False Negative...

[rock on]

Hi all!

My husband just received his blood test for celiac & everything points to a negative result.

We just aren't sure if that's right. He has psoriasis, psoriatic arthritis, b12 deficiency, dental problems, not really any gastro problems, and was low in vitamin D until taking large dose supplements. We know there's something going on here!

Does anyone have info on false negatives?

He is on methotrexate, can this skew the results since it's an immunosupressant? could it make his IgA levels lower than normal?

Thanks!

[Ursa Major]

There is a high false negative rate with the blood tests. Also, he may not have intestinal damage, but rather damage in other parts of the body. In which case his blood tests wouldn't show celiac disease.

I would try testing with Enterolab to see which genes he has, and what his levels would be with them.

In the end, the diet is the best test there is. If he feels better on a gluten-free diet, then you really have your answer.

[rock on]

  Ursa Major said:

There is a high false negative rate with the blood tests. Also, he may not have intestinal damage, but rather damage in other parts of the body. In which case his blood tests wouldn't show celiac disease.

I would try testing with Enterolab to see which genes he has, and what his levels would be with them.

In the end, the diet is the best test there is. If he feels better on a gluten-free diet, then you really have your answer.

Thanks...I am really interested in the Enterolab gene testing...for myself too as I've had tummy problems my whole life. I was dx as having IBS & lactose intolerance so I started the gluten-free diet with my guy. I probably won't get the blood test for celiac now because we've created a gluten free house, I don't want to start eating gluten again & i figure it's a healthier way to live anyway

One question though, if he has damage in other parts of the body & not his intestines, why wouldn't the ttg test show the antibodies? Are they only created when the immune system is dealing with intestinal damage? Are there different antibodies if other parts of the body are affected?

I find this all sooo fascinating...and frustrating at the same time!

Thanks for your response...and encouragement.

[natalie]

I had negative blood work. When they did the biopsy I was marsh 4 ( completely flat). My Entrolab results are in my signature.

[rock on]

Natalie,

Thanks for listing your experience. We are now 2 weeks into the diet w/o a biopsy. Hoping that it will help.

It's so strange that you can have such damage to your gut & still test negatively in your blood.

Best-

Joni

[Janeti]

Wow Natalie!

By the time you were diagnosed, what was all your symptoms? You had to have had major problems with your stomach. Were you also having any reflux? Were you feeling weak? I know that when I was at my worst, I didn't have the strength to get myself out of bed. Also, how are you feeling now? It would be interesting to hear how your recovery was...I hope that you are doing much better now Janet

[jenngolightly]

I had a false negative, but my regular doc only ran 2 of the tests, and the most unreliable 2 at that! I learned recently that there are 5 blood tests that should be run on a potential celiac. I had the other blood tests done and had low vit d and other signs just as your husband does.

Did your husband get all 5 celiac tests done?

It doesn't matter now. You've probably read or been told that you're even more likely to get a false negative if you've been on a gluten-free diet.

Jenn

[rock on]

Hi Jenn,

I'm pretty sure that he only had 2 tests run...i know one of them was the TTG AB IgA and that was 1AU (a positive dx would need to be >7AU).

We just went for the diet bcz he's been suffering for too long & we can't afford the additional testing.

Do you have arthritis as well?

Are you going to get the biopsy? or are you already on the diet?

best-

joni

[jenngolightly]

  rock on! said:

Hi Jenn,

I'm pretty sure that he only had 2 tests run...i know one of them was the TTG AB IgA and that was 1AU (a positive dx would need to be >7AU).

We just went for the diet bcz he's been suffering for too long & we can't afford the additional testing.

Do you have arthritis as well?

Are you going to get the biopsy? or are you already on the diet?

best-

joni

Joni,

I'm lucky to have great health insurance that paid for a gi doctor and an endoscopy. I had the endoscopy last week and my gi doctor confirmed visually that I have flattened villi. I'm waiting for the official biopsy results (they are supposed to be here within the next week). I started the diet just after I had the endoscopy. Well, actually, I ate a twix candy bar after I had the endoscopy and fell into desperate gi distress, so I started the diet after that. Nothing like a Twix to turn you to a gluten-free diet! :-)

I don't have arthritis, but I do have anemia and osteoporosis (I'm 37).

I'm so happy that even though your dh doesn't have an official diagnosis, you've started the diet. My husband is being very supportive of me. He's made me gluten-free dinners (and ate them himself), and bought me some books about being gluten-free (he's reading them, too). It sounds like you're also supporting your husband with his new lifestyle. He's a lucky man.

Jenn

[peter99ff]

Im with ya I was on a gluten free diet for about 2 years when I finally found a doctor I thought was listening. lol. My test came back negative as the protiens from what I understand go back into the normal range after being on the diet, hence the false results. My white count was high too. I can say I will never eat gluten again. gl frank

[Centa]

  peter99ff said:

Im with ya I was on a gluten free diet for about 2 years when I finally found a doctor I thought was listening. lol. My test came back negative as the protiens from what I understand go back into the normal range after being on the diet, hence the false results. My white count was high too. I can say I will never eat gluten again. gl frank

I've just registered on this site. What got me to do it was beginning to read about these negative tests. And wowsie, Peter, I had your same experience with the doc.

I can tell already that parts of my story are frequent for a lot of other people on this site: I had a pretty sudden onset of extreme fatigue, no rest at all when I would sleep, pains all over my body, mental fog and absolutely ravenous appetite (my weight had been stable for 40 years; so had been my diet and my appetite).

One of those bad interactions with a physician, who waved away my symptoms when I reported them at the time of my annual physical, I went hunting on the net, found fibromyalgia which fit the nonrestorative sleep, started tinkering with getting more rest and with vitamins, still bad, really bad, year #2 he said he didn't believe fibromyalgia existed, I said I don't care what you call it I'm sick, and he tested for lupus and rheumatoid arthritis, which turned up negative. I do a lot of public speaking: I wasn't able to finish my sentences, my mental fog was so bad. Pain, fatigue, ravenous appetite

Starting year #3, I went to a nutritionist who said I sounded like I was having a problem with wheat...she thought allergy...I took wheat out (well, I hadn't figured out about the caramel color and maltodextrins yet), and my life came back. I could FEEL the fog lifting in two days, sleep started to be better (although I don't tolerate wine well, like some others on this site) in a month.

Took THAT to the doc for year #3, and he tested me AGAIN for lupus and rhematoid arthritis and it came back inconclusive, as it had in the past. But I was sold on taking the wheat out...I get those blisters on the elbows if I eat it, and I had had those cracks and cold sores in my mouth before the nutritionist suggested taking the wheat out...and I got my mind back and started to get my sleep back. Eventually my uncontrollable appetite (which I'm guessing was due to malabsorption...my body was starving for nutrients) tapered back. Why would I eat wheat again? So I know that I completely blew the possibility of doing an uneffected medical analysis of my gut but until I get a doctor who shows that he/she KNOWS what she's doing, that's tough.

How do people find a knowledgeable doc about celiac, by the way/

Year #4 I WROTE to this doctor of mine, saying I wanted direction from him and response from him about my SYMPTOMS because I needed to know what to do if I had a permanent problem. At which point he READ the dated, signed request, with the indication that I had a copy, lawsuit probably hovered in mind and said "well, if you took wheat out of your diet and immediately improved," you have celiac." At which point he tested me AGAIN (but I hadn't been eating wheat for 1 1/2 years!!! What was he doing??) and the results came back inconclusive.

NOT IMPRESSIVE. As you can see, I'm still plenty p.o.ed. I'm on a HMO and don't have too many options to change docs...I've explored that one. But please, is there ANY way to find a doc trained in autoimmune diseases for someone with ordinary HMO options, or do you have to kiss those toads (visit new docs) one by one until finally one turns out to be a prince/princess??

Bottom line: this site, in 10 minutes, has helped me more with patterns and probabilities than 4 years of this HMO doc.

I didn't KNOW that there can be false negatives. He never said that. I hadn't dug that out of the internet, either...oh, references to false negatives, but nowhere near what has been reported on this site. Thank you, everyone who wrote about it.

I didn't KNOW that there were all those different states the gut could be in. I've failed to get my doc activated to get involved, and I was so, so sick: he did say in Year 3 that he thought I had an autoimmune disease...well, which one, Doc? Wheat have anything to do with it???

I didn't know that there is a possible connection between celiac and candida...I didn't know...10 minutes scanning this forum and I have picked up so much...

I'll be back to read. I guarantee nothing that I post will be as long as this.

Oh, by the way, I've cut wheat out for 2 years. One side effect? My total cholesterol count dropped 20 points. It's a side effect of not eating processed foods.

For those of you who have known you are celiac for a long time, in addition to scrupulously taking wheat out of the diet, do you ever have to go get checked again, to find out what the state of your gut is?

ANY remarks about long term care, beyond not eating wheat, are appreciated!

[happygirl]

You can have the gene test run through your doctor, and don't have to use enterolab. If you have insurance (which I am assuming since you had the bloodwork run), then it might be a better route to go through your dr.

A good way to find a knowledgable doctor (for any condition) is to find a support group in the area, and ask them for recommendations. You can then see if they fall under your insurance plan.

From: Open Original Shared Link

Seronegative celiac disease

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA [30]. Clinically seronegative celiac disease is similar to sero-positive celiac disease [23, 28] In view of the possibility of the presence of celiac disease in the absence of a positive anti-tTG or endomysial antibody the presence of a positive IgA AGA should prompt a biopsy [13]. Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease [23, 25, 31, 32].

[Centa]

Thanks, happygirl! That description of seronegative celiac disease provides good vocab to use to talk with doctors. That last sentence pretty much encapsulated what my HMO doc was doing.

And thanks for the idea of finding a support group for recommendations. The ones around me don't seem to have been active since 2004, but I can cold-call individual names that show up on the old sites.

I appreciate your reply.

Centa

[wowzer]

I too had a negative blood test for celiac. I had many of the symptoms and have a little sister that is diagnosed as a celicac. I went gluten free the beginning of the year with positive results. Even my doctor agrees that it is helping. I have one sinus infection since going gluten free. I used to almost never get rid of them.

[lil'chefy]

any info on the candida diet? I am wondering if yeast is a problem for me.