Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Need Help Please!


heather van

Recommended Posts

heather van Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



adab8ca Enthusiast

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!!!

heather van Newbie

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!

heidi g. Contributor

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.

kingle Newbie

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?

mushroom Proficient

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.

heidi g. Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,810
    • Most Online (within 30 mins)
      7,748

    rdwells
    Newest Member
    rdwells
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.