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2Nd Set Of Blood Results

KMMO320

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KMMO320 Contributor
KMMO320
Posted

My dr did another set of blood tests last week after she got some confusing results the first time. According to my primary care physician's blood test, it looked like I had celiac but according to my GI's test, which she did through Prometheus, it came up negative. As in..the paper work had the word NEGATIVE FOR CELIAC on it. She didnt show me any levels..just the word NEGATIVE and she said See?? Negative!

So she drew more blood again..only this time, I had been gluten-free for over 3 weeks. She said oh that doesnt matter. She did a full panel plus a genetic test through Prometheus.

She called me again just now and said Just like I thought. NEGATIVE and this time it is 100%, without a doubt, Negative. You do not have celiac and do not to be gluten free. I said thats fine, great actually..but how do we explain how I feel? She said I dont know, but I have a follow up with you in September, so take your Vitamin D pills and Prilosec and I guarantee you will feel better.

I called back and talked to the secretary and she is mailing me all of my lab results.

I am just frustrated. Are there any other foods that cause the same exact symptoms when allergic/inolerant?

I really cant think of what else it can be. I feel like this only after I eat.

The first time I noticed it was after a pretzel, and again after pasta...a year ago and it has been getting worse ever since. A cracker, a BITE of a cracker...doesnt matter, sets me off. Headache, chills, aches, sinus pressure, runny nose, itchy eyes, stomach cramps, Diareah, irritability, hot flashes, fatigue, chronic ear infections.

I DONT GET IT!! She took a genetic test, so that should be the end of it right?

Ugh. well, when I get my results, I will post it. She seems very sure it is NOT Gluten that is causing me all this trouble and has no answer when I tell her how great I felt when I didnt eat it, but she INSISTS it is NOT because I stopped eating gluten.

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ravenwoodglass Mentor
ravenwoodglass
Posted

She seems very sure it is NOT Gluten that is causing me all this trouble and has no answer when I tell her how great I felt when I didnt eat it, but she INSISTS it is NOT because I stopped eating gluten.

Don't worry about what this doctor says. Listen to your body.

Takala Enthusiast
Takala
Posted

This means nothing without the actual numbers and ranges and genotypes.

And the testing is not 100% accurate, anyway.

Anybody who claims otherwise is mis- informed.

If you have a PCP with whom you've had test results indicating a gluten antibody reaction, work with them.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

They say 20-30% of Celiacs test negative in their blood work. There are additional genes that are Celiac besides DQ2 and DQ8 too, but the Dr.s are dismissing it. Many of us go unDXed because of it.

I guess I would ask for an endoscope to see "what's causing your distress" and maybe a SIBO breath test? Once you have those, go gluten-free for at least 3 months and see how you feel. Your body should tell you if it should be gluten-free.

KMMO320 Contributor
KMMO320
Posted
  • Author

I did have an endoscopy, she admits that once she saw my ulcers, she.assumed that was.what my problem.was. I was negative.for h.pylori though. She said she then.took A, as.in ONE,Sample of my small intestines.

squirmingitch Veteran
squirmingitch
Posted

She's an idiot. Dump her & get a new GI.

MitziG Enthusiast
MitziG
Posted

Your problem is gluten, whether you have celiac or not. You do not need her to acknowledge this, and you do not need a dx. Do what makes you feel better and don't worry about the rest!

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roxieb73 Contributor
roxieb73
Posted

NEGATIVE and this time it is 100%, without a doubt, Negative.

This right here is why you need your labs!!! You were gluten free during the testing? OF COURSE IT IS GOING TO COME BACK NEGATIVE THIS TIME! The fact that she said "this time" it is without a doubt means last time there was doubt! You need those labs keep eating gluten free and post the results when you get them. I have a feeling someone isn't giving you the full picture.

KMMO320 Contributor
KMMO320
Posted
  • Author

They should be on their.way. She mailed.them yesterday and I only live 20 mins away so I expect them tomorrow, thursday the latest. my dr gave me a paper that said the endoscopy was negative...and under reason for.endoscope, it said

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