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SGWhiskers

What Would You Tell This Parent?

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I have a friend who's child has been sick. She is medically literate and we have an open dialogue about my Celiac. Will you read a little of her last e-mail to me with her interpretation of the Rhumatologist's information. Does it sound like the doctor or my friend are missing a celiac diagnosis? Additionally, my friend's mother has Type 1 diabeties and the child has been experiencing traveling arthralgias. I don't know about the stool.

According to her, the rhumatologist said the early grade school child has "basically a stress induced protein malnourishment coupled with likely vitamin D deficiency. He said that when [child] grew 4 inches this summer, coupled with healing from [child's surgery] at the exact same time as not being able to eat properly [child]started to metabolize muscle and bone toward the goal of growing...this results in skewing a lot of the blood work to indicate an autoimmune response as well as to show an inflammatory response. So [child] is on a special diet for 2 mos (basically kiddie atkins: few carbs, light fruit, no dairy, high animal protein, low fat) " additionally, "(he does want [child] on light gluten because gluten increases the inflammatory response to the muscle destruction [child] has, but he isn't naming gluten as the culprit, but rather an accessory to the crime.)"

I told her I HIGHLY suggested she get the child's celiac panel drawn now before the child is placed on a gluten lite diet. As parents of celiac children, do you have any advice or experience I can pass along to her? Sometimes, I think that everyone has celiac, so let me know if you think I'm overreacting to this. If you think I'm on target, let me know, because I'm going to be passing on the link.

Thank you parents.

SGWhiskers

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I feel like you. I see celiac disease everywhere. I know my family gets fed up with it. But I think you gave them good advice. What can it hurt? This child is probably having blood drawn every little bit anyway so to run another test on the blood is no problem.

The problem I foresee is that even if he tests positive this dr will write it off according to his dx. I wonder what he will do when the time comes to challenge the gluten if the child reacts. A food diary seems in order to follow up on the boy's progress and reactions to his diet.

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I'm hoping that if I can convince the mom to get the blood testing done and request the lab results, then she can have that information to make an educated decision of her own about a gluten free diet. I'm also harboring the secret hope that enough people respond to this post one way or another that I can direct her here for some mom to mom advice.

Thanks for your advice.

SGW

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I think it would be irresponsible not to run a celiac panel. It's a simple blood draw. The drugs for RA are incredibly hard on a young body. The same is not true of a gluten-free diet. It's the exact opposite actually. I find it difficult to believe that the dr in question doesn't want to do more to protect this child's health. Like I said, it's a BLOOD DRAW!

With only a little digging the mom will find out herself that celiac signs are there. I wish her and her child the best.

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