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. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.