Positive Blood Test And Biopsy Questions

[Nicholasmommy]

My son (20 months) tested positive for 1 out of 3 things that indicate Celiac (sorry I don't know what they are called.) The one that he tested positive for was IGA (I think). There is a strong family history. There will be a biopsy next week. I was just wondering what the likelness is that he actually has celiac? Also, how long does it take to get biopsy results?

[psawyer]

I can not tell from the information you provided just what test was positive. A number of tests related to Celiac Disease involve IgA factors.

The test panel may include:

Anti-Tissue Transglutaminase (tTG-IgA) -- A screening test is commonly used when an individual is in a risk group for Celiac Disease, whether or not he/she has symptoms. This test is usually the one offered for Celiac screening events, as it is the most sensitive test available.

Anti-endomysial antibody test (EMA-IgA) -- EMA-IgA are very specific for Celiac Disease but they are not as sensitive as the tTG-IgA.

Anti-gliadin antibodies (AGA-IgG and AGA-IgA) are no longer typically used to test for Celiac Disease due to a low level of accuracy in people who have not yet been diagnosed.

Total Serum IgA -- This one tests for IgA deficiency, a condition which can affect the accuracy of an antibody test. If this test is below normal, then it means that the others above can not be relied upon. If Total Serum IgA is abnormally low, then any other IgA test is likely to produce a false negative.

[Nicholasmommy]

I think it was this test: Anti-Tissue Transglutaminase (tTG-IgA). Does that help? The doctor said that normally two have to show up positive but only one was. She ordered the biopsy and said that there was an 80% chance it was celiac. Any idea's?

[CeliBelli]

I think it was this test: Anti-Tissue Transglutaminase (tTG-IgA). Does that help? The doctor said that normally two have to show up positive but only one was. She ordered the biopsy and said that there was an 80% chance it was celiac. Any idea's?

The TTG test seems to have a higher level of reliability. Biopsy is considered the gold standard for celiac diagnosis, so you are doing the right thing in getting that done. If those results are also positive, your son, you, your son's other parent, and any of your other children should also have the genetics test done to determine who else in the family carries the gene(s).

Although you may have to wait a few days to get the lab results back, your gastroenterologist should be able to share the pictures they will likely take and discuss them with you immediately following the procedure.

I also recommend getting a referral now for a good dietician experienced in treating celiac children from either your doctor or your gastroenterologist. If you get a positive diagnosis from your gastroenterologist, schedule an appointment with the dietician as quickly as you can. You will need their advice and support to navigate how to raise your child (and family?) gluten-free.

Good luck!

[bear6954]

My sons gi dr was able to tell us after the biopsy that he was positive. He was able to see it when he did the endoscopy. His gi dr still looked at it under the microscope and called up back to follow up in about 7 days.

[Nicholasmommy]

Ok, thank you guys! His biopsy should be this week or early next week. Just got the insurance taken care of. Can I take him off gulten after the biopsy? Is it possible for them to take a healthy part of the intestines and getting a false negative? Does that happen a lot?

Its really hard not knowing!

[ravenwoodglass]

If you are choosing to do the biopsy then you can start the diet as soon as the biopsy is done. You don't have to wait for the results. There are false negatives seen in biopsy but false positives on blood tests is very rare.

[prayin4achange]

If you test positive for the gene test, I've heard it doesnt necessarily mean you have celiac but just carry the gene. If you only took the gene test and it was positive, what other things could you possibly have besides celiac? Id appreciate any help thanks!!

Jenn

[Nicholasmommy]

So he finally has an appointmet for a consult with the GI doctor on the 7th. They better be willing to do the biopsy!!!!

[ravenwoodglass]

So he finally has an appointmet for a consult with the GI doctor on the 7th. They better be willing to do the biopsy!!!!

Make sure that he continues on a full gluten diet until the endo is done. Neither the endo, nor the blood tests, nor the gene testing is conclusive when the results are negative. If there is a positive blood test, in a child especially, that is a real good indication that the child has celiac. As far as gene testing goes there are many more celiac associated genes than most doctors look for. There are, I think, 7 that are recognized in other countries. When you are done with all the testing you choose to do then do a strict gluten free trial. You can start the day of the endoscopy and don't have to wait for the results. The response to the diet may give you an answer before you even get to the appointment.

In the meantime read as much as you can here and ask any questions you need to.

[tone317]

my doc just called this morning. bllod test came back weak positive whatever that means. cant get biopsy for at least a month. could i stay gluten free until im closer to biopsy date then just come off my diet for the biopsy?

[GottaSki]

I had my biopsy last week...doc at celiac center at UCSD emphasized not changing my diet until the procedure was over. He was even concerned that I was off gluten for one day when my primary had called me with the results from the tTG IgA...she told me to try it to see if I felt better, but luckily I found info on internet that said DON'T change your diet. Celiac Doc was also concerned that I not take advil or aspirin for the weeks leading upto the biopsy. It took 3 weeks to get in for the biopsy...hard to wait to change the diet, but I did enjoy some favorite gluten filled foods that last weekend! Gluten Free for 9 days now.

[gfb1]

I had my biopsy last week...doc at celiac center at UCSD emphasized not changing my diet until the procedure was over. He was even concerned that I was off gluten for one day when my primary had called me with the results from the tTG IgA...she told me to try it to see if I felt better, but luckily I found info on internet that said DON'T change your diet. Celiac Doc was also concerned that I not take advil or aspirin for the weeks leading upto the biopsy. It took 3 weeks to get in for the biopsy...hard to wait to change the diet, but I did enjoy some favorite gluten filled foods that last weekend! Gluten Free for 9 days now.

anytime you get any kind of endoscopy/colonoscopy or even the little camera in a pill -- you need to be sure not to take aspirin. aspirin has anti-clotting properties and, since the intestinal tissues are constantly being sloughed off (and out), there can be small, burst blood vessels that do not heal quickly and can appear both on-camera and in the biopsied samples. usually resulting in false positives.

advil/ibuprofen has anti-inflammatory action and can cause the camera to overlook irritated tissues and result in false negatives.

both aspirin and ibuprofen are fairly acidic and can cause gastric irritation. false positive...

tylenol/acetominophen is usually considered to be ok during these procedures -- but, check with your doctor. in fact, check ALL medications (over-the-counter and prescription), vitamins and herbals with your doc BEFORE the test.

note: aspirin/ibuprofen/acetaminophen/cox2-inhibitors all work via the their effect on different pathways in the arachidonic acid cascade... special thanks Sir John Vane!!!

[ravenwoodglass]

my doc just called this morning. bllod test came back weak positive whatever that means. cant get biopsy for at least a month. could i stay gluten free until im closer to biopsy date then just come off my diet for the biopsy?

Not if you want a positive biopsy. You need to be on gluten for at least a couple of months if you have been gluten-free for any length of time. If your reaction to gluten is such that the idea of a couple of months eating it is horrifying you already IMHO have your answer.

[gfb1]

Not if you want a positive biopsy. You need to be on gluten for at least a couple of months if you have been gluten-free for any length of time. If your reaction to gluten is such that the idea of a couple of months eating it is horrifying you already IMHO have your answer.

yup;

this is exactly my point in another post. some folks want/need a confirmed diagnosis. sometimes 'insurance' even requires it.

it really puts the individual in a bind. conundrum, between a rock and a hard place.

if you know what i mean....

unfortunately, celiac isn't quite as simple as the traditional medical-magic-bullet -- penicillin.

the standard medical thinking goes:

1. you have an infection.

2. you need an antibiotic.

3. penicillin works against *most* bacteria.

4. you get penicillin.

5 if cure? go to 7

6 if no cure, new antibiotic, go to 5.

7 if not cure, go to another doc or label psychosomatic (another flow chart)

8 cured? go home

most non-binary (yes or no) medical problems follow this route. probably accts for a large majority of medical problems (broken bones, sprains, colds, etcetcetc)

the difficulty is with complex, non-linear diseases -- and, by any account, celiac is one of these.

i would argue (from a genetic perspective) it is a threshold trait.

the most complex of all.

really bad personal insight: aside from my personal relationship with celiac disease via the person i love most in the world, it is this complexity that makes it most interesting....

;(

[lpjourney]

I was just diagonsed w/celiac, I had to have the biopsy twice because I wasn't eating enough gluten the first time around. I suspected I might have celiac and had greatly reduced gluten products, but did not totally elimated them in my diet overall for quite some time. I have to admit - I completely enjoyed eating the full gluten products everyday - knowing in the back of my mind that it might be the last chance before going gluten free. The day the 2nd biopsy was done, went totally gluten free.