Did You Biopsy Your Preschooler?

[NewGFMom]

So, we went to go see the GI today. It was a frustrating visit. He said given the blood test results, and the positive response to the diet (we started when we got the blood test results) he was 90% certain that it was celiac, but he would not "treat" him for celiac w/o the biopsy.

So, we'd have to put him back on gluten for a month and he'd undergo general anesthesia and they'll do the biopsy. He was very kind and understanding, but he really disagreed with our reluctance to undergo the biopsy.

I just can't justify poisoning a child this age for a month to satisfy the celiac "gold standard." If there hadn't been a five week delay between the blood test results and the GI visit, I probably would have kept the gluten in. But it seemed so irresponsible of me to do NOTHING. My kid was in pain, how could I do nothing?

Our plan is to keep him gluten-free, and wait a couple of years and do it before he starts kindergarten in 2009. I think at that point he may start to notice or care that he's not eating what other kids eat. Right know he could not care less. He likes his five foods and he is totally happy to just eat that. The nutritionist looked at his growth charts and said he's clearly getting enough nutrition. (He inherited a nice SLOW metabolism from me and dad ) His diet is limited, but not unhealthy.

But in the meantime, he does not want to 'treat' us for celiac until we do the biopsy. We talked him into doing the standard blood tests, and stool tests that they would do with the diagnosis. But I don't think this is going to work with this doctor. I want somebody who is willing to wait until my kid is a willing participant ie, he's 100% independent in the bathroom, and he understands why he's eating stuff that makes him very sick.

Does that sound crazy? Why don't the doctors "get it?" Taking the gluten out of my house really hasn't been that big of a deal. I'm an accomplished cook, and make most of my own sauces from scratch. So, I use wheat-free Tamari instead of soy sauce in my marinade. But subjecting a healthy child to general anesthesia at this point seems, well negligent.

Did you biopsy your preschooler or toddler after you pulled the gluten?

[dandelionmom]

I'm new to all of this but just wanted to say that I can identify with your concerns.

I wonder if you need to find another doctor. One that does a better job relating to you.

[AndreaB]

I wouldn't think a month back on gluten would be nearly enough to try and test positive. Putting your child through that, IMO, is not worth it. They say you should be on the equivalent of 4 slices of bread daily for 6 months I believe. Even then, you may not get a positive biopsy. They may not hit a spot that is damaged.

There are doctors that accept positive dietary response. I certainly would not have kept my child on gluten that long after bloodwork either.

[JennyC]

Sounds like the doctor I took my son to, but I think my son's doctor was even more ignorant. My doctor said that if the biopsy was negative, then he doesn't have celiac disease and the blood work is wrong. I too started my son on the gluten free diet when I got his strongly positive blood work results. My son had an outstanding response. My son was not growing, had a bloated abdomen, and had the classic celiac diarrhea 3 times each day that he struggled to control. Every symptom disappeared once we got the gluten fee diet down. By the time we got to the pediatric gastro he had been gluten free for a month. There was no way that I am doing a gluten challenge to satisfy a doctor. Ask yourself this: If you did a biopsy and it came back negative would you put your child back on gluten, even though he had a positive response to the gluten-free diet? If the answer is no, then in my opinion, the biopsy is pointless. The way that I look at it is that positive blood work is very reliable and when you combine that with a positive response to the gluten-free diet, then it has to be celiac disease. I know my son got better on the gluten-free diet and that is proof. If that is not enough for my son one day, then he will have my full support to do the gluten challenge when he is mature enough to make that decision. If that time ever comes I will not have any regrets. I have struggled with this decision, and I know that I have made the right one for my family. I hope this helped.

[celiac-mommy]

I feel for you. Although I'm not sure what advice to give you, I can tell you what happened to us. Our daughter was getting sick all the time and not gaining weight. Among all the other blood tests, our pediatrician decided to test for celiac sprue and told us NOT to change her diet yet. Within a week he had us into see a ped's GI who thought this was celiac but said the biopsy was VERY necessary to have a complete diagnosis. He said to NOT change her diet. We went through the biopsy (much harder for me than it was for her), and although he had to send away the biopsy, he showed us the pictures and said "This is what Celiac Disease looks like-now it's time to change her diet." That's when we changed EVERYTHING. It sounds like maybe your pediatrician screwed up and was not proactive enough to get your son seen by the GI soon enough. Ours (pediatrician) treated this like it was indeed serious enough to see a specialist RIGHT AWAY (which is what they all should do). Shoulda, woulda, coulda. Some friends of ours, who's son tested negative origionally, did so well when they took him off gluten but now they have found the right dr and are ready to do the biopsy (2 years later), so they've had to put him back on gluten. It's been really difficult, but they decided they needed the diagnosis for sure. I think what's right for one family may not be right for another. Our GI told us that it's not enought just to change the diet. For true Celiac Disease, since there are many other problems associated with true, untreated celiac disease, he always does a biopsy. If the biopsy is negative, but the child does better on a gluten-free diet, then so be it--but then he knows that every time a kernal of gluten gets into the system, it's not killing the intestine-and other parts of the body later. (this is what he told us)

I'm not really sure this helps...

[NewGFMom]

It took a week to even get the referral to the GI. From there it was a little over a month to get an appointment. Mu son has been gluten free for over a month and we've seen the following changes:

Huge increase in appetite

Less diarrhea

More energy

Asthma is gone. I haven't needed his inhaler since we pulled the gluten.

But what has not changed is:

he still gets diarrhea, just not every day

His stomach still hurts, but much less (he's not complaining about it now but if I ask he says it hurts)

I want to give it some more time.

[snomnky]

My short answer is yes, we had my 13 mo go through a biopsy. He was off gluten at 6mo, but his pediatrician guilted me into adding gluten back to his diet at his 12 mo appointment, with in three days he was very ill and loosing weight we immediately pulled the gluten and things seemed to get better and then one day he got very ill again, vomiting, bloated, crying, rashy, poop that was white and smelled like vomit. We called a GI after hours, he had been seen by a GI but not this doc, and he admitted him to the pediatric ward and did biopsies of his small intestine, stomach, esophagus, and colon. Severe damage was found and confirmed to me celiac, he aslo had severe gastritis and bleeding of the stomach and evidence of food allergies. We don't know what exactly happened, we suspect that he got gluten in his diet accidentally.

So...if he hadn't gotten sick we would NOT have done the biopsy because we would not have put him back on gluten like they told us we needed to (we were also told he would need 1mo gluten before a biopsy), but since he did get sick we were seeking answers and we were very anxious to find what was making our son sick. Stick with your gut feeling, a diagnoses from a GI is unnecessary, if he is better without gluten, then no more gluten, it's pretty simple.

BTW, my son's naturopath suggested we take him off gluten at 6mo, she was very supportive of the problems we were having. Also, my son is extremely sensitive and will get sick from the smallest crumb, or even wheat dust in the air.

[JennyC]

It took a week to even get the referral to the GI. From there it was a little over a month to get an appointment. Mu son has been gluten free for over a month and we've seen the following changes:

Huge increase in appetite

Less diarrhea

More energy

Asthma is gone. I haven't needed his inhaler since we pulled the gluten.

But what has not changed is:

he still gets diarrhea, just not every day

His stomach still hurts, but much less (he's not complaining about it now but if I ask he says it hurts)

I want to give it some more time.

Is your child still getting a lot of dairy? Newly diagnosed celiac patients are usually lactose intolerant for at least 6 months. I already had my son on soy milk, and I started giving him half of a chewable Lactaid when he consumed dairy. You also have to make sure that you're checking everything. My son's toothpaste had gluten in it and I didn't realize it until recently.

[NewGFMom]

We talked to the nutritionist about the dairy issue. She said that what we were describing did sound like lactose intolerance, as opposed to a real cascien allergy. We are mostly doing lactose-free or low lactose dairy and just switched to lactaid milk. We'll see how that goes...

I'll check the toothpaste. That's a good idea.

[fkewatson]

I'm brand new here, but our GI said doing a biopsy is like "taking a cup of water from the ocean". You go in there blindly and take the sample and you may or may not end up with a sample from a damaged area. He seems to be the opposite of your doctor - he thinks clinical response to a gluten-free diet is good enough evidence that my son should remain off of gluten.

[momof2sn]

I'm brand new here, but our GI said doing a biopsy is like "taking a cup of water from the ocean". You go in there blindly and take the sample and you may or may not end up with a sample from a damaged area. He seems to be the opposite of your doctor - he thinks clinical response to a gluten-free diet is good enough evidence that my son should remain off of gluten.

Where do you live? Maybe someone here could recommend a good doctor in your area. My daughter had a negative biopsy, but positive blood work for the gene and high levels, so we were given the diagnosis. They wanted to repeat the biopsy and we refused. If you have some time to wait as you said, then use any resource you can to find a doctor who will give you the diagnosis without the biopsy.

[NewGFMom]

I'm in the Boston area. We went to Children's Hospital. They have a celiac group there.

I wonder if they're so keen on the biopsy because it's the only thing with a celiac patient that they can make $$ on. He was also a younger guy. They tend to be very gung ho about procedures as well.

If anybody knows somebody that will work with us on this, I'd be happy to work with our primary care doc to get a referral.

[JennyC]

I think that doctors are reluctant to change their ways. The gold standard biopsy is how they learned to diagnose celiac disease in med school. It's hard to teach an old dog new tricks! There are many studies and peer reviewed journal articles out there saying that positive blood work along with dietary response is sufficient to diagnose celiac disease. I also believe that there was a report saying that the values of tTG correlate with the amount of damage done to the intestine. The trick is to find a doctor that is not set in his ways, or one that takes a more natural approach. I do know that whenever we make it to another pediatric gastro, I will be taking a stack of journal articles with me.

If my son would not have already started the diet, I most likely would have done the biopsy. However, I was not going to poison him with gluten to satisfy a doctor. I am satisfied with my son's response, and so is the rest of my family. My son is doing better than he has done in his entire life, and I could not be more happy. On this board people with biopsies and those without seems to be about 50:50. Do what's best for you.

For the record, the toothpaste with gluten was by Zooth, the kind with the characters on it. Zooth is made by Oral-B.

Also my son was able to have half a Lactaid at 30 lbs. It has dramatically increased his diet options.

[Electra375]

But in the meantime, he does not want to 'treat' us for celiac until we do the biopsy.

What kind of "treatment" for Celiac do you think this doctor can do for you? The treatment is the gluten-free diet, which is done without any assistance from the doctor -- most doctors are truly clueless about the real ins and outs of the diet anyway.

I don't think you are in by yourself in your thinking. And it is perfectly okay to wait on the biospy or not do it at all. For the moment you have your answer, right? And a positive response to the gluten-free diet?

One of our children has not been biopsied yet and the pedi just states "probably celiac" on preschool forms.

It can certainly wait until the child is old enough to understand how the biospy works and why they need to eat something that will make them sick for a few months. And in the mean time maybe science will discover a new "gold standard".

It really make no logical sense to make the intestines "damaged" to get a diagnosis. What other diseases have this kind of diagnosis techinque?