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Elementary Child With Celiac - Advice Needed

daenglish

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daenglish Newbie
daenglish
Posted

We have an elementary child with celiac. Even though he has been on a gluten free diet for four years, he still does not seem to be improving in weight gain, size. His stools are still loose. He had an endoscopy 8 wks ago and his intestines were inflamed and bled wherever the doctor touched them. He went on steroids for 2 months and had another endoscopy but he has not improved. All his vilia (sp?) are flat. The doctor, a pediatric enterologist, is recommending immune suppression drugs. Does anyone have advice for us?

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Ursa Major Collaborator
Ursa Major
Posted

Has anybody looked at a possible soy intolerance in addition to gluten intolerance? Soy can also cause blunted villi in susceptible people.

I think things like immunosuppresive drugs should be a last resort after testing for EVERYTHING else first.

Also, are you absolutely sure he is gluten free? He may be one of those hypersensitive people, who react to minuscule amounts of gluten. The Codus Alimentarius is a curse for people like that, as the so-called gluten free foods will stop them from recovering.

Before trying dangerous drugs, you may want to try a very basic diet of foods that are very easy on the stomach and bowels, and that don't contain anything known to cause allergies in lots of people.

Don't feed him anything raw for a while (that includes fruit.......I couldn't tolerate any raw food for about six months after going gluten free, I am okay with them now most of the time), well cooked everything is good. Start with some soft meat and vegetables. Rice may or may not be okay at this stage. Apple sauce is good, soup is good.

Also, for a bit stay away from any of the gluten-free replacement foods, they're hard to digest. Don't give him ANY dairy at all for at least six months.

I hope he will improve soon!

flagbabyds Collaborator
flagbabyds
Posted

First of all, welcome.

I do agree with the soy intolerance. I would also say just try plain meats, rice, corn, maybe veggies. Make sure that all his meds are gluten-free, and all shampoos, lotions, and anything coming in contact with him. Are there any ways of CC in your house, make sure he has his own counter, toaster, and other stuff. make sure there are no chances of cross contamination.

hope he feels better soon!

Guest nini
Guest nini
Posted

you've gotten some great advice so far, I would avoid immunosuppresive treatments unless as a last resort... go back to the basics, keep everything really really simple, he may have to avoid dairy for a while and corn can also be difficult to digest. Make sure he is 100% gluten free with no cross contamination. Keep a food journal and log any and all responses or lack of response to any and all foods he eats. Be careful of juices too, some juices have artificial flavorings that can be from a gluten source, make sure all his personal care products are gluten-free, chap stick, sunscreen, toothpaste, vitamins, lotion, shampoo... also look out for play dough and other art supplies. Play dough is a NO NO... yeah I know they don't eat it (for the most part) but kids don't realize when they touch something and then put their fingers on their face or in their mouth that this could be a problem. Stay away from processed foods for the time being and see if he may be having a hard time digesting processed foods. Good luck with it all.

My daughter is in kindergarten and I know how difficult it can be to get them to change their ways, but remember, you can find good fun food that he will eat and hopefully you will be able to get him better quickly.

Keep us posted please.

Guhlia Rising Star
Guhlia
Posted

Also, you'll want to be sure that the surface he's eating his lunch on is extra clean. We've found that just because you can't see gluten, doesn't mean it's not there. Maybe you could pack a sanitizing wipe in his lunch box so he could wipe the table off and his hands off before eating.

Good luck! I hope you get some answers soon!

daenglish Newbie
daenglish
Posted
  • Author
We have an elementary child with celiac. Even though he has been on a gluten free diet for four years, he still does not seem to be improving in weight gain, size. His stools are still loose. He had an endoscopy 8 wks ago and his intestines were inflamed and bled wherever the doctor touched them. He went on steroids for 2 months and had another endoscopy but he has not improved. All his vilia (sp?) are flat. The doctor, a pediatric enterologist, is recommending immune suppression drugs. Does anyone have advice for us?

Thank you all for sharing your insight. I know my son is very sensitive. He does play with play dough so it sounds like that should be eliminated. Also, we do not have a separate food counter for him. I caught some other ideas, too. What is Codus Alimentarius? I did eliminate dairy for awhile but did not try the soy. His worse time is during the night. He is up and down 3-5 times a night. If we do go to a very simple diet, how long should it take for his stools to become solid?

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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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