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
kel-kel
Posted

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
caek-is-a-lie
Posted

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
lizard00
Posted
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
kel-kel
Posted
  • Author
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
kel-kel
Posted
  • Author

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

lizard00 Enthusiast
lizard00
Posted

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.

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


  • Member Statistics

    • Total Members
      131,139
    • Most Online (within 30 mins)
      7,748
    Kristen Wolf
    Newest Member
    Kristen Wolf
    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

    • Jpate
      Refractory celiac disease

      By Jpate · Posted

      Has anyone had refractory celiac type 2 for very long I have had refractory celiac type 2 for 11 years now and consider myself lucky to be alive.   
    • Jenny (AZ via TX)
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Jenny (AZ via TX) · Posted

      Thank you both so much!
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Reading labels at dailymed.com is simpler if you’re familiar w/ gluten-free list of inert ingredients (aka ‘excipients’  allowed by FDA.      www.gluten-free.com has that list & I’ve included It’s below…. Tricky ones for me are the “4 D’s“ because names are similar. These 2 are gluten-free by ‘legal’ definition— •Dextrans - Partially hydrolyzed corn or potato starch. •Dextrose - Powdered corn starch. Other 2 need to be questioned. (Maybe ok for isolated 7-10 day Rx,   antibiotic?,  but gluten-free status needs to be verified for long term / daily use for chronic condition, like thyroid or BP meds.)   These are : •Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. •Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca.  (Maltodextrin on US labels MUST be corn so gluten-free.) Technically, ‘Starch’ on USDA ‘food’ labels in US must be from corn, & if not, the source must be identified.   In drugs,‘ Pregelatinized starch’ & ‘Sodium starch glycolate’ can also be from potato, rice, OR wheat.  Wheat is more likely to be found in products made outside of US (Europe) where corn is not the major(readily available & least costly) crop.     Hope this helps even though  learning sources of some gluten-free ones may make them less appealing. (And while the “Read every label, every time” for gluten is a pain, I’ve learned there are worse things than celiac dx—Allergy to corn would be at top on my list!)          Bev in Milwaukee From www.gluten-free.com EXCIPIENT INGREDIENTS IN MEDICATIONS  Aspartame - An artificial sweetening agent derived from aspartic acid. Aspartic Acid - A crystalline amino acid found naturally in sugar beets and sugar cane.  Benzyl alcohol - Made synthetically from benzyl chloride which is derived from toluene (a tar oil). Cellulose - (ethylcellulose, methylcellulose, hydroxymethylcellulose, hydroxypropyl, microcrystalline) – Obtained from fibrous plant material (woody pulp or chemical cotton). Cetyl alcohol - Derived from a fat source (spermaceti, which is a waxy substance from the head of the sperm whale). Croscarmellose sodium - An internally cross-linked sodium carboxymethylcellulose for use as a disintegrant in pharmaceutical formulations.  Comes from wood pulp or cotton fibers to form carboxymethylcellulose.  It contains no sugar or starch. Dextrans - Partially hydrolyzed corn or potato starch. Dextrates - Mix of sugars resulting from the controlled enzymatic hydrolysis of starch. Dextrins - Result from the hydrolysis of starch by heat or hydrochloric acid (from corn).  It can also be obtained from wheat, rice or tapioca. Dextrose - Powdered corn starch. Fructose - Obtained naturally from fruits or honey; hydrolyzed cane or beet sugar. Gelatin - Obtained from the skin, white connective and bones of animals (by boiling skin, tendons, ligaments, bones, etc with water). Glycerin - Historically, glycerin (also known as glycerol), was made the following ways: -  Saponification (a type of chemical process) of fats and oils in the manufacturing of soaps -  Hydrolysis of fats and oils through pressure and superheated steam -  Fermentation of beet sugar molasses in the presence of large amounts of sodium sulfite   Today its is made mostly from propylene (a petroleum product) Glycerols - Obtained from fats and oils as byproducts in the manufacture of soaps and fatty acids (may also be listed as mono-glycerides or di-glycerides). Glycols - Products of ethylene oxide gas. Hypromellose – A brand of hydroxypropyl methylcellulose (see cellulose). Iron oxide (rust) - Used as a coloring agent. Kaolin - A clay-like substance. Lactilol - Lactose derivative; a sugar alcohol. Lactose - Also known as milk sugar, is used in the pharmaceutical industry as a filler or binder for the manufacture of coated pills and tablets.   Commercially produced from cow's milk. Maltodextrins - A starch hydrolysate that is obtained from corn in the United States but can also be extracted from wheat, potato or rice. Mannitol - Derived from monosaccharides (glucose or mannose). Methyl Paraben – Comes from the combination of denatured wood alcohol and benzoic acid (benzoic acid occurs naturally in cherry bark, raspberries, tea, anise and cassia bark).  Polysorbates - Chemically altered sorbitol (a sugar alcohol). Polyvinyl alcohol – A water soluble synthetic alcohol (synthesized by hydrolysis of polyvinyl acetate). Povidone (crospovidone, copovidone) - synthetic polymers  Pregelatinized starch - A starch that has been chemically or mechanically processed.  The starch can come from corn, wheat, potato or tapioca. Shellac - A natural wax product used in tablet or capsule coating. Sodium lauryl sulfate – A derivative of the fatty acids of coconut oil. Sodium starch glycolate - Sodium salt of carboxymethyl ether of starch. Usually from potato but can be from corn, wheat or rice. Stearates (calcium, magnesium) - Derived from stearic acid (a fat; occurs as a glyceride in tallow and other animal fats and oils, as well as some vegetables; prepared synthetically by hydrogenation of cottonseed and other vegetable oils). Sucrose - Sugar also known as refined sugar, beet sugar or cane sugar. Titanium dioxide - Chemical not derived from any starch source used as a white pigment.  Triacetin – A derivative of glycerin (acetylation of glycerol). Silcon dioxide – A dispersing agent made from silicon.  
    • NoriTori
      Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems

      By NoriTori · Posted

      @Scott Adams  Sure, Any and all information is welcome. Also the only was to convince my family to get tested is to get tested myself and conclusive answers. Very stubborn lot.  
    • trents
      Blood results

      By trents · Posted

      Understood. It's very anxiety-provoking when you don't know what you are dealing with and don't know if you are attacking it correctly.
×
×
  • Create New...