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StephanieL

Don'T Want To Biopsy

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I am wondering why I *need* to biopsy

. His first blood test was + (173 when it is suppose to be less than 30 I believe). This Dr. won't do the genetic test till after the biopsy but I just don't see putting a 3 yea old through it. There is no family history and he has no S&S (though he has always had loose stools).

Since the treatment is a gluten-free diet, why can't I just put him on a gluten-free diet and retest the blood in 6 months or a year.

He also has many food allergies: dairy, egg, corn, all nuts (peanuts too), fish/shell fish, citrus, banana, blueberries, soy...I think that's it)

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I was diagnosed with such high blood levels that my GI doc saw no need to biopsy. I did have a biopsy a few years later for symptoms of GERD and acid reflux and there were signs of "celiac villi."

I guess a biopsy for your son will just add another confirmation in his diagnostic journey. At least, it's an easy test w/ no prep (other than not eating after a certain time).

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I am with you. My 9 year old was diagnosed via blood tests. We declined the biopsy, because the hospital is a scary place for a kid. No anesthetic or amnesia drug is without risk. He is doing great on a gluten free diet, and all his symptoms are gone. good luck with your choice!

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I see no need to biopsy UNLESS the doctor is also looking for any other sort of problem.

richard

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Thing is, a biopsy for such a young child is even more likely to get a false negative than for adults. Although, since the blood tests are very often falsely negative, especially for small children, I suppose it's possible the biopsy could be accurate. That's not to say it's necessary, and I personally don't think it is.

I'm wondering though, why the doctor won't do the genetic tests until after the biopsy. It sounds like he doesn't intend to give a diagnosis unless everything turns up a positive.

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Our doctor came out while my son was being prepped, and just before his biopsy, and made me sign a paper that my child could die during the procedure. I asked if anyone had ever died when he performed one, and he said no, and I remember thinking, be thankful for small blessings. If I had known of the risks, and if I had also known what his doctor said at the same time, that in 30 years of practice he had never had a single child with positive bloodwork and a negative biopsy, I would have thought twice about doing that first biopsy.

That being said, we actually did a repeat biopsy after a year when my son was not improving. It was primarily to look for possible allergic issues, which we did not find, and showed partially healed villi, which was encouraging. If we hadn't done the first one, we would not have known he was on the road to recovery, and that healing was just taking a bit longer than we would have hoped. So I guess I am glad we did the first biopsy, but I can certainly understand you thinking it through carefully.

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You have to do what you feel is right for your child. We opted for the biopsy for both of my kids, dd was 4 at the time of hers and ds was 2.5 when he had his. For me, since I work in the medical field and I am involved in procedures similar to this on a daily basis, it was less scary for me and an easier decision. What I wasn't expecting, however, was the effect the meds would have on them. We use the exact same meds for the adults, who drift quietly to sleep. Kids, however, appear to become possessed --THAT was the scariest part for me, although I asked to be with them right up until the scope was placed, so I did it to myself :rolleyes:

Do what you feel your gut is telling you ;)

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A biopsy can be done to luck for other conditions as well. You should discuss this with your doctor so you can make an informed decision. Other conditions that are known to have the same symptoms or can be present in addition to Celiac.

H. Ployri

parasites (could be tested for in stool samples)

cogenital defect

Eosinophils

Barret's Esophagus

amount of damage

We did not have the scoping when my daughter was 16 months old. She was too ill at the time. She was given a "probable" Celiac diagnoses.

We did have the soping done when she was 6 and she was diagnosed with Eosinophilic Esophagitis.

There are risks that you should discuss with your doctor. There are benefits of having an accurate diagnoses.

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As you can see - there are reasons for and reasons against.

It's a personal decision, and I would encourage you to give it due consideration, but also realize that it doesn't HAVE to be done in order to be gluten free. Good luck navigating this difficult decision.

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This is definitely a personal decision. My son's GI doc said it was for confirming diagnosis (no family history) and to see the extent of damage that may affect healing and to see if anything else was going on. I'm glad we did it with my oldest. He did great and is recovering well on the diet. We opted to not do it with our then two-year old (this was back in November). But he's seems to be recovering more slowly so sometimes I wonder if the endoscopy would have shown anything. By the way, the doc did mention that there's still a possibility of endoscopy based on how he's responding at 6 months. Meaning if he's still not back to where the doc thinks he should be, he'll want to take a look inside.

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