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

Have Symptoms But Tested Negative?

Guinevere

Recommended Posts

Guinevere Newbie
Guinevere
Posted

Two years ago, I was tested through endoscopic and blood work for celiac disease. At the time of testing I had been gluten free for a year. Both the endoscopic and blood work came out negative. However, I have very strong reactions to gluten. In fact, it is my third day in a row of intense headaches, stomach ache, nauseau, brain fog and fatigue after accidental consumption of product that contained soy sauce. After my endoscopic procedure my Dr. said I had dysbiosis and that I should simply take probiotics (which I do take). WOW! If only my body agreed with what the tests and the Dr. said. I'm confused, is it common to test negative when symptoms are so positive?

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

Celiac.com Sponsor (A8-M):


Mme Newbie
Mme
Posted
If only my body agreed with what the tests and the Dr. said. I'm confused, is it common to test negative when symptoms are so positive?

The short answer is yes. I'm still new to all this, so I can't give you a nuanced answer as to why all the the tests can be wrong. What I do know is that they can give false negatives and do. All of them. There seem to be a lot of people here who had to make the decision at some point, for themselves or their children, to follow their symptoms and family histories and not their tests and doctors. Which doesn't mean tests are useless, but that they are perhaps best used to confirm celiac, not rule it out. So listen to your symptoms, eat accordingly, and take good care of yourself :)

CarlaB Enthusiast
CarlaB
Posted

If you were gluten free for a year, your intestines could have healed enough before you were tested that you didn't show damage. I had this same issue, and got tested by Enterolab. I can't claim to have celiac since technically they didn't find visible damage to my intestine and I have never had the rash/blisters I get biopsied, but I do know from Enterolab that I am gluten sensitive ... not that I needed them to tell me ...

kabowman Explorer
kabowman
Posted

My GI told me that gluten-free for 3 months could show no damage (depending on how bad it was to start with I guess). Either way, no gluten for me (among other things).

gluten-free is the only lifestyle for me!!!

I also wonder about my youngest son - it takes him a full week to recover from any stomach issues and he is lactose intolerant but not tested for celiac disease yet. My oldest tested negative per his doc who recognized the possibility immediately from my issues.

Guest nini
Guest nini
Posted

especially if you were gluten free for a year prior to your tests your results would be skewed. positive dietary response is the best diagnostic indicator there is. If your body reacts to gluten, you do not need any other confirmation. listen to your body and stay away from gluten.

even if it's not Celiac, gluten intolerance is linked to sooooo many other health issues and if you can alleviate the symptoms by being gluten free, then do it. you do not need a Dr.s permission to be gluten-free.

probiotics and digestive enzymes are recommended for all Celiac patients as they help with digestion in an already compromised digestive system. You may need to find a brand that agrees with you.

I use Isotonix by Market America, they have a digestive enzyme supplement with probiotics, it is a powder that you mix with water and drink daily.

loraleena Contributor
loraleena
Posted

HI, I agree with everyone else. You tested neg. because you have been gluten free. Hey check out the e-mail I sent back to you about candida and threelac!

tarnalberry Community Regular
tarnalberry
Posted

You cannot test positive unless you are consuming gluten. The tests look for antibodies - reactions to gluten. If there is no gluten entering your system, there is no reaction. If there is no reaction to see, nothing will appear on the test. You must be consuming gluten (for adults) at a rate of the equivalent of three slices of bread a day for three months for a reasonable chance at accurate results off of blood tests.

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

Celiac.com Sponsor (A8-M):


Guinevere Newbie
Guinevere
Posted
  • Author
You cannot test positive unless you are consuming gluten. The tests look for antibodies - reactions to gluten. If there is no gluten entering your system, there is no reaction. If there is no reaction to see, nothing will appear on the test. You must be consuming gluten (for adults) at a rate of the equivalent of three slices of bread a day for three months for a reasonable chance at accurate results off of blood tests.

===========================

thank you for the response. do you mind if i ask how you came by your information? there is no way that i can consume gluten, even once, to test for antibodies as it makes me miserably sick for about a week! not sure how i can legitimize this. will see dr nxt week.

Gillian Newbie
Gillian
Posted
===========================

thank you for the response. do you mind if i ask how you came by your information? there is no way that i can consume gluten, even once, to test for antibodies as it makes me miserably sick for about a week! not sure how i can legitimize this. will see dr nxt week.

If you test positive - on either test - then the final confirmation of celiac is that you respond to a gluten-free diet. So the response is the basis for the final diagnosis. Stick to your guns. Why should you make yourself sick just to please your doctor?

mommida Enthusiast
mommida
Posted

I went gluten free before testing because the doctor assured me that would be fine. (IDIOT doctor!!)

I can't eat gluten without getting sick too. I decided the gluten challenge for testing is just not worth it. Trust your body on this.

L.

manxasthehills Newbie
manxasthehills
Posted
===========================

there is no way that i can consume gluten, even once, to test for antibodies as it makes me miserably sick for about a week! not sure how i can legitimize this. will see dr nxt week.

My son ( age 11) only had an marginal blood results as by the time the Drs could fit him in for blood test we had stopped the gluten for 3 days, and Drs insisted that he wasn't celiac,since then all bloods have been normal,

however, he has now seen a paedeitrician in the uk, and she is happy that it is celiac, as he has grown & gained weight, since we stopped the gluten: recently they have wanted to feed him gluten for 3 months and do a biopsy, but we have stuck to our guns and said no, as he will never put gluten in his body again either, think he would take us to court if we even tried to feed him gluten, so I think as long as you feel well, and feel you are improving, then I would stick to the gluten free diet, after a year gluten free it could take weeks of eating gluten till it shows the blood result you need <_< )

Guinevere Newbie
Guinevere
Posted
  • Author
If you test positive - on either test - then the final confirmation of celiac is that you respond to a gluten-free diet. So the response is the basis for the final diagnosis. Stick to your guns. Why should you make yourself sick just to please your doctor?

==============================================

i would NOT sacrifice myself for a gluten test. my understanding is that there are other tests one can take without having to undergo gluten exposure. i am looking into the matter.

thank you for your support and input. it is much appreciated.

Guest nini
Guest nini
Posted
==============================================

i would NOT sacrifice myself for a gluten test. my understanding is that there are other tests one can take without having to undergo gluten exposure. i am looking into the matter.

thank you for your support and input. it is much appreciated.

if you HAVE to have some sort of dx on paper, then Enterolab would be the way to go, but why? You already have your answer. You know that gluten makes you sick, and that off of gluten you are better... stick to your gut instinct (pun intended) on this one and just stay gluten free and know that you are better for it.

Guinevere Newbie
Guinevere
Posted
  • Author
if you HAVE to have some sort of dx on paper, then Enterolab would be the way to go, but why? You already have your answer. You know that gluten makes you sick, and that off of gluten you are better... stick to your gut instinct (pun intended) on this one and just stay gluten free and know that you are better for it.

=======================================

its a rather long story - that coincides with my rather extensive medical history. i don't need the diagnosis form my records, i want it for all of the Dr's i work with and at present, i am in the midst of filing for SS due to the severity of my arthritis - which i have had for 27 years. i am not able to tolerate NSAID's nor the newer meds out there - and celiac disease (grossly underdiagnosed, including its myriad of related health diseases) has contributed to the present status of my gut.

i also want it for a rather stubborn set of minds in my family who will be more inclined to look into their own health issues more openly. also, my children feel unwilling to partake in a gluten-free diet (they exhibit some symptoms) unless they test positive. i am unwilling to wait until they are sick and regretful, and yet because they're teenagers, they still feel invincable.

albeit said, the test will be worth it in many ways.

thank you for asking.

Archived

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

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


  • Member Statistics

    • Total Members
      131,552
    • Most Online (within 30 mins)
      7,748
    judytay080
    Newest Member
    judytay080
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.