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

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

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

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

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

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

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

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

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

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

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

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

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.

  • 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. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    4. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    5. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.