Mis-diagnosis?

[meganrhae]

Hello, I'm new to the board....sounds like a great group of people here! I bit of history (short version). I've had mouth sores since my teenage years, developed joint pain after my daughters birth 3 1/2 years ago...doctors wrote this off and perscriped muscle relaxers which I threw away... started having horrible panic attacks around the same time, had another daughter (now 16mos) and joints got worse. I was diagnosed with reactive arthritis do to an unknown cause, and within the last month I've had D, stomach pains, horrible bloating, and chronic fatigue. Went to my doctor last week and requested a Celiac screen and it came back negative.

I've remained on the diet and within just a week the arthritis is almost completely gone, which I've refused to take medicine for, haven't had any bloating or D, I have an annoying amount of energy and with two kids that comes in really handy. I'm just so confused why it came back negative? Are there a lot of false negatives?

[happygirl]

Lots of reasons for a "false negative"

1. Dr. didn't run the full Celiac panel. Some of the tests are more sensitive than others. You may be positive on one, but negative on another.

2. Bloodwork doesn't always pick up on the antibodies. Some of the tests are correlated to damage, so if you only have "some" damage, it doesn't always trigger the response in teh bloodwork.

3. True false negatives....you could have a raging case of Celiac, but even the best blood tests aren't perfect 100% of the time.

4. You may not have "true" Celiac, but you may have a gluten intolerance/sensitivity that isn't explained by the Celiac bloodwork.

If your goal is to get rid of your symptoms, it would probably be wise to continue the diet, since you are already seeing positive changes.

Welcome to the board! I hope that you find answers and support here.

[ravenwoodglass]

False negatives are certainly not unheard of. Up to 30% of us with full blown celiac will come back negative on testing. I am one of those. I just wish the doctors had told me what the panel was and given me a chance to try the diet before I was almost dead. They just kept blood testing for 15 years and telling me to be glad the tests were negative, yea right. I finally saw an allergist who found celiac with an elimination diet and literally saved my life. I then went back to my GI who almost killed me by demanding a gluten challenge. The third day found me lying on the floor bleeding and almost unconsious instead of on a gurney waiting for a biopsy. I got my GI derived diagnosis but it almost lost me my life. Go with what your body is telling you, that is the best determination.

[April in KC]

Hi there,

There are not very many laboratories nationwide that are qualified to read and interpret the blood tests necessary to diagnose Celiac. So one possibility is that your lab did not send off your blood tests to be interpreted at Mayo or one of the other good Celiac labs, etc. However, you can still be negative even if you had a good lab.

Some Celiacs have a deficiency of immunoglobulin A or IgA. Several of the Celiac blood tests (and there are four or five different ones that make up a full panel) depend on the presence of IgA to render a positive test.

A full panel might include:

Antigliadin-IgA

Antigliadin-IgG

Tissue Transglutaminase

Endomysial antibodies

(Some older panels also include Reticulin antibodies)

I believe three of these four tests depend on the presence of IgA. Roughly 20% of Celiacs are deficient in IgA, rendering their tests false negative. A really aware physician will ask for a test of your "Total IgA" or "Serum IgA" (a separate test not often included in a Celiac panel) if your other tests come back negative and you persist in having Celiac symptoms. If your "Total IgA" is below normal range, then you have IgA deficiency and that ALONE is a good indicator that you have Celiac Disease.

And some people just don't have all the classic symptoms and antibodies but still have a raging problem with gluten.

I had symptoms for decades - mouth sores, miscarriages, difficulty concentrating, fatigue, dizzyness/stumbling, dermatitis herpetiformis (itchy elbow rash), and eventually "d" and a painless 30-lb rapid weight loss. I never had GI pain until after I stopped eating gluten (and now only when I accidentally get glutened, which also causes a recurrence of mouth sores and some other symptoms).

When I went gluten-free, I knew within 2 days that this was the source of many of my problems. (And it was, and so many more things also "cleared up" that I had no idea were related.) I rushed in to get myself and my oldest son tested. We got tested by different doctors, different labs. He came back positive on ALL the tests, whereas I came back positive on only one of the tests, antigliadin IgA.

[Now, obviously I am not one of the Celiacs who has IgA deficiency or else I could not have tested positive for antigliadin IGA, but point is, I did not test positive to all the tests. Also FYI, sometimes antigliadin IgG ("G" not "A") is positive in people who have other conditions like Chron's, but I have seen one "decision tree" for physicians that states that ANY positive IgA test should make them strongly suspicious of Celiac.]

My immunologist was the one who tested me. He referred me to a GI doc, who looked at my test result, listened to my history, looked at my photos of my dermatitis herpetiformis rash, plus photos that showed how much weight I had lost in three months, considered my son's diagnosis, etc. He said that I have Celiac - too many things pointed to it. I could not stay on a gluten-free diet for 6 more weeks waiting for a scope, because I was then nursing an infant who also seemed to be gluten intolerant (bleeding eczema).

With his blessing, I remained gluten free and we did a scope after 7-8 weeks gluten free. It's not the right way to "catch" celiac, but we both wanted a scope for peace of mind that there was no other malignancy or cause. He did find a haital hernia and esophageal tissue resembling Barrett's tissue (biopsied negative for Barrett's - that was a scare), but otherwise I was clean. The celiac biopsies were negative at that time, but my GI said it didn't matter...since my "d" was present for only a few months total, I could have healed in 7-8 weeks, or I could have patchy damage to only part of my small intestine, etc. I was healing and feeling great gluten free.

Listen to what your body tells you. Document all your symptoms. Over time, if it's gluten, you will have your proof. Initially I went off gluten for 2 days, then went back on for 3 days until I got my blood test. The absence and presence of symptoms was so disturbing that, after those 3 days, there was no way I was ever going to eat gluten again, and I was adamant about this.

Since going gluten free, I have found out I have osteopenia, another Celiac indicator. My weight loss gradually slowed off gluten, and only recently (nearly a year in), I have been able to gain some weight. My oldest son was much sicker than I was, and he is still not back to normal. His GI initially said there was no need to scope, as he took a positive endomysial antibody test to be "absolutely Celiac", but now he wants to scope since DS is not getting well very quickly.

I wouldn't be exactly mad at your doctor if you do have Celiac - but I would gently explain to him after several months that you do feel that it is what you have. Over time, you probably will not stay on such a restrictive diet if it does not truly make you better. Your doc will be persuaded if you still feel the same way after 6 months or a year. In the meantime, you could ask for a copy of your records so you can see what was tested (usually you can ask at the front desk and sign a release and they'll make a copy for you). You can gather information and ask to have other values tested - but that is of questionable value if you have remained gluten free, since the values fall.

We expect docs to know everything about it, but really they have limited information to go on.

[lizard00]

April, thanks for that post!!! I got my bloodtest, which was negative, and I just chalked it up to being gluten-free for a month before. And I'm sure that was part of it, but my Total IgA was 19 and I think the normal range starts somewhere around 80 to 100 something. I tried to research it, but I couldn't find much about it. The doctor signed off on the result as normal, and that was that. She doesn't know much about celiac anyway, but I didn't think much about that as being an indicator. Is there a low that is considered an indicator or low enough, or is it just low in general?

[CarlaB]

Check out this thread. Open Original Shared Link

It sounds like you have a lot of these symptoms .... maybe this could be the cause of your pain.

[meganrhae]

Thanks everyone for your replies. I'm definitley sticking to the strict diet. I can't believe my energy level. Never thought I'd feel this good again.