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Complications Of celiac disease

aprilleigh1624

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aprilleigh1624 Newbie
aprilleigh1624
Posted

Hi everyone. My daughter (2.5 yrs old) was diagonsed in may of 08 and we went on a gluten free diet asap. Almost 8 months later she is still having diarrhea and joint pains. We have had numerous amounts of blood work done recently and her ped GI doctor is thinking about taking her off all solid foods and putting her a formula... she is 2 1/2 years old!! I think the formula was called peptomid jr (dont have the correct spelling yet) Has anyone heard of this before? I am so lost on what to do and I feel so bad for her. I really want to get a second opnion on her celiac disease but she is already going through Nationwide Childrens Hospital in Columbus Oh. I dont know where else to go. can anyone give me any advise on what to do. SO CONFUSED!!!

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Guest celiac mum
Guest celiac mum
Posted
Hi everyone. My daughter (2.5 yrs old) was diagonsed in may of 08 and we went on a gluten free diet asap. Almost 8 months later she is still having diarrhea and joint pains. We have had numerous amounts of blood work done recently and her ped GI doctor is thinking about taking her off all solid foods and putting her a formula... she is 2 1/2 years old!! I think the formula was called peptomid jr (dont have the correct spelling yet) Has anyone heard of this before? I am so lost on what to do and I feel so bad for her. I really want to get a second opnion on her celiac disease but she is already going through Nationwide Childrens Hospital in Columbus Oh. I dont know where else to go. can anyone give me any advise on what to do. SO CONFUSED!!!

Hello my daughter is 6 years old and was diagonsed about 3 years ago and is currently on tube feeding with no solid food at all and has been this way for two years now, so I know what you must be feeling I really do . All I would say is I was adviced by doctors in the UK and that before solid food was taken away you should be on a gluten free diet for at least a year to give the villi enough time to grow back in the gut and a biopsy should be taken again to see if there is any sign of repair and then as a last resort the food is taken away to give the gut a complete rest.

Unfortunately for my daughter 2 years after a gluten free diet no improvement was made . I hope this is not the case for your daughter and I really hope your daughter can remain on solid food Good luck keep going it will be alright.

ShayFL Enthusiast
ShayFL
Posted

Please dont take this the wrong way, but are you sure she is 100% gluten-free. No sneaks at pre-school or Grandma's house? You arent feeding her Wellshire Kids Gluten Free Chicken Bites? It was just discovered they are NOT gluten-free and actually have a high level. No skin care, shampoo, toothpaste, chap stick that you didnt make sure is gluten-free?

Do you have a "mixed" home? Do you use regular flour in your kitchen? That stuff gets EVERYWHERE and CC is inevitable. If you have a "mixed" home does she have her own toaster, pots and pans, wooden spoons and cutting boards? Her own butter dish, mayonaise, jelly, peanut butter jar and anything else that might harbor bread crumbs from someone else in your home (double dipping)?

Have you checked ALL of the processed foods she eats to make sure gluten-free?

Does she still eat DAIRY? If her villi were damaged, then the tips (where dairy is digested) may still be damaged as she continues to eat dairy (they will stay damaged this way). Many Celiacs have to completely eliminate dairy at least for 6 months or so to allow the villi to heal. Once she is ALL better and no D, you can try to re-introduce dairy (but NEVER gluten).

Some people react to corn just as they do gluten. Ditto for soy.

I wouldnt put her on a tube until I covered ALL OF THE ABOVE. Just me.

dilettantesteph Collaborator
dilettantesteph
Posted

If they do the right blood tests you can tell if she is still reacting to gluten. If so you have to try harder to remove all gluten from her diet. Wellshire farms are not the only "gluten free" that isn't. I can't send away for expensive tests, so I test with my body and getting sick for a week or longer. Be really careful about anything that is processed in a facility that also processes wheat. It doesn't always say on the label. Look for foods made in dedicated facilities. Not even all of them are safe because you have to wonder where they get their ingredients. Try sticking mainly to for sure things like fresh fruits and vegies, rice, quinoa, dairy. Maybe you can fix things before having to resort to an all formula diet.

sarahelizabeth Contributor
sarahelizabeth
Posted

Did they do an upper gi scope?? Going formula only sounds like a treatment for an EOS and not celiac.

My son takes Petamen Jr for milk/soy allergies and failure to thrive. Its been a GODSEND for him.

ETA... we live in Cols area and go to Nationwide. We've been veyr happy with my son's care there but if you are looking for a second opinion I've heard GREAT things about Cincinati.

bear6954 Apprentice
bear6954
Posted

My son also still had the runny poops after going 100% gluten free. His bottom was so sore again. I thought that I was cross contaimanting him somehow and I racked my mind for about 1 week. I even bought his own butter tray and toaster oven. I started to keep a diary of what he ate, at what time and when he pooped. I also described the poop and times he went. I ended up limiting it to either tomatoe sauce or sugar. It was sugar. I have him 2 oz of apple juice and hello runny, burning poops. He use to drink koolaide with sugar to help with the calories he needs. This also bothered him. We live in NC so he drinks a lot in the summer. He now drinks crystal light and we have no more problems. It limits his calorie in take, but to much sugar has been linked to slow growth anyway. He is below the 3% tile for height, but has started to grow about 1" a month once we got the poops under control....again. Who would of know that something that is suppose to be good for you (fruit) could cause him so much harm. I should have learned my lesson with gluten! Good luck.

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