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Now They Are Wondering If It Is Something More

ILOVEOMC

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ILOVEOMC Enthusiast
ILOVEOMC
Posted

My 12 year old son was diagnosed in March of last year and I thought had been doing well on gluten-free diet. His symptoms had gone away over the summer and early fall. About 6 weeks ago around Thanksgiving he started having tummy pain, D off and on, and at his year checkup with the GI yesterday they were concerned about his lack of weight and height gain which was mininal since March. Only 1 inch and 5 pounds. He is in the 15th percentile for weight and 50% for height. They drew blood for more testing and are having us do a three day write down everything he eats and how much while also collecting all stool those days and check for fat. They think he either isn't absorbing still or he isn't getting enough calories in his nutrition and diet. They also are doing a check for the genetic marker for cysitic fibrosis. All of this in scary and unnerving for us all here. He is home today with D and not feeling well. I thought things were going great until about 6 weeks ago and the Dr. appt. yesterday. Any feedback, tips, or advice is welcome. Thanks for letting me write this. It helps just to have a place to come to share my concerns,fears, and frustrations.

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Jnkmnky Collaborator
Jnkmnky
Posted

I hate that CF connection to celiac disease. Are you sure he's 100% gluten-free? No gluten in his shampoo, toothpaste, chapstick, did he lick envelopes at Christmas? If he was dx with celiac disease, then keep your focus on that. If it is CF, it should be a mild case if he's only showing signs now. But the gluten is where you should be looking the hardest.

Rachel--24 Collaborator
Rachel--24
Posted

I agree with JnkMnky, he may have gluten hidden in his diet somewhere.

I'm having the same problems with absorption and weight gain. My doctor says bacterial infections are common in celiac and they can keep the intestines from healing. They are running tests for that now to see if thats whats holding me back.

ILOVEOMC Enthusiast
ILOVEOMC
Posted
  • Author

Yes, I have called the companies about chapstick and Vaseline lotion and I know his soap and shampoo are gluten-free. There is always the possibility that he got gluten somewhere though. He even realized his fish food had wheat gluten in it and brought it to my attention so I feed the fish or he washed hands good afterwards.

Rachel, I am sorry you are having trouble still too. It helps though to know others struggle with this and make it seem less scary. Thanks both of you for responding and sharing your insight:)

Guest nini
Guest nini
Posted

I would lean towards hidden glutens in his diet... maybe something that he eats that used to be gluten free is no longer safe (for example Malt O Meal cereals used to have some safe ones, now they all have gluten, Kroger Corn Pops used to be safe, now they've added wheat starch, any holiday candy that even if it was a safe brand, if they are in holiday packaging or shapes they may have contained gluten...

Jnkmnky Collaborator
Jnkmnky
Posted

Open Original Shared Link

Interesting new research on how to treat Cystic Fibrosis... going back to nature, eliminating the phameceutical companies... not going to hear about this for too long in the 'natural'... going to have to hear about the Pricey lab, concocted saline solution....

Donaldson said he was surprised by the results because he doubted that saltwater -- or more precisely a 7 percent sodium chloride solution called "hypertonic saline" -- could work by itself. So he thought another drug would be needed.

"We found exactly the opposite," Donaldson said. "The patients who received just the hypertonic saline got all the benefit, while the patients who underwent pre-treatment with amiloride (a diuretic drug used to boost the hydration effect of the saltwater) had no improvement.

Quick.. write down the "recipe". They'll be charging you $100.00 a bottle for it in about a month and you'll never know from the labeling that it's a saline solution you could mix up on your own!

ravenwoodglass Mentor
ravenwoodglass
Posted
My 12 year old son was diagnosed in March of last year and I thought had been doing well on gluten-free diet. His symptoms had gone away over the summer and early fall. About 6 weeks ago around Thanksgiving he started having tummy pain, D off and on, and at his year checkup with the GI yesterday they were concerned about his lack of weight and height gain which was mininal since March. Only 1 inch and 5 pounds. He is in the 15th percentile for weight and 50% for height. They drew blood for more testing and are having us do a three day write down everything he eats and how much while also collecting all stool those days and check for fat. They think he either isn't absorbing still or he isn't getting enough calories in his nutrition and diet. They also are doing a check for the genetic marker for cysitic fibrosis. All of this in scary and unnerving for us all here. He is home today with D and not feeling well. I thought things were going great until about 6 weeks ago and the Dr. appt. yesterday. Any feedback, tips, or advice is welcome. Thanks for letting me write this. It helps just to have a place to come to share my concerns,fears, and frustrations.

Please also check for hidden gluten in school, in particular art classes, paints and clays and glues or even in chalk for the boards. If he eats in the cafeteria send some extra napkins, (perhaps damp in a plastic bag) so he can wipe where he puts his food down. I really hope they find out why he is doing so poorly lately. Best wishes

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