Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Need Help Please!
0

7 posts in this topic

I have been seeing many docs for the past two years for symptoms that completely fit celiacs. but they are just giving diagnosis of ibs or issues from having my gallbladder out after histroectomy.(even though had inflamation in small intestine since after histo.) But it is not just fatty foods that bother me, really its any food it seems. I have had D for two years now and have lost 60 lbs this year without trying(heavy carb lover and coke drinker?) many other symptoms include

iga deficient

weight loss

fibro

neuropathy

joint pain

bloatting

extreem stomach pain

inflamation(4 ct scans) in small intestine

very low vitamin d levels

trouble with absorbing nutrients(can't keep it in

nasua

fatigue

low grade temp frequently???

And even being diagnosed falure to thrive as an infant(saw this listed on another site)

They ran blood work and did biopsy a year ago said test were negative but there was inflamation in small intestine.(it's been there for two years. since then symptoms have gotten worse, now vitamin d is low, and they actually relooked at iga levels(iga deficient like I told them) and yet they wont redue the biopsy? can the results change in a year? what do you do, it's not like I want this diagnosis(love my carbs) but I am tired of feeling so sick all the time, I can't even enjoy eating or have the energy to be with my kids. the only thing that stops D is to actually stop eating? have been looking at just going Gluten-Free to see if it helps but everything says not to untill you get diagnosis.

0

Share this post


Link to post
Share on other sites


Ads by Google:

oh my. First, I am SO sorry that you are suffering so much. Many, many times the biopsies can be falsely negative. If they don't look in the right place or take enough samples, damage can be missed. Depending on the blood work they did, it may be also falsely negative if you are IgA deficient. There are tests that can be run for IgA deficient people (one of them is the TTG-IgG) and you should ask your doctor about those.

If they do the test and it comes back negative or won't do the test, I would give gluten free a good try. Many, many of your symptoms are CLASSIC of gluten intolerance. Many people have gotten relief from the gluten-free diet without a "firm" diagnosis.

Good luck!!!

1

Share this post


Link to post
Share on other sites

oh my. First, I am SO sorry that you are suffering so much. Many, many times the biopsies can be falsely negative. If they don't look in the right place or take enough samples, damage can be missed. Depending on the blood work they did, it may be also falsely negative if you are IgA deficient. There are tests that can be run for IgA deficient people (one of them is the TTG-IgG) and you should ask your doctor about those.

If they do the test and it comes back negative or won't do the test, I would give gluten free a good try. Many, many of your symptoms are CLASSIC of gluten intolerance. Many people have gotten relief from the gluten-free diet without a "firm" diagnosis.

Good luck!!!

Thank you so much for the help and information. I will be talking to my doctor again!

0

Share this post


Link to post
Share on other sites

My dad had his gall bladder removed and he says it made his symptoms worse. Definitely check into celiac testing. My blood test was false but biopsy and genetic testing (testing for the hereditary gene for celiacs) came back positive.

0

Share this post


Link to post
Share on other sites

I do wonder if there is a link between gall-bladder and gluten. My "symptoms" really started after I'd had my gall bladder taken out in 2000. Over the years they've gotten steadily worse. I'd be curious to know if anyone else sees a link?

0

Share this post


Link to post
Share on other sites




I'm afraid gallbladder and celiac are a common story on these boards. Often the poster will have had the gallbladder removed hoping for relief from symptoms, and they just continue to get worse. Not to say that some of these gallbladders did not need removing, but others have had relief of gallbladder-type symptoms on a gluten free diet (even symptoms which have been confirmed as coming from the gallbladder) so there does seem to be a definite correlation.

0

Share this post


Link to post
Share on other sites

Yea also my aunt had her gall bladder removed and she feels nauseous and sick all the time. She had a alot of tests done and they couldn't find anything so they ruled it as severe ibs. I called her and my dad for you and they said they find relief from avoiding dairy and pastas and breads. My dad drinks something called aloe Vera juice (you can get it at Walgreens) and he said it provides him relief. I now drink it to and it helps with bloating and D.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,354
    • Total Posts
      920,509
  • Topics

  • Posts

    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
    • Before i was diagnosed 2 years ago i had a severe chronic itchy scalp.  It would develop minor pimple like blisters then turn in to sores from the intense scratching.  At the time the dr i saw did a punch biopsy on the original sore, it came back with a florescent pattern and micro abcessing.  i saw a dermatologist who said it was a staph infection (wasn't checking for dh) sent me home with cream and a steroid lotion, didnt work. Shortly after i was diagnosed with celiac and went back to the dermatologist.  He did a punch biopsy BUT he took it from the top of my butt cheek saying that was the most common spot for dh to manifest.  My results were negative.   my question is...   Can this be a false negative due to the punch biopsy not being taken from skin adjacent to the lesions? since being gluten free the intensity has subsided but is still there.
    • Hi Morna.  I will have to add Tom and Chee's to my list.  I have found so many new restaurants on this forum.  My family's birthday season is coming up (I swear, everyone was born between September-December), so I am going to have to check out the bakery on Campbell Station.  Sneak in some gluten-free cake and goodies and see if anyone notices.  I miss cake.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,422
    • Most Online
      1,763

    Newest Member
    Celiacinthesea
    Joined