5 Year Old -- Does She Need A Biopsy?

[stacytr]

My daughter's pediatrician called me on Friday and said that the celiac panel on her labs all came back positive. She said we

[Sesara]

My daughter's pediatrician called me on Friday and said that the celiac panel on her labs all came back positive. She said we

[1974girl]

I had mine scoped after a positive blood test because I was in denial myself. However, my 2nd child will be retested next month. If she is positive, we will not scope. Did she have the EMA antibody come back positive? That one is like 99% right if positive. Question to the poster above: My daughers EMA test only showed "Positive"...they didn't give a range to judge by. Was that correct?

[VydorScope]

What Sesara is very true, but faced with the same decision my wife and I decided it was not worth the risk (endoscope is safe, but there are risks to it) and we are going forward knowing he has it regardless of any label from the doctor. You already know he has Celiac from the blood test, so the endo will give you no new information, just a label (assuming it comes back positive, false negatives do happen).

Take what Sesara says in to consideration, but personally for me and my son, I would not do it.

[stacytr]

Ok just got off the phone with the dr -- here are her #'s:

deamidated gliadin IgA 108

deamidated gliadin IgG 96

ttrans IgA 100

ttrans IgG 4

general/regular IgA count (to make sure her numbers were normal) 301

I asked about EMA (what is that?) and apparently they didn't test it.

So should I request another blood test for the gene and EMA?

[squirmingitch]

You also need to get & post the ranges for her tests otherwise the #'s you posted mean nothing to us. Different labs have different ranges so it's not like one can say, "Oh, 108 is way up there". You understand?

[stacytr]

You also need to get & post the ranges for her tests otherwise the #'s you posted mean nothing to us. Different labs have different ranges so it's not like one can say, "Oh, 108 is way up there". You understand?

Gotcha.

Dr told me that for the first 2, normal is 0-19

For the second 2 normal is 0-3

Does that help?

[stacytr]

You need to talk to your pediatric GI. There are some who will diagnose without a biopsy, provided a list of other standard criteria are met:

The new criteria for a child who has >> continued on page 2 >> continued from page 1 suspected celiac disease because of clini- cal symptoms now allow for a definitive diagnosis without biopsy under certain strictly defined circumstances: 1. The TTG-IgA comes back highly el- evated (greater than 10 times normal); 2. The EMA comes back at least 10 times normal; 3. The patient is positive for at least one of the two genes correlated with celiac dis- ease (DQ 2 or DQ 8); 4. The patient has a positive response to the gluten-free diet'>New Celiac Guidelines

The new criteria for a child who has

suspected celiac disease because of clinical symptoms now allow for a definitive diagnosis without biopsy under certain strictly defined circumstances:

1. The TTG-IgA comes back highly elevated (greater than 10 times normal);

2. The EMA comes back at least 10 times normal;

3. The patient is positive for at least one of the two genes correlated with celiac dis- ease (DQ 2 or DQ 8);

4. The patient has a positive response to the gluten-free diet

Unfortunately, many pediatric GI's have not caught up with the new guidelines and will insist on a biopsy. In that case, you should decide how important a positive diagnosis is to you, and whether you feel she can afford to wait the time it will take to get the biopsy done. Many parents on here will tell you that having a diagnosis opens doors, in that if a school won't cooperate with your requests, you have the ability to develop a 504 plan via the ADA due to your child's condition, and this will carry through to college or a career in the military. Once you go gluten free long enough, you would have to do a gluten challenge to get a positive diagnosis, and many people cannot tolerate the challenge; they just get too sick. So talk to the GI about these concerns from the beginning.

For #2 (EMA) does she need to be back on gluten to get a good/meaningful result?

[1974girl]

It stands for Anti-Endomysial Antibodies (EMA) I personally never understood why it isn't AEA ha ha!

My daughter's pediatrician did not run the EMA because the lab that they always used did not do that one. The GI doctor sent it to an out of state lab to run. I had her scoped and honestly, I am glad I did. They found ulcers and an esphagus problem caused by other food allergis on the way down. But my other daughter has already had the genes tests (she has them), has a sister with it, so positive blood will be enough.

Good luck...honestly, I think I'd just skip the endo and go gluten free with those results. If you have awesome insurance with a low deductible then you could do it. It is very safe generally. It would cost us $2,000 to scope.

[squirmingitch]

Wow. Her #'s are high! Yes, she needs to be on gluten for the EMA. For the gene tests she does not need to be eating gluten but I'm sure you already knew that.

I am wondering if rather than do any more testing at all if her ped would be willing to dx her right now with celiac based on the tests that were done. You should ASK. If you don't ask then you won't get. It's worth a shot. If the ped would do that then you would save yourself and your daughter a lot of grief going through continued gluten eating & more tests.

[Darn210]

We had the scope done but we didn't even know about the celiac disease at that point. We were trying to determine if she had EE. I will say the scoping was not bad at all and she did very well.

That being said, I would go for the official diagnosis. (Yes, it has helped me at my daughter's school.)

If the doc will give a diagnosis without the scope, then I would skip it. He may give it to you based on the blood test alone,. . . or a blood test with a 6 month (or so) trial diet (while expecting to see reduced antibodies from a follow-up blood test and a growth spurt during that time), . . . or he may not give it without the scope. You'll have to talk to the doc. You may want to offer to do the trial diet. We did that for my son and the doc jumped on that offer . . . he didn't usually ask parents to do it but was happy to work with us because WE offered to do it. I think doctors assume that the easiest/quickest way would be to scope and that is what the parent's would want. My kid's doc understood that the scoping was not fool-proof.

[stacytr]

Wow. Her #'s are high! Yes, she needs to be on gluten for the EMA. For the gene tests she does not need to be eating gluten but I'm sure you already knew that.

I am wondering if rather than do any more testing at all if her ped would be willing to dx her right now with celiac based on the tests that were done. You should ASK. If you don't ask then you won't get. It's worth a shot. If the ped would do that then you would save yourself and your daughter a lot of grief going through continued gluten eating & more tests.

I already know the ped won't diagnose her -- she's very by the book and already told me she must have the biopsy and needs to see the GI. Sigh.

We've only been off gluten for a few days -- if we can get in fast, do you think we'd have to go back on gluten for the EMA? (I know that's probably a question for the GI -- I just don't know if s/he will be any good). We have an HMO -- good thing is just a copay for everything (so if we did end up having the endo it wouldn't be at a big cost to us -- just our regular copay). The bad news is less choice of doctors -- it's whoever is on our plan.

[MitziG]

To be positive on ALL of those tests is rare- your dd is definitely celiac. It is a shame your ped is too ignorant to understand that!

Just make sure, regardless of the biopsy results, that she goes gluten-free for life.

[Mom-of-Two]

Personally, I would take all positive results as a good thing, it does not usually happen in little kids! The biopsy is a choice you have to make, I am in a place where my 7yo had high ttg levels and they scoped her and found absolutely no damage, which actually frustrates me to no end. We of course did not want our child to have intestinal damage, but were hoping for something difinitive in the way of a diagnosis. With high ttg and myself having celiac, we have no real doubts, but the pediatric GI would not diagnose with a normal biopsy...so, we are seeing another GI dr, who will do a full celiac panel for starters!

I was extremely nervous about the scope but our daughter did amazing, was back to normal in a few hours.

[Cara in Boston]

My son needed the biopsy because his blood tests were unclear (some high, some normal) and the doctor explained that if there is damage, it is good to know the extent. Then there is something to compare if you need a later endoscopy (to see if the diet is working) My son had almost no symptoms and zero "classic" symptoms.

I really wanted a firm diagnosis before we changed his diet for LIFE and I didn't want to have to do a gluten challenge later (symptoms can get worse the longer you are off gluten).

The biopsy was a piece of cake and he actually enjoyed the whole procedure (the staff at Children's Hospital are wonderful and made it very fun)

It is pretty clear your daughter has celiac - those numbers are high and on multiple tests. Further blood tests are not necessary (a positive EMA is likely, but MD still might not diagnose without endoscopy).

I would continue with a regular diet until you see the GI and find out if she can be diagnosed based on symptoms and blood tests alone. Then you can decide if you want to proceed with an endoscopy.

During the wait, take this time to learn more about the diet and try some new foods. Then, after all testing is done, you will be ready to start the diet 100% without looking back.

Whether or not you get the endoscopy, I feel everyone with young children should try to get an "official" diagnosis. The diet will not be easy for a teenager or college student . . . (not to mention summer camp, schools, military?, who knows what lies ahead?) You need to make sure there is no doubt.

I had a hard time convincing my extended family - even with a positive biopsy - that this was not some wacky fad diet I read about somewhere and wanted to try on my son. . . (they already thought we were weird because we drink organic milk.)

Cara

[stacytr]

We have an appointment next Tuesday with a pediatric GI. (We have to go all the way to Encino from Pasadena -- sigh).

I spoke with him on the phone, and he said it didn't matter what her #'s were, that false positives were possible and that he disagreed strongly with any standard that didn't include endoscopy. He said to go back on a gluten diet till he could do an endoscopy -- which could be possible as early as next Thursday. I asked him what the minimum amount of gluten I could put her on would be and he didn't really answer -- just said to put her back on her regular diet.

I still feel conflicted. I hate the idea of putting her back on a diet that I know isn't good for her. At the same time, my husband was wondering if we should just keep her on a regular gluten diet till after we get back from our trip to Canada (staying in a little town about an hour-and-a-half outside of Calgary). We get back July 11th. I feel like a bad parent for even considering that as a possibility.

I don't even know if I'm asking a question -- just feeling confused as to the best decision and I really appreciate everyone who has so freely given their time and knowledge to guide us through this rocky beginning.

[VydorScope]

Well you need to decide if you care about the actual official dx or not. If you do, you have to follow his advice. I am not a doctor, nor do I play one on the internet, but faced with the same decision with my son, we decided not to go for the biopsy. Others in this thread have opt'd to do it.

It really comes down to what you feel you need for your family and child.

[StephanieL]

If you ever expect to need to have accommodations (more restroom breaks, gluten-free food at school, a special microwave for her to make meals in) you MUST have a DX. Some people have chosen to deduct "special" foods on taxes as well which you would also need a dx for.

I know it's a tough call but is a few weeks on the gluten diet worth knowing? Something only you can answer.

[mamaupupup]

Hi Stacytr--I posted a response under your doctor post, so I won't repeat it here. Just to add, both our girls (twins) are teensy: 32 lbs and 34 lbs at time of biopsies.

Also, to add to your list of doctors to consider: Dr. Drew Kelts at Children's Hospital in Santa Barbara at Cottage Hospital. He is well respected by Dr. Michelle Pietzak at Children's Hospital in LA. I have heard he is up to date on the "biopsy not necessary for diagnosis" front.

It does feel terrible to "poison" a kid for testing...it was exasperating for us because both kids have extreme responses to gluten symptomatically (one had no impulse control and the other had excruciating muscle and joint pain at night). Gluten loading was no walk in the park for us. We just plowed ahead to get through it. So happy we did stay on gluten and that now we are REALLY done!

[stacytr]

Hi Stacytr--I posted a response under your doctor post, so I won't repeat it here. Just to add, both our girls (twins) are teensy: 32 lbs and 34 lbs at time of biopsies.

Also, to add to your list of doctors to consider: Dr. Drew Kelts at Children's Hospital in Santa Barbara at Cottage Hospital. He is well respected by Dr. Michelle Pietzak at Children's Hospital in LA. I have heard he is up to date on the "biopsy not necessary for diagnosis" front.

It does feel terrible to "poison" a kid for testing...it was exasperating for us because both kids have extreme responses to gluten symptomatically (one had no impulse control and the other had excruciating muscle and joint pain at night). Gluten loading was no walk in the park for us. We just plowed ahead to get through it. So happy we did stay on gluten and that now we are REALLY done!

Thank you! I was wondering if I was being too dramatic about reintroducing gluten when we had just taken it out. There is a bit of a sense that I am hurting her on purpose And Em is teeny -- 36 pounds at 5 1/2. And one of her symptoms is urinary frequency/urgency -- I feel so bad for her It was starting to get better being off for a few days. Well I guess it's just a week more.

I'll call our medical group and find out what our other options are for GI's. But we may not have much choice (can't afford to pay out of pocket).

Thanks again for your empathy.

[mommida]

No you are right about having concerns about a gluten challenge now. Our daughter did end up being hospitalized for dehydration because of the gluten challenge. She was about 14-15 months old and still in diapers. That explosive "D" helped give her a UTI, along with the vomitting and "D" to dehydrate her really fast. She was too ill to scope and I made the doctor give the diagnoses through genetic testing. (DQ2 & DQ8)

So I was not a huge advocate for scoping, especially because it seems to me like she has enough to be diagnosed Celiac. Then my daughter developed symptoms like she was being glutened when she was 6. She had a scope done then to diagnose Eosinophilic Esophagitus. There is now a known connection between EoE and Celiac.

Your choices right now seem to be...

Take all the test results you have, add the fact the gluten free diet is showing improvement, get a doctor to right "official" diagnoses from the test results. (Teachers really don't want students getting sick in school and will try to keep your child safe. (but you may run into a lot of ignorant people who just don't get it)

Put her back on gluten. Go for the scope (which could be inconclusive). The scope can also diagnose any other connected disorder, give you a baseline of damage, and hopefully give an undisputed diagnoses of Celiac.

The forum is here to support you. No judgement either way. We have plenty of child scope experiences posts.

[stacytr]

No you are right about having concerns about a gluten challenge now. Our daughter did end up being hospitalized for dehydration because of the gluten challenge. She was about 14-15 months old and still in diapers. That explosive "D" helped give her a UTI, along with the vomitting and "D" to dehydrate her really fast. She was too ill to scope and I made the doctor give the diagnoses through genetic testing. (DQ2 & DQ8)

So I was not a huge advocate for scoping, especially because it seems to me like she has enough to be diagnosed Celiac. Then my daughter developed symptoms like she was being glutened when she was 6. She had a scope done then to diagnose Eosinophilic Esophagitus. There is now a known connection between EoE and Celiac.

Your choices right now seem to be...

Take all the test results you have, add the fact the gluten free diet is showing improvement, get a doctor to right "official" diagnoses from the test results. (Teachers really don't want students getting sick in school and will try to keep your child safe. (but you may run into a lot of ignorant people who just don't get it)

Put her back on gluten. Go for the scope (which could be inconclusive). The scope can also diagnose any other connected disorder, give you a baseline of damage, and hopefully give an undisputed diagnoses of Celiac.

The forum is here to support you. No judgement either way. We have plenty of child scope experiences posts.

Oh I am sorry you had to go through that with your daughter! It's so scary when little ones have to be hospitalized!

I SOOO appreciate the support and lack of judgement. We have decided to go ahead and do the scope -- and have reintroduced gluten. It was a tough call and we went back and forth -- but the idea that a definitive diagnosis might be helpful down the line and that she'd only been off a few days (and so hopefully wouldn't react too badly) finally swayed us. The GI we've been assigned to (HMO) won't diagnose without the scope. I don't like it, but I know that's not uncommon. I'm just praying he's halfway decent. So far it's not been terrible (we started last night) -- though she hasn't eaten a lot.

How much gluten does she need to be eating to have the test be (hopefully) accurate? Do we have to give it at every meal or is once a day enough? Does she need to eat a lot of it (a meal of pasta)

or is a little ok (like a cookie or pretzels as a snack). I asked the GI, but all he said was just to put her back on her old diet (which was a LOT of gluten stuff at every meal).

Thanks again for all the help and support.

[VydorScope]

How much gluten does she need to be eating to have the test be (hopefully) accurate? Do we have to give it at every meal or is once a day enough? Does she need to eat a lot of it (a meal of pasta)

or is a little ok (like a cookie or pretzels as a snack). I asked the GI, but all he said was just to put her back on her old diet (which was a LOT of gluten stuff at every meal).

Thanks again for all the help and support.

No one really knows, it is different for everyone, but the typical advice is a "normal" amount. So what ever amount you would expect a non-celiac kid to eat in that period of time.

[stacytr]

No one really knows, it is different for everyone, but the typical advice is a "normal" amount. So what ever amount you would expect a non-celiac kid to eat in that period of time.

I just find this a little bit funny -- Em doesn't eat that much compared to other kids on any diet! But thanks for your feedback -- that helped me

[squirmingitch]

I've seen amounts listed as the equivalent of 3 & 4 slices of bread per day if that helps any.