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

Blood Tests

cookiequeen

Recommended Posts

cookiequeen Apprentice
cookiequeen
Posted

Is it possible to have a negative blood test but still have celiac?

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

Celiac.com Sponsor (A8-M):


elye Community Regular
elye
Posted

Oh, yeah. Many of us on here have had "negative" blood panels, and even "negative" biopsies, only to try the gluten-free diet and become well............ :)

cookiequeen Apprentice
cookiequeen
Posted
  • Author

That's what I figured. The Dr (his nurse practitioner, actually <_< ), insisted that my symptoms was just due to poor diet and constipation management. She told me to eat activia daily (which I'm getting sick of), take a stool softener daily, miralax or maalox daily, fiber, and plenty of water. That's been making me feel almost just as bad because now I feel like I'm going to poop my pants all the time :blink: . I was already following a vegetarian diet, exercising, and trying to keep up with my fluids.

I started eating gluten free the day after they drew blood and the bloating started to improve by that weekend. I don't think the nurse thinks that I could have celiac's at all. She said that she would be willing to run more tests if I had steatorrhea. I did have greasy diarrhea for about a week 3 yrs ago. And since then my stomach hasn't been the same. I cut out dairy and increased my fiber intake for months, with no relief. At this point I am so sick of feeling bad all the time.

All I know is that 3 yrs of constipation, bloating, gas, cramping, off-and-on depression, fluid retention, and recurrent stomach distention is not normal at all. I'm 24 for goodness sakes!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Yes! I believe I am a perfect example of that. My blood test was negative but I have had the classic symptoms of Celiac most of my life. Plus, my son has Celiac. My allergist said that people get false negatives all the time. I feel 100% better since going gluten free.

lizard00 Enthusiast
lizard00
Posted
That's what I figured. The Dr (his nurse practitioner, actually <_< ), insisted that my symptoms was just due to poor diet and constipation management. She told me to eat activia daily (which I'm getting sick of), take a stool softener daily, miralax or maalox daily, fiber, and plenty of water. That's been making me feel almost just as bad because now I feel like I'm going to poop my pants all the time :blink: . I was already following a vegetarian diet, exercising, and trying to keep up with my fluids.

First of all, welcome to the board!!!

Second, you need another Dr or nurse practitioner. They're treating the symptoms only, which is sadly very common. Daily stool softeners and laxatives will make your body dependent on them... you think you can't go now, keep that up for a while and you'll never be able to go on your own.

Take some probiotics. They're about 10x better than any yogurt you'll find, without all the added sugar and whoever knows what else. You can find them at any health food store, whole foods, or even in most pharmacies. I use Align, but there are many, many different brands.

I started eating gluten free the day after they drew blood and the bloating started to improve by that weekend. I don't think the nurse thinks that I could have celiac's at all. She said that she would be willing to run more tests if I had steatorrhea. I did have greasy diarrhea for about a week 3 yrs ago. And since then my stomach hasn't been the same. I cut out dairy and increased my fiber intake for months, with no relief. At this point I am so sick of feeling bad all the time.

If you feel better, and continue to improve, you have found your answer. Do you have a family history of Celiac?

Do you have your test results? Post them on here, lots of us have found out things because we insisted on physically seeing our results. If I had never have looked, who knows where I would be. My blood work was negative, too.

All I know is that 3 yrs of constipation, bloating, gas, cramping, off-and-on depression, fluid retention, and recurrent stomach distention is not normal at all. I'm 24 for goodness sakes!

No, it's not. And I hope that you continue to search for the answer. You will find the answer, sometimes it just takes a little longer than we want. B)

Feel free to ask any questions, we are all here to help and most of us have been where you are right now.

Take care!

cookiequeen Apprentice
cookiequeen
Posted
  • Author

Yeah, I think I'll give up the Maalox. Who wants to keep that up :P ?! Yuck! I'll have to get a copy of the test result. It's supposed to be a "comprehensive" test. Should I expect all of the results to be negative or should at least one be positive? I think I'll hunt down another doctor too.

No family history here, that I know of. I'm the only one with GI problems. I'm also the only one with eczema, and my nails have turned weird, and I've had pitting edema in my foot that my normal dr couldn't explain.

Archived

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

Go to topic listing

  • 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. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    2. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    3. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,095
    • Most Online (within 30 mins)
      7,748
    Will Smart
    Newest Member
    Will Smart
    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

    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
×
×
  • 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.