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

2Nd Set Of Blood Results

KMMO320

Recommended Posts

KMMO320 Contributor
KMMO320
Posted

My dr did another set of blood tests last week after she got some confusing results the first time. According to my primary care physician's blood test, it looked like I had celiac but according to my GI's test, which she did through Prometheus, it came up negative. As in..the paper work had the word NEGATIVE FOR CELIAC on it. She didnt show me any levels..just the word NEGATIVE and she said See?? Negative!

So she drew more blood again..only this time, I had been gluten-free for over 3 weeks. She said oh that doesnt matter. She did a full panel plus a genetic test through Prometheus.

She called me again just now and said Just like I thought. NEGATIVE and this time it is 100%, without a doubt, Negative. You do not have celiac and do not to be gluten free. I said thats fine, great actually..but how do we explain how I feel? She said I dont know, but I have a follow up with you in September, so take your Vitamin D pills and Prilosec and I guarantee you will feel better.

I called back and talked to the secretary and she is mailing me all of my lab results.

I am just frustrated. Are there any other foods that cause the same exact symptoms when allergic/inolerant?

I really cant think of what else it can be. I feel like this only after I eat.

The first time I noticed it was after a pretzel, and again after pasta...a year ago and it has been getting worse ever since. A cracker, a BITE of a cracker...doesnt matter, sets me off. Headache, chills, aches, sinus pressure, runny nose, itchy eyes, stomach cramps, Diareah, irritability, hot flashes, fatigue, chronic ear infections.

I DONT GET IT!! She took a genetic test, so that should be the end of it right?

Ugh. well, when I get my results, I will post it. She seems very sure it is NOT Gluten that is causing me all this trouble and has no answer when I tell her how great I felt when I didnt eat it, but she INSISTS it is NOT because I stopped eating gluten.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

She seems very sure it is NOT Gluten that is causing me all this trouble and has no answer when I tell her how great I felt when I didnt eat it, but she INSISTS it is NOT because I stopped eating gluten.

Don't worry about what this doctor says. Listen to your body.

Takala Enthusiast
Takala
Posted

This means nothing without the actual numbers and ranges and genotypes.

And the testing is not 100% accurate, anyway.

Anybody who claims otherwise is mis- informed.

If you have a PCP with whom you've had test results indicating a gluten antibody reaction, work with them.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

They say 20-30% of Celiacs test negative in their blood work. There are additional genes that are Celiac besides DQ2 and DQ8 too, but the Dr.s are dismissing it. Many of us go unDXed because of it.

I guess I would ask for an endoscope to see "what's causing your distress" and maybe a SIBO breath test? Once you have those, go gluten-free for at least 3 months and see how you feel. Your body should tell you if it should be gluten-free.

KMMO320 Contributor
KMMO320
Posted
  • Author

I did have an endoscopy, she admits that once she saw my ulcers, she.assumed that was.what my problem.was. I was negative.for h.pylori though. She said she then.took A, as.in ONE,Sample of my small intestines.

squirmingitch Veteran
squirmingitch
Posted

She's an idiot. Dump her & get a new GI.

MitziG Enthusiast
MitziG
Posted

Your problem is gluten, whether you have celiac or not. You do not need her to acknowledge this, and you do not need a dx. Do what makes you feel better and don't worry about the rest!

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

Celiac.com Sponsor (A8-M):


roxieb73 Contributor
roxieb73
Posted

NEGATIVE and this time it is 100%, without a doubt, Negative.

This right here is why you need your labs!!! You were gluten free during the testing? OF COURSE IT IS GOING TO COME BACK NEGATIVE THIS TIME! The fact that she said "this time" it is without a doubt means last time there was doubt! You need those labs keep eating gluten free and post the results when you get them. I have a feeling someone isn't giving you the full picture.

KMMO320 Contributor
KMMO320
Posted
  • Author

They should be on their.way. She mailed.them yesterday and I only live 20 mins away so I expect them tomorrow, thursday the latest. my dr gave me a paper that said the endoscopy was negative...and under reason for.endoscope, it said

Archived

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

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


  • Member Statistics

    • Total Members
      132,004
    • Most Online (within 30 mins)
      7,748
    Daffodil
    Newest Member
    Daffodil
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Chances of being coeliac

      By Wheatwacked · Posted

      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Celiac getting dentures

      By captaincrab55 · Posted

      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Aretaeus Cappadocia · Posted

      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      Chances of being coeliac

      By trents · Posted

      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.