Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Negative Biopsy


Cstrong

Recommended Posts

Cstrong Newbie

Hi, I had a positive blood test IGA 44.8 and IGG 184.5, but my biopsy came back today as negative. During the procedure I had told the doctor I felt better since I hadn't been eating wheat, etc. and he said "You don't know that diet, there is no way you haven't eaten any wheat, it is in so many things...."

Anyway, he called today and said it came back negative and that I can eat wheat :unsure: I feel so much better since I haven't been eating wheat. My symptoms were severe stomach pain (on a scale of 1-10, the pain was a 10+), and now I only get little twinges of pain now and then.

Any advice on whether or not I should try wheat again? Of course my head says no, but my heart says "some pasta sure would be good right about now"!


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



Celiac.com Sponsor (A8-M):



GEF Explorer

Hello & welcome, Cstrong!

Would it give you comfort to know that you're not alone in your plight? Through a lot of reading, I have come to the conclusion that positive blood tests in themselves are reason enough to at least attempt a total gluten-elimination diet. Your body is producing antibodies against gliadin it's not only your intestines that can show damage. I needed a lot of convincing, believe me... but, I've read so much about how not having full-blown celiac now, doesn't mean you won't develop it later.

You'll receive a lot of support here... also, it's a benefit to read back through previous posts when you have a chance.

Good luck!

Gretchen

lovegrov Collaborator

Well if you like 10+ stomach pain, then, sure, go ahead and eat wheat.

Your blood tests alone put the chances of you haivng celiac disease at more than 95 percent. Add in the improvement in symptoms and you're near 100 percent.

richard

Happycat Rookie

Hi Cstrong,

This is an uphill battle all the way isn't it? If you feel better off wheat then don't give up. I think you should find another doctor who will listen. I called Dr. Peter Green's office and he agreed to look at my son's slides from his 7/26 biopsy along with his bloodwork. He is IgA deficient and 115 IgG. He has been suffering for 4 years. It is so sad that doctors are not very aware of celiac disease. I have told all the doctors I have taken him to all his symptoms along with his family history and still I was the one to bring up celiac. I do not look at doctors the same anymore.

Good luck and don't give up!

Lisa

tarnalberry Community Regular

Grrr. I really hate it when doctors treat patients like they're stupid. There's no excuse. I say stick with what makes you feel better. You want another test? Have a wheat based sandwich. See how you feel. There's a test if you're not sure already!

terri Contributor

It's funny how doctors are so different. My blood tests were positive and I asked if he was going to do a biopsy. He said only if my symptoms did not go away. He also had told me the true test is how I felt on a gluten free diet as Celiac does not always show up in blood tests or biopsies. And he's an Internist, not even a GI doctor!

So, in my opinion, if your blood tests were positive and your pain went away, why go back to wheat? If it's pasta you want, try some Notta Pasta or Quinoa Pasta they're yummy! And you won't get a tummy ache!!!

Terri

Mballerina Explorer

If your Anitbodies (IgA's) are elevated, even though your biopsy is negative you should go on a gluten free diet as stringently as if you had full blown celiac disease. One cause may be that you are in the beginning stages of celiac disease and may not have sinificant damage yet. The other is that your body is obviously not assimilating wheat and you may simply have a wheat allergy not a gluten, you should have that checked.

Magdalena, ON, canada


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



Celiac.com Sponsor (A8-M):



Guest ~wAvE WeT sAnD~

Terri---

We need more Internists like yours in my area. I'm impressed that I've heard of one knowing what celiac disease is. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,247
    • Most Online (within 30 mins)
      7,748

    Jbamf8791
    Newest Member
    Jbamf8791
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
    • Scott Adams
      No, I would not say this at all. If you were diagnosed with celiac disease and were gluten-free for a while, you could have gone into remission. Everyone's body is different, and some celiacs may be able to get regular contamination and not end up with damaged villi and positive antibody tests, while others who ingest tiny amounts will relapse and have full blown symptoms and flattened villi.  Only a full gluten challenge would reveal where you are at this point. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Pablohoyasaxa
      Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 
    • knitty kitty
      I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.   I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to become more active and make more blisters.  I avoid kelp (nori, seaweed) and crustaceans,  eggs, dairy products, and iodized table salt.   Niacinamide and Nicotinic acid are water soluble and harmless.  I'd much rather take Niacin than Dapsone with scary side effects.  
×
×
  • Create New...