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Have Symptoms But Tested Negative?

Guinevere

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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?

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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.

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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.

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