Daughter age 6, trying to avoid an endoscopy if possible

[hmcdowell]

Hello and thanks to anyone who reads this and takes time to reply. My daughter has been suffering with all types of abdominal pain for months. We have done blood tests, results were weakly positive for Gliadan IgA (26 units and normal range up to 19), TTG IgA (7 U/M with upper limit 3 U/M for normal range) and TTG IgG  (7 U/M with upper limit 5 U/M for normal range). Eosoniphils were slightly high and platelets were slightly high. My husband and I are about to start her on a gluten free diet because I can't stand to see her in pain any longer. Currently we are scheduled for a endoscopy/biospy in a couple weeks but we are hoping her symptoms will improve with diet alone and we can cancel the procedure. Looking for opinions on her bloodwork (is celiac strongly indicated) and will it be an unnecessary risk to do the endoscopy if we begin a gluten free diet two weeks prior?

[trents]

Welcome to the forum, hmcdowell!

Even though the individual antibody test scores are not high, the fact that she is positive for several tests coming at the question from different angles lends strong credence to the probability of her actually having celiac disease. Children can be difficult to diagnose because their immune systems are under development and they will often not respond the same way to antibody tests as would adults. Just to give you a heads up, often on this forum we have parents report that their child was positive for one or more antibody tests but negative for the biopsy. The biopsy is suppose to be the gold standard for celiac disease diagnosis but that is more true for adults than for children. Most of us who have been living with celiac disease disease for some years will tell you that historically it has typically taken 10 yr. or more to arrive at a correct diagnosis and by that time our SB villi are trashed and a host of other spinoff medical problems have ensued. With children who are diagnosed with celiac disease there hasn't been time for severe damage to occur to their villi and, on top of that, their bodies are so resilient! The villi may be healing as fast as the damage is occurring.

The option for you with or without biopsy results would be to start her on a strict gluten-free diet and see if symptoms improve. That is where the rubber hits the road anyway. If her symptoms improve on a gluten-free diet then she either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). Just be ware that any future testing for celiac disease would require her to be on regular amounts of gluten for 6-8 weeks prior to testing for antibody testing or at least 2 weeks for endoscopy/biopsy.

[RMJ]

If you stop gluten prior to the endoscopy and no celiac damage is found you won’t know whether it is because she doesn’t have celiac disease or because you stopped gluten.

If you don’t have a clear diagnosis of celiac disease from the doctor it can be harder to convince others (relatives, schools, and your daughter herself when she is older) that your daughter needs to be gluten free.

I know you don’t want to see your daughter in pain for an extra two weeks, but it is probably worth it to not mess up the possibility of a clear diagnosis.

[hmcdowell]

On 5/19/2023 at 2:31 PM, RMJ said:

If you stop gluten prior to the endoscopy and no celiac damage is found you won’t know whether it is because she doesn’t have celiac disease or because you stopped gluten.

If you don’t have a clear diagnosis of celiac disease from the doctor it can be harder to convince others (relatives, schools, and your daughter herself when she is older) that your daughter needs to be gluten free.

I know you don’t want to see your daughter in pain for an extra two weeks, but it is probably worth it to not mess up the possibility of a clear diagnosis.

I’m having trouble understanding what else it could be with these test results. Our family is on board and we can control what the school does, etc.  when my daughter gets older she will have to make her own decisions but I think she would quickly find out that she is at the least gluten sensitive should she try to test those waters. I do see your viewpoint. Thank you for taking time to respond.

[knitty kitty]

@hmcdowell,

Since the blood tests point to Celiac Disease, continuing with a diet that contains gluten and having the endoscopy would be the preferred way to proceed.  

At least you will have a base line for comparison with future endoscopies should that be necessary.  

Stopping gluten now would lead to unclear endoscopy results, leaving you to second guess the diagnosis in future. 

Keep her on gluten for two more weeks, get the endoscopy.  

Starting a gluten containing diet in future is harder than continuing with it now.  To get the body inflamed again to the point that antibodies and small intestinal damage is obvious can take months.  Inconclusive test results in a future gluten challenge because the challenge wasn't long enough would leave you back at the point you are now.

The girl has come this far, let her go two more weeks on gluten, get the endoscopy.  Two more weeks is a blink of the eye compared to those of us who have been misdiagnosed for ten, twenty or thirty years while our bodies and health deteriorated.  

Keep in mind Celiac Disease is inherited.  Get a genetic test for the other family members.  

Having the genes for Celiac Disease means you have the potential to develop Celiac Disease.  But having celiac disease genes and seeing improvements in the gluten free diet are confirmation in my book.  

Edited June 4, 2023 by knitty kitty
Typo correction