Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

What To Do? Neg Blood Test - Positive Symptoms


kel-kel

Recommended Posts

kel-kel Newbie

My daughter (8yo) had stomach aches, headaches, behavior issues, mental fog for about 2 years before we went gluten free - and with that all her symptoms improved dramatically - no more stomach or head aches, significantly improved behavior and mental processing. After this we went back on gluten, all symptoms returned. Had blood testing done, came back negative. I was still not convinced, took out gluten again - and again all symptoms gone. We have stayed gluten free for 18 months. My question is do I need to pursue further testing to see if positive for Celiac? Anyone else have negative results initially? Thanks:)kelkel


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



Celiac.com Sponsor (A8-M):



caek-is-a-lie Explorer

Yeah I did. My brother and niece were diagnosed w/biopsy in 1999 so I had a blood test. It was negative (as in, the results fell within the acceptable range. I don't know if I had any antibodies or no antibodies.) Just a couple years before, I had developed Narcolepsy. In 2002 I discovered that avoiding grains and sugars almost eliminated my symptoms but it wasn't until a few months ago that I went 100% gluten free. I stopped getting sick from food, stopped running to the bathroom 5 times/night and my mental fog has disappeared. I also discovered that my non-epileptic seizures I've had for 10 years were 100% triggered by gluten.

Maybe if I went back on it for a few months I'd test positive for Celiac, but I worry I'd end up in the hospital, so I just don't eat gluten and accept that gluten is definitely my problem. I wish I had just gone gluten-free 10 years ago. My life would have been so very different!

It might be difficult dealing with doctors...without a diagnosis I get interrogated by the intake nurses at my dr's office ("well, what HAPPENS when you eat gluten..." oh the skepticism) but I don't care what they think (most of the time.) I just take care of myself. If you're healthier avoiding gluten, don't eat it. But I know there are those that will disagree about the diagnosis thing, so I'm sure you'll get lots of great input here.

lizard00 Enthusiast
My daughter (8yo) had stomach aches, headaches, behavior issues, mental fog for about 2 years before we went gluten free - and with that all her symptoms improved dramatically - no more stomach or head aches, significantly improved behavior and mental processing. After this we went back on gluten, all symptoms returned. Had blood testing done, came back negative. I was still not convinced, took out gluten again - and again all symptoms gone. We have stayed gluten free for 18 months. My question is do I need to pursue further testing to see if positive for Celiac? Anyone else have negative results initially? Thanks:)kelkel

How long were you gluten-free before the testing? How long did you go back on gluten before you had the testing done? Once gluten is removed from the diet, it's very hard to get conclusive blood tests. The antibodies are only present when gluten is being consumed.

Welcome to the forum! :)

kel-kel Newbie
How long did were you gluten-free before the testing? How long did you back on gluten before you had the testing done? Once gluten is removed from the diet, it's very hard to get conclusive blood tests. The antibodies are only present when gluten is being consumed.

Welcome to the forum! :)

We had been off gluten for about 2 months then back on for atleast 3 weeks before testing. I don't know if that was back on long enough to have good test results or not. My thing is that I am keeping her gluten free because I know how it affects her. But I wonder if I need to know specifically if she has celiac for other medical reasons????

thanks

kel-kel Newbie

would the genetic testing for her be a good non-invasive indicator for her given my suspicions already??? kelkel

lizard00 Enthusiast

The genetic testing may help, but it in itself cannot diagnose her. The percentage of people who carry the gene is large compared to the number of people projected to actually develop the disease. But if she's having symptoms, has a positive dietary response, and is positive genetically, a doctor may be willing to go with that as a diagnosis. Mine did.

If her symptoms resolve on the gluten-free diet, then you pretty much have your answer. What sort of advice did your ped give you? If her symptoms do not remain resolved gluten-free, then it would be time to pursue other testing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,881
    • Most Online (within 30 mins)
      7,748

    Tam P
    Newest Member
    Tam P
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...