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My Test Results Were Negative...

UpbeatPete

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UpbeatPete Explorer
UpbeatPete
Posted

Now what should I do? I thought for certain they would be positive. I am seeing the Dr. next week so I will get a copy of the results then.

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lynnelise Apprentice
lynnelise
Posted

False negatives are not that uncommon. If you think your symptoms sound gluten related then I would go on a strict gluten free diet for a few weeks and see if you feel better! I say trying the diet and seeing how your body responds is the real test!

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

If you do not plan to do any further testing then you can trial the diet to see if it relieves your symptoms. You may be in the 20-30% that test false negative or you may be gluten intolerant and not celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am one of the 20 to 30% that show a false negative on testing and it delayed my diagnosis by many painful years because no doctor told me to try the diet. Once you are done with testing do give the diet a shot. It won't hurt and it may be the answer to your issues. Do be strict and give it a bit of time.

gibberish093 Rookie
gibberish093
Posted

Now what should I do? I thought for certain they would be positive. I am seeing the Dr. next week so I will get a copy of the results then.

did you go gluten-free before the test was done? cause if you did then that could result in a false negative.

IrishHeart Veteran
IrishHeart
Posted

Sorry, Pete. I know you were hoping for confirmation. Like Ravenwood, I tested NEG and I was sick as a dog for years...a lot of us test NEG ...and there is growing evidence that the test is not reliable enough, especially if you are IGA deficient or if the lab messed up or, or, or.... My doctor thinks the percentage is higher than the estimated false neg of 20-30%. After all the people I have met on here and all I have read about people with gluten- induced illness, I have to wonder.

If you are not having any more tests, try the gluten-free diet. You have nothing to lose. I recall in your prior posts, you said you felt better without gluten, yes??

UpbeatPete Explorer
UpbeatPete
Posted
  • Author

Thanks everyone for the advice and support. Getting that news from the Doctor today was a let down.

But like you all said, I could very well be in the 20 to 30%.

I am seeing the Doctor who ordered the bloodtest on Tues for my monthly visit, after that I plan on going Gluten-free.

@gibberish093...no, I was still eating gluten. I hadn't suspected Celiac until recently when I started googling my symptoms and came across this board. The more research I did, the more a lot of you sounded like me. So as soon as I thought I had it, I called my doctor and he was quick to order the test.

@IrishHeart...honestly I have never went totally Gluten free, however, I notice my symptoms are much worse after I eat something that has a lot of Gluten. Flour taco Shell, Boneless Wings, Pizza, ect.

almost through finals!

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IrishHeart Veteran
IrishHeart
Posted

Thanks everyone for the advice and support. Getting that news from the Doctor today was a let down.

But like you all said, I could very well be in the 20 to 30%.

I am seeing the Doctor who ordered the bloodtest on Tues for my monthly visit, after that I plan on going Gluten-free.

@gibberish093...no, I was still eating gluten. I hadn't suspected Celiac until recently when I started googling my symptoms and came across this board. The more research I did, the more a lot of you sounded like me. So as soon as I thought I had it, I called my doctor and he was quick to order the test.

@IrishHeart...honestly I have never went totally Gluten free, however, I notice my symptoms are much worse after I eat something that has a lot of Gluten. Flour taco Shell, Boneless Wings, Pizza, ect.

almost through finals!

good luck with finals!--go easy on the gluten, it gobs up the brain ;)

deaja Rookie
deaja
Posted

I tested negative, but think I'm gluten intolerant. Today, after almost 2 weeks on a strict no-gluten diet, I had some. (I was at a rehearsal dinner so not many choices.) I figured it was just lightly breaded and better than the other options - oh my goodness. I think my body had gotten used to not being on gluten. Within literally 15 minutes (from 1 piece of slightly breaded chicken parm) I had thrown up twice and am as bloated as I was every night before I went on the gluten free 2 weeks ago.

I'd so go gluten free and see if that helps. Within one week (which is when I got the negative result), my symptoms were probably at about 30% of what they had been. Now, almost 2 weeks in, until tonight they were at maybe 10% of what they had been at. I'm just hoping this isn't too bad of a set-back. But it is also good motivation to stick with it as I think it's confirming that it is a gluten-problem.

IrishHeart Veteran
IrishHeart
Posted

I tested negative, but think I'm gluten intolerant. Today, after almost 2 weeks on a strict no-gluten diet, I had some. (I was at a rehearsal dinner so not many choices.) I figured it was just lightly breaded and better than the other options - oh my goodness. I think my body had gotten used to not being on gluten. Within literally 15 minutes (from 1 piece of slightly breaded chicken parm) I had thrown up twice and am as bloated as I was every night before I went on the gluten free 2 weeks ago.

I'd so go gluten free and see if that helps. Within one week (which is when I got the negative result), my symptoms were probably at about 30% of what they had been. Now, almost 2 weeks in, until tonight they were at maybe 10% of what they had been at. I'm just hoping this isn't too bad of a set-back. But it is also good motivation to stick with it as I think it's confirming that it is a gluten-problem.

Sure sounds like it!...that reaction is pretty much what many of us feel. Stick with the gluten-free diet and continue to feel well! ;)

P.S. I tested negative 3 times. Yet, I have the genes linked to gluten sensitivity and celiac...so much for tests... :huh:

LadyMac Newbie
LadyMac
Posted

I just tested negative too, so I too can relate to your disappointment. I've been gluten free for years and most of the symptoms went away for quite some time. Please do try the diet. Don't let the long lists of forbidden foods overwhelm you. It isn't as complicated as it looks. And, it is getting easier and easier to stick to the diet, due to more products hitting the shelves. The old supply and demand at work! I found Asian and Indian delis have very inexpensive flours like rice or fava bean...much cheaper than Red Mill.

Good luck!

Carol

  • 2 weeks later...
collgwg Contributor
collgwg
Posted

i just got my results as well and it was negitive my husband said good now you can eat normal now lol

not going to happen im sticking to gluten-free diet i have lost 25 lbs and i do not feel bloated i do not have diareah as much and i am feeling much better

im acutally scared to try gluten foods just to prove a point that my body can not handle it as you all know that the results are quite painful i see the dr next week and ill see what she wants to do from here if she wants me to go for further testing

i had to go to emerg due to a soy allgery yesterday and when i got the medication to calm it down i just left and i forgot my just us resuable cup so i go back today and she said did the dr give you your results of your celiac test i said no and she said well to test you have to be a 9 and im at a 5

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      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
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