To Biopsy Or Not On Our 3 Year Old

[Nebraskamommy]

My son has suffered from constipation for 2 years now. He's 3. We did allergy testing which came back high for wheat, gluten, dairy, eggs, beans. Also did celiac panel that came back with these results:

TTg iga <2 ( range 0-3 negative, 4-10 weak positive, >10 positive)
TTg igg 8 (range 0-5 negative, 6-9 weak positive, > 9 positive)
immunoglobulin a, an, serum is 43 ( range 44-189)

 

Our first Ped GI said 95% sure celiacs and do scope. The second Ped GI we saw said not Celiacs and he wouldn't scope.

 

Since we got these results in early Jan we have since eliminated milk and eggs from his diet and the constipation has went away. We also eliminated gluten for 3 weeks (didn't think we we going to scope) and his moods seemed to improved. We have since added gluten back in because we really want the scope to 100% confirm it's Celiacs and not just a gluten sensitivity.

 

So my question for other folks in similar situations are:

 I've read that milk intolerance can also damage the villi. Say we go forward with the scope and it shows villi damage, how can the dr tell it's from gluten and not milk?

 

It appears he has an IGA defiency so the blood tests are producing a false negative. However he was only one point outside the range for immunoglobulin a, an, serum so perhaps lab error?

 

  The dr did not order a DGP test, but i'm wondering if we shouldn't ask for that before we scope.

 

Thanks in advance for any advice you have.

[eers03]

My son has suffered from constipation for 2 years now. He's 3. We did allergy testing which came back high for wheat, gluten, dairy, eggs, beans. Also did celiac panel that came back with these results:

TTg iga <2 ( range 0-3 negative, 4-10 weak positive, >10 positive)

TTg igg 8 (range 0-5 negative, 6-9 weak positive, > 9 positive)

immunoglobulin a, an, serum is 43 ( range 44-189)

 

Our first Ped GI said 95% sure celiacs and do scope. The second Ped GI we saw said not Celiacs and he wouldn't scope.

 

Since we got these results in early Jan we have since eliminated milk and eggs from his diet and the constipation has went away. We also eliminated gluten for 3 weeks (didn't think we we going to scope) and his moods seemed to improved. We have since added gluten back in because we really want the scope to 100% confirm it's Celiacs and not just a gluten sensitivity.

 

So my question for other folks in similar situations are:

 I've read that milk intolerance can also damage the villi. Say we go forward with the scope and it shows villi damage, how can the dr tell it's from gluten and not milk?

 

It appears he has an IGA defiency so the blood tests are producing a false negative. However he was only one point outside the range for immunoglobulin a, an, serum so perhaps lab error?

 

  The dr did not order a DGP test, but i'm wondering if we shouldn't ask for that before we scope.

 

Thanks in advance for any advice you have.

A biopsy is really your call.  I will tell you that they used a different celiac panel for me because I am IGA absent.  I have no IGA whatsoever.  Your child is only 1 point out of normal range.  The IgA marker is surely adequate.  Perhaps adopt a holding pattern for now and do follow up labs in 6 months? You have elminated egg, lactose, and gluten.  You could always reintroduce them one at a time and measure the result.  Once you hit the culprit of constipation--there you go.  You have your answer, then you can pursue the corresponding diagnosis as you feel appropriate for your circumstance.  Just an opinion.  I am not a healthcare provider.  Good luck!

[Nebraskamommy]

Thank you. That is a good plan. I just want to know 100% if it's celiacs or just a gluten intolerance, as if Celiacs i plan to also get the rest of the family tested.

A biopsy is really your call.  I will tell you that they used a different celiac panel for me because I am IGA absent.  I have no IGA whatsoever.  Your child is only 1 point out of normal range.  The IgA marker is surely adequate.  Perhaps adopt a holding pattern for now and do follow up labs in 6 months? You have elminated egg, lactose, and gluten.  You could always reintroduce them one at a time and measure the result.  Once you hit the culprit of constipation--there you go.  You have your answer, then you can pursue the corresponding diagnosis as you feel appropriate for your circumstance.  Just an opinion.  I am not a healthcare provider.  Good luck!

[GottaSki]

I disagree.  This child has low IgA and should at least have DGPs run before removing gluten again.  Because he does have some IgA I think it wise to run both DGP-IgA and DGP-IgG.  While the IgA is likely be negative, why not run the complete panel?

 

I do agree that the biopsy is a choice you have, but make it after you have had a complete celiac panel and discuss the results with a GI that specializes or at least is well versed in Celiac Disease.

 

Removing gluten now could compound the frustration you are already experiencing with the celiac diagnostic process.

 

Oh...don't think I saw in your other thread...how long has he been back on gluten since the three week trial?  How long had it been before the tests you had run?

 

Edited to add:  I have not done extensive research on milk/dairy intolerance specifically, but I can tell you that celiac destroys the villi which prevents the production of the enzymes needed to digest dairy properly.  If you have a biopsies that show villious atrophy along with positive antibodies your son has Celiac Disease.  Whichever path you choose....you will want to trial dairy after six months gluten-free as many are intolerant of dairy until the damage caused by gluten heals.

[Nebraskamommy]

Tests were done in Dec when he was on a full gluten diet.

He was gluten, dariy and egg free Jan 3-Jan 23 because we didn't think we were going to do scope.

He's now back on a little gluten, maybe a few crackers a day or a slice of bread, but still off the dairy and eggs.

 

His behavior and moods were better from Jan 3-23, however i don't know if that is from the gluten or dairy or a combo.

 

I have a call into the Dr's office to get the DGP tests run, either way we will remove gluten again. I was hoping to get 100% confirmation for him so that he doesnt' have to go back on gluten in the future if/when he decides he wants to know for sure if he's Celiac.

[GottaSki]

Great.  Glad you'll have a full panel before removing gluten.

 

Also, be sure to have a full panel run again at six months gluten-free.  If the antibodies drop significantly and his symptoms resolve gluten-free that should be sufficient to diagnose Celiac Disease.

 

As for family members, you can ask your GP to order complete celiac panels for you based on your child's positive tTG.

[Nebraskamommy]

Great.  Glad you'll have a full panel before removing gluten.

 

Also, be sure to have a full panel run again at six months gluten-free.  If the antibodies drop significantly and his symptoms resolve gluten-free that should be sufficient to diagnose Celiac Disease.

 

As for family members, you can ask your GP to order complete celiac panels for you based on your child's positive tTG.

I talked to the Dr at Childrens over lunch and he said they consider kids IGA deficient if they have total IGA levels less then 10, since my son's level was just over 40 he said he's not IGA def and therefore said the IGA results are accurate. He said IGG levels are not reliable, ever. He said they are crap. He said given the negative results of the IGA labs he doesn't think my son needs his DGP drawn.

This Dr works at the Digestive Institute at Children's Hospital so i really want to trust/believe him, but i think we will go back on a gluten-free diet, see what happens in 6 months and then slowly start reintroducting gluten, milk and eggs, one at a time. 

[GottaSki]

Wow...that a GI at a children's hospital would call IgG celiac antibody tests crap and dismiss the need for the test that specifically indicates if the body is reacting to one of the peptides specific to the protein of gluten is...well...very sad and incorrect.

 

You've done all you can for now.  Do make sure you remove all gluten and keep a log of symptom improvement.

 

Good luck to you

[Nebraskamommy]

Wow...that a GI at a children's hospital would call IgG celiac antibody tests crap and dismiss the need for the test that specifically indicates if the body is reacting to one of the peptides specific to the protein of gluten is...well...very sad and incorrect.

 

You've done all you can for now.  Do make sure you remove all gluten and keep a log of symptom improvement.

 

Good luck to you

My thoughts exactly Lisa. I felt like I knew more just from reading this board then he knew and he's supposedley a specialst. I feel bad for the kids he sees whose parents take his word as the truth. When we walked in his office and showed him the IGG food allergy tests that our holestic dr ran he basically said "how do i say this nicely.....these tests are not accurate and no one in the medical profession relies on IGG results. Alternative drs are the only ones who use these."

[nvsmom]

If IgG based tests were crap, then they wouldn't exist. The DGP IgG test is one of the best out there for sensitivity and specificity, unlike the AGA IgA test which is not all that reliable.... Not all tests are created equal, nor are all doctors. I think your doctor is misinformed.

I believe that a casein intolerance can cause some damage to the villi but as far as I know, it can not cause a positive tTG IgG. On the other hand, lactose intolerance is often caused by celiac disease because the villi which make lactase (which digests milk sugars) are damaged by the autoantibodies (like ttg igg and ttg iga) that result from a celiac gluten intolerance. It would be quite a coincidence to have a positive celac test and damaged villi from a casein intolerance which is completely untreated to the celiac disease test. KWIM?

If scoping is not an option, I wish you luck with the gluten-free diet. I hope results are quick.

[Nebraskamommy]

If IgG based tests were crap, then they wouldn't exist. The DGP IgG test is one of the best out there for sensitivity and specificity, unlike the AGA IgA test which is not all that reliable.... Not all tests are created equal, nor are all doctors. I think your doctor is misinformed.

I believe that a casein intolerance can cause some damage to the villi but as far as I know, it can not cause a positive tTG IgG. On the other hand, lactose intolerance is often caused by celiac disease because the villi which make lactase (which digests milk sugars) are damaged by the autoantibodies (like ttg igg and ttg iga) that result from a celiac gluten intolerance. It would be quite a coincidence to have a positive celac test and damaged villi from a casein intolerance which is completely untreated to the celiac disease test. KWIM?

If scoping is not an option, I wish you luck with the gluten-free diet. I hope results are quick.

This dr even went so far as to say on the recap sheet that he gave us that we can reintroduce gluten, dairy and eggs, after I told him my son is was doing better being off those things.

I feel like he sort of wrote us off the moment we got there and mentioned that we had went to a holestic dr for the blood allgery tests. He was very taken back when I said we had seens another Ped GI and he recommened a scope. 

[nvsmom]

(hugs) If you don't get the scope (or more testing), just start the diet. Your son has more positive tests than my kids (who had none) but they are doing really well on the diet. No one needs a doctor's permission to change their diet for the better.  

[eers03]

I cannot disagree with the logic behind going ahead and running both panels just to be safe.  Good idea.  

[anand]

Pl. do hla dq typing through cheek swab... Along with all the other things u are planning....