Biopsy Is Not For Another Month..questions!

[Laura L.]

Hi there,

My 2 year old daughter's bloodwork tested positive for celiac this week. After taking her off gluten, she is back to her old self, after being sickly, lethargic and basically miserable for so long. Needless to say, my husband and I are overjoyed to see her feeling well. We can't get in to the specialist for her biopsy for another month. I was told not to make her 100% gluten free until then, to give her some crackers each day. Does this seem like a long time to keep her on gluten if it is harming her? Another question I have is why we have to do the biopsy on her if the bloodwork is positive? I had read the bloodwork may not be completely reliable on children, but since stopping gluten her symptoms have gone away- isn't that enough to diagnose? I would like to have asked the doctor this, but won't get to see him for another month.

Any experiences with this type of situation would be so helpful. Thanks!

Laura L.

[kbtoyssni]

A positive blood test is a diagnosis! Some doctors still like to do a scope because it's long been considered the "gold standard" diagnosis even though it's not necessary unless the doc is looking for something else in addition to celiac. As for blood tests being in accurate for children - it's just that kids are more likely to get a false negative. A positive is still a positive.

It's true that your daughter needs to keeping eating gluten if you do decide to do the biopsy, but she probably needs to eat more like 4 servings a day. Since she's been gluten-free for a while, you're going to have to pump that girl full of gluten to hope to get a positive scope. Honestly, you've got a diagnosis already and you know that your daughter does better not eating gluten. I'd skip the scope, go gluten-free, and let her start healing now.

[kim26]

hi!

I would say go with your gut, or in this case your daughter's gut! My daughter is 7 years old and received a tentative diagnosis two months ago after positive blood work and a negative biopsy....we tried the diet per doctors orders and were AMAZED at the difference we saw! We just had the follow up visit with her GI doc this morning and she OFFICIALLY diagnosed her based on her blood work and positive response to the diet. And I DO MEAN POSITIVE! She is a different kid! She's SOOO HAPPY NOW! Not to mention the almost TWO INCHES she's grown in exactly two months, and the fact that her previously bloated belly is now flat as a pancake! I could go on for hours but i won't lol! You really have to do what you feel is best for your daughter, with or without the docs nod of approval. Im extremely blessed that my daughter has a truly amazing doctor, but not everyone is so lucky. According to our GI doc, biopsies in kids aren't immensely reliable, many of them haven't been sick long enough to do a large amount of damage, or they just simply miss it when they take the samples. our doc suspects my daughters damage is lower in the small intestine than the they can look with the typical EGD method. It really comes down to you and what you think is best. Good luck, hope this helps! ~K

[Guest j_mommy]

Just wanted to add that they can also check for other issues with an endo. Make sure all else is well.

Having a biopsy is a personal choice...one each person needs to make for themselves. I chose to do a biopsy even though I had positive blood tests.

I would up the amount of servings though to be sure they get a good look if you are going to do teh biopsy.

Good Luck!

[Ursa Major]

In adults it is more likely that other issues might be found with a biopsy (I still wouldn't do it myself, though). In a two-year-old it isn't too likely. If she wasn't responding positively to the gluten-free diet, I would still pursue finding the cause. But with her amazing response to the gluten-free diet, I don't think any other tests are needed.

If I was her mother, I would just go with the positive blood work and the positive response to the gluten-free diet and keep her 100% gluten-free for life.

The blood work is not considered very reliable in young children because it often give false negatives....... there is really no such thing as a false positive.

[gfpaperdoll]

bottom line doctors make money doing biopsies & they also can use your child for a "case report" if they complete the diagnostic work.

I would never put a child thru a biopsy, there is a thread on here about all the complications, just a few of which could be complications from anesthesia - especially in underweight sick kids, & the docs can accidently rupture the intestines - among other things - no thanks, why do the biopsy when you have your proof via blood work & positive dietary change...

but my main thing is that there are SUPER GERMS in the hospitals that you do not want to be near. Most hospitals hide those reports but they are very serious & can result in death. I try to stay out of docotrs offices & hospitals as much as possible...

[cruelshoes]

I was told not to make her 100% gluten free until then, to give her some crackers each day. Does this seem like a long time to keep her on gluten if it is harming her? Another question I have is why we have to do the biopsy on her if the bloodwork is positive? I had read the bloodwork may not be completely reliable on children, but since stopping gluten her symptoms have gone away- isn't that enough to diagnose?

From the Open Original Shared Link:

If my positive antibody test suggests I may have Celiac Disease, how do I find out for sure?

If antibody tests and/or symptoms suggest celiac disease, the physician needs to establish the diagnosis by obtaining tiny pieces of tissue from the small intestine to check for damage to the villi. This is done in an endoscopic biopsy procedure. The physician eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine, and then takes samples of the tissue using instruments passed through the endoscope. Biopsy of the small intestine is the only way to diagnose celiac disease.

Why is it necessary to have the endoscopic biopsy?

It is important to know that the blood testing can only confirm that you do not have celiac disease. This is why the biopsy is necessary if your test results are positive, to confirm the results. It is important to definitively establish the presence of celiac disease and rule out the presence of other conditions, including food allergies, a far more common condition

I think an important consideration before eschewing the biopsy is whether or not your doctor will give you the diagnosis based on the bloodwork and dietary results. Many will not. You need to consider if a formal diagnosis is important to you. It is very important to me when it comes to my son. Many people go gluten-free without the biopsy and never look back. I'm glad that's what works for them. Your comment above about the bloodwork being suspect in the very young is partially true. False NEGATIVES are common in the very young. False POSITIVES are not.

We had my son's endoscopy when he was 6. It was quick, and he has no memory of the procedure. I saw with my own eyes that my asymptomatic child had severe villi damage. They also found many, many pseudopolyps in his stomach. The GI said that it was probably due to the constant irritation from gluten. Was it an easy decision to have a medical procedure done on my son? Absolutely not. Was it worth it? Definitely yes. We have an ironclad diagnosis (with pictures!). It has given me the incentive to keep him 100% gluten-free. He cannot come back to me when he's a teenager and say "sorry mom, we didn't have the biopsy, so I'm not convinced I have celiac disease. I'll eat what I want."

Your daughter is young now, but she will most likely attend school in the future (unless you homeschool). If you want a 504 plan, you will have to get a diagnosis. Will the teacher be likely to change the brand of play-doh in the classroom to one that is gluten-free without a diagnosis? It's anybody's guess. If there is ever a drug treatment for celiac, will doctors be willing to prescribe without a diagnosis? Who knows?

If I were in your shoes, I would do the biopsy so that there could never be a sliver of a doubt that it was celiac. I would not avoid doing the biopsy for fear it would be negative; rather I would do it because of the possibility it could be positive.

Good luck with whatever course of action you choose.

[Laura L.]

Thank you all for your replies, they have been very helpful! When I talked to the nurse, she said the doctor only said for her to have 1 cracker per day. I hate to give her any, since it obviously has been the reason she has been sick. I'm still not sure what to do. Thanks again for your advice.

Laura

[Ursa Major]

You know, one cracker a day may not be enough for a positive biopsy. The recommended amount is four slices of bread a day. But of course, even one cracker a day will keep her sick, since even one crumb will make most of us very ill.

And obviously, one whole month is a long time to purposely keeping a toddler ill, when you know how to make her well. Why don't you tell them that unless the biopsy can be arranged earlier, you won't keep her on gluten.