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Update On Dd's Scope

strawberrygm

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strawberrygm Enthusiast
strawberrygm
Posted

she did great!

she was a little more drowsy afterwards than when she was for previous surgeries, but those were 5 yrs ago.

doc said all looked great.

they did an endoscopy and colonoscopy.

he said he biopsied 4-6 samples, and i can call friday to get the results.

i had planned on starting the gluten free diet today following surgery, but doc said to wait until we got the results from the biopsies.

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Ursa Major Collaborator
Ursa Major
Posted
she did great!

she was a little more drowsy afterwards than when she was for previous surgeries, but those were 5 yrs ago.

doc said all looked great.

they did an endoscopy and colonoscopy.

he said he biopsied 4-6 samples, and i can call friday to get the results.

i had planned on starting the gluten free diet today following surgery, but doc said to wait until we got the results from the biopsies.

I don't see any reason whatsoever for waiting until after you get the results to start the gluten-free diet. Will he tell you that she should keep eating gluten if the biopsies are negative? And what is it, four, five or six samples? Two more can make the difference between a negative and a positive biopsy.

Anyway, even if ALL the tests are negative, they can never rule out celiac disease. Your doctor cannot tell you what to feed your child, it is your choice.

Emilysmomma Rookie
Emilysmomma
Posted

I just wanted to let you know that we just did this a week ago, last week on Monday in fact. The doctor, which by the way we saw for all of 5 minutes before the procedure for the first time, came out and talked to us afterwards and said everything went well and it all looked good. He also told me to call in 4 days for the results, I think he really thought Emily didn't have Celiacs. Then the Nurse Practitioner who is who we have dealt with the whole time called Wed, which was 2 days afterwards and confirmed that Emily has Celiacs. I said to her, well at least she doesn't have any damage yet, she responded 'Yes she does have damage, it shows up in the pictures - flattening of the villis, she just doesn't have any lesion yet.' From what she said they can't see things as well with the scope as they can with the pictures that are taken. Just sit tight and wait for the results, I bet you will hear something sooner than Friday if she has it though!

Worriedtodeath Enthusiast
Worriedtodeath
Posted

Positive blood work and negative bisopy is common. I agree with Ursa Major. What are you going to do if it is negative? If you speak with a pathologist, they will tell you that the biopsy was never intended to determine the Celiac dx but to rule out other gi issues and possibly confirm villi damage caused by Celiac. GI's tend to live or die by those biopsies and desire you to remain on gluten until it is positive. Which just means you've had enough gluten to flatten your intestional lining. What about the in between stage?

My daughter is a complete negative both bloodwork and biospy but has completely reversed or drastically improved all of her problems with a gluten free diet. It's only been 4 months or so, so we are still very much in healing stage. THe gi dr says we are idiots to do the diet along with 3 drs we have seen during sick visits. Her main ped says we have no choice but to keep her gluten free if we want her to live. Test wise she has no problem with gluten. Reality wise she was slowly dying in front of our eyes from severe malnutrition and malabsorbtion netiher with any known cause or detectable reason as to why she had it. Both which disappeared (or are disappearing) gluten free.

If you have positive bloodwork that should be enough for your dr to support a gluten free diet.

Stacie

Karwei5 Apprentice
Karwei5
Posted

Just adding in that my son has a positive blood work and negative biopsy.

The Dr said he didn't have celiac disease and see ya!

5 years later he finally showed visible damage and was puking everyday for 2 months.

If your DD is sick I would go gluten free regardless of what the Dr says.

Karol mom to Billy 20 years old Down syndrome Hypothyroid and Celiac disease

Tim-n-VA Contributor
Tim-n-VA
Posted

It is your choice what you feed your children. There is plenty on this site anti-doctor. You need to decide what level of conventional medical diagnosis you need for your own satisfaction.

Most of the tests measure reaction to gluten which is why they don't want you to stop until you get that definitive diagnosis.

The one thing you don't want to do is go off gluten and then go back on for a test later.

Ursa Major Collaborator
Ursa Major
Posted

Tim, she just had her biopsy, and had a blood test, too. The doctor said to wait with starting the diet until after the biopsy results. The only good reason for that is, that he will say she definitely doesn't have celiac disease if the test is negative, and she won't need to be gluten-free.

We all know that a biopsy can never rule out celiac disease, especially not in a young child.

The tests that need her to consume gluten are done. So why keep eating it now?

It is your choice what you feed your children. There is plenty on this site anti-doctor. You need to decide what level of conventional medical diagnosis you need for your own satisfaction.

Most of the tests measure reaction to gluten which is why they don't want you to stop until you get that definitive diagnosis.

The one thing you don't want to do is go off gluten and then go back on for a test later.

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Tim-n-VA Contributor
Tim-n-VA
Posted

I'm not a doctor but it seems reasonable that any of these tests could have a result that would make a retest desirable.

There are exceptions and nuances to each individuals situation. All I'm saying is that think about what you want from conventional medicine before you stop following the advice. My perspecitive is as much geared towards the potential other viewers of this thread as this specific case.

Worriedtodeath Enthusiast
Worriedtodeath
Posted

You make a good point Tim. We should always consider every possible angle before going down a rabbit hole only to find ourselves back to where we started in perhaps worse condition. It's not an easy decesion to make.

With Celiac even though there is a definite dx criteria to meet, there seems to be a wide and varying application of that criteria by various drs. Some drs will dx Celiac only with positive blood and biopsy, some with one or the other positive, some with just a response to the diet. It seems to depend not on the test results but by the dr who reads the results. many times you could honestly send the exact same reports and results to a wide range of gi drs across the country and get a range of opinions. Some drs have even said you don't have Celiac with positive blood and biopsy. IT's a very hard to get a consenus among drs regarding Celiac if you do not have at least positive blood, positive biopsy and are sick! There's at least one person here who's child has both positive blood and biopsy but no obvious symptoms. Their recomendation from their Dr was not to worry about since it wasn't making the kid sick. THere's at least me whose child has three drs who all have a completely different ideas as to how to make her well.

Every case is different and must be examined closely. However everyone including potential viewers need to understand that there is not a consenus among the medical drs and many of us have been sick long enough that following those drs can be dangerous. Getting that definite dx nearly killed my baby. And has left us with problems that hopefully will be reversed compleletely. However following my gi would have made my child sicker by far as two other drs have confirmed. Viewers need to know that following medical advise can leave you worse off than if you had ignored it. We are not talking about a medical issue that requires constant monitoring and drugs but about one that can be reversed and healed by a diet change. Not following drs on this one isn't going to kill or harm a child but following their advise to continue ingesting gluten until you get a positive biopsy could possibly cause more harm than necessary. It isn't so much about ditching conventional medicine as knowing that with this disease the reccomended course of action is far more dangerous than removing gluten and living without a dx. And given that a positive dx isn't going to change your future medical care, taking that risk is questionable at best.

Stacie

fedora Enthusiast
fedora
Posted

I am glad the procedure went well and she is okay.

mcs1984 Apprentice
mcs1984
Posted

We are getting ready to do the scope tomorrow, we are doing clean out today but they told us it would be about a week before anything comes back and that i can start taking him back off of gluten Saturday, and I can wait...yesterday my hubby gave him 2 waffles, and then my brother came over and gave him 2 bowls of rice krispies....we had a 2 hour melt down that i had to just put him in his room and close the door...so anyways i hope everything turns out great. And its like someone else said why wait to take them off if you dont have to.

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