Changed maintenance med to Methotrexate (MTX) and had great results with IM injections.  Nausea and symptoms returning with oral MTX.  Switched back to IM injections and am slowly improving.

Post Edited (78SilvAnniv) : 6/13/2009 10:44:02 AM (GMT-6)


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 6/12/2009 3:10 AM (GMT -7)   
Not to sound too sarcastic but................the easiest way to shut him up might be blood work that shows you don't have celiac. I'd never even been tested for it until I started seeing my current GI, it was one of the initial tests he did.

Unfortunately, we have to develope a thick skin when it comes to health know it alls. I have one at work who insists that if I eat organic it will cure me! If only..............
 


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 6/12/2009 10:02 AM (GMT -7)   

Ninja, I have a question about your initial post. You said they could see your stricture and "fat-covered terminal ileum as I laid on the operating table." Does this mean you had surgery for appendicitis and/or resection of the terminal ileum?

The reason I am asking is that I just had a colon resection and the operative report said the ileum appeared to have some creeping fat but he did not remove that section at this time.

Thank you.


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 6/12/2009 11:57 AM (GMT -7)   
I've been tested twice for celiac - both negative. So maybe the bloodwork results would be a way to convince him.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


Cyborg Ninja
Veteran Member


Date Joined Jan 2006
Total Posts : 660
   Posted 6/12/2009 7:27 PM (GMT -7)   
Bammer, I had an appendectomy, and have never had my bowels resectioned. There was creeping fat around the terminal ileum.
Current DX: Graves' disease, Crohn's disease, gallstones, scoliosis, syringomyelia


Peace08
Regular Member


Date Joined Sep 2008
Total Posts : 28
   Posted 6/13/2009 11:07 AM (GMT -7)   
i have the same problem. my dad believes my issue is a case of heartburn thats really bad, it didnt matter how much i told him different he was totally convinced. i then decided to let him believe that was the case as it kept him satisfied, and made him feel comfortable that its a problem that can be resolved. That worked for a year, but now my mother thinks i just have some other gastric problem, argh!! :)
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