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Strict Gluten Free Diet And Still Elevated Levels


mommysarah713

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mommysarah713 Rookie

My 4-year-old was diagnosed in early June and it has been a roller coaster. We have her on a very strict gluten free diet, but we keep finding hidden sources, such as stickers and her shampoo and conditioner. For a 4-year-old, its impossible to keep hands and things out of her mouth. So everything she touches is a possible danger it feels like. Well, we just had follow up blood work, almost 6-months later and we're very disappointed, yet not surprised. Although slightly lower, her levels are still very high. I have no idea what else i can do to help my daughter.

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ang1e0251 Contributor

You can give her time and your patience. Those levels take a long time to come down. If they are coming down, you are making progress. They just don't fall to very low right away. Just focus on her diet like you have been and it will be OK in the end. You're such a good mom to care for her in such a dedicated way. She is doing well.

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  • 1 month later...
TerryK Newbie

It took almost 2 years of very strict diet for my daughters blood work to be normal. No one told me it could take awhile so I drove my self insane, cooking food in her own pots/pans, not putting any of her dishes in the dishwasher. Everytime her blood work would come back high I would start logging everything she ate. Her numbers were very high to start & I now believe it just took awhile for her body to adjust.

My 4-year-old was diagnosed in early June and it has been a roller coaster. We have her on a very strict gluten free diet, but we keep finding hidden sources, such as stickers and her shampoo and conditioner. For a 4-year-old, its impossible to keep hands and things out of her mouth. So everything she touches is a possible danger it feels like. Well, we just had follow up blood work, almost 6-months later and we're very disappointed, yet not surprised. Although slightly lower, her levels are still very high. I have no idea what else i can do to help my daughter.

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taweavmo3 Enthusiast

It could also be helpful to make a list of the most common things she is eating, and we might be able to tell you if there are any hidden sources of gluten. I know there are plenty of items out there that should be gluten free, but still cause problems.

For my daughter, we have had to cut out alot of processed foods, and go to a more whole foods diet. She's just really sensitive, and little bits of cross contamination add up over time. Frito Lay chips were something we finally had to cut out for example....she does fine with a little every now and then, but not on a regular basis in her lunch like we were doing. So, that might be something to look into if her numbers continue to remain high. Hope that helps, keep doing what you are doing, and you will figure it out!

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