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

Celiac Blood Tests Were Negative

marissa088

Recommended Posts

marissa088 Newbie
marissa088
Posted

I got my blood work results in the mail yesterday. Everything that was tested was negative for Celiacs disease. I was happy, but also let down because I have no clue what is causing my problems. I am having chronic canker sores. I have three in my mouth right now. They are so painful that I just want to pull my hair out. I am still having chronic constipation that will turn into diarrhea and then go back to constipation.

I decided a few days ago to try to eliminate as much wheat from my diet. I usually eat a lot of pasta and/or bread because I like it, so it was weird not eating those things. Today when I woke up, I didn't feel fatigued like I usually do in the mornings. I'M NOT BLOATED! My stomach is actually flat. I weighed three pounds less than I usually do (probably water weight?) and I had a normal bowel movement this morning! I'm really happy except for the fact that I still have my canker sores.

So, I've read through other posts and found out there is a difference between gluten intolerance and celiacs disease. I'm wondering if I need allergy testing done to figure out if I'm gluten intolerant or just do the elimination diet and take the wait and see approach? I was also wondering if anybody else knows what can cause chronic canker sores that I should be tested for? So far I know it's not celiac or the herpes/cold sore virus.

Thanks!

Marissa

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

Celiac.com Sponsor (A8-M):


samcarter Contributor
samcarter
Posted
I got my blood work results in the mail yesterday. Everything that was tested was negative for Celiacs disease. I was happy, but also let down because I have no clue what is causing my problems. I am having chronic canker sores. I have three in my mouth right now. They are so painful that I just want to pull my hair out. I am still having chronic constipation that will turn into diarrhea and then go back to constipation.

I decided a few days ago to try to eliminate as much wheat from my diet. I usually eat a lot of pasta and/or bread because I like it, so it was weird not eating those things. Today when I woke up, I didn't feel fatigued like I usually do in the mornings. I'M NOT BLOATED! My stomach is actually flat. I weighed three pounds less than I usually do (probably water weight?) and I had a normal bowel movement this morning! I'm really happy except for the fact that I still have my canker sores.

So, I've read through other posts and found out there is a difference between gluten intolerance and celiacs disease. I'm wondering if I need allergy testing done to figure out if I'm gluten intolerant or just do the elimination diet and take the wait and see approach? I was also wondering if anybody else knows what can cause chronic canker sores that I should be tested for? So far I know it's not celiac or the herpes/cold sore virus.

Thanks!

Marissa

Marissa,

It is possible to have negative blood panels and still have celiac disease or gluten intolerance. I tested negative on EMA (the only test my dr had done) but I have responded positively so far to a dietary change. It sounds like you are having a positive response to diet, which could mean you either have celiac disease that the blood panels missed, or you are gluten intolerant.

An allergy testing for wheat will not determine whether you are gluten intolerant. Allergy to wheat is different from gluten intolerance. You could order stool testing from Enterolabs--these are said to be much more sensitive to gluten intolerance than the blood panels are--and you do not have to be eating gluten to have those done. Just do a Google for Enterolab. Many people on this forum have used enterolab after negative blood tests and found they were gluten intolerant.

As for the canker sores, I get those when I am low on Pantothenic Acid. It's a B vitamin, and if you have malabsorption due to gluten intolerance or celiac you can be low on that. You can buy supplements and take them--it has always worked for me. It still takes time for the sores to go away, but they go away faster for me when I take the Pantothenic Acid. Ask at a health food store.

marissa088 Newbie
marissa088
Posted
  • Author
Marissa,

It is possible to have negative blood panels and still have celiac disease or gluten intolerance. I tested negative on EMA (the only test my dr had done) but I have responded positively so far to a dietary change. It sounds like you are having a positive response to diet, which could mean you either have celiac disease that the blood panels missed, or you are gluten intolerant.

An allergy testing for wheat will not determine whether you are gluten intolerant. Allergy to wheat is different from gluten intolerance. You could order stool testing from Enterolabs--these are said to be much more sensitive to gluten intolerance than the blood panels are--and you do not have to be eating gluten to have those done. Just do a Google for Enterolab. Many people on this forum have used enterolab after negative blood tests and found they were gluten intolerant.

As for the canker sores, I get those when I am low on Pantothenic Acid. It's a B vitamin, and if you have malabsorption due to gluten intolerance or celiac you can be low on that. You can buy supplements and take them--it has always worked for me. It still takes time for the sores to go away, but they go away faster for me when I take the Pantothenic Acid. Ask at a health food store.

Thanks for responding. I had a stool sample done through my doctor's specific lab, I don't know the name offhand. I am waiting for those results. I will look into Enterolab though. I've never heard of Pantothenic Acid either. I will definitely look into this. Thanks!

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

marissa088- That sounds like my story. All of my tests have been negative yet I have had a very positive response to the gluten free diet. My advice is to do the diet. It is so worth it. I feel better than I have in years.

babysteps Contributor
babysteps
Posted
marissa088- That sounds like my story. All of my tests have been negative yet I have had a very positive response to the gluten free diet. My advice is to do the diet. It is so worth it. I feel better than I have in years.

Marissa 088 - I agree with Amyleigh. You know your body better than the testing lab :D

veggienft Rookie
veggienft
Posted

If ingesting gluten makes you feel bad then stop ingesting gluten. Your health depends on it.

If you need a name for that, it's called celiac disease.

..

Tim-n-VA Contributor
Tim-n-VA
Posted

I will disagree that an allergy test will not find gluten intolerance. It might just seem semantics but gluten intolerance is used in a lot of different ways, many times meaning "something bad happens when I eat gluten".

If all you want is to feel better - and that is a personal decision - and gluten makes you feel bad, stop eating it (as stated before). However, if you are one of those people who want to know what is going on in your body (i.e. auto-immune verus allergy versus digestive), it is terrible advice. There two to three threads per week on this board from people who cut out gluten on their own and are now trying (or thinking about) adding gluten back to get definitive tests.

Bottom line - decide what level of certainty you want from conventional medicine before you remove gluten. Either decision is correct and up to you. Most people report the most severe symptoms after consuming gluten after being gluten-free for a while.

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

Celiac.com Sponsor (A8-M):


nora-n Rookie
nora-n
Posted

But usually people with other genes than DQ2 or DQ8 do not manage to get an official diagnosis, although they may be even more sensitive to gluten than the DQ2 and DQ8, who mainly have the reactions in the intestines.

For instance DQ1 have more neurological symptoms, and others have more immunological problems and all kinds of gluten related dieseases, without showing the typical villi damage.

I wonder if it might be easier to do a gene test and only try to get a celiac diagnosis if the genes are DQ2 or 8.

i am aware of that there are a number of Dq1 and DQ7 and DQ9 that are officcially diagnosed, but someone posted here a couple of months ago that there are only six officially diagnosed DQ6 (= DQ1) celiacs out there in the U.S. There re a few in other countires too. But DQ1 is so common that the chances of an official diagnosis are small if the blood work is not highly positive.

A number of DQ1 have posted about all the improvements after going gluten-free, and Dr. Hasjivassiliou writes that 20% of his gluten ataxia patients are DQ1.

nora

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. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    2. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    3. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
    5. Scott Adams
      - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS). Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Your situation is a classic p...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748
    Dakota4
    Newest Member
    Dakota4
    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

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.