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Biopsy Needed If Blood Test Is +?

Tripletmomma2000

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Tripletmomma2000 Rookie
Tripletmomma2000
Posted

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?

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Lolabell Newbie
Lolabell
Posted
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 Mentor
Lisa
Posted

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 :blink:

cruelshoes Enthusiast
cruelshoes
Posted

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.

  • 2 weeks later...
Tripletmomma2000 Rookie
Tripletmomma2000
Posted
  • Author
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 Community Regular
angel-jd1
Posted
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 :rolleyes:

cruelshoes Enthusiast
cruelshoes
Posted
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 :rolleyes:

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.

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angel-jd1 Community Regular
angel-jd1
Posted
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!! :lol:

-Jessica :rolleyes:

gaylamac Newbie
gaylamac
Posted
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 Rookie
gfpaperdoll
Posted
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...

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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