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

My Test Results Were Negative...

UpbeatPete

Recommended Posts

UpbeatPete Explorer
UpbeatPete
Posted

Now what should I do? I thought for certain they would be positive. I am seeing the Dr. next week so I will get a copy of the results then.

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

Celiac.com Sponsor (A8-M):


lynnelise Apprentice
lynnelise
Posted

False negatives are not that uncommon. If you think your symptoms sound gluten related then I would go on a strict gluten free diet for a few weeks and see if you feel better! I say trying the diet and seeing how your body responds is the real test!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

If you do not plan to do any further testing then you can trial the diet to see if it relieves your symptoms. You may be in the 20-30% that test false negative or you may be gluten intolerant and not celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am one of the 20 to 30% that show a false negative on testing and it delayed my diagnosis by many painful years because no doctor told me to try the diet. Once you are done with testing do give the diet a shot. It won't hurt and it may be the answer to your issues. Do be strict and give it a bit of time.

gibberish093 Rookie
gibberish093
Posted

Now what should I do? I thought for certain they would be positive. I am seeing the Dr. next week so I will get a copy of the results then.

did you go gluten-free before the test was done? cause if you did then that could result in a false negative.

IrishHeart Veteran
IrishHeart
Posted

Sorry, Pete. I know you were hoping for confirmation. Like Ravenwood, I tested NEG and I was sick as a dog for years...a lot of us test NEG ...and there is growing evidence that the test is not reliable enough, especially if you are IGA deficient or if the lab messed up or, or, or.... My doctor thinks the percentage is higher than the estimated false neg of 20-30%. After all the people I have met on here and all I have read about people with gluten- induced illness, I have to wonder.

If you are not having any more tests, try the gluten-free diet. You have nothing to lose. I recall in your prior posts, you said you felt better without gluten, yes??

UpbeatPete Explorer
UpbeatPete
Posted
  • Author

Thanks everyone for the advice and support. Getting that news from the Doctor today was a let down.

But like you all said, I could very well be in the 20 to 30%.

I am seeing the Doctor who ordered the bloodtest on Tues for my monthly visit, after that I plan on going Gluten-free.

@gibberish093...no, I was still eating gluten. I hadn't suspected Celiac until recently when I started googling my symptoms and came across this board. The more research I did, the more a lot of you sounded like me. So as soon as I thought I had it, I called my doctor and he was quick to order the test.

@IrishHeart...honestly I have never went totally Gluten free, however, I notice my symptoms are much worse after I eat something that has a lot of Gluten. Flour taco Shell, Boneless Wings, Pizza, ect.

almost through finals!

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Thanks everyone for the advice and support. Getting that news from the Doctor today was a let down.

But like you all said, I could very well be in the 20 to 30%.

I am seeing the Doctor who ordered the bloodtest on Tues for my monthly visit, after that I plan on going Gluten-free.

@gibberish093...no, I was still eating gluten. I hadn't suspected Celiac until recently when I started googling my symptoms and came across this board. The more research I did, the more a lot of you sounded like me. So as soon as I thought I had it, I called my doctor and he was quick to order the test.

@IrishHeart...honestly I have never went totally Gluten free, however, I notice my symptoms are much worse after I eat something that has a lot of Gluten. Flour taco Shell, Boneless Wings, Pizza, ect.

almost through finals!

good luck with finals!--go easy on the gluten, it gobs up the brain ;)

deaja Rookie
deaja
Posted

I tested negative, but think I'm gluten intolerant. Today, after almost 2 weeks on a strict no-gluten diet, I had some. (I was at a rehearsal dinner so not many choices.) I figured it was just lightly breaded and better than the other options - oh my goodness. I think my body had gotten used to not being on gluten. Within literally 15 minutes (from 1 piece of slightly breaded chicken parm) I had thrown up twice and am as bloated as I was every night before I went on the gluten free 2 weeks ago.

I'd so go gluten free and see if that helps. Within one week (which is when I got the negative result), my symptoms were probably at about 30% of what they had been. Now, almost 2 weeks in, until tonight they were at maybe 10% of what they had been at. I'm just hoping this isn't too bad of a set-back. But it is also good motivation to stick with it as I think it's confirming that it is a gluten-problem.

IrishHeart Veteran
IrishHeart
Posted

I tested negative, but think I'm gluten intolerant. Today, after almost 2 weeks on a strict no-gluten diet, I had some. (I was at a rehearsal dinner so not many choices.) I figured it was just lightly breaded and better than the other options - oh my goodness. I think my body had gotten used to not being on gluten. Within literally 15 minutes (from 1 piece of slightly breaded chicken parm) I had thrown up twice and am as bloated as I was every night before I went on the gluten free 2 weeks ago.

I'd so go gluten free and see if that helps. Within one week (which is when I got the negative result), my symptoms were probably at about 30% of what they had been. Now, almost 2 weeks in, until tonight they were at maybe 10% of what they had been at. I'm just hoping this isn't too bad of a set-back. But it is also good motivation to stick with it as I think it's confirming that it is a gluten-problem.

Sure sounds like it!...that reaction is pretty much what many of us feel. Stick with the gluten-free diet and continue to feel well! ;)

P.S. I tested negative 3 times. Yet, I have the genes linked to gluten sensitivity and celiac...so much for tests... :huh:

LadyMac Newbie
LadyMac
Posted

I just tested negative too, so I too can relate to your disappointment. I've been gluten free for years and most of the symptoms went away for quite some time. Please do try the diet. Don't let the long lists of forbidden foods overwhelm you. It isn't as complicated as it looks. And, it is getting easier and easier to stick to the diet, due to more products hitting the shelves. The old supply and demand at work! I found Asian and Indian delis have very inexpensive flours like rice or fava bean...much cheaper than Red Mill.

Good luck!

Carol

  • 2 weeks later...
collgwg Contributor
collgwg
Posted

i just got my results as well and it was negitive my husband said good now you can eat normal now lol

not going to happen im sticking to gluten-free diet i have lost 25 lbs and i do not feel bloated i do not have diareah as much and i am feeling much better

im acutally scared to try gluten foods just to prove a point that my body can not handle it as you all know that the results are quite painful i see the dr next week and ill see what she wants to do from here if she wants me to go for further testing

i had to go to emerg due to a soy allgery yesterday and when i got the medication to calm it down i just left and i forgot my just us resuable cup so i go back today and she said did the dr give you your results of your celiac test i said no and she said well to test you have to be a 9 and im at a 5

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. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    2. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    3. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    4. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety

      This article, and the comments below it, may be helpful:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748
    Taraceliacmama
    Newest Member
    Taraceliacmama
    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

    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      Celiac attack confusion and anxiety

      By Scott Adams · Posted

      This article, and the comments below it, may be helpful:    
×
×
  • 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.