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Am I A Bad Mom For Not Letting Them Biopsy My 16 Month Old?

Stacielovas

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Mtndog Collaborator
Mtndog
Posted
Certainly are not a bad mom not wanting to do the biospy. I would suggest doing the Celiac Panel (blood work)...if that comes out positive then your child has celiac. There is no such thing as a false positive celiac panel (blood work) however there are many false negative biospies.

That said:

this is what is the most recent being taught in top teaching children's hospitals:

Just recently a GI specialist presented a session on Celiac disease. They have reclassified celiac disease into 3 categories.

Symptomatic Celiac Disease where they have positive blood test & manifest lesions in the intestines.

Silent Celiac Disease where there is minimal symptoms with damaged mucosa & positive blood test.

Latent Celiac Disease where they have positive blood test results but normal mucosa in the GI tract.

The people with Latent Celiac given the "right" circumstances, will develop mucosal changes at some point in time. This could be a virus, stress, or some other event they don't even know (much like what triggers type 1 Diabetes).

If a person has a negative Celiac Panel Blood Test result then there are other conditions to look for BUT a positive Celiac Panel Blood Test puts a person in one of the 3 above categories.

The golden standard for diagnosis still remains the Biopsy. However the goal is to diagnose without invasive procedures. (does this mean to forgo the biopsy?)

AGAIN

There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac.

Woody- Can you show the research that backs up where you got this info? Thanks!

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Woody6 Newbie
Woody6
Posted

Open Original Shared Link

the link above tells you of the three types of celiac. Only ONE TYPE will provide the lesions within the biospy that is required for the general golden standard of diagnosis. Doctors are considering less evasive methods to diagnosis by considering possibly forgoing the biospy especially since that is the last stage or the acute stage of Celiac....my question is...why wait to get to that point when a positive celiac panel is enough?

I was at the teaching hospital during the actual lecture and they specifically stated there is no such thing as a FALSE POSITVE in a celiac panel HOWEVER there are tons of FALSE NEGATIVES in a biospy. that part I can only tell you what was said. I cannot give you an internet cited source. That said....all three types of celiacs all have a positive celiac panel...if there is a positive celiac panel then the person has one of the three types of celiac. Only one type of celiac the symptomatic type will produce the lesions in the intestines...the other two will not. Eventually, however, a person with a positive celiac panel will produce the lesions.....eventually....that does not change the fact that they still have celiac disease without the lesions. This is the point I'm trying to stress to the celiac community.

The biopsy remains the golden standard of diagnosis ONLY BECAUSE living a gluten free diet is very restrictive and lifelong.

Why suffer through a biopsy when it has a tendacy for false negatives when simply going gluten free and all aliments are elivated would be enough.

Just my opinion.

To make a very long story short.....

I have one child that had the lesions on the intestions and has the golden standard of diagnosis. I have another child that did not have the lesions on his intestions so he got a false negative.

BOTH children had positive celiac panels. BOTH children have a Celiac Diagnosis

Both children are gluten free and doing wonderful.

Matter of fact they just got their annual blood work done at the children's hospital just this past Monday. Now that they have been gluten free their Celiac Panel should be negative. That does not mean they no longer have Celiac...that means we have effectively removed all gluten from their diet. Just thought I'd clarify that in case it cause confusion.

Celiacs will be required to have celiac panels done annually and sometimes even biopsies if the panel is still showing it is elevated after being gluten free for a year or there was lesions in the intestions during the first biospy. The doctor will want to evaluate wether or not the intestines is healing or has healed if there were lesions in the prior year biopsy or if the celiac panel is still positive after a year of gluten free to see if lesions have since developed if there were no lesions in the last biopsy...a trip to the dietician is in order to see where those hidden glutens are that is being ingested unknowinglyl.

if the celiac panel is negative a year after diagnosis and there was no lesions in the first biospy a year ago then there would be no need for another biospy that i'm aware. At least that is my current understanding regarding the annual check ups of Celiac Patients in our Children's Hospital.

g1gg1e Rookie
g1gg1e
Posted
Matter of fact they just got their annual blood work done at the children's hospital just this past Monday. Now that they have been gluten free their Celiac Panel should be negative. That does not mean they no longer have Celiac...that means we have effectively removed all gluten from their diet. Just thought I'd clarify that in case it cause confusion.

Thanks for the info! OUr panel came back negative but the Gene test came back + . I told them that being gluten free ( I think the GI didnt think I really had her really gluten-free) that the test would not come back + other then the gene test. We worked vary hard and took gluten out vary early ( at age 12 weeks) because it was vary obvious that this was the issue. We felt feeding gluten and damaging her , have to do a feeding tube switching formula when we again KNEW what the issue was just to quilify a test was not in the best interest of our child. What damage would it do if we kept her on it? S

We are going to get a full panel blood test done on our 4.5 yo at her 5 year appointment ( she is gluten-free/CF for right now). She will be eating gluten quite a bit for a few months before the test because unlike her sister she has lesser symptoms and we feel she can do it for the time needed but she will NOT be getting the Endo.

Hang in there! kids at this point don't really know they are eating different then most. There will always be time to feed them gluten later and get the testing done when they are more developed. Esp if you already see a huge difference then thats what really counts!

Dr.s mato : First do no harm!

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