Depressed--tests Came Back Negative

[samcarter]

The doctor just called (and I hate how fast he talks--like he can't discuss anything). He just said, "Sprue was negative, everything else looks good." No anemia, no EMA results. I had to call back to ask them to hve a copy of the blood test results at the front for me or my husband to pick up. They won't even mail them. Grr.

I *feel* better without eating bread and pasta. I am waking up without feeling hungover and actually am waking up before my alarm, which never used to happen. I used to sleep in till nearly 9, if I was allowed, and all my life had a hard time waking up. Never felt rested. Now I feel rested. I'm regular for the first time in weeks.

When I read through associated problems with celiac, I have some of them. My family has some of them.

But without a blood test to verify this, I feel like a kook. I feel like I'm just going to be putting myself and my family through unneccessary bother unless I can say truthfully, I'm a celiac. Without a diagnosis I'm just a health nut.

[leadmeastray88]

The doctor just called (and I hate how fast he talks--like he can't discuss anything). He just said, "Sprue was negative, everything else looks good." No anemia, no EMA results. I had to call back to ask them to hve a copy of the blood test results at the front for me or my husband to pick up. They won't even mail them. Grr.

I *feel* better without eating bread and pasta. I am waking up without feeling hungover and actually am waking up before my alarm, which never used to happen. I used to sleep in till nearly 9, if I was allowed, and all my life had a hard time waking up. Never felt rested. Now I feel rested. I'm regular for the first time in weeks.

When I read through associated problems with celiac, I have some of them. My family has some of them.

But without a blood test to verify this, I feel like a kook. I feel like I'm just going to be putting myself and my family through unneccessary bother unless I can say truthfully, I'm a celiac. Without a diagnosis I'm just a health nut.

Hi there,

I definitely can relate. I had the same thing happen to me. I had the bloodwork done and it all came back negative, yet I feel so much better off gluten.

Something you have to keep in mind though is that diagnosis by bloodwork is not always reliable. My cousin who is now 14 was diagnosed with Celiac by biopsy when she was 9, and she had negative bloodwork. So any negative test is never really definitive.

If staying off gluten makes you feel better, you have your answer. You don't need to prove to anyone else that there's a valid medical reason for it, because you may never get one no matter how many tests you run.

Just know you're not alone

-Kim

[ShayFL]

You can get a "second opinion" by testing with Enterolab. Get the genetic tests too.

[samcarter]

You can get a "second opinion" by testing with Enterolab. Get the genetic tests too.

When I have the money for it, I will be ordering that series. Do you have to be on a gluten-filled diet to test with Enterolab, or can you stay gluten-free?

[ohsotired]

When you pick up your printed copies of your lab results, look at them - I mean go over them with a fine tooth comb.

My Celiac Panel came back negative, and then I discovered that they only ran one blood test, not all five.

They also said everything else was normal - and in reality it wasn't. Test results indicated possible B12/Folic Acid deficencies. So we'll be chatting about that at my follow up.

I'm just saying, make sure the doctor's office ordered everything they were supposed to.

I understand how you feel, believe me. But like Kim said, the blood work (biopsies too) isn't always reliable. A positive test confirms that you have Celiac, but negative tests can't rule it out. If the diet is working for you, then the heck with an 'official' diagnosis - you have your answer.

[leadmeastray88]

When I have the money for it, I will be ordering that series. Do you have to be on a gluten-filled diet to test with Enterolab, or can you stay gluten-free?

Thats the best part - you can be gluten free when you do the test. I was gluten free for a week when I did mine. They say that its still reliable for up to a couple years after you cut it out.

[ginnym]

You can also be gluten intolerant without it being coeliac (although some people think it's the early signs of coeliac). My tests are negative for coeliac but the transformation on a gluten-free diet has been amazing. I got "glutened" at the weekend which brought on 3 days of nausea and and 36 hours of abdominal pain. That's all the proof I need that a gluten-free diet is how I must live my life.

Like you, I'm frustrated at not having a name to put to my problem but don't let the docs say (as they did to me) that if it's not coeliac, it can't be gluten. I'm seeing a new consultant on Thursday so I hope for some good advice this time.

[tinkonthebrink]

But without a blood test to verify this, I feel like a kook. I feel like I'm just going to be putting myself and my family through unneccessary bother unless I can say truthfully, I'm a celiac. Without a diagnosis I'm just a health nut.

First of all, the blood tests are not always definitive. But more than that, why do you feel badly about recognizing that a food doesn't work for you and then avoiding it? You don't need a label to be justified in taking care of yourself. Instead of saying, "I think maybe I might have Celiac disease but my doctor doesn't think so...", just say "I don't eat wheat or gluten. I get sick when I eat them." And then don't eat them. If you want confirmation, do a challenge later on and if you react to gluten after avoiding it for awhile you have your answer.

You're entitled to take care of yourself and if that makes you a health nut, well, there are lots of worse kinds of nuttiness.

[Amyleigh0007]

Oh my gosh! You need to find my topic "Does Anyone Else Feel This Way" in the Coping With section. I feel the same way! My tests were negative but have had an awesome response from the diet. I think because I don't have an "offical" dx that people will think I'm being difficult or nutty. Everyone on the forum that responded gave me wonderful advice.

[aorona]

If you feel better without gluten, then why still eat it? Two of my sisters decided to go gluten free, one without being tested and one with a negative test result. They both feel so much better and will never go back to gluten eating again. Test results are not always 100% accurate, you should not hold them to such gold standards that the western world believes. If I were you do a gluten challenge for 1 or 2 months before you decide you are going to go gluten free for the rest of your life.

[Fiddle-Faddle]

When you pick up your printed copies of your lab results, look at them - I mean go over them with a fine tooth comb.

Definitely good advice--my dermatologist (who ran the blood work) told me my tests were normal, and at my request forwarded the results to my endocrinologist--who took one look at the blood work and said, "this says you have celiac." And there, clear as day, it said, "IgG--64" (where normal was defined as 0-16).

But even if all your tests are normal--it's BLOODWORK. You are living real life, not numbers on a paper determined by a computer run by someone who may have run the wrong sample, or the wrong test, or you might not have been eating gluten at the time of the test, or all kinds of other things might have gone wrong. But the diet and our response to it is the most reliable test there is for most if not all of us.

[samcarter]

Thanks for all the input, guys. For now I am staying on a gluten-free diet as best I can and feel better than I have in a while, that's for sure. Actually, when I told my husband that I thought wheat was making me sick, and I wanted to go get tested, he said, "Why don't we just go with what we know, why do we need a doctor?" I said that I wanted to know about celiac in particular because our kids could be at risk.

I will be picking my labwork results up as soon as I can (SAHM and don't get out much during the week), and will be looking them over. In the meantime I'm staying gluten free and keeping an eye on myself.

[Ginsou]

I hear what you are saying...and feeling. After being sick for 4 months and in a lot of pain 24/7, I went to a gastro nurse practioner who thought I had celiac. She told me right from the beginning that blood tests are not guaranteed. I had the blood tests done for celiac and h.pylori. I was stunned when they came back negative! And depressed! I had no insurance and knew I had to find the money to have Enterolab tests done. Results were positive--double genes.... just about everything was positive including casein and soy. Recent blood tests also show potatoes, chicken, eggs, corn, peas, pineapple, baker's yeast, carrots, a whole bunch of things! I had been living on corn tortillas, corn tacos, chicken, and pot roast with potatoes,carrots, etc. I don't quite think the food blood tests are the real deal.....I'm going to have scratch tests done. I've also been lactose intolerant for more than 30 years. Next month I will have medical coverage and will be able to have endo and colonoscopy done....am looking forward to it!

My life and health started to turn around after the Enterolab results...and the help of this forum. The Enterolab test was much cheaper than the horrendous uninsured hospital emergency room bill I incurred because of excruciating abdominal pain. All tests were normal.

[saralucinda]

I had a similar experience except I didn't have a blood test I had a biopsy via a scope of my intestine. They found damaged vilii but I tested negative for sprue. However they did send me about a month later a sheet on eating Gluten Free. Still confused on that one. I had eliminated alot of wheat prior to the exam because I was filling so sick and when i did the elimination diet that my primary care physician recommended i started feeling a little better the more I cut wheat out. Now if I eat anything or get glutened accidentally I double over on the ground in PAIN! Like to the point I am moaning. And of course that starts the IBS course up and takes about 3 days to recover. I also just recently found out that my grandpa has it and I am also very enemic. I don't have a blood test that confirms it but I bruise very easily sometimes and am ALWAYS cold. Especially after eating. My husband says he can tell when I am enemic and it is usually the worst before and during my period.

[Fiddle-Faddle]

I had a similar experience except I didn't have a blood test I had a biopsy via a scope of my intestine. They found damaged vilii but I tested negative for sprue.

I find this a bit confusing, as celiac , or as it is also known, celiac sprue is defined by--damaged villi. How could they say you tested negative for it?????

[Shelly D.]

Like everyone else has said, if it feels good --do it!

From what I've read one indicator blood test (Total serum IgA) gives false negatives because the person getting tested can be deficient to start with so an elevated reading actually comes out looking normal. Be sure you doc is running all five tests on your blood, they are- tTG-Iga, EMA-IgA, AGA-IgA, AGA-IgG, and total serum IgA. (from "Living Gluten Free for Dummies, by Danna Korn)

Although Danna Korn says the EnteroLab stool tests aren't "considered a standard diagnostic tool" for celiac disease I got positive results from a GI test (I used Diagnos-Techs Lab). I collected poo 2x over a 3 day period in vials and spit in another vial, all in a nice mailer kit, provided by an LPN to find out I had gluten intolerance, my family doc Dx-ed the Celiac Disease and ran blood tests that came back negative. I still consider myself as having celiac disease.