Primer on Celicac

[Illinifan]

I need a quick primer on celiac please. Our ped endo called today and said "one of Zach's antibody levels is too high". He has a referral to see a ped gastro doc at the end of the month. I read a list of symptoms and he doesn't exhibt any of them.

I'm clueless.

[aklap]

Hi Brian,

Did he say or do you know which blood test was out of range? There are 3 or 4 that make up a complete celiac panel - however many times all of them are not run. Depending on what test was run, there be other issues that are causing the high level.

The bad thing about CD, is that you can not go strictly by outward symptoms. Some one can have CD and exhibit no outward symptoms. Often times a sharp doctor will catch it thru other blood work or tests. Anemia is a biggie. Everyone presents differently, that's partially why it's so tough to nail down [unless you know what you're looking for]. Classic symptoms of Celiac [diarrhea, abdominal pain, bloating, overall gastro issues], are not always typical symptoms. Most doctors will look only for the classic symptoms. Many will fall thru that cracks that way. It's no wonder that the average length of time for diagnosis is now 9 years [it was 11, so it's getting better].

Have you seen an extended list of symptoms? (http://www.celiacforums.com/viewtopic.php?t=61).

Kudos to your doc for running the blood work! Sadly, many of them don't/won't. Because of Zach is in a higher risk category for CD, it's something that needs to be throughly investigated.

When you see the Ped Gastro, ask him/her how many CD patients they have seen/diagnosed. This is a valid question to ask. It will give you some idea of their knowledge level. If they dx'ed or have seen a lot, you know that they are looking for it and know what to look for. If they say that it's rare and have seen very few - that should be a red flag. Current stats say 1 in 133 of healthy people have issues with gluten (http://www.uchicagokidshospital.org/pdf/uch_007937.pdf) and don't know it [or are in denial ;)]. If there are symptoms, it's 1 in 56. Many docs still believe it's 1 in several thousand!

Here's some general background info on CD:

http://www.celiac.org/cd-main.php
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
http://www.naspghan.org/sub/celiac_disease.asp
http://www.nlm.nih.gov/medlineplus/celiacdisease.html

I hope some of this helps.

[Mama Belle]

I need a quick primer on celiac please. Our ped endo called today and said "one of Zach's antibody levels is too high". He has a referral to see a ped gastro doc at the end of the month. I read a list of symptoms and he doesn't exhibt any of them.

I'm clueless.

We got the same news a couple of weeks ago. Our daughter is going in for a re-test. Good luck!

[Illinifan]

Last week we went to see a ped gastro and he answered some of our questions, but wanted to immediately go to an endoscopy to confirm dx. Zach only had one of the antibodies show up and they had not run the full spectrum of blood work yet.

We told them no endoscopy until we get the other blood results back.

[WestinsMom]

When Westin first had antibodies, oh about 4 years ago or so, the gastro did nothing. "The numbers weren't high enough." Then two years later we went back and they were at the point where they though it would be worth doing the endoscopy. They weren't in a hurry, but I wanted to know either way. He was positive in the endoscopy so we have been gluten free for 2 years.

Westin had zero symptoms! He still doesn't really. If he does eat gluten he gets some diarreah (sp?) now, which is enough to keep him from asking to "cheat".

Just remember, no symptoms doesn't mean no damage!

Good luck!

[Illinifan]

Well, chalk one up for getting a second opinion.

Zach's second set of blood work came back and he does not have celiac.

The high antibody reading from the first test was an error. They sent the sample out to another facility and when the results came back, the tech transposed two numbers. The second test showed normal results.

Phew! :)