Son Scheduled For Scope At Georgetown

[arlingtonmom]

My three year old is scheduled to be scoped at Georgetown University Hospital by Dr. Rekhtman, a ped GI, on August 7th. Just out of curiosity I called Columbia University to see how their consultation services work because I have read on this board and others that people have sent their biopsy slides to Columbia for a second opinion when the results were inconclusive. The woman at Columbia told me that we should cancel our scope and wait for an appointment at Columbia. She said that other doctors are so poor at performing scopes that it'd be worth the wait and the travel. I know that it's true that a doctor needs to know what they're doing when taking the biopsy samples, but could it be true that I have to travel to Columbia to receive competent care when I have access to Georgetown? I'm disappointed and confused because I really hate to wait months to be seen, but I also want what's best for him. Any thoughts or experiences are appreciated.

[cookie22]

My three year old is scheduled to be scoped at Georgetown University Hospital by Dr. Rekhtman, a ped GI, on August 7th. Just out of curiosity I called Columbia University to see how their consultation services work because I have read on this board and others that people have sent their biopsy slides to Columbia for a second opinion when the results were inconclusive. The woman at Columbia told me that we should cancel our scope and wait for an appointment at Columbia. She said that other doctors are so poor at performing scopes that it'd be worth the wait and the travel. I know that it's true that a doctor needs to know what they're doing when taking the biopsy samples, but could it be true that I have to travel to Columbia to receive competent care when I have access to Georgetown? I'm disappointed and confused because I really hate to wait months to be seen, but I also want what's best for him. Any thoughts or experiences are appreciated.

I'd get him seen as soon as possible. If it is a Ped. GI, he is trained how to scope esp on little kids, that sounds sort of like a fib from columbia to get you to go there instead. A scope is a fairly easy procedure, really, if your choice is now or in months, i'd do it now. and, it's not like you're going to uncle joes endoscopys in the back of a van, you're going to a university hospital. The real question is, Do you want to put it off for months and keep your son in more pain by making him eat more gluten?

[Eriella]

Hello,

The doctors at Columbia are fantastic, and I would recommend listening to their advice. However, Georgetown is a great school and medical facility. I do not know how experienced they are in celiacs, and pediatric celiacs. Columbia does.

I know you would hate to wait and see your son suffer, so see how early you can get in. If you can get an appointment within a month, take it. Otherwise, if you can afford it, go to Georgetown and then go to Columbia. You don't necessarily need to go to the creme de la creme doctor-- but with a 3 year old in their most formative developing years, I'd go to the best. But that is my own opinion.

[cookie22]

Hello,

The doctors at Columbia are fantastic, and I would recommend listening to their advice. However, Georgetown is a great school and medical facility. I do not know how experienced they are in celiacs, and pediatric celiacs. Columbia does.

I know you would hate to wait and see your son suffer, so see how early you can get in. If you can get an appointment within a month, take it. Otherwise, if you can afford it, go to Georgetown and then go to Columbia. You don't necessarily need to go to the creme de la creme doctor-- but with a 3 year old in their most formative developing years, I'd go to the best. But that is my own opinion.

really, celiac is not that complicated and you don't need to go to a rocket scientist to get a scope. people like to act like celiac is so darn dramatic and horrible because its apparently exciting having a disease. actually, it's one of the best things to be diagnosed with, because we can fix it/stop it by just not eating gluten. I really am not sure why people with celiac need to go to such expensive GI's, and keep going back to them, once your diagnosed, there is nothing they can do anyway. I personally would not wait months and months just to go to a "better" doctor, when really, there isnothing they can do for celiac other than say stop eating gluten. Both doctors will do the exact same thing if he has it. just fyi.

[Eriella]

I personally would not wait months and months just to go to a "better" doctor, when really, there is nothing they can do for celiac other than say stop eating gluten. Both doctors will do the exact same thing if he has it. just fyi.

I agree-- the treatment is simple and something you can do yourself. My thoughts are that having dealt with so many incompetent doctors, I would not recommend going to a doctor who doesn't have at least some experience with gluten issues. If the one at Georgetown has experience, save the time and go there. If you get the dx, that is all you need (and you may not need-- you can take your son off of gluten without a doctor's recommendation). However, if s/he messes up the scope-- and plenty of doctors think that one biopsy is enough-- then it could set your son back.

You also have to consider the possibility that it isn't celiac disease or gluten intolerance. If that is the case, you want to have the best possible pediatric gi to figure out how to make your son better.

If it was me, I would take my child off of gluten and see how he reacts. That is easier than getting an endoscopy and more effective. However, if I went to a doctor to get diagnosed, I would go to the best.

[EmmaQ]

The scoping is not the difficult part, this is very true. It is obtaining the biopsies and preparing the slides correctly and then having knowlegdable pathologist looking at them and a Celiac Specialist doctor reviewing them himself.

My thoughts are if a Celiac Research center is nearby, within driving distance, then go there. Around here it's the University of Maryland Center for Celiac headed by Dr. Alessio Fasano a world reknown researcher of Pediatric Celiac Disease. He reads the slides himself before giving results to patients from what I understand. He is also training fellows what to look for, engaging them in research, etc.

Frankly, the testing methods are mediocre at best. Testing research needs to be done and I know some places are doing that.

Anyway, I choose to take my children to the best guy around, it does mean a few hours in a car there and back. I believe Columbia is home to Dr. Peter Green and the Celiac Disease Center at Columbia University. If one of the best is in your own "back yard" so to speak, why settle for 2nd best??? Dr. Peter Green is the author of Celiac Disease A Hidden Epidemic and his research is equally cutting edge as Dr. Fasano. If I lived near Columbia and not UMD, I'd drive to Columbia.

You never know when your case might be used for advancements in Celiac Disease study. Since my older child has Celiac, we became involved in a study involving our infant child. UMD is doing a study on the introduction of solids and the on set of Celiac Disease in those with confirmed first degree family members.

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Celiac is farely simple as far as conditions go, usually, but the tests are not accurate and lack definative results, as in negative may not be really negative. And young children present a group where testing is seriously lacking in accuracy - so have it done by the best you can.

[happygirl]

Agree with the above poster....If you are in Arlington, VA, go to Dr. Alessio Fasano. He is another leading Celiac expert. He is a pediatric GI at University of MD's Celiac Center in Baltimore. www.celiaccenter.org for more info on scheduling appt's, etc. Being this close to him, I would definitely see him.

I live in VA, feel free to PM if you would like

[Electra375]

I also drive to Dr Fasano from VA. Worth every mile!

[arlingtonmom]

Thanks so much for everyone's input. It looks like I won't be able to get in to either Columbia University or University of Maryland for several months, and I hate to have him suffer any longer. So, at this point, I think I'm going to keep my appointment with Georgetown and hope all goes well. Then, possibly, send the biopsy slides for a second opinion if the results are inconclusive or negative.

[happygirl]

Thanks so much for everyone's input. It looks like I won't be able to get in to either Columbia University or University of Maryland for several months, and I hate to have him suffer any longer. So, at this point, I think I'm going to keep my appointment with Georgetown and hope all goes well. Then, possibly, send the biopsy slides for a second opinion if the results are inconclusive or negative.

from www.celiacdiseasecenter.columbia.edu (under "for doctors" and then "biopsy")

"Pitfalls in the biopsy diagnosis of celiac disease

These include: 1. Inadequate number of biopsy pieces. The disease is patchy, this combined with the fact that all biopsy pieces may not be oriented sufficiently to assess the crypt to villous ratio means that at least 4 to 6 biopsy pieces need to be taken. Biopsy of the descending duodenum is sufficient. 2. Over-interpretation of villous atrophy because of poor orientation of the biopsies. If the pieces are not sufficiently oriented to assess the presence of, or degree of villous atrophy deeper cuts of the tissue block need to be ordered. 3. If the biopsy interpretation does not match either the clinical impression or serologic results the biopsy should be re-interpreted by a pathologist expert in the interpretation of gastrointestinal pathology."

Make sure that they take at least this amount of biopsies. Many doctors only take one sample. If you are taking the time to get it done, make sure that you talk with them to ensure they are taking the correct biopsies...multiple samples from multiple locations.

Good luck---hope all goes well!

[Fiddle-Faddle]

I'm going to go out on a limb here.

If it were my child, and the bloodwork positive (which I assume is why they want to scope in the first place), I would not do the scope at all.

There are 22 feet of intestine on an adult (obviously less on a child), and, as noted above, damage is patchy. The chances of their picking a patch with damaged villi is chancy at best. So what do you do if the biopsy is negative? Have him eat gluten anyway?

And, yes, as surgeries go, an endoscopy is a less invasive procedure. But it IS invasive, and they do have to knock your child out for it, and THAT is the biggest risk of all.

Children have died on the table just from routine ear tube insertion procedures. Ask your doctor WACTLY what the risk is of your child dying during this procedure. Chances are, he'll say, "Oh, extremely low," but won't give you an exact figure.

Now, if they are looking for something specific other than celiac with this scope, that's different. But if they just want to confirm positive bloodwork, I believe that it is totally unnecessary.

If celiac is the only thing they are looking for, bloodwork and diet are far more accurate indicators than a biopsy.

Yes, I know the "gold standard" has been the biopsy for decades. But do some research and you'll find that that is starting to change, precisely because the biopsy can be inaccurate, especially in young children, and especially if they just don't happen to biopsy the "right" part.

Like I said before, if it were my child, I would not take the risk for what seems like a pointless fishing expedition that DOES have risks.

My oldest child had open-heart surgery at age 2, and did suffer fairly major cognitive impairment and major developmental regression as a result. I was never told that this was a risk, and in fact, I was totally blown off by everyone in the hospital when I pointed out that he could no longer talk and wouldn't look at me.

Now, this really was a life-saving surgery, so if I had to do it again, I would still let them do the surgery. But I use this as an example of how they don't REALLY tell you the risks, and when there is a problem, they NEVER admit liability. EVER.

[arlingtonmom]

Fiddle Faddle, thanks for your input. Unfortunately, my son's blood tests were negative, but because he's so young and because he is experiencing symptoms which strongly suggest celiac our doctor has suggested he be scoped, and I agree. Also, the Enterolab test showed that he was having a immune reaction to gluten. And, I would still like to pursue a firm diagnosis because I'm not sure I want to rely entirely on Enterolab.

Electra, thanks so much for the personal message and feedback. Everyone has given me such positive feedback about Dr. Fasano, but I do have a concern I'd like to address. My three year old son was originally referred to a ped endo because he was not growing well, and he had fallen off his growth charts. An endo at Univ of Md was recommended to us. She ran a lot of tests. One of the tests was the celiac blood tests. My son's blood test came up negative; however, the tests did show that he had the DQ2 gene. The ped endo then told me that the blood tests were extremely reliable, and that if he were going to have a reaction to gluten it would have shown up by age two in the blood.

From my own research I knew that Celiac can manifest at different times after the age of two, and that the blood test aren't always so reliable in three year olds. Also, my son was having gi symptoms. She told us to come back in six months to explore other options such as a growth hormone deficiency, but I wanted to pursue celiac further before I eliminated it as a possibility. I ordered the Enterolab test, and the test showed that my son was having an immune reaction to gluten, and that he had two gluten sensitive genes. I called back the endo to ask for her read on it. She consulted with Dr. Fasano, and then, told me that the Enterolab tests were unreliable, and my ped endo stated that based on her conversation with Dr. Fasano it wasn't necessary to further pursue celiac. Now, I am not surprised that Dr. Fasano dismissed the Enterolab testing, but I was surprised that he didn't suggest to the ped endo that my son could still be a celiac. When I called Columbia it was the complete opposite, and they told me he should definitely be seen. Anyway, I guess I'm concerned that I'll cancel this appointment at Georgetown, and then, Dr. Fasano will dismiss us. Any thoughts from Electra or others?

Thanks again for taking the time to help. I really appreciate it.

[Electra375]

I'm sorry the situation w Fasano was not better. I have not any idea why the consult w Fasano resulted in a 'no'. But I'm sure it had something to do w what he saw or didn't see on the lab work (if he was consulted at all).

But if that is the case, stick w the Pedi GI who is helping you.

It is possible that the endo did not run the full panel done only at Prometheus labs, but that would not sound right coming from UofMD. Did they run Total Serum IgA and the IgG tests (two of them now)? I would suggest getting copies and knowing for yourself exactly what they mean.

For example, one of my children was negative for AGA, EMA, TTG on the IgA scale. He also happens to have low IgA, not necessarily "deficient", but low enough to skew the results. He was IgG AGA positive. And he has DQ2. Dr. Fasano was supportive that our ds is Celiac, but wanted to make a firm gold standard dx with the biopsy. The instances of IgA deficiency in Celiacs is 10X higher than in the general population, yet at the time testing did not account for this phenomenon!!! Now they have the TTG IgG and I hope they used it on my other son who recently was tested (I say to, but you never know until the results come in if they did what they said they were going to do).

PUBMED research on the blood tests indicates that in absence of total villi atrophy they are around 33% effective at catching the disease. Children are not likely to have TOTAL VILLI ATROPHY. Children also do not possess a full antibody range and these tests were designed to catch the anitbodies in adults. Children under 3 have less IgA antibodies (and others like IgE, hence allergy tests in young children also are not reliable).

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I used to have the entire article on both the biopsy and blood tests accuracy related to lesser degrees of atrophy. I can't locate the other articles at this moment. Maybe they are already at The Gluten File

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What is completely reliable is the gene marker test. If you have the gene, you have the gene.

Even the biopsy is only 29% effective in absence of total villi atrophy. The entire testing available today is mediocre at best and very frustrating. It's no wonder there are so many people who are "undx" and live gluten-free b/c the tests failed their case.

Gluten your baby up really well and hope for the best with the biopsy. I know w my ds his body began healing between each serving of gluten. I think the best chance for a positive biopsy is to eat gluten 6X per day plus, breakfast, lunch, dinner, snacks and desert. Skip healthy stuff for a few weeks prior, other than Whole Wheat bread which has a higher gluten content than white processed bread.

[Nic]

When my son had his biopsy and it came back negative, the doctor chose to send it on to Columbia but only because he was so sure the blood was showing Celiac. We could have just gone with the positive bloodwork but I really wanted to be sure because I didn't want to be missing some other cause for his symptoms and he was in so much pain I needed to be sure. I also didn't want to change around his whole diet and then be wrong.

Nicole

[Phyllis28]

You can keep the appointment at Georgetown and make an appointment at Columbia. When the results come in from Georgetown you can decide to cancel or keep the Columbia appointment.

[Fiddle-Faddle]

Best of luck,whatever you decide. Please keep us posted!

[arlingtonmom]

Thanks so much for everyone's thoughtful responses. I'm going to keep the appointment with Georgetown. I looked up the ped gi's bio again, and she did her ped gi fellowship at Columbia, so I'm hoping she had some training in the Celiac Center. I'm scheduled to have a scope the day after my son, so hopefully we'll start getting some answers. I'll keep you posted, and thanks for your help.

Electra375, thanks for all the information. It's so upsetting that even the biopsy isn't too reliable. I have heard wonderful things about Dr. Fasano, and I wasn't part of the conversation, so perhaps it was a problem with the ped endo asking the right questions or relaying the info to me. Also, thanks for the tip about really loading him up with gluten before the biopsy. I was told not to avoid it, but I had no idea he needed to eat so much. Looks like I better send his own snacks to preschool this week.

Thanks again.