New-Negative Test Results-Confused

[taf]

Hi! I'm new here & have lots of questions. I am trying to find out if i have celiacs. My sister was diagnosed with the disease ~ 2 years ago & i seem to have a lot of the symptoms, but i just got my blood results back today for the celiac profile & i was told everything was normal. What is a false negative? Could that have happened with my tests? How does one get a false negative reading? These are my test results:

Tissue Transglutamine Antibody, IGA <3

Immunoglobulin A 266

Gliadin Antibody (IGA) <3

I have no idea what those mean, all i was told by the receptionist who asked the doctor, is that they are in the normal range.

Below are my symptoms in no particular order. I do not have all of these symptoms at the same time but as i searched the internet for symptoms, these are the ones that i have had over the years. I've never made a big deal out of them, just kinda lived with 'em & didn't think too much of em. When i saw them on lists i started to realize i might be on to something. My medical records list me as having IBS. My grandfather had some sort of digestive problem & i think he eventually had part of his colon removed. I need to look into that more to get details.

Irritable bowel syndrome (IBS);Bloating; Gas; Abdominal pain; Borborygmi (stomach rumbling); Nausea; Constipation; Loose stools; Pale, frothy, foul-smelling, voluminous stools that float in the water; Candida overgrowth?; Low weight; Hair loss; Leg cramps; Vertigo-dizziness; Headaches; Sinus infections, sinusitis; Low blood sugar?; Loss of energy; Tired feeling; Inability to concentrate; Mental fog; Feeling spacey, not there, not real; Memory problems; Shaky, unsteady, uncontrolled handwriting; Sleep disturbances; Depression; Seasonal Affective Disorder; Loss of interest in life; Fuzzy vision; B vitamin deficiency?; Irritability; Head tremors/jerky head movements; Cold hands & feet; Numbness on back of thighs; Decreased foot padding; Burning feet; Cracks in corners of mouth; Mouth ulcers/sores/pointy projections; Bruise easily

I was on a candida diet, which basically was a gluten free diet, for maybe 2 months or so early last summer, but i eventually slipped off it as we vacationed this summer. I got past the detox stage on that diet & was feeling probably the best i've ever felt in my entire life (full of energy, had interest in life & people, had motivation to do things, had a positive outlook on life & felt confident). Apparently slipping back into old eating patterns seemed to catch up with me & in Dec. i had a sinus infection that left me feeling very dizzy, with headaches & lethargy. CT revealed nothing abnormal. I started thinking my gut had something to do with the sinuses & the dizziness, & that's when my sister urged me to get the blood tests for celiac.

Where do i go from here? I was certain the blood work would come back positive. I thought i had consistently been eating gluten for at least 3 months since the candida diet, but maybe not enough to trigger a positive blood test? I'm a pretty healthy eater anyway, so maybe i didn't ingest enough gluten. Who knows? What should i do? I've been making a conscious effort the last few weeks to continue to eat gluten in case i needed more tests. Today i ate a turkey sandwich on 'normal' bread (contained sprouted wheat berries, wheat gluten, millet, cracked wheat, oats, rye & other ingredients) & within 1 hour i was feeling exhausted. Do people with celiac normally have a reaction within an hour?

It's not that i want to have celiac. I tend to downplay things & push 'em aside. But if i am dealing with celiac i'd like to know, for my sake as well as that of my daughters, who also have different symptoms that seem to fit the profile--& i want to know for my future generations. So what do i do at this point?

Thank you in advance for your replies. You all seem like a very helpful community!

[Wolicki]

your doc did not run the full panel of tests for one thing, and tests are frequently false negative.

You probably have either Celiac or gluten intolerance, either way the fix is a strict gluten free diet.

Do you need a "diagnosis" in order to stick to the diet? If so, more power to you, but you have to eat the equivalent of 3 slices of bread a day for three months is what I have heard for an endoscopy to be conclusive. And if it's gluten intolerance, a biopsy would be negative anyway.

I think you will find consensus here that you should try a very strict trial of the diet, and see if you have results. Good luck with whatever you decide. I felt better within 3 days!

[GlutenFreeinSD]

Going through this same issue ourselves. There are allot of non-celiac conditions that manifest as celiac. Regardless, your doc should have run a full panel of tests on you. blood tests are one thing, but a specialist needs to look at biopsy too. These will frequently come back as negative because they are only a tissue sample and this can miss areas of disease. Regardless, have you tried a gluten free diet? If you feel better, that is pretty good evidence in my book. Don't worry about a drop in antibody response causing a false negative test result. Most patients will be strongly antibody positive for months after stopping gluten. Good luck.

[taf]

your doc did not run the full panel of tests for one thing, and tests are frequently false negative.

You probably have either Celiac or gluten intolerance, either way the fix is a strict gluten free diet.

Do you need a "diagnosis" in order to stick to the diet? If so, more power to you, but you have to eat the equivalent of 3 slices of bread a day for three months is what I have heard for an endoscopy to be conclusive. And if it's gluten intolerance, a biopsy would be negative anyway.

I think you will find consensus here that you should try a very strict trial of the diet, and see if you have results. Good luck with whatever you decide. I felt better within 3 days!

Could you tell me what the full panel of tests are? My doctor had written on the script 'celiac disease panel'. Maybe he doesn't even know what all he should have ordered. Should i go back & request the full panel?

Somewhere along the line in my reading i came across some type of blood test called tTG ELISA. What is that? Should i request that? I thought i remembered it was more accurate and/or less subject to human interpretation (error).

Am i correct in understanding that a false negative means that even tho the result was negative that may not be the case--the person may have celiac anyway?

Is there a single test that can be done that conclusively determines if one has celiac? As i explained, i want to have a diagnosis b/c then i know whether or not to pursue testing for my daughters who are both out of state in college. And they will know if they need to be alert for celiac in their future children.

What is the test that i've seen people refer to performed by Enteron Labs? Is that a definitive test?

What is the difference between gluten intolerance, gluten sensitivity & celiac? Does one lead to another? I am just learning about celiac & gluten, & with my brain being foggy lately it's not all sticking at the moment. Thanks for your help.

[nora-n]

the tests are quite negative, but yuou were gluten free for a while (and healed) and you obviously were not long enough back on gluten, nor had enough gluten to make the tests go positive.

The cutoff of these tests is set quite high, som you need a lot of gut damage before the tests are supposed to go positive.

Maybe get a private test done at enterolab? It will not diagnose celiac, but gluten sensitivity.

Othewise you need to eat a lot more gluten for some more weeks and get retested.

Or, get some more tests in about a month, (since you did poorly after your sinus condition and it takes a while before the antibodies rise, illnesses typically trigger such things but here with gluten and celiac it takes time before the tests will go positive)

Maybe get the tissue transglutaminase IgG and antigliadin IgG test done too.

The antigliadin IgG is very useful for gluten intolerance (the gluten spectrum is much bigger than just celiac)

If the tests are negative next time too, I think you should just go gluten free since you did try the diet and you got well. That was the proof.