Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Confued About Biopsy


  • Please log in to reply
6 replies to this topic

#1 glutout

glutout

    Community Member

  • Advanced Members
  • PipPipPip
  • 26 posts

Posted 26 April 2010 - 08:08 AM

Hi. I was diagnosed in Jan. with celiac disease through a biopsy of my intestine. I feel better in some ways but still have symptoms, which I guess may or may not be from celiac disease. I found out that I have been eating gluten by mistake from time to time.I talked to my doc and told them all of this. He said that because my biopsy was "not definate but consistent for Celiac Sprue" I could do a genetic test. Why would I need that? Isn't that going to cause me more confusion if my biopsy says one thing and the genetic test says another? I am not sure what the results mean...is it that I have celiac disease [i]maybe? Does anyone think I should go ahead with the genetic test? I surely don't want to eat gluten-free if I don't need to, right? :blink:
  • 0

Celiac.com Sponsor:

#2 ravenwoodglass

ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,707 posts

Posted 26 April 2010 - 09:41 AM

Hi. I was diagnosed in Jan. with celiac disease through a biopsy of my intestine. I feel better in some ways but still have symptoms, which I guess may or may not be from celiac disease. I found out that I have been eating gluten by mistake from time to time.


The key to your continued symptoms is likley what I have bolded. You should become strict with the diet and likely that will be the end of your issues. If after a couple months of strict gluten free living, and there is much more to it than just the labels on your food, then perhaps look for other issues. For now go with pure unprocessed foods, make sure your living space is free of cross contamination, stay out of restaurants and check all supplements and meds and see if that takes care of your issues. It is also not uncommon for us to have other intolerances like soy and dairy. Eliminate them both for now and add them back on at a time when you have been feeling good for a while.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 skigirlchar

skigirlchar

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 78 posts

Posted 26 April 2010 - 09:57 AM

if you feel better when gluten free, then live gluten free

it IS a lot of work. i am still not 100% gluten or casein free (i work much harder to be wheat and soy free)

I came back negative on both the blood work and the biopsy for celiac, but my allergies are so severe that the gluten-free/cf/sf diet (aka celiac diet) is right for me.

it took me a while to get my house gluten-free/CF/SF. now my problem is outside of the house as I work in other people's homes with children (and they are always offering me food, and since many of the kids i work w/ are picky eaters, being a positive example is important so it's a tough battle of eating my own food in front of the kids vs not eating at all vs. eating what is offered.)

the number one thing i have learned though is that i feel better and better each day i follow the diet, and that just a small meal of "banned" food is enough to make me backslide in a big way.
  • 0
-severe soy, wheat & yeast allergies 2006
-penicillin allergy 2008
-multiple other food & environmental allergies starting 1982
-non-iron deficient anemia - life long
-migraines 3/07
-negative celiac blood testing 10/09 & upper endoscopy biopsy 3/10
-negative GERD observation during upper endoscopy 3/10
-positive hereditary hiatial hernia during upper endoscopy 3/10
+continually working on gluten-free/CF/SF related to allergies & celiac like symptoms
+continually working on elimination of caffine, chocolate, & spicy foods related to hernia & heartburn

#4 tarnalberry

tarnalberry

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,542 posts

Posted 26 April 2010 - 10:06 AM

Yeah, if you've been getting even a very small amount of gluten, you can't expect to have your symptoms go away. If you've seen improvement (without symptoms going away), then I'd be fairly confident that it's celiac. It's not terribly common for biopsy findings that are consistent with celiac to be from something else (possible, but those other things are likely to be eliminated previously, and won't respond the gluten free diet).
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#5 glutout

glutout

    Community Member

  • Advanced Members
  • PipPipPip
  • 26 posts

Posted 27 April 2010 - 04:30 AM

Yeah, if you've been getting even a very small amount of gluten, you can't expect to have your symptoms go away. If you've seen improvement (without symptoms going away), then I'd be fairly confident that it's celiac. It's not terribly common for biopsy findings that are consistent with celiac to be from something else (possible, but those other things are likely to be eliminated previously, and won't respond the gluten free diet).

So you do not think the genetic test is necessary?
Tarnalberry, what other things in the biopsy could be a problem?
Ravenwoodglass, I LOVE your profile picture!!!
  • 1

#6 ravenwoodglass

ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,707 posts

Posted 27 April 2010 - 09:53 AM

So you do not think the genetic test is necessary?
Tarnalberry, what other things in the biopsy could be a problem?
Ravenwoodglass, I LOVE your profile picture!!!


The genetic test can satisfy curiosity but if they only test for DQ2 and DQ8 you could end up thinking that celiac is not a possibility. There are 7 additional celiac related genes but most doctors don't check for them. I had my genes tested because my biopsy and blood positive daughter had her diagnosis taken away after she was gene tested. That prompted me to test with enterolab to see what gene I do carry and it turns out the I don't carry either of those either. I do however have a double dose of a celiac related gene....if I lived in Asia or Europe anyway.

I really enjoyed taking that picture of the rooster, he was so offended by my doing so! Turns out he got his revenge inadvertently because I got so close to the gluten filled cages I was sick for 2 weeks afterward.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#7 glutout

glutout

    Community Member

  • Advanced Members
  • PipPipPip
  • 26 posts

Posted 28 April 2010 - 07:51 AM

The genetic test can satisfy curiosity but if they only test for DQ2 and DQ8 you could end up thinking that celiac is not a possibility. There are 7 additional celiac related genes but most doctors don't check for them. I had my genes tested because my biopsy and blood positive daughter had her diagnosis taken away after she was gene tested. That prompted me to test with enterolab to see what gene I do carry and it turns out the I don't carry either of those either. I do however have a double dose of a celiac related gene....if I lived in Asia or Europe anyway.
I really enjoyed taking that picture of the rooster, he was so offended by my doing so! Turns out he got his revenge inadvertently because I got so close to the gluten filled cages I was sick for 2 weeks afterward.



The lab my doctor wants to use is Prometheus Labs. They are supposed to be pretty good, but I don't know how many genes they are testing for.
That is so great you took that picture yourself! It makes me smile except for the fact you had to suffer for it! :(
  • 0


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: