NeuroTalk Support Groups - PubMed

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- Gluten Sensitivity / Celiac Disease (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/)

- - PubMed - 2006 (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/2763-pubmed-2006-a.html)

Celiac disease presenting with chilblains in an adolescent girl.
PMID: 17014640 Sep-Oct 2006

Quote:

Chilblains, or pernio, are cutaneous lesions that may accompany systemic illnesses including states of malnutrition and autoimmune diseases. We report an adolescent girl in whom chilblains were the chief presenting sign of celiac disease. A gluten-free diet led to weight gain and resolution of the chilblains. We speculate that in this patient, weight loss due to celiac disease contributed to the development of chilblains.
PMID: 17014640

What are chilblains?
http://www.mayoclinic.com/health/chilblains/AN00952
http://www.dermnet.org.nz/reactions/chilblains.html

Diagnostic tests are not perfect~

Should Stored Serum of Patients Previously Tested for Celiac Disease Serology be Retested for Transglutaminase Antibodies?
PMID: 17016136 Oct 2006

Quote:

INTRODUCTION: Tissue transglutaminase (tTG) antibodies are currently recognized as a highly sensitive indicator of celiac disease (CD). Although a high concordance rate between tTG antibodies and anti-endomysial antibodies (EMA) has been reported up to a third of known CD patients are positive for only one of these antibodies. AIM: To determine whether in laboratories in which serum samples previously examined for CD serology markers had not been discarded, these samples should be tested for tTG antibodies. METHODS: Fifty-eight stored (frozen at -70) serum samples of patients previously found to be EMA-negative but positive for one or more of the non-EMA markers: antigliadin antibodies (AGA)-IgA, AGA-IgG, antireticulin antibodies, were tested for anti-tTG antibodies (IMMCO Diagnostics). In patients found to be tTG positive, medical charts were reviewed and patients or their physicians contacted. RESULTS: Twelve of fifty-eight (20.7%) samples were found to be anti-tTG positive. These included: group A: 3/3 samples previously positive for AGA-IgA, AGA-IgG, and antireticulin antibodies. Group B: 3/16 samples positive for AGA-IgA and AGA-IgG. Group C: 3/4 samples positive for AGA-IgA and group D: 3/35 samples positive for AGA-IgG. Of the 12 positive patients, 1 was a 2-year-old boy, 5 were lost to follow up, and 7 underwent an intestinal biopsy. In 3 of these 7 patients, the biopsy was compatible with CD; 2 of these 3 patients were from group A and 1 from group B. CONCLUSIONS: In laboratories where stored serum samples are available, EMA-negative samples previously found to be positive for at least 2 other CD markers should be retested for tTG antibodies.
PMID: 17016136

Quote:

Originally Posted by jccglutenfree (Post 19975)

CONCLUSIONS: In laboratories where stored serum samples are available, EMA-negative samples previously found to be positive for at least 2 other CD markers should be retested for tTG antibodies.

Wow, that one is fascinating. And, come to think of it, that would apply to my four-year-old. Her first celiac test was an EMA (negative) and one of the antigliadin tests (off-the-scale positive), which made the doctor say that she didn't have celiac disease. A year and a half later, when I finally pestered her doctor into sending her to a gastroenterologist, she had transglutaminase IgA and IgG tests (and antigliadin IgA and IgG tests) that were strongly positive. I wonder what would have happened if I hadn't pestered her doctor into sending her to a GI. Would the lab have eventually dug up her old blood samples and run transglutaminase testing on it the way this article says to? Man, that would be a weird phone call to receive. "Hi, remember that negative blood test on your daughter from several years ago? Well, guess what -- it wasn't so negative after all, and she may have this disease....."

-Valerie

Yep, blood tests are good but not perfect.

I used to hear in a perfect world that anti-endomysial and anti-tTG should be consistent, but they aren't always. Which is why a thorough doctor will run them all. I know in our case, only the anti-tTG was run, yet I believe it can go both ways (negative anti-tTG and positive anti-endomysial)

It is also why it makes me a little crazy that some of our major celiac centers (like a very windy one) suggest all is needed is a single anti-tTG test.

Recommendations for testing come down to picking what is considered the BEST TEST OVERALL to contain cost, but it is a shame that it comes down certain people falling through the cracks because no test is 100% accurate.

Cara

Valerie,

Well, your daughter's case highlights TWO things. One is that more sensitivity is gained by running the entire panel of tests, and two is that negative testing one year can turn positive a year later. I'm glad you did pester your doctor!

Cara

Quote:

Originally Posted by jccglutenfree (Post 21262)

I used to hear in a perfect world that anti-endomysial and anti-tTG should be consistent, but they aren't always.

Quote:

Originally Posted by jccglutenfree (Post 21269)

...negative testing one year can turn positive a year later. I'm glad you did pester your doctor!

I am glad too. But I believe that my daughter had active celiac disease when they did the first test, too, and the test was only negative because the EMA is a very inaccurate test.

-Valerie

Quote:

Originally Posted by valeriemates (Post 21331)

The thing that bothers me about the endomysial test is that it's done by labs all over the place, but it's only accurate if it's interpreted by a highly trained special technician -- which most labs don't have. So most EMA test results are about as valid as flipping a coin. What in the world is the point of even *doing* a test that is known to be that inaccurate? Sigh....

I am glad too. But I believe that my daughter had active celiac disease when they did the first test, too, and the test was only negative because the EMA is a very inaccurate test.

-Valerie

I think you are probably right, and I'm sorry your daughter was one who fell through the diagnostic crack :(. I guess that is part of our mission... to help people understand that the diagnostic testing is not perfect and there is room for plenty of error in both false negative blood work and false negative biopsy.

Cara

Hi Cara,

I finally got around to registering on BT2. I've been swamped recently but ready to get back to learning some more from you guys. Looks like you're still at it in a great way.

Great "seeing" you again. More later,
John

Where were you when I've had all my dog questions??? :)

Well, we have a new pup coming home in 7 weeks...so its probably a little late to ask you about the breed. We lost our Golden Retreiver in July :(.

Nice to see you. I'd love to hear about that conference you were talking about last time I heard from you!

Cara

I'm sorry to hear that about your Goldie, Cara. I've been either preparing for a speach or doing one for the past 6 months. I now do a monthly Podcast and just agreed to do another. I'm like a dyslexic slouch...I don't think I'm busy enough. LOL

The human conference (www.worldhealth.net) I did in July was interesting. I spoke on epilepsy and The G.AR.D. I'll shoot you a PM about it.

Send me a PM if you want advice on the puppy. Do you have my Email? That would be better. Starting the right diet is of paramount importance, of course...especially important in some breeds that are clearly food intolerant in a big, big way (e.g. Goldies. Labs, Rotties, Cockers/spaniels, Shih Tzus and many more).

Good to hear from you again,
John