When To Restart Gluten For Endoscopy

[jaggirl47]

I am adding the link to my other thread at the bottom of this for easier access to the back story.

 

GI yesterday withdrew several vials of blood for more testing. He said, regardless of the results from the blood tests, that he feels my son is having some sort of malabsorption issue whether it is Celiac or something else. However, he also said there is no definitive answer on when to restart my son on gluten. We have another appointment in early April to go over all of the labs from yesterday and to schedule his endoscopy for sometime in later April/early May. He said I do not need to place him back on gluten until after the next appointment. I'm confused. Shouldn't he be back on gluten at least 6 weeks prior to endoscopy? I do not want to risk anything being missed. What do all of you recommend?

 

Here is the link to my original thread.

https://www.celiac.com/forums/topic/111049-need-help-for-possible-celiac-child/

[kareng]

Open Original Shared Link

[jaggirl47]

So this says 2 weeks with a half of a slice of bread and others say 6-8 weeks with 2-4 slices. GI says it basically doesn't matter. So confusing!

[nvsmom]

I've seen 2-4 weeks for the endoscopy, and anywhere between 1/2 to 4 slices of bread per day with 1-2 being the average.

 

If you go with a shorter gluten challenge, have him eat more gluten.  If you are doing the 4+ weeks, then you can go with less.... But no guarantees. The endoscopy can miss up to 20% of celiacs, and this seems to be because of the way their celiac disease presents (like some with dh never get any intestinal damage) or because less than 6 samples were taken.  Early celiac disease will cause some negative biopsies too.

 

Good luck.

[jaggirl47]

Thank you. He wants to do biopsies on the esophagus and stomach as well to check for other possible disorders. He isn't as concerned with the negative blood tests as the pediatrician because he is aware of the possibility of seronegative Celiac. I just want to make sure my son get the best opportunity of diagnosis if he does in fact have it.

[nvsmom]

If the biopsies are negative, and you still suspect gluten, it may be non-celiac gluten sensitivity (NCGS)  which presents with most of the same symptoms as celiac disease.  Consider going gluten-free for a few months regardless of the results - It could help.

 

Best wishes.  

[jaggirl47]

Does NCGS have the growth issues as well? Going off gluten he grew just over 3/4" within a few weeks. I am interested to see if he stops growing again when we restart gluten this weekend.

[nvsmom]

I'm not sure.  I know it causes inflammation which can cause deficiencies and that can affect growth, but I'm afraid I don't know much on that.  I'll try to look into it but I think it will be tough to find since so little is known about NCGS.

[jaggirl47]

I have a feeling it will be tough to find info lol.

 

I know my son's endocrinologist is upset we are going to GI. I ran into him when we were at the appointment and all he said is he doesn't know why we have a GI appointment because he already ruled out celiac. All I said is I would rather not leave a stone unturned because the current plan hasn't worked.

[murphy203]

Good for you, jaggirl - why should a medical professional object to a second opinion?? Makes no sense to me. And I am seronegative, in full disclosure... ;-)

[jaggirl47]

The GI doc thinks there is a good chance my son is seronegative. Just by looking at my son the GI said if he doesn't have celiac he thinks there is a different malabsorption issue we are looking at. When you look at an almost 14 year old boy going into high school next year that weighs in at 78lbs and just hit 4'10" where every rib and vertebrae are clearly visible there is something going on. Since going off gluten we just got him back up to the 4th percentile in growth when he starting initially above the 95th.