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

I Am Confused And Looking For Opinions


jstopka

Recommended Posts

jstopka Newbie

Hi...

I had posted on here about three weeks ago about having a blood test that showed certain levels, along with a low vitamin D level, requesting that I get a biopsy to confirm if I have celiac.

Well, I got the biopsy and the results were negative, along with no anti-flamatory symptoms that come with celiac.

I spoke with my primary care physcian and he said that I should assume I have celiac due to the blood test and that the biopsy only takes a part of my intestine so he may have missed it.

So then I called the doc who did the biopsy and he said he believes I really don't have it....

so my wife and I are very confused....we have gone about for the past two weeks changing my diet and such, and don't know what to believe anymore.

Is the blood test more accurate than the biopsy, cuz everyone that I have spoken with said the biopsy is the best way to test for celiac.......is there any other explanations out there....I just don't know who to believe....

I want to do one more blood test which would mean going off the diet and hammering th wheat again to get a decent blood test, or should I just assume I have it.....

My wife and I have two contradicting reports and don't know what to think.......

If anyone has heard of a similar experience, or has any opinion that would be awesome!!!!!

thanks for your time

jeremy


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hi Jeremy,

I certainly understand your confusion. Consistency is new to the medical world regarding Celiac and it's associations.

I don't recall your blood work results, but if you doctor considered it positive, that in itself is a diagnoses. A biopsy can confirm that diagnoses or establish a diagnosis. Neither are as accurate as we would like at this time.

If your blood work was positive and you have a positive dietary result, I would remain on the diet and consider yourself to have a diagnoses of Celiac Disease. As your doctor mentioned, biopsies can be hit or miss.

Hope this was helpful.

jstopka Newbie
Hi Jeremy,

I certainly understand your confusion. Consistency is new to the medical world regarding Celiac and it's associations.

I don't recall your blood work results, but if you doctor considered it positive, that in itself is a diagnoses. A biopsy can confirm that diagnoses or establish a diagnosis. Neither are as accurate as we would like at this time.

If your blood work was positive and you have a positive dietary result, I would remain on the diet and consider yourself to have a diagnoses of Celiac Disease. As your doctor mentioned, biopsies can be hit or miss.

Hope this was helpful.

Yeah, either way I am prepared to deal with a new diet and all...here were my blood test results....

IGA, Serum 669H

Gladin Antibody IGA 38 H

Vitamin D 17L

where as my TTG Antibody, IGA was <3 which put me on the negative range for that part of the test

My doctor who saw the test said the low vitamin D was another indicator...so I am just wondering where to go from here......am I in the early stages so I should act accordingly, or should I just go back to the way I was and see what happens? I am just confused.......I hope those numbers made sense

thanks again to anyone who has an opinion on this

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,915
    • Most Online (within 30 mins)
      7,748

    marcusdarrell1
    Newest Member
    marcusdarrell1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.