Biopsy Needed For 3 Year Old?

[leelee]

Hello all.

New to this hope it is acceptable.

My 3 year old son was recently given the celiac panel blood test. His numbers came back very high and therefore a probable positive call for celiac disease.

He was tested due to stature alone- other symptoms sketchy at best. IE he is not suffering in any way.

The pediatric gastro has been clear that he feels that a diet change should not take place until after an endoscope and bowel biopsy.

I understand that this is the most efficient method of diagnosis. (blood test, scope/biopsy, diet, scope/biospsy again).

I really want to avoid this procedure for my little 25# guy if possible. Which the Dr. seems to feel - its not possible.

I have been thinking as a means to possibly detour this plan we could change diet first for a few weeks or months and since he is relatively symptom free we could then do another bood panel. If the numbers have gone down significantly couldn't we get our answer that way?

Since I'm not an expert or even a seasoned parent I'm looking for other opinions. I would certainly go ahead and do as suggested if that is the best thing to do.

Any opinions, information or suggestions would be welcomed.

thank you!!

[key]

We are currently going through the same thing sort of with my 13 month old. He is underweight, but also has diarrhea. I have changed his diet, but he is scheduled for the biopsy in June. I am going through the same thing about whether to do the test. It sounds like your little guy is small at 25 lbs. Is he on the chart? Everyone here says the test isn't so bad. We have been through alot of tests for everything and I am tired, but we are actually out of town and can't do the test. HE is definitely responding to the gluten-free diet though. It is amazing.

Keep us posted.

Monica

[KaitiUSA]

I only had blood tests done. I did not have a biopsy for my diagnosis because my blood tests were so high. The biopsy on your child may come back negative if he doesn't have any damage there yet. I would put him on a gluten free diet after hearing the results. There are blood tests that are very specific for celiac. Has he also had a gene test done?

Also an Enterolab may be a way to go instead of a biopsy if you want something more than a blood test(i personally would be satisfied with the blood test)...they test for genes, malabsorption, sensitivity and so forth through stool samples.

This is a great site for info and support...welcome Good luck

[KaitiUSA]

Monica-

Your son is on a gluten free diet? Before a biopsy? That can make his intestines heal and make the biopsy come back inaccurate.

[tarnalberry]

leelee,

I'm not one to regularly suggest that biopsies need to be performed, but in this case, if they're going to get him in quickly, I would make an argument for it. Not because it is a "better" diagnosis, but because it is a more easily accepted diagnosis in the medical community and that may aid you in dealing with your child's doctor(s), teachers, schools, caretakers, etc. This may be your best opportunity to get a classic diagnosis, and at age 3, he is more likely to have a positive biopsy than were the biopsy to have taken place a year ago.

Of course, at the end of the day, it is your call, but do not take him off gluten before the biopsy if you intend to go through with it as it will skew the results.

[Guest taweavmo3]

That's a tough call....and I've been in your shoes before. My now 3 year old had the biopsy done about two months ago. She is really tiny....only 20lbs at the time. I hope I can alleviate some fears you may have.

I had worried myself sick over the biopsy, but it was SO easy. We got into the GI lab about 9:00am, and we were driving home two hours later. The actual procedure only took about 20 minutes, and they didn't even change her out of her regular clothes (every little thing helps!). She woke up very easily, and wasn't even cranky. By noon that same day, she was eating a taco and running around the house playing like nothing had happened at all.

In our case, it was well worth it. Like someone else said.....at such an early age, you really need a concrete diagnosis to get any aid from the school or state. I am finally getting a ped. to acknowledge that Emmie has a developmental delay, and I'll be more likely to get early childhood intervention if she has a diagnosis. I have also found that most doctors aren't that familiar with Celiac, and I feel better armed to deal with them since I have "proof". Even our new ped, who has another celiac patient, told me Emmie sure didn't "look" like a celiac kid. I don't know what part of her big belly, dark circles, frail arms and legs and 20lb, 3 year old body didn't scream Celiac to him, but hey.....he's a doctor, he must know, lol. Sorry, didn't mean to vent on ya there, but it's been a frustrating road to say the least!

One more plus to getting a biopsy....since I know without a doubt that Emmie has damage in her small intestine, it has helped me stick whole heartedly to the diet, no matter how difficult. I honestly see gluten as poison now, damaging her little body. If I didn't have that proof, I really think it would be easier for me to give in every now and then...especially when she's begging and crying for some of her brother's snacks.

Hope that helps....maybe you have more willpower than me! But, if it's just he actual procedure you are worried about........it was WAY easier than I could have ever imagined. Good luck with what you decide.

[CarolynM]

Hi, my daughter was biopsied last summer at just under 3 yrs old. The procedure wasn't bad. She was very cranky when coming out of anesthesia. Like fighting sleep times a hundred. In our case, that was the upside - the downside was hers did not show damage. I hoped things had somehow resolved themselves - we went nearly gluten-free after biopsy and had cut out pasta prior to biopsy. After results, returned to a completely normal diet and 2 weeks of no solid stools. We then chose to go gluten-free. She is so much healthier and happier. Why no damage showed I can only guess - found it too soon, didn't take samples from damaged areas? Perhaps she is "only" gluten-sensitive.

Having the biopsy cost us money and time - delayed starting gluten-free by 2 months. Again, it is your choice, but, keep in mind, the biopsy won't always give conclusive answers.

[leelee]

My three year old has recently tested abnormal on celiac disease panel of blood tests. He is virtually symptom free (of any noticable symptoms). He was referred for the panel due to stature alone.

Now....

Dr. says no gluten-free diet unless diagnosis confirmed with endoscope & bowel biopsy.

I really don't want my little 25# guy going through that if it can be avoided. I was wondering if - couldn't we do a gluten-free diet for many weeks and then have the panel taken again? If the numbers drop - celiac disease! I know this disease is fickle - some have abnormal results but don't have celiac disease, some have normal results are celiac disease, etc...

but since his tests already came back very high wouldn't a drop after a gluten-free diet be enough of an indication that celiac disease is present?

I'm no dr. not even a seasoned patient or parent of celiac disease so I'm looking for opinions from those of you who are.

He has to have surgery in June to remove tubes that never fell out, we can NOT do both surgeries at the same time due to hospital rights. 2 surgeries in one summer - I'd just rather not if possible.

thanks for your input!!

[leelee]

Oh my goodness! such warm willing advice from strangers. You all are giving your thoughts and time and I think that is commendable and wonderful! Moving on now....

Monica, I KNOW the I'm tired and want to be done feeling! Micky IS on the charts- in the 3rd percentile ( or at least at 3 yr old check up he was still there) not on by much but on. That is actually why he's never been referred to a celiac disease panel before- the other drs in the peds group always said that since he was following the same curve consistently he wasn't digressing or falling off charts so he's fine - just small.

well, the last ped we saw in the group (for pnumonia re-check) didn't agree and suggested the panel and well- here we are. I'll sure keep you in my thoughts - good luck - your little one is awfully young for such things - but maybe it will be resolved soon which I find is 1/2 the problem - the unknown. Oh - I know nothing but I did catch that he is doing a scope/biopsy in june and you have him on gluten-free diet now. My doc said that was a no no. effects results because bowel improves so much if celiac disease is the problem. just FYI - good luck and thanks!

[leelee]

Ok - try to respond to all the lovely people who replied.

Kati thank you for the welcome. No gene tests have been done. thanks for the info - the more the better! (Your name pops up a lot you are very forth giving with the obvious plethora of info you have! yah you)

CarolynM- yuk- what an experience. I'm glad you went gluten-free anyway and see improvements! Good luck!!

tarnalberry, I thought hmmm, food for thought ( I never thought of that) thanks. And then I read taweavmo3, and between the two of you I think we really have a lot to think about now. what good advice!

taweavmo3, thank you. I really appreciate the note from a kidred soul. It sounds like the procedure isn't too bad, but maybe worth it any way. Both reasons are very sound to me. And I'm a special ed teacher so I should have thought of that!

Will power - not so much or wouln't be 20 # OVER weight.

I think that you're right - the conclusive dx would probably be more motivating to keep to the diet.

How old is big brother? My other one is 5. Do you all go somewhat gluten-free or just your daughter?

Thanks again! I will be sure to check in here frequently now I think - meeting nice folks does that!

[KaitiUSA]

Some tests for celiac are very specfic and have a very low false positive rate. I was diagnosed only through blood tests. The gene test is a good thing to have done. An Enterolab may be something to consider. They do testing through stool samples and test for genes, malabsorption, gluten sensitivity, tTG, and so forth. It is not widely accepted by the medical community but I think they are very good

[mommida]

I think you should talk to the doctor who will be doing the endo. with biop. Have the Dr. explain more of the procedure to you. How many cases of Celiac has he/she diagnosed? What exactly is he/she looking for? Can the Dr. show you slides?

Nothing would be worse than having the Dr. say something very ignorant, right after the procedure was done. Let me tell you from experience, you will not trust any result you get if that happens.

Good luck with your decision and my thoughts and prayers are with you.

L.

[mommida]

What you have written makes perfect sense. The blood test panel on the gluten free diet results, would tell you if gluten was the issue. The blood test is done again at a 6 month check after diagnoses to see if the gluten free diet is being followed correctly.

I have a nagging feeling you might have some issues with the doctor. Have this doctor explain everything to you, and if you don't feel comfortable with him or her get a different doctor. The testing is not as reliable as it should be for diagnoses and the doctor's experience/knowledge in Celiac is crucial. If you're going to do the biopsy, it's now or never. If you go on gluten free diet you will never willingly go on gluten again. 2 surgeries this summer, I feel awful for you to be in this position.

L.

[mom2gf]

As a fellow mom of a celiac-diagnosed child, I feel very strongly that you should go ahead with the endoscopy. As they say, it's still the "gold standard" for diagnosing this disease. The blood tests are a good start, but really only provide part of the picture. With regard to Enterolab, I can't imagine making such a critical diagnosis about my child through a mail-away service.

I, too, was worried about the procedure and how it would affect my daughter, but looking back, it was no big deal. In her case, the doctor was able to make the diagnosis right there because she had visual damage to her intestine. The biopsy gave us final confirmation. Knowing the full picture gave us the resolve to be vigilant about her diet, which, as you know, can be challenging. Sometimes I still walk through the aisles of the grocery store and can't believe how how many things she will never be able to eat again.

After nearly two years on the diet, my daughter is thriving and her most recent blood test showed absolutely no sensitivity to gluten (which means we've gotten it all out of her system).

There are also some practical reasons to get a proper diagnosis: With our insurance, I have to get referrals each time she see's the specialist, and I'm not sure her yearly follow ups and bloodwork would be authorized without the diagnosis. I've also noticed that our specialist (Fasano) is much easier to get an appointment with now.

Whatever you decide, best of luck!

[key]

I know that the biopsy probably won't be accurate with him on the diet, but he was SO sick on gluten that I was afraid of dehydration, etc. I called my pediatrician and told him I had him on the diet and he said to keep him on the diet, that he probably has the celiac disease. I am out of town for six weeks and had no way of testing him. He has had the blood work done and so I am hoping that when we get home and his levels drop on the diet and he is no longer failure to thrive, they will diagnose him. Anyone that knows how sick he was and how well he is doing now would be a believer. He has probably gained at least a pound in two weeks, is happy ALL the time now, jabbering, playing. So nice to see him happy. Plus he had his very first poopoo that was 100% normal this weekend!!! I could have jumped for joy. No undigested food, no diarrhea and smelled normal. He actually went a whole 24 hours without a BM. A record for him! LOL!

I am so pleased with what the diet has done for him.

I have to say that grocery shopping is really interesting now. There is basically nothing he can have once I have left the produce section. A few other things, but not much. Oh and he isn't tolerating dairy either, so one other food group he can't have. Maybe once he has been on this diet for awhile.

Ok, bye for now!

MOnica

[Guest taweavmo3]

leelee- My oldest just turned 6. He eats gluten, but not nearly as much as before his sister was diagnosed. Instead of bread for sandwiches, I use tortillas. I'm a nut though, I'm just paranoid about regular bread crumbs contaminating my daughters food. Since flour tortillas aren't as crumbly, I don't get as worried. I'm slowly eliminating alot of his regular snacks too. I had a ton of graham crackers, animal crackers, pretzels, and chips to go through. Now that those are almost gone, I don't plan on buying much more. I'm trying to buy snacks that they can all eat, like Fritos or corn chips, popcorn, cereal, rice cakes, fruit, yogurt and cheese, etc. It's just easier.....I don't have to watch Emmie like a hawk making sure she doesn't sneak a bite of her brother's food, or sneak into the pantry for something.

I haven't purposely had our whole family go gluten free, but with Emmie being too little to really understand why she can't have something, it's just easier to not have the temptation right out in front of her. Slowly, alot of the main source of gluten in our diet has dwindled. I actually had regular pizza the other night at work, and it tasted so greasy and heavy! I actually like the Kinnikinnik pizza way better. NEVER thought I'd say that in a million years. I still haven't gotten used to the pasta yet, but it's getting easier.

I think my smallest child, Ben who's 13 months, may be celiac. He is following the exact same pattern as my daughter, but his stools are softer and even more frequent. So, I foresee a complete gluten free family in the next few months if he's positive too!