Looking For Direction After A Negative Test

[bcroswell]

I looking for some possible direction after getting back a response from my doctor that my Celiac screen was negative.

My background is as follows:

My sister was just recently diagnosed as having Celiac and mentioned I should get screened due to the fact that supposedly chances are 1-20 of having it if a parent or sibling has it.

At that point started reading up on the symptoms and issues. A lot of the symptoms sounded very familiar to what I have experience for a very long time. All of the GI problems intestinal pain, bad gas, and diarrhea. Also I routinely get rashes, most commonly on my legs, that are very itchy raised hive like rashes. These rashes have no apparent cause and can last for a very long time. My most recent one is going on 4-5 months without going away. I also have hypo-thryoidism and am taking synthroid for that.

The doctor did what called a "Celiac Profile".

The results are as follows:

t-Transglutaminase IgA AB 5.6 Reference Range <20.0

Endomysial Abs, S Negative

Gliadian Ab

Gliadian IgG 1.7

Gliadian IgA <1.0

Reticulin Abs Negative

I can't tell from that if he did the gene test, but it appears not. I am wondering if it makes sense to press for that and/or the endoscope/biopsy.

And help would be greatly appreciated.

[confused]

are the numbers for all the test supposed to be less then 20 if they are negative. I know most test have different ranges for each part of the test. Were u eating lots of gluten up to the test time.

You could always test threw enterolab and see if u have the gene, and to see if your body reacts to gluten.

paula

[EBsMom]

If your rash is dermatitis herpetiformis, then you *have* celiac disease. You could go to a dermatologist and get a biopsy. Dr. Peter Green says that if you have a positive DH diagnosis, you also have a de facto celiac diagnosis. You could press for a biopsy; your symptoms, along with your family history, sure make a case for celiac disease. You could also do the fecal and gene tests through Enterolab. You can't get a formal celiac diagnosis, but you can find out if you're sensitive to gluten. My dd was gluten free before we realized that gluten really was the issue, and chose not to put her back on gluten to pursue a formal diagnosis. The Enterolab results confirmed her positive dietary response. If you don't care so much about a "diagnosis", you could just go gluten free and see what happens. A positive dietary response, IMO, is a form of diagnosis, at least for gluten sensitivity. Oh, I forgot to say - you could also load up on the gluten and then have another blood panel run after a period of time....but that seems like the least palatable option if you're not feeling well and you think it's because of gluten consumption.

Good luck to you!

Rho

[zarfkitty]

I looking for some possible direction after getting back a response from my doctor that my Celiac screen was negative.

My background is as follows:

My sister was just recently diagnosed as having Celiac and mentioned I should get screened due to the fact that supposedly chances are 1-20 of having it if a parent or sibling has it.

At that point started reading up on the symptoms and issues. A lot of the symptoms sounded very familiar to what I have experience for a very long time. All of the GI problems intestinal pain, bad gas, and diarrhea. Also I routinely get rashes, most commonly on my legs, that are very itchy raised hive like rashes. These rashes have no apparent cause and can last for a very long time. My most recent one is going on 4-5 months without going away. I also have hypo-thryoidism and am taking synthroid for that.

The doctor did what called a "Celiac Profile".

The results are as follows:

t-Transglutaminase IgA AB 5.6 Reference Range <20.0

Endomysial Abs, S Negative

Gliadian Ab

Gliadian IgG 1.7

Gliadian IgA <1.0

Reticulin Abs Negative

I can't tell from that if he did the gene test, but it appears not. I am wondering if it makes sense to press for that and/or the endoscope/biopsy.

And help would be greatly appreciated.

False negatives are always possible (i.e. you have celiac disease as defined by standard medicine but for whatever reason the tests don't pick up on it). It's also very possible you have none of the hallmarks of "diagnoseable" celiac disease but are very sensitive to gluten.

I got the Enterolab test because I needed to have the data for motivation. I already *knew* gluten was the issue. Same with my daughter. It would have been hard to take her off gluten without hard data.

BUT!!!! The "clincher" for me is dietary response, not the stool test. I FEEL BETTER... END OF STORY. Remember the old joke where the guy is in the doctor's office and he says, "it hurts when I do this." So the doctor says, "well, don't do that!"

What I'm trying to say is try the diet and see how you feel. That will tell you what you need to know.

-Shannon

[aikiducky]

False negatives on the blood tests are quite common. You could ask for a biopsy, it might still be positive despite the blood tests. Symptoms plus a close relative with celiac is a pretty good case for pushing for a biopsy I'd say.

Or you could just try the diet and see if it helps. But then you have to be very sure that you won't need an official diagnosis down the road.

Pauliina

[darkangel]

I can sympathize. I got a negative on blood tests, too. I had to beg for him to even do the blood test and the doctor I was seeing at the time didn't tell me which test(s) he did or what the numbers were... just said it was negative and dismissed the whole matter.

I have an appointment today with my GI. I think he's going to want to do a colonoscopy, but I'm going to ask if he can do a biopsy to test for celiac. I don't know why I have to ASK a doctor to test me... you'd think they'd want to rule out or confirm a celiac dx.

[Hollylou42]

As everyone has said the blood tests often produce a false negative. The reasoning as I understand it is because the blood test is really testing for antibodies that your body produces to combat the gluten. But these antibodies are contained in your small intestine (which is where they are doing the damage) So the only way the blood test is positive is when you are so bad and far along in the disease that the intestine is compromised and the antibodies are getting into your blood stream in high enough numbers to show up in the tests. So as you can see, it doesn't always show that you have celiac. Blood tests can only be used to rule IN celiac not rule it OUT.

[ravenwoodglass]

Try the diet even though your tests were negative. I relied on blood tests cause I didn't know any better and it cost me years of pain and some permanent brain and nerve damage along with damage to other body systems that can not be fixed. If only those clueless doctors had told me to try the diet when I was first thought to have celiac life would have been quite different for me and my children. We all sustained permenent damage because of US doctors cluelessness. We can't get those years back but hopefully with the aid of the knowledge on this board you won't have the same experience. So try the diet no matter what the tests say.

[Lizking531]

I had endo/colonoscopy run with biopsy (according to doc - stomach lining biopsy, not intestinal), and bloodx2, stool, urine

Everything came back negative. Felt bad, couldn't figure it out. I stumbled across this site researching my symptoms. I've tried going gluten-free for about a week now - & I feel a TON better. I have energy now & I dont spend all day on the can. I am in a much better mood as well.

The doc has a breath test for bacteria overgrowth scheduled for me still. I'll do that just to be safe, but so far so good.

I would actually rather not have an official diagnosis. The dietary response is all I need. I'm afraid that with a diagnosis for a lifelong condition, it would make health insurance a bit more tricky. I'm self-employed at times & usually carry my own insurance.

Could a bacteria overgrowth respond positively to a gluten-free diet?

[darkangel]

Could a bacteria overgrowth respond positively to a gluten-free diet?

Definitely. Anything you ingest that you're unable to properly digest remains in the digestive tract and feeds bad gut bugs.

[ravenwoodglass]

I had endo/colonoscopy run with biopsy (according to doc - stomach lining biopsy, not intestinal), and bloodx2, stool, urine

Everything came back negative. Felt bad, couldn't figure it out. I stumbled across this site researching my symptoms. I've tried going gluten-free for about a week now - & I feel a TON better. I have energy now & I dont spend all day on the can. I am in a much better mood as well.

The doc has a breath test for bacteria overgrowth scheduled for me still. I'll do that just to be safe, but so far so good.

I would actually rather not have an official diagnosis. The dietary response is all I need. I'm afraid that with a diagnosis for a lifelong condition, it would make health insurance a bit more tricky. I'm self-employed at times & usually carry my own insurance.

Could a bacteria overgrowth respond positively to a gluten-free diet?

It wouldn't hurt but I am not sure it would really help to repopulate the good guys. The best thing I have found to balance the bacteria is yogurt with live cultures. Just make very sure it is gluten-free, lots aren't. Some also use probiotics with a great deal of success.