Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Confused About Test Results; No Treatment Options. Left Confused!


  • Please log in to reply

3 replies to this topic

#1 KnightRobby

 
KnightRobby

    Community Member

  • Advanced Members
  • PipPipPip
  • 72 posts
 

Posted 05 March 2013 - 09:15 PM

After months of tests, including HIDA scan, blood work, small bowel series, etc I have left my supposed "Celiac Doctor" (my GI) and I am looking for a second opinion.  I am totally confused by my results.  My GI told me it could be Crohn's, it could be IBS, and even said, "It could be anything!"  He gave me a pamphlet and that is it.  He hasn't told me that he is going to treat my pain left abdomen, which also feels like it is have muscle spasms (I am thinking spastic Colon).

 

I have questions about my blood work.  My initial Celiac panel was 138/20 and was very high (from what I understand).

 

A month later I had my tTG IGA tested again but it was: 52/20 (as opposed to 138/20)  Was this because I was eating gluten free the second time?  And if I was eating Gluten free, should that number be below 20?

 

Also, I had my Glaidin Peptide IGA checked, which was: 51.70/20  I have only done a little research on this and don't know much about it.  But with this number he said "possible Crohn's."

 

I've had a colonosocpy and endo done, which came back for:

- A scattered area of erthyematous mucosa was found in the sigmoid colon and in the descending colon.  It was biopsied but they couldn't find anything (could this be from eating Gluten free?  I was eating gluten free at the time).

- Non-bleeding internal hemorrhoids were found during retroflexion and were moderate. 

 

- I have also developed new food allergies very suddenly.

 

I am wondering if it is nerve damage to my colon due to laxatives and pain killers.  I am having every symptom, including malnutrition and signficant weight loss/constipation and pain right in my left abdomen (colon) region: http://www.ehow.com/...ines-colon.html

 

At this time I am seeking a second opinion but a lot of these doctors on my insurance have been horrible all around.  At this point, I really don't know how to proceed.  I'd like to do all natural diet.


  • 0

Celiac.com Sponsor:

#2 gatita

 
gatita

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 382 posts
 

Posted 06 March 2013 - 11:58 AM

I hear you about confusing tests!

 

So if I understand correctly, the baseline for normal on your ttg is 20? In that case it makes sense that your number went down after going gluten-free, and I'm told it can take a while to get to normal, so one month may not be enough.

 

The sigmoid and descending colon aren't affected by celiac (that damage is in the small intestine), so a negative biopsy there might not be related to going gluten-free -- although some people do believe going gluten-free also helps conditions like Crohns and ulcerative colitis.

 

Sounds like a second opinion is in order. "It could be Crohn's" is not helpful at all!

 

Have you gotten any relief when you went gluten-free?


  • 0

Diagnosed with wheat hates me 4/13


#3 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 07 March 2013 - 07:04 PM

You didn't mention any biopsies from the small intestine.  Were none taken?  If not this was a mistake, because celiac disease usually is not seen with the naked eye -- you need the biopsy and the microscope.

 

You need to get copies of all your test results from your (former) GI and see for yourself what they say and don't say.

 

Any time you are gluten free, celiac testing is totally unreliable.  You go gluten free to cure celiac disease, so it is expected that your condition will improve gluten free.  Even so, it appears you were still out of range.  But you need to find out these results for yourself, and if you would like, post them on here so we can feel free to comment on them :P   And criticise :D

 

Weight loss, constipation and malnutrition are also known symptoms of celiac disease (along with about 197 other symptoms, some of which I recall you also have). 


  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#4 RyeSnake

 
RyeSnake

    New Community Member

  • Members
  • Pip
  • 7 posts
 

Posted 08 March 2013 - 01:12 PM

Right on there Mushroon.  I would also say biopsy is the way to go. My blood test was borderline but my biopsy told the true story for me. When first went to see my GI doctor I was 120 lbs from 150. Now I'm at 165 for 10 years now.  My family doctor dismissed everything as pretty much in my head and even my thyroid blood levels they thought was fine. Blood test and biopsy confirmed mine from my GI doctor. Also deveolped barrett's esophagus from the indigestion but a endoscopy will tell you this also if you have it.

 

Rye


  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: