Tested Positive - Should We Change Diet Day 1?

[DadCares]

Our 7 year-old daughter has type 1 diabetes. Today, we received blood work results suggesting she is positive for celiac. We have an appointment with a gastro doctor Tuesday. We were told by her normal doctor and by a friend NOT to change her diet before that appointment because it might prevent the gastro from confirming whether or not she has celiac. This is counter-intuitive to me. I was prepared to go straight to the grocery store to purchase new foods in order to stop additional potential damage we might be doing to her body until we find out we had a false positive. What do you recommend? Should she continue her previous diet as normal for the next few days?

[Mother of Jibril]

If the gastro is planning to do an endoscopy, then your friend is right... your daughter needs to keep eating gluten for a few more days. Right after the appointment she can go gluten-free! I know it's hard, but a few more days won't make much of a difference.

You're a good dad for wanting to go shopping right away. Some parents are worried about the hassle or get stuck in denial... not understanding how autoimmune disorders work.

[DadCares]

If the gastro is planning to do an endoscopy, then your friend is right... your daughter needs to keep eating gluten for a few more days. Right after the appointment she can go gluten-free! I know it's hard, but a few more days won't make much of a difference.

You're a good dad for wanting to go shopping right away. Some parents are worried about the hassle or get stuck in denial... not understanding how autoimmune disorders work.

I appreciate your quick reply. Thank you!

[tom]

If the gastro is planning to do an endoscopy, then your friend is right... your daughter needs to keep eating gluten for a few more days. Right after the appointment she can go gluten-free! I know it's hard, but a few more days won't make much of a difference.

On the other hand, it's not like the villi can heal in just a few days.

And since it's 1st appt w/ the GI, it seems unlikely an endoscopy will happen that day.

I suspect it'd be a consult & the endoscopy would get scheduled, hopefully for some day not too far in the future.

It's really such a shame that the blood results aren't a diag in themselves - maybe hers were borderline? - since endoscopies can be so hit-or-miss.

Many stories I've read of ppl told they were negative on their 1st couple endoscopies/biopsies, only to be finally told a endoscopy was positive once the damage is EASILY seen or the biopsy luckily taken from the right spot.

Just read another post yesterday about how there are 4 stages of villi damage but only stages 3 & 4 are found w/ endoscopies.

Best of luck w/ your daughter DadC.

[caek-is-a-lie]

Yeah I'd just keep her eating gluten until you have the biopsy. It won't do much more damage than has already been done and better to get a positive endoscopy to prove she has it and then go gluten-free for life afterwards. It will help her be taken seriously by doctors in the future. I wish I could be so lucky as to have that chance. Best of luck to you and I hope your daughter gets better!!

[Amyleigh0007]

It's very, very difficult to have your child continue to eat food you know is harming them, but to get accurate results she must eat gluten. Something you could try between now and the scope is let your daughter have a free for all with her favorite foods. We let my son have what ever he wanted for those two weeks knowing that soon he would have to give up all those foods. He had McDonalds for breakfast, lunch, and dinner one day! He had Tyson chicken nuggets for breakfast and cookies and chips for lunch. He had a blast and by the time he had to give up those foods he was kind of sick of them!

[bear6954]

My 2 1/2 yr old tested negative for celiacs, but the dna test said he had the gene. My son was very malnurished and it was going to take a few months to get the scope done. Our Ped GI dr told us to go gluten free for the most part, but to feed him gluten about once a week. That is what we did and his scope tests still showed damage, but his symptoms were greatly reduced. Once we went 100% gluten fee his symptoms went away.

[bear6954]

My 2 1/2 yr old tested negative for celiacs, but the dna test said he had the gene. My son was very malnurished and it was going to take a few months to get the scope done. Our Ped GI dr told us to go gluten free for the most part, but to feed him gluten about once a week. That is what we did and his scope tests still showed damage, but his symptoms were greatly reduced. Once we went 100% gluten fee his symptoms went away.

I believe it was $395.00 per person, but our ped gi dr and our family dr submitted it to our health insurance and they covered the cost. I dont remember the name of the lab, but I can find out if you need it.