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Confused By Gi

zapsmom

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zapsmom Rookie
zapsmom
Posted

MY DD had her scope/biospy about 4 weeks ago. We got the results back 2 weeks later...it came back negative. Today, we get a call from the GI specialist nurse to tell us that DD's vitamin A nad D levels were low. Don't know it has taken 6 weeks to call and tell us this when it was a month ago she has the biospy nad the blood work was done at the end of March. Anyway, so the nurse tells Dh(I was at work when she called) that he wants her ot start taking a multivitamin which is gluten-free. So that is where I am confused...Why shoulf the multivitamin be gluten-free when she is not gluten-free? Does this make sense to anyone else? Can someone explain this to me?

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tom Contributor
tom
Posted

Yipes you're right I can't find any sense in that at all. Could the nurse think there WAS a celiac dx? Is she reading the right chart? Aargh who knows . . .prob only explanation will have to come from Dr's office.

pricklypear1971 Community Regular
pricklypear1971
Posted

Go get her medical record, pronto.

Read them.

It may just be a simple case of misunderstanding (perhaps the nurse read the part that says she was screened for Celiac and assumed it was positive). Who knows.

Get her records.

Takala Enthusiast
Takala
Posted

When I saw your back posts, your daughter had a positive blood work test result, symptoms consistent w/ celiac, type 1 diabetes, and hypothyroidism.

Now the vitamin levels are low.

This is all consistent w/ celiac, except that the biopsy was supposedly negative ? Who called you on that, and what did they say, but what does it actually say on the report ?

Not unusual for a biopsy in a child to not come back positive for damage.

You need to call this office back and talk to the GI doctor, in person, not just thru the nurse (but can start with her) and find out whether or not he is recommending a gluten free diet, with or without the official diagnosis, to see how she responds to it.

And you need to get the test results, IN WRITING, from them, because you will be needing them down the line.

Don't be surprised if your daughter ends up diagnosed eventually. Type 1 diabetes and thyroid disease are genetically linked to celiac. Weight loss and GERD are classic symptoms.

Wouldn't surprise me that the nurse had a bit of a ping or twinge of intuition, and this was serendipity.

zapsmom Rookie
zapsmom
Posted
  • Author

When I saw your back posts, your daughter had a positive blood work test result, symptoms consistent w/ celiac, type 1 diabetes, and hypothyroidism.

Now the vitamin levels are low.

This is all consistent w/ celiac, except that the biopsy was supposedly negative ? Who called you on that, and what did they say, but what does it actually say on the report ?

Not unusual for a biopsy in a child to not come back positive for damage.

You need to call this office back and talk to the GI doctor, in person, not just thru the nurse (but can start with her) and find out whether or not he is recommending a gluten free diet, with or without the official diagnosis, to see how she responds to it.

And you need to get the test results, IN WRITING, from them, because you will be needing them down the line.

Don't be surprised if your daughter ends up diagnosed eventually. Type 1 diabetes and thyroid disease are genetically linked to celiac. Weight loss and GERD are classic symptoms.

Wouldn't surprise me that the nurse had a bit of a ping or twinge of intuition, and this was serendipity.

I got the call regarding the scope from the nurse who said that the dr said she was all good. No signs of celiac and all was negative so no celiac. She would be retest through blood work in 3 yrs. She didn't need to be gluten-free. As for the report, we don't get report from dr's here. Only our ped and the Diabetes dr will get this report so maybe I will call them as well. Calling dr or maybe several drs today to get this all unconfused!

frieze Community Regular
frieze
Posted

I got the call regarding the scope from the nurse who said that the dr said she was all good. No signs of celiac and all was negative so no celiac. She would be retest through blood work in 3 yrs. She didn't need to be gluten-free. As for the report, we don't get report from dr's here. Only our ped and the Diabetes dr will get this report so maybe I will call them as well. Calling dr or maybe several drs today to get this all unconfused!

where is "here"? Is it law or custom that you don't get results?

zapsmom Rookie
zapsmom
Posted
  • Author

where is "here"? Is it law or custom that you don't get results?

I am in Canada. I am not should if it is law or custom. I will have to ask. I did find out that it was a dietican calling to inform us on her blood work results. She told me that the results were from before she has the biospy so b/c she doesn't have celiac then the vitamin doesn't have to be gluten-free.

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Ollie's Mom Apprentice
Ollie's Mom
Posted

If she had a positive blood test I'd disagree about her being "all good". Sounds like she has celiac to me.

Btw if you are in Ontario, you can most definitely get copies of the test results. You just need to request them.

Mizzo Enthusiast
Mizzo
Posted

Get the blood work results in hand for your sanity. Dbl check with another Dr. DO NOT go by a dietician's phone call.

There is no reason you cannot try going gluten free to see if it helps. If so, report results to GI and ask for Biopsy (after going back on gluten ).

good luck

MitziG Enthusiast
MitziG
Posted

A positive blooc test is positive for celiac. False positives are unheard of. Your daughters body is making antibodies against gluten- that is what the tests are checking for. There is only one reason it does that- celiac. A good dr would have diagnosed her with bloodwork alone. The OLD thinking was that a biopsy was needed to "confirm"

They may have taken just one biopsy, or they may have taken from a "healthy" spot, or the person who read the biopsy may not be experienced. False negative biopsies are very common.

You should take her gluten free, regardless of the doctors dx. You can spare her a lifetime of serious health issues by doing so.

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