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

Biopsy was positive, blood work negative...

ChooseJoy

Recommended Posts

ChooseJoy Newbie
ChooseJoy
Posted

I need help! I have been struggling for three years with various symptoms: extreme bloating, hours in the bathroom, headaches, fatigue, skin problems, stomach pain,  joint pain, etc... My doctor wanted to do a scope to see what was going on (before any blood work, weird). I was so fed up with feeling sick I agreed. Biopsy confirmed bad acid reflux, hiatal hernia and celiac disease. After these results the doctor wanted to do the celiac panel blood work to confirm. The blood work came back negative, but my genetic testing was positive. The doctor said I do not have celiac disease because the blood work was negative. I am confused though because I have friends with celiac disease and I have heard that biopsies are the "gold standard" for diagnoses. I have started a gluten free diet, but just wondering if the doctor got the wrong diagnosis? I am not being strict with cross contamination and still am having issues, just not as extreme as before. 

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

Celiac.com Sponsor (A8-M):


SLLRunner Enthusiast
SLLRunner
Posted

Hi Joy,

Welcome!

In a nutshell: your doctor is wrong, you you right. Biopsy is the gold standard, and the biopsy showed you have celiac.

You need to take your diagnosis seriously and work to avoid cross-contamination.  You also need to advise your family of your diagnosis because celiac is hereditary. Also, you might want to look into getting a new doctor.

squirmingitch Veteran
squirmingitch
Posted

And get your records!!! 

cyclinglady Grand Master
cyclinglady
Posted

Other things can cause villi damage:

Open Original Shared Link

Were you gluten free at the time of your blood draw for a celiac blood panel?  Exactly what tests were given?  You might not have had the entire panel.  The TTG test is good, but does not catch al celiacs.  What does your doctor say?   Consider a second opinion.  

If you wish to be gluten free...it is all or nothing.  So, watching for cross contamination is critical.  

ChooseJoy Newbie
ChooseJoy
Posted
  • Author
19 hours ago, SLLRunner said:

Hi Joy,

Welcome!

In a nutshell: your doctor is wrong, you you right. Biopsy is the gold standard, and the biopsy showed you have celiac.

You need to take your diagnosis seriously and work to avoid cross-contamination.  You also need to advise your family of your diagnosis because celiac is hereditary. Also, you might want to look into getting a new doctor.

Thank you. I asked him about the cross-contamination and he said "it's not that big of a deal". I am looking for a new doctor!

 

ChooseJoy Newbie
ChooseJoy
Posted
  • Author
15 hours ago, cyclinglady said:

Other things can cause villi damage:

Open Original Shared Link

Were you gluten free at the time of your blood draw for a celiac blood panel?  Exactly what tests were given?  You might not have had the entire panel.  The TTG test is good, but does not catch al celiacs.  What does your doctor say?   Consider a second opinion.  

If you wish to be gluten free...it is all or nothing.  So, watching for cross contamination is critical.  

This is good info. They at first thought I had Chron's but that all tested negative. I was not gluten free at the time of the blood panel. I called to see exactly what was tested in the blood draw, but still have not heard back. I had an endoscopy, colonoscopy and the "celiac panel" blood draw plus the genetic testing.

It's all confusing because for two weeks before the blood draw, going off of the positive biopsy results they kept saying I have Celiac Disease. After the blood draw results came back negative they said you do not have it, you are probably non-celiac gluten intolerant you can go gluten free but do not worry about cross-contamination. My genetic testing was positive, but I know that can be positive without the disease being active.

I might just need a new doctor and a second opinion. :(

cyclinglady Grand Master
cyclinglady
Posted

Get your celiac blood panel results from your doctor and make sure you had the entire panel.  This is the entire panel list:

Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
 
Why do do I push for the entire panel?  If my doctor did not order the entire panel, my diagnosis would have been missed.  I test negative to the TTG tests even on follow-up testing (post severe glutening).  
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748
    Sally Garber
    Newest Member
    Sally Garber
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
    • Scatterbrain
      Supplements for those Diagnosed with Celiac Disease

      By Scatterbrain · Posted

      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
×
×
  • 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.