Biopsy Needed If Blood Test Is +?

[Tripletmomma2000]

Hi there,

I tested positive for Celiac at the end of April. I had my children tested (IGA) and 2/3 of the triplets also tested positive. Their pediatrician suggested they go see a Gastro. doctor, and have an endoscopy. Is it really necessary to have the scope, if the blood test shows a + result? My concern is having an invasive procedure, and have the end result be the same (gluten-free diet). We got the + result on the kids this past Thursday, and they immediately went gluten-free, so they've been "clean" for about 5 days now.

What's the up side of getting the scope done? Is there one?

[Lolabell]

  Tripletmomma2000 said:

Hi there,

I tested positive for Celiac at the end of April. I had my children tested (IGA) and 2/3 of the triplets also tested positive. Their pediatrician suggested they go see a Gastro. doctor, and have an endoscopy. Is it really necessary to have the scope, if the blood test shows a + result? My concern is having an invasive procedure, and have the end result be the same (gluten-free diet). We got the + result on the kids this past Thursday, and they immediately went gluten-free, so they've been "clean" for about 5 days now.

What's the up side of getting the scope done? Is there one?

The problem with blood tests is the occasional false negative, not the false positive, if any of your children should have the scope, I would think it should be the one that tested negative on the blood test, (IMHO).

Wow, good job on going gluten-free so quickly. My 14 year old son has been gluten and casein free because of leaky gut for 7 years. Oh how I would love to strangle the school district for thinking every good deed has to be rewarded with pizza parties! Be prepared for a long road to tow!

[Lisa]

An endoscopy exam can determine the extent of the damage in the small intestines. The biospy can be hit or miss. It, as in the blood test, can rule Celiac in, but not rule it out.

Positive blood test is a Celiac diagnosis.

Triplets, wow

[cruelshoes]

A positive diagnosis of celiac disease generally follows this course:

1 - positive results on the bloodwork

2 - positive results on an endoscopy (generally considered the gold standard for diagnosis)

3 - improvement in symptoms on a gluten-free diet

Some people have a different combination of the three. Most MD's will generally not diagnose celiac disease on bloodwork alone. I had the endoscopy done on my son when he was 6. I thought long and hard before I agreed to the procedure. I feel that the more information one can have before committing to a lifestyle like this the better (it really is a lifestyle - much more than a diet). My son will eventually be a teenager (God help me). I don't want there to be any doubt about his diagnosis when he gets into the "screw you, Mom. I'll eat what I want" stage. I have the pictures to prove how damaged his intestines were even though he had NO symptoms. He has a 529 plan with the school district, which he could not get without a diagnosis.

If it means anything, his endoscopy was much harder on me than it was on him. He has no memory of it.

HTH.

[Tripletmomma2000]

  cruelshoes said:

He has a 529 plan with the school district, which he could not get without a diagnosis.

What is the 529 plan at school? The only 529 I know about is a college savings plan? Will this help my kids in school? Sorry to sound so LAME!

Karen

[angel-jd1]

  Tripletmomma2000 said:

What is the 529 plan at school? The only 529 I know about is a college savings plan? Will this help my kids in school? Sorry to sound so LAME!

Karen

Most likely they are talking about a 504 plan. It is a education plan for kids with disabilities that are not on an IEP (Individualized Education Plan). You can read more about it here:

Open Original Shared Link

-Jessica

[cruelshoes]

  angel_jd1 said:

Most likely they are talking about a 504 plan. It is a education plan for kids with disabilities that are not on an IEP (Individualized Education Plan). You can read more about it here:

Open Original Shared Link

-Jessica

Duh! You are right - I was talking about a 504 plan. Can you tell I am setting up 529 plans for my kids lately? I have them onthe brain. Thanks for clearing that up for me.

[angel-jd1]

  cruelshoes said:

Duh! You are right - I was talking about a 504 plan. Can you tell I am setting up 529 plans for my kids lately? I have them onthe brain. Thanks for clearing that up for me.

There are too many numbers and acronymns out there!!

-Jessica

[gaylamac]

  cruelshoes said:

A positive diagnosis of celiac disease generally follows this course:

1 - positive results on the bloodwork

2 - positive results on an endoscopy (generally considered the gold standard for diagnosis)

3 - improvement in symptoms on a gluten-free diet

Some people have a different combination of the three. Most MD's will generally not diagnose celiac disease on bloodwork alone. I had the endoscopy done on my son when he was 6. I thought long and hard before I agreed to the procedure. I feel that the more information one can have before committing to a lifestyle like this the better (it really is a lifestyle - much more than a diet). My son will eventually be a teenager (God help me). I don't want there to be any doubt about his diagnosis when he gets into the "screw you, Mom. I'll eat what I want" stage. I have the pictures to prove how damaged his intestines were even though he had NO symptoms. He has a 529 plan with the school district, which he could not get without a diagnosis.

If it means anything, his endoscopy was much harder on me than it was on him. He has no memory of it.

HTH.

Thanks for this. I have been struggling with how to start testing for my 3 sons. They are 21, 20, and 11. Two definitely have symptoms, have never been tested. Any advice on this would be appreciated.

I was diagnosed with celiac last month, at age 44. I had some problems with the testing myself, tested negative back in 2004 for both blood and biopsy. Problems persisted and pushed for tests again last month, again tested negative for blood test but positive with biopsy this time. I am one week into gluten free diet with some improvement. I had to push as my GI Dr. was convinced it couldn't be celiac since my last test was negative. Thanks

[gfpaperdoll]

  gaylamac said:

Thanks for this. I have been struggling with how to start testing for my 3 sons. They are 21, 20, and 11. Two definitely have symptoms, have never been tested. Any advice on this would be appreciated.

I was diagnosed with celiac last month, at age 44. I had some problems with the testing myself, tested negative back in 2004 for both blood and biopsy. Problems persisted and pushed for tests again last month, again tested negative for blood test but positive with biopsy this time. I am one week into gluten free diet with some improvement. I had to push as my GI Dr. was convinced it couldn't be celiac since my last test was negative. Thanks

This is exactly the problem with using biobsy as a dxd. You have to be half dead before the damage shows up, of course if you had not insisted on the test they would have never tested you again, & then you would have gone downhill fast or more likely gotten cancer etc...

I suggest to test your sons thru Enterolab.com & get the gene test so they will know what will be going on when they have children...