Is It Really Celiac Disease?

[crysmz1981]

I've been having digestive problems for several years and was diagnosed with gastroparesis about two years ago. I have been chronically iron deficient so I recently saw a hematologist for iron infusions. She did a blood test for Celiac Sprue which came in the "moderate to strongly positive range." It was 31, and she said above 30 is in that range. I was given info about Celiac Disease and gluten free diet, but she said that my GI doc may need to do other tests to confirm the diagnosis.

Is it possible to not have Celiac Disease even if the blood test is positive? I ask because everything I've read indicated that people with this problem have unexplained weight loss and diarreah. I, on the other hand, am a very healthy and stable 130 lbs and I have chronic constipation. So I'm somewhat confused at this point.

Any thoughts??

Thanks!

Crystal

[CarlaB]

Weight loss and diarrhea are the "classic" symptoms, but that probably contributes to why this disease is so grossly underdiagnosed. Some people even have trouble with obesity because of their celiac! One woman here lost 100 pounds going gluten-free! So, it varies.

Constipation is also a symptom. So is anemia.

A GI doctor will want to do a biopsy. If the biopsy is positive, you have confirmation that you have it for sure. If it's "negative" it can mean you don't have it, but it can also mean that they just didn't biopsy a place with damage. Negative = inconclusive.

It's up to you whether you want a more formal diagnosis. You can just try the diet and see if you feel better ... then you have your answer. Some people want the formal diagnosis, some are just as satisfied with dietary reponse.

[JerryK]

I've been having digestive problems for several years and was diagnosed with gastroparesis about two years ago. I have been chronically iron deficient so I recently saw a hematologist for iron infusions. She did a blood test for Celiac Sprue which came in the "moderate to strongly positive range." It was 31, and she said above 30 is in that range. I was given info about Celiac Disease and gluten free diet, but she said that my GI doc may need to do other tests to confirm the diagnosis.

Is it possible to not have Celiac Disease even if the blood test is positive? I ask because everything I've read indicated that people with this problem have unexplained weight loss and diarreah. I, on the other hand, am a very healthy and stable 130 lbs and I have chronic constipation. So I'm somewhat confused at this point.

Any thoughts??

Thanks!

Crystal

Most medical tests have a pretty narrow range. It's my experience that you have to have it really "bad" to actually fall within the range. I have had tests for testosterone that placed me at 240ng/dl with a test range from 200-1000ng/dl. Because I fell within the accepted range of normal, I could not get treatment for it, even though I had the testosterone of an 85 year old man. (granted gluten probably had a large effect on my T level, but that is a different discussion.)

The fact that you fall within the range that they consider "postive" is highly significant. I'd be so bold as to say yes it likely is truely Celiac, but at least you now KNOW the cause of your digestive problems.

That is my opinion. j

[jayhawkmom]

My *biggest* problem was that I could not LOSE weight. Seriously. Lots of tummy aches, brain fog, and my amazing ability to hang on to 70+ pregnancy pounds from when my 3rd child arrived.

Once I got totally on board with the gluten-free diet, I started dropping weight like crazy. My tummy aches are all-but gone, but I have 3 small children so I'll never be free of brain fog, LOL!

The scope of Celiac/GI related issues is sooo broad, but the diagnostic criteria is sooo narrow. Eventually, doctors are going to figure this out. Until then... we have to continue to be our best advocates!

Best wishes to you!!

[happygirl]

Crystal,

Celiac is often referred to as a medical chameleon because the presentation of symptoms varies so much from person to person, often things that contradict each other (D vs. constipation, weight loss vs. weight gain, etc).

Which blood tests did you have run, and which were positive?

You will find many people on this board who have had similar problems to you, and have had doctors tell them that they can't have Celiac because they weren't "classic" patients. Their doctors were wrong.

Best of luck,

Laura

[crysmz1981]

Which blood tests did you have run, and which were positive?

They gave me a copy of the results and here is what it says:

Gliadin IgG AB - 31 (Moderate to Strong Positive: >30 units)

Gliadin IgA AB - 2 (Negative: <20 units)

Now I'm even more confused. I hadn't looked at this very closely and didn't realize that one was positive and one was negative. What does that mean??

[happygirl]

You need to have the full panel of tests run. Many doctors don't recognize that there are more than two tests. Call your doctor and tell him you want to come in for the full panel.

AGA IgA

AGA IgG

EMA

tTG

total serum IgA

You had the ones in italics done. This is why a panel should be done....there isn't one test that is perfect.

[rez]

The test that you had come back weak positive is the least reliable test when diagnosing Celiac. I would definitely research it more yourself and find a new doctor. Those tests aren't even used when diagnosing Celiac anymore. An IgG can mean a lot of things or nothing at all and it is not specific to Celiac at all. The two most specific tests are tTG and EMA. The EMA is the most specific. My son's tTG was positive and he had a scope and biopsy done yesterday. I cannot say loud enough that you must find a good doctor and get some answers. We have been doctoring for over a year and even a positive tTG can even have a 5% chance of meaning other things. We are waiting for results. Good luck.