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Doctor Won't Confirm

bellac

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bellac Newbie
bellac
Posted

Ok, my husband and I are in turmoil about what to do...

Here's a recap of our story. Our daughter's bloodwork and biopsy showed early stages/symptoms of celiac (she didn't have any symptoms - diarhea, etc). She's been on a gluten-free diet for 7 months. I just got back from the GI appt and he said based on these two things we are lead to diagnose celiac, however, he can not confirm it. He said we could put her back on a main-stream diet and see what happens (if symptoms arise she'll go in for another biopsy right awa, if no symptoms arrive then she'll go in for a biopsy in about a year). The idea of putting us all thru that again doesn't sound appealing, however, the idea of having an unconfirmed diagnosis and forcing my daughter to live her life as though she has celiac even though she may not doesn't sound too appealing either. We could do a genetic test and if it came back negative then she does not have it, however, if it comes back positive it's inconclusive....

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adab8ca Enthusiast
adab8ca
Posted

Ok, my husband and I are in turmoil about what to do...

Here's a recap of our story. Our daughter's bloodwork and biopsy showed early stages/symptoms of celiac (she didn't have any symptoms - diarhea, etc). She's been on a gluten-free diet for 7 months. I just got back from the GI appt and he said based on these two things we are lead to diagnose celiac, however, he can not confirm it. He said we could put her back on a main-stream diet and see what happens (if symptoms arise she'll go in for another biopsy right awa, if no symptoms arrive then she'll go in for a biopsy in about a year). The idea of putting us all thru that again doesn't sound appealing, however, the idea of having an unconfirmed diagnosis and forcing my daughter to live her life as though she has celiac even though she may not doesn't sound too appealing either. We could do a genetic test and if it came back negative then she does not have it, however, if it comes back positive it's inconclusive....

Hello!

I am not sure I understand-if her blood work and biopsy indicated Celiac, she has it. There are many Celiacs called "silent" celiacs that have little to no symptoms and the celiac disease comes out while they are being tested for something else. I had no GI symptoms, none of my Dr's can believe I have Celiac disease but it is what it is...Even if there are little to no symptoms, damage is still being done to the intestines and it may not remain silent forever. If there was damage during the biopsy, then it isn't necessarily early stages.

can you post a few more details about what the blood work and biopsy results stated?

txplowgirl Enthusiast
txplowgirl
Posted

There's no such thing as being a little bit pregnant. Either you are are you aren't. If the blood tests are indicative then that means it is. Simple, period. She is having an auto immune reaction and she has some kind of intestinal damage and may have other possible auto immune disorders that may develop as well as can develop possible cancer later in life as well as short stature. Please keep her gluten free.

tarnalberry Community Regular
tarnalberry
Posted

Yeah - she's got an immune response to it, and she's got intestinal damage from it: that means she has it!

The doc is probably wishy washy because he's in the "oh, the diet is so hard, unless her life is unmanageable with symptoms, she won't stay on the diet, so lets not label her". Bubkis. You, and she, are smarter than that!

bellac Newbie
bellac
Posted
  • Author

Hello!

I am not sure I understand-if her blood work and biopsy indicated Celiac, she has it. There are many Celiacs called "silent" celiacs that have little to no symptoms and the celiac disease comes out while they are being tested for something else. I had no GI symptoms, none of my Dr's can believe I have Celiac disease but it is what it is...Even if there are little to no symptoms, damage is still being done to the intestines and it may not remain silent forever. If there was damage during the biopsy, then it isn't necessarily early stages.

can you post a few more details about what the blood work and biopsy results stated?

I don't have all her numbers, one number was a 12 when 4 is good/normal. After her endoscopy the doctor didn't expect celiac to be an issue because everything looked healthy but biopsy results stated "early stages/symptoms".

I think we are going to ask the dr to re-do her bloodwork. She's been on a gluten-free diet for 7 months and at least if we have the bloodwork re-ran her numbers should be down/normal and that can help me and my husband feel more confident that her diet is doing something.

Please, no one think we are in denial of celiac - we can deal with it. There's just so much grey area, even the doctor says it's a grey diagnosis....

seezee Explorer
seezee
Posted

Is it possible for you to send the biopsy and lab tests to another GI doctor who specializes in celiac. I found that some doctors aren't too knowledgeable. There are a number of celiac disease centers at hospitals around the country. It seems that you could possibly send the lab work there or maybe talk to someone else. I can't quite get the logic of making a child ill and damaging their digestive system for months.

mstroud Rookie
mstroud
Posted

I agree that it sounds like she has positive test results and I don't understand why the doctor would hesitate to diagnose her. My son was 7 when he was diagnosed and his results were on the 'mild' side as well. He had definite symptoms (abdominal pain, dark circles, pain in his legs / joints) and they told us that his biopsy results showed early signs of celiac disease and his blood results were 'low positive.' They diagnosed him, but did say that his results were probably on the low side because we caught it early. He did have the genetic test and it came back positive as well.

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mushroom Proficient
mushroom
Posted

I am a little confused by this whole thread too. As I understand it, the celiac panel was not run because she was having any symptoms, but for some other reason??? That is why the results were a surprise to everyone? However, both results were positive, but because she was a silent celiac the doctor will not make a diagnosis. The reason the biopsy samples are taken is because the flattened villi often only show up under microscopic examination; i.e, they are not visible to the naked eye during the scope. But the microscopic exam showed early stage celiac, confirming the blood work. I am at a loss as to why anyone is doubting this diagnosis.

scarlett77 Apprentice
scarlett77
Posted

OK, my take on the situation is this: she tested positive for BOTH blood and scope. How can the doctor not diagnose based of those results? If it acts like a horse and looks like a horse it is a horse. My suggestion is to take the results of the positive labs and endoscopy to another GI and see if s/he can give an official diagnosis.

There is NO WAY in HECK that I would subject my child to an entire YEAR of gluten just for a diagnosis. That is ridiculous. I myself may be looking at making a decision to do a gluten challenge with my youngest and I'm still on the fence about it(leaning towards NOT though). I understand that you don't want to have her miss out if she isn't Celiac, but you have had 2 tests that are positive.

lovegrov Collaborator
lovegrov
Posted

Positive on both. She has it. Be glad you caught it before she got REALLY sick. I had to get to the point where I was hospitalized for 11 days and missed 10 weeks of work.

BTW, if your doctor truly said that he wanted her to go back to gluten and if symptoms arise he's do another biopsy RIGHT away, then he's showing his ignorance about celiac. Most experts agree you need to be eating gluten for many weeks, months, actually, before you could have an accurate biopsy.

richard

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