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Biopsy For 10 Year Old

nothungry

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nothungry Contributor
nothungry
Posted

My ten year old is scheduled for biopsy this week...because of a positive EMA and TTG. The doctor gave me a choice - outpatient biopsy in the endoscopy unit, or in the surgery unit with general anastetic (spelling?). I chose outpatient.

Did I make the safest choice for my child? Any input or experience with the procedure on a child would be helpful. Thanks.

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Lisa Mentor
Lisa
Posted
My ten year old is scheduled for biopsy this week...because of a positive EMA and TTG. The doctor gave me a choice - outpatient biopsy in the endoscopy unit, or in the surgery unit with general anastetic (spelling?). I chose outpatient.

Did I make the safest choice for my child? Any input or experience with the procedure on a child would be helpful. Thanks.

I did the out patient. They gave me something to knock me out and went to sleep. I had no probems and would do it again with ease if needed. Child or adult, I was assume to proceedure would be the same.

HawkFire Explorer
HawkFire
Posted

I see no need for the endoscopy as far as the child is concerned. Perhaps the doctor is benefiting, but the child is not. That is my opinion. I am against unnecessary endoscopy. Your doctor is simply "playing" in my opinion. Your child will remember this procedure because he is old enough to. No, no, no. I would not do it.

Lisa Mentor
Lisa
Posted

Hawk Fire does have a point. Your son has tested positive by blood work. That should be a diagnosis in itself. The endo may not be necessary.

What are the reasons for requesting the endoscopy? Perhaps there is more questions your doctor may have.

If , by blood work, he is positive for Celiac. He does have Celiac. And you can begin the gluten free diet.

JamiD Apprentice
JamiD
Posted

I just had an endoscopy as an outpatient in the GI lab a couple of weeks ago. I was very anxious and remember abdominal pain and fighting the procedure. I don't recall the following colonscopy at all. I rec'd Versed and Fentanyl. My sister, who is a nurse anesthetist, performs anethesia for endoscopys in the OR and told me she usually gives propophyll (sp) as well and her patients are completely unaware of the procedure.

I'm getting my 8 yr old son blood tested next week, and depending on the results, I may also go the enterolab route as well. I will not have an endoscopy done for confirmation purposes only. Only if he was acutely ill and it was necessary to know how to treat him.

Good luck in your decision and the best for your child.

ravenwoodglass Mentor
ravenwoodglass
Posted

I had one child who had the endo and we skipped the it with the rest of us. I am also of the opinion that unless he has problems that are not celiac related, or that do not clear up after 6 months strictly gluten-free an endo is not needed. If I had to have it done I would make sure it was under general anesthesia.

nothungry Contributor
nothungry
Posted
  • Author

The doctor said that the only way to get a confirmed diagnosis is with a biopsy. I believe my child does have celiac because of strong family history. The doctor said that if a prescription should become available insurance would not cover it unless my child was confirmed by biopsy.

I am concerned that a biopsy may not be necessary, it is a difficult decision to make - - any input will definitely be helpful.

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HawkFire Explorer
HawkFire
Posted
The doctor said that the only way to get a confirmed diagnosis is with a biopsy. I believe my child does have celiac because of strong family history. The doctor said that if a prescription should become available insurance would not cover it unless my child was confirmed by biopsy.

I am concerned that a biopsy may not be necessary, it is a difficult decision to make - - any input will definitely be helpful.

Oh, I do not like your doctor one bit. He is making excuses. I would run from him. I tell you this as a mother of three. I am only looking out for your child's best interest, just as you are.

alison h Newbie
alison h
Posted

my nine year old had a biopsy under anesthesia...it was quick and painless...no biggie. I would definately recommend a biopsy to be 100% sure - as someone pointed out only the biopsy gives you 100% certainty. Actually my daughter had to have hers repeated last week, to see if the diet was working (as she is not growing or gaining any weight since we began the diet). Turns out that the diet has made a big difference, but that there seems to be another problem...some allergy perhaps. We are doing more blood tests to confirm what it could be.

Is your child on the small side?

Good luck

HawkFire Explorer
HawkFire
Posted
my nine year old had a biopsy under anesthesia...it was quick and painless...no biggie. I would definately recommend a biopsy to be 100% sure - as someone pointed out only the biopsy gives you 100% certainty. Actually my daughter had to have hers repeated last week, to see if the diet was working (as she is not growing or gaining any weight since we began the diet). Turns out that the diet has made a big difference, but that there seems to be another problem...some allergy perhaps. We are doing more blood tests to confirm what it could be.

Is your child on the small side?

Good luck

This is not true. Furthermore, a biopsy can miss damage. The "gold standard" of a biopsy is no longer a gold standard. It's archaic to keep hanging on to this outdated idea. It shows a doctor who is not up to speed.

nothungry Contributor
nothungry
Posted
  • Author

No, my child is not on the small side at all. I have her tested yearly, the past two years were negative, this year it was positive. She does seem to have symptoms, which confirms to me that she is has celiac too.

wolfie Enthusiast
wolfie
Posted

My 10 yr old DS had the biopsy/endoscopy under general anesthesia last July. He did fine. However, we have been testing my 4 yr old DD and I don't know that I would repeat that unless they were looking for other issues. The main reason I went ahead with it for DS is that I am not biopsy confirmed (went gluten-free after bloodwork before I knew better) but do have a very positive dietary response, and if he was going to have to commit to this for life (and to get DH to go along) we needed the confirmation.

nothungry Contributor
nothungry
Posted
  • Author
My 10 yr old DS had the biopsy/endoscopy under general anesthesia last July. He did fine. However, we have been testing my 4 yr old DD and I don't know that I would repeat that unless they were looking for other issues. The main reason I went ahead with it for DS is that I am not biopsy confirmed (went gluten-free after bloodwork before I knew better) but do have a very positive dietary response, and if he was going to have to commit to this for life (and to get DH to go along) we needed the confirmation.

Would you have had your DS biopsied if you were a biopsy confirmed celiac ?(as I am one, so are other family members of mine). I believe that with our family history and a tTG of 26 she is positively a celiac. Would you agree?

wolfie Enthusiast
wolfie
Posted
Would you have had your DS biopsied if you were a biopsy confirmed celiac ?(as I am one, so are other family members of mine). I believe that with our family history and a tTG of 26 she is positively a celiac. Would you agree?

That is a tough one, but probably not. Especially with positive ttg. Jon's ttg was 222 (was supposed to be under 20).

Also, remember that the endoscopy/biopsy can only rule in Celiac, it can't rule it out. If there is patchy damage in the intestine, it could be missed.

Good luck and let us know what you decide.

happygirl Collaborator
happygirl
Posted

I would have your child biopsied. This is the only time that your child has the opportunity to have it done, otherwise, they will have to go back to eating gluten to have it done. You have the opportunity to have a "gold standard" diagnosis and it does make life easier for many people. I do not have a positive biopsy and have encountered a lot of problems with the medical community because of it.

I would do the outpatient...its a quick procedure. Plus, this way, they can check for any other problems or rule other things out. The endo isn't "just" about Celiac. When you have the biopsies done, make sure they take multiple biopsies in multiple sites.

nothungry Contributor
nothungry
Posted
  • Author

When my child initially found out about her positive test, she would not eat gluten at all. Her Gastroenterologist appt. was three weeks later. He said put her on two crackers per day of gluten, that will be enough for the biopsy. Well, we did that for a week, she was sick for a week - so I could not make her eat gluten, and now the biopsy is in a few days. I am quite concerned that if I do the biopsy it will not show damage anyway - because she has not been eating much if any gluten at all for the past 5 or 6 weeks. So, while I am convinced that she has celiac and I would like it to be confirmed, but I'm not sure it needs to be. Any thoughts?

HawkFire Explorer
HawkFire
Posted
When my child initially found out about her positive test, she would not eat gluten at all. Her Gastroenterologist appt. was three weeks later. He said put her on two crackers per day of gluten, that will be enough for the biopsy. Well, we did that for a week, she was sick for a week - so I could not make her eat gluten, and now the biopsy is in a few days. I am quite concerned that if I do the biopsy it will not show damage anyway - because she has not been eating much if any gluten at all for the past 5 or 6 weeks. So, while I am convinced that she has celiac and I would like it to be confirmed, but I'm not sure it needs to be. Any thoughts?

The idea that you need a biopsy to confirm celiac is outdated. I am simply stunned that you still are undecided. I was heartbroken for your child to read of her conviction not to eat gluten only to have her resolve destroyed by this doctor. No one goes through all of this to become vegan. This is a diet. She has the blood tests clearly indicating celiac disease. She has celiac disease. There is no doubt. There are only more tests that someone will profit from and get practice doing. I am stating without any doubt that this test is not needed at this point. It is poor medicine for that doctor to claim she needs this test. Walk away from that doctor. If a prescription should become available??? What prescription? How about this- when a prescription becomes available, they will have very simple tests to rule in or out celiac disease just so they can sell and profit from the sale of their prescription. No one's going to agree to routinely biopsy the population just so they can sell a pill... they will figure out a way to make it a simple blood test... oh, wait! They already have. You do not want the official dx of celiac disease anyway as it makes getting health and life insurance nearly impossible. Her blood tests confirm a dx of celiac disease. Walk quietly away and do not draw attention to it or you will find that is a greater problem for her in the future.

One other very important point I want to address. A biopsy is NO LONGER the GOLD STANDARD. People who are new to this need to understand this.

ravenwoodglass Mentor
ravenwoodglass
Posted
When my child initially found out about her positive test, she would not eat gluten at all. Her Gastroenterologist appt. was three weeks later. He said put her on two crackers per day of gluten, that will be enough for the biopsy. Well, we did that for a week, she was sick for a week - so I could not make her eat gluten, and now the biopsy is in a few days. I am quite concerned that if I do the biopsy it will not show damage anyway - because she has not been eating much if any gluten at all for the past 5 or 6 weeks. So, while I am convinced that she has celiac and I would like it to be confirmed, but I'm not sure it needs to be. Any thoughts?

It HAS been confirmed by dietary challenge. As stated and it can not be stated enough the 'Gold Standard' is the old standard, it is not valid unless it is clearly positive. In addition you may even hear that there are minimal changes but she doesn't have celiac. Have her go back and gluten and come see me again if she gets sicker. She has been sick for a week from a few crackers, how much more 'proof' is really needed? You may want to look for a more savvy doctor.

nothungry Contributor
nothungry
Posted
  • Author
It HAS been confirmed by dietary challenge. As stated and it can not be stated enough the 'Gold Standard' is the old standard, it is not valid unless it is clearly positive. In addition you may even hear that there are minimal changes but she doesn't have celiac. Have her go back and gluten and come see me again if she gets sicker. She has been sick for a week from a few crackers, how much more 'proof' is really needed? You may want to look for a more savvy doctor.

Just to clarify - she was sick due to a virus - but I was not going to give her gluten while she was sick.

I do believe that the doctor wants to do the biopsy because that is what he does. I don't think she really needs it...but I like to hear opinions from other people in my situation. Thanks for all of the input.

HawkFire Explorer
HawkFire
Posted

You say you don't think she really needs it... you are right. She doesn't. If you choose to allow her to be available for a doctor who wants to perform a test.. I can't stop you. No one here can. This isn't really about advice. You admit she doesn't need the biopsy. I don't understand why you would even consider it at this point. Perhaps you are intimidated by the doctor? Maybe you are unsure of yourself? I don't know. There is one fact that I am sure of: Your child does not need the biopsy to confirm a dx of celiac disease. She has celiac disease. To go through with the biopsy seems unkind. Best of luck. You child sounds very self aware to attempt to commit to the gluten free lifestyle so enthusiastically. I think she should be encouraged- not forced to eat gluten filled crackers for the sake of the doctor and his test.

I hope your self confidence in this regard allows you to tell the doctor NO.

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