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Diagnosis For Children Of Celiac Parents

jberg

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jberg Newbie
jberg
Posted

I have celiac and my 10 year old son has all the symptoms of celiac, although his blood test came out negative. The Dr. does not want to do any further tests, because she said if he is at a normal weight and height for his age he could not have celiac, is this true? Should I push for a biopsy? His symptoms are so bad that he can't even go to school, we have to have a home hospital school instructor come to our house, until he feels better. The Dr. is putting it off by diagnosing him with IBS. We won't be able to get into a Gastro. Dr. until one month from now. We don't want to have him eat gluten free yet in case the Gastro. Dr. wants to do a biopsy, I don't want it to affect the results. but his regular Dr. Makes it sound not likely they will do a biopsy.

Any advice from anyone who has been through this?

Thanks Jberg

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CCR Newbie
CCR
Posted

I am far from an expert but I do have a 13 year old who was just diagnosed by biopsy after positive bloodwork. I am sorry you are having such a rough time. We had a straight line from pediatrician's positive bloodwork to gastro's positive bloodwork to confirmation by endoscopy. But I had been reading all along on this forum and I have heard people say that insurance coverage of a biopsy can be a problem if the right bloodwork isn't done first.

I do think you should persist and see the gastro as soon as you can (maybe there will be a cancellation) and get his/her opinion. Our gastro did not think the bloodwork ordered by the pediatrician was adequate. He ordered his own. Maybe your gastro will find something the pediatrician missed, something that will justify the biopsy, from the doctor's perspective as well as from the insurance company's perspective.

You are smart to keep your child on gluten until this is resolved. I wish you and your child the best of luck.

By the way, my son's only symptom was that he had lost 10 pounds between check-ups. He wasn't feeling ill at all and I thought he was just thinning down, getting ready to have a growth spurt or something. I don't think there are "typical" symptoms. The fact that your son feels terrible and that you have celiac would be enough for me to pursue it.

Carin

jberg Newbie
jberg
Posted
  • Author
I am far from an expert but I do have a 13 year old who was just diagnosed by biopsy after positive bloodwork. I am sorry you are having such a rough time. We had a straight line from pediatrician's positive bloodwork to gastro's positive bloodwork to confirmation by endoscopy. But I had been reading all along on this forum and I have heard people say that insurance coverage of a biopsy can be a problem if the right bloodwork isn't done first.

I do think you should persist and see the gastro as soon as you can (maybe there will be a cancellation) and get his/her opinion. Our gastro did not think the bloodwork ordered by the pediatrician was adequate. He ordered his own. Maybe your gastro will find something the pediatrician missed, something that will justify the biopsy, from the doctor's perspective as well as from the insurance company's perspective.

You are smart to keep your child on gluten until this is resolved. I wish you and your child the best of luck.

By the way, my son's only symptom was that he had lost 10 pounds between check-ups. He wasn't feeling ill at all and I thought he was just thinning down, getting ready to have a growth spurt or something. I don't think there are "typical" symptoms. The fact that your son feels terrible and that you have celiac would be enough for me to pursue it.

Carin

jberg Newbie
jberg
Posted
  • Author

Carin,

Thank you so much for responding. I am new to this forum. I think it is so great how everyone is so helptul with advice.

Hope your son is doing better now that he was diagnosed.

My Dr. does not want to pursue any tests since my son has not lost weight and is continuing to grow.

Do you know or does anyone else know if weight loss is a key factor. She seems to think that ithere is no way he has celiac if he is gaining weight fine (age 10 1/2). This is my biggest question.

CCR Newbie
CCR
Posted

I'm sorry I don't know more but I can tell you that in my case, I personally did not lose an ounce of weight and I still was diagnosed by biopsy as celiac. I had no symptoms beyond anemia. I don't know if it is different with children. I have a book that I have not read yet: KIDS WITH CELIAC DISEASE by Danna Korn. She says that

"a negative blood screening does not mean your child doesn't have celiac disease." She talks about genetic testing, too...do you know if your son carries the genes for celiac? That's a more expensive blood test that many doctors don't do routinely. Korn also discusses stool tests. I got the book from Amazon. You might find it helpful.

Carin

fedora Enthusiast
fedora
Posted

Maybe the GI doctor can see him sooner. If he is too sick to go to school then it is getting bad. Keep calling them and insisting that your son is ill and needs to be seen soon. I would think the dr. would do an endoscope if your son is sick anyways so he could do biopsies then. Hold your ground and do not let them convince you he does not need one. I was inadequately cared for as a child medically and I remember thinking I would die at times.

and remember no one can keep you from taking him off gluten. Once your done with testing, regardless of the outcome, doing a gluten free trial diet is a good idea.

good luck.

CCR Newbie
CCR
Posted

jberg, just wondering how you are doing. Did you get to see the doctor yet?

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bsiyatadshmayah Newbie
bsiyatadshmayah
Posted

Regarding weight loss, sometimes there is no weight loss because the intestinal damage is not extensive enough to stop the body from absorbing carbohydrates. In fact, I've read that the latest research points to more folks with celiac disease being overweight than underweight. Malabsorption often causes obesity. The body is craving the vitamins and minerals but is only getting carbs, so we keep eating.

CCR Newbie
CCR
Posted

Wow, that is really interesting. That sounds like ME!

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