Please help this Gma have hope

[Amhgma2022]

My dear Granddaughter has Celiac. After going gluten free since Nov 2021 she is still having nausea daily, some days stomach pain and anxiety.... she wasn't having anxiety before. Things are really affecting home and school, worse a school cause teachers not so nice. Her parents are convinced it's just going to take more time but I feel doctors could maybe do more, test more, something more. I'm just Grandma so I can't do but so much but give my opinion and pray and I'm afraid my opinion isn't so welcome lately

[Wheatwacked]

4 minutes ago, Amhgma2022 said:

I'm afraid my opinion isn't so welcome lately

I know the feeling. They get defensive I'll bet. You best effort might be advocating a nutritionist specializing in Celiac Disease. The next step after GFD is addressing any essential vitamin and mineral deficiencies caused by the damaged villi in the small intestine. Doctors are not taught vitamins, nutritionists are.

[trents]

You are in a tough spot granny! And it's one I can relate to. My wife is a borderline diabetic and one day she did the finger prick test for monitoring her blood sugar while our 7 yr. old grandson was watching. "What are you doing, grandma?," he asked. Of course he was afraid she was hurting herself with the finger pricker. She showed him how small and short the pricker was and talked him into letting her show him on his own finger that it doesn't hurt very much. Well, when my wife tested his prick result it was 220 when 100 is high end of normal. We tried to convince his parents that they should get him tested for diabetes but it fell on deaf ears. Keep praying! It's out of your hands.

But I would bet your granddaughter is still getting glutened somehow. And I agree with Wheatwacked. She probably needs a good gluten free high potency B-complex to correct vitamin deficiencies from the celiac disease, especially thiamine.

Edited March 9, 2022 by trents

[Amhgma2022]

At this point I can't do much. My Son is all about vitamins and supplements and wish someone would guide him. He's done lots of research. He would like her to take 1 spoon of Manuka honey a day but she won't take it. I feel so bad for her and My Son trying to do the best he can

[Wheatwacked]

 

[trents]

Also, some celiacs react to the protein in oats (avenin) and the protein in dairy (casein) the same way they do to gluten. Is your granddaughter still consuming these two food items?

[Amhgma2022]

55 minutes ago, trents said:

Also, some celiacs react to the protein in oats (avenin) and the protein in dairy (casein) the same way they do to gluten. Is your granddaughter still consuming these two food items?

No oats....if she gets dairy it's from cheese occasionally but she's drank lactose free milk for years

[notme]

how old is she?  i know we all think our kids/grandkids don't succumb to peer pressure, but having a different diet is probably tough for her to refuse foods all her friends are enjoying.   unsympathetic teachers are no help, i'm sure!  maybe find out what her buddies are eating at school and make sure she has similar foods that are gluten-free?  you could make her (ie) or purchase gluten-free cupcakes or cookies, etc that she could take to school (and get her a spiffy lunch bag!)  i would be anxious, too, if i knew i was doing something that was making me sick?  idk, that's tough........  are mom and dad totally committed or are they treating it lightly and letting her get gluten unknowingly maybe?

good luck.  my grandkids are completely sympathetic to my diet, and they eat gluten-free happily if it doesn't make meemo sick!  maybe jump on board with her and eat gluten-free diet with her?  it's all healthy if you eat clean (like, it won't hurt your diet unless you load up on processed stuff)

[trents]

1 hour ago, Amhgma2022 said:

No oats....if she gets dairy it's from cheese occasionally but she's drank lactose free milk for years

Lactose is the sugar in milk, not the protein (casein). Either can be a problem.

[Amhgma2022]

4 minutes ago, trents said:

Lactose is the sugar in milk, not the protein (casein). Either can be a problem.

Huh? So maybe milk even lactose free could be an issue for her? It's already difficult to feed her being a picky eater. She's only 10

[trents]

Just now, Amhgma2022 said:

Huh? So maybe milk even lactose free could be an issue for her? It's already difficult to feed her being a picky eater. She's only 10

Yes. https://meddocsonline.org/annals-of-pediatrics/milk-protein-induced-villous-atrophy-and-elevated-serologies-in-four-children-with-celiac-disease-on-a-gluten-free-diet.pdf

[Amhgma2022]

I'd like to request prayer for my Son to go with his gut to call my Granddaughters GI doctor to get her back for follow up before May and that they can see her very soon and care enough to dig deeper.  They need more help

[trents]

51 minutes ago, Amhgma2022 said:

I'd like to request prayer for my Son to go with his gut to call my Granddaughters GI doctor to get her back for follow up before May and that they can see her very soon and care enough to dig deeper.  They need more help

Prayer request noted.

[Wheatwacked]

On 3/9/2022 at 3:33 PM, Amhgma2022 said:

It's already difficult to feed her being a picky eater.

Try 100% Grass Fed milk. It tastes better and does not irritate my stomach the way regular milk does.

Even picky eaters will eat when presented with food they like. As a picky eater, please don't make eating one food contingent on another. I learned at an early age to just say no when asked if I was hungry.