3Yr Old, +Enterolab But -Blood & -Biobsy, Twin Sis Has Celiac

[MaZoodleTwins]

How common is it for someone to have Celiac Disease with a negative biobsy & bloodtest but a positive Gluten Sensitivity Stool Test from Enterolab & family history of Celiac Disease?

Our history/symptoms: my Mom has Celiac Disease and in May we had both of my girls(fraternal twins) do a bloodtest to check for Celiac. Madisons came back positive but Zoeys came back negative, however they both have a lot of the same symptoms so I did the Enterolab Gluten Sensitivity Stool Test for Zoey and her results were 176 Units with LESS than 10 being normal and it said she had an active gluten sensitivity. So on Tuesday she had an Endoscope, the GI Dr said that she had mild blunting but nothing that looked like Celiac Disease to him. They called with the biobsy results today and said that her results were normal and she did not have Celiac Disease. The GI Dr pretty much said he didn't think anything of the Enterolab test results, I may as well have given him a crayon drawing saying she had a positive fecal stool test.

Both of my girls symptoms have been abdominal pain-right around the belly button area, this is a daily pain, sometimes mild, sometimes severe. CONSTANT constipation, the only thing that has ever helped them is daily Miralax. They are both smaller than average, Madison(the one dx with Celiac) isn't even on the chart for height/weight and Zoey is in the 10th percentile. They both get irritable & hyper(of course this might be an age thing)

I am finding it VERY hard to believe that Zoey doesn't also have Celiac Disease because of the family history and her symptoms...something has to be causing her abdominal pain & constant constipation. And from what I've read, it is VERY common to get false negatives on both blood tests and biobsy...is that right?

Any help would be much appreciated

[psawyer]

Does anybody know of anybody who actually had a negative Gluten Sensitivity Stool Test from Enterolab? Just asking.

[Lisa]

I don't have much confidence in Enterolab, but that's my personal opinion.

I would suggest that you put them both on a gluten free diet and document their symptoms, along with a food diary. But, their diet MUST be 100%. The smallest amount of gluten will retard any healing. Good luck.

[pain*in*my*gut]

How common is it for someone to have Celiac Disease with a negative biobsy & bloodtest but a positive Gluten Sensitivity Stool Test from Enterolab & family history of Celiac Disease?

Our history/symptoms: my Mom has Celiac Disease and in May we had both of my girls(fraternal twins) do a bloodtest to check for Celiac. Madisons came back positive but Zoeys came back negative, however they both have a lot of the same symptoms so I did the Enterolab Gluten Sensitivity Stool Test for Zoey and her results were 176 Units with LESS than 10 being normal and it said she had an active gluten sensitivity. So on Tuesday she had an Endoscope, the GI Dr said that she had mild blunting but nothing that looked like Celiac Disease to him. They called with the biobsy results today and said that her results were normal and she did not have Celiac Disease. The GI Dr pretty much said he didn't think anything of the Enterolab test results, I may as well have given him a crayon drawing saying she had a positive fecal stool test.

Both of my girls symptoms have been abdominal pain-right around the belly button area, this is a daily pain, sometimes mild, sometimes severe. CONSTANT constipation, the only thing that has ever helped them is daily Miralax. They are both smaller than average, Madison(the one dx with Celiac) isn't even on the chart for height/weight and Zoey is in the 10th percentile. They both get irritable & hyper(of course this might be an age thing)

I am finding it VERY hard to believe that Zoey doesn't also have Celiac Disease because of the family history and her symptoms...something has to be causing her abdominal pain & constant constipation. And from what I've read, it is VERY common to get false negatives on both blood tests and biobsy...is that right?

Any help would be much appreciated

The GI doc said she had "mild blunting"? Ummm...that's consistant with Celiac! Lots of docs won't DX Celiac unless the villi are totally gone. Get a copy of the actual pathology report and see what it says. Has she had the genetic test to see if she has the gene? What blood tests did she have? Many docs don't do a full Celiac panel, and it's important with children to do both IgA and IgG versions of all the tests. Get a copy of those, too if you haven't already. Sometimes a "mild positive" is reported by the docs as negative. There is so much ignorance amongst the medical community about Celiac that you almost have to take matters into your own hands if you are not a textbook Celiac patient.

Zoey probably has Celiac, I agree with you. If all else fails, and you can't get the docs to give you a dx, I would have her go gluten-free and see how she does. I'll bet you get your answer right there!

[psawyer]

Mild blunting (Marsh I) is a very strong indication of celiac disease. There are other possible causes, but they are rare (severe alcoholism is one).

[MaZoodleTwins]

Does anybody know of anybody who actually had a negative Gluten Sensitivity Stool Test from Enterolab? Just asking.

Yes, my test from Enterolab was actually negative, my result was 9 units(with less than 10 being normal/negative). So everyone doesn't get a positive.

[MaZoodleTwins]

The GI doc said she had "mild blunting"? Ummm...that's consistant with Celiac! Lots of docs won't DX Celiac unless the villi are totally gone. Get a copy of the actual pathology report and see what it says. Has she had the genetic test to see if she has the gene? What blood tests did she have? Many docs don't do a full Celiac panel, and it's important with children to do both IgA and IgG versions of all the tests. Get a copy of those, too if you haven't already. Sometimes a "mild positive" is reported by the docs as negative. There is so much ignorance amongst the medical community about Celiac that you almost have to take matters into your own hands if you are not a textbook Celiac patient.

Zoey probably has Celiac, I agree with you. If all else fails, and you can't get the docs to give you a dx, I would have her go gluten-free and see how she does. I'll bet you get your answer right there!

I thought the same thing about 'mild blunting' like it HAD to be caused by something! One of the things he said was 'well she doesn't have classic Celiac symptoms-meaning diarrhea' and I reminded him that her twin sister with Celiac has the same symptoms. And that some people with Celiac have no symptoms or 1 totally vague symptom(I don't think he agreed) I will ask for a copy of the biobsy results as well as a copy of the blood tests. I'm not sure what blood test were done but will find out.

Both my girls, my husband and myself have all switched to Gluten Free as of Thursday, so our entire house will be gluten-free from now on. The reason I told the GI Dr I wanted to know for sure is for a few reasons, 1 being that if Zoey didn't actually have Celiac when she is old enough to go to school she would be allowed to eat gluten containing food or if she goes to a friends house or something. But if she has Celiac then obviously she wouldn't be allowed to ever have it. AND I know that w/out an 'official' dx, the school or other places aren't going to take it as serious. Madison has a follow up appt in August with the GI Dr so I am going to keep a detailed log of both girls progress on the gluten-free diet, I have a sneaky suspicion that stomach pain & constipation is going to magically dissapear and I'll see what he says about that.

Thanks for your reply

[MaZoodleTwins]

Mild blunting (Marsh I) is a very strong indication of celiac disease. There are other possible causes, but they are rare (severe alcoholism is one).

Thanks, this is very interesting. The GI Dr saw the mild blunting when he was doing the Endoscope(he told us this after her procedure), I'm not sure if there was any blunting when they looked at the biobsy pieces, does that make a difference? All the nurse told me about the biobsy was that it was normal and she didn't have Celiac.

[sa1937]

Thanks, this is very interesting. The GI Dr saw the mild blunting when he was doing the Endoscope(he told us this after her procedure), I'm not sure if there was any blunting when they looked at the biobsy pieces, does that make a difference? All the nurse told me about the biobsy was that it was normal and she didn't have Celiac.

If the doctor could visually see "mild blunting", well, I'd say she has it. Usually damage isn't even visible until it's viewed under a microscope by a pathologist. If damage is patchy, the biopsies may have been taken in areas that aren't yet damaged. Be sure to pick up a copy of the actual pathology report.

[nora-n]

I heard of others with mild blunting, and they got diagnosed with celiac.

Also, several people have gotten diagnosis with just increased intraepitelial lymphocytes.

Did they ever count them?

How many samples did they take?

[1974girl]

I have a child who was diagnosed by "mild blunting" only. The doctor seemed very pleased that we/he had caught it early. Someone told me that you can send her slides somewhere else for a free second opinion. (They have to keep those slides for a long, long time) Maybe it was the University of Chicago Celiac Center. They have a hotline you can call for advice, too. Also, they have an awesome gluten-free basket they will send to you if you have had a pos. biopsy. So get that at least for your other daughter. It was full sized samples of yummy gluten-free food. I bet $50-$75 worth. I think I'd call their hotline and ask about that "mild blunting". I have a feeling I know what they are going to say.

Open Original Shared Link (click under living with celiac for both the gift box and the hotline)

[MaZoodleTwins]

If the doctor could visually see "mild blunting", well, I'd say she has it. Usually damage isn't even visible until it's viewed under a microscope by a pathologist. If damage is patchy, the biopsies may have been taken in areas that aren't yet damaged. Be sure to pick up a copy of the actual pathology report.

How do I get a copy of the pathology report, just ask the GI office? Will the pathology report have what the GI Dr saw AND the biobsy results? Our GI Dr told us that he took samples of the mild blunted area as well as some other places but I have no idea how many he actually took. I do know that since her bloodwork was negative he went into this entire thing with the attitude(albeit nice) that she certainly does not have Celiac. He didn't even order pre-Endoscope bloodwork for her but he did for our other twin.

[MaZoodleTwins]

I heard of others with mild blunting, and they got diagnosed with celiac.

Also, several people have gotten diagnosis with just increased intraepitelial lymphocytes.

Did they ever count them?

How many samples did they take?

The GI Dr didn't mention anything about intraepitelial lymphocytes so I have no idea if they counted them. I'm not sure how many samples they took? Would the pathology report tell me that(because I'm going to get it)

[MaZoodleTwins]

I have a child who was diagnosed by "mild blunting" only. The doctor seemed very pleased that we/he had caught it early. Someone told me that you can send her slides somewhere else for a free second opinion. (They have to keep those slides for a long, long time) Maybe it was the University of Chicago Celiac Center. They have a hotline you can call for advice, too. Also, they have an awesome gluten-free basket they will send to you if you have had a pos. biopsy. So get that at least for your other daughter. It was full sized samples of yummy gluten-free food. I bet $50-$75 worth. I think I'd call their hotline and ask about that "mild blunting". I have a feeling I know what they are going to say.

Open Original Shared Link (click under living with celiac for both the gift box and the hotline)

Did your child with the "mild blunting" have a positive bloodtest? Our daughter Madison with Celiac has had symptoms for a much longer time than Zoey so if Zoey has Celiac I am certain we are catching it at a very early stage. Like I was just remembering earlier, Madison(dd w/Celiac) has always had tummy problems since birth, always had constipation. But Zoey didn't start getting constipated till probably over a year ago and she went from consistently being in the 40th% for height to now being in the 10th%. I'm rambling here but I really am just remembering that stuff more.

THANK YOU so much for giving me the info about The University of Chicago!!

I am definately going to call them tomorrow and explain Zoeys situation and see what they suggest. And I'll see if I can get Madison a basket of goodies, which of course I would say was for both of them. I'm sure that would make them both feel pretty special since they keep asking me why can other kids eat certain things and they can't like it really hurts their feelings.

[kareng]

How do I get a copy of the pathology report, just ask the GI office? Will the pathology report have what the GI Dr saw AND the biobsy results? Our GI Dr told us that he took samples of the mild blunted area as well as some other places but I have no idea how many he actually took. I do know that since her bloodwork was negative he went into this entire thing with the attitude(albeit nice) that she certainly does not have Celiac. He didn't even order pre-Endoscope bloodwork for her but he did for our other twin.

You can get a copy of the procedure report and the biopsy ( pathology) report from the GI doctor. Your regular doctor may have recieved a copy, too. The regular doctor may give you a copy but might not want to. That's a legal thing about it not being his work, etc. Go straight to the GI. The pathology report is made by a special Pathology doctor who is trained to look at tissue at a cellular level and make a diagnosis/observation. He sends the report to the doc who took the biopsy. Similar to a lab sending a report to the doctor who asked for the test.

[MaZoodleTwins]

You can get a copy of the procedure report and the biopsy ( pathology) report from the GI doctor. Your regular doctor may have recieved a copy, too. The regular doctor may give you a copy but might not want to. That's a legal thing about it not being his work, etc. Go straight to the GI. The pathology report is made by a special Pathology doctor who is trained to look at tissue at a cellular level and make a diagnosis/observation. He sends the report to the doc who took the biopsy. Similar to a lab sending a report to the doctor who asked for the test.

Thank You! I feel so lost about all of this stuff but everyone here is being so helpful and nice . I will call the GI office to ask for a copy of the procedure report and pathology report. And I am going to call the Dr office to get a copy of her bloodtest result so I can see what all they tested for.

[sa1937]

I've never had a problem picking up copies of any tests or lab work I've had done so I hope you won't either. Since everything is computerized, all they do is print out copies for me, which I have to sign for. That includes blood work, too. I keep all of it in a file folder for future reference.

When I had my endoscopy, my GI was not visually able to see damage but the pathology report did indicate villous blunting, which only showed up under a microscope.

[VydorScope]

Does anybody know of anybody who actually had a negative Gluten Sensitivity Stool Test from Enterolab? Just asking.

Ive been reading Enterolab posts for the last 30-45 mins on this board alone and found some. I would expect a very high % of positive results since most people will only pay the money and do the test if they have good reason to believe it will be positive. This is not a support of them, just answer to your question. To be clear, I do not know much about their accuracy/etc. I am only stating that I would expect a high % of positive test results regardless of any other information because of the self selecting nature of their clients.

[VydorScope]

Thank You! I feel so lost about all of this stuff but everyone here is being so helpful and nice . I will call the GI office to ask for a copy of the procedure report and pathology report. And I am going to call the Dr office to get a copy of her bloodtest result so I can see what all they tested for.

I am sorry if you said this already, but have you tired the gluten-free diet with him yet? I know you are in the middle of testing, so if you plan to do more tests you should wait on the gluten-free diet, otherwise that will give you the best information at this stage. If you take gluten out of his diet and he gets better, then you know to keep him gluten-free regardless of any labeling by his doc.

[MaZoodleTwins]

I've never had a problem picking up copies of any tests or lab work I've had done so I hope you won't either. Since everything is computerized, all they do is print out copies for me, which I have to sign for. That includes blood work, too. I keep all of it in a file folder for future reference.

When I had my endoscopy, my GI was not visually able to see damage but the pathology report did indicate villous blunting, which only showed up under a microscope.

Thanks, I called the GI office and they said I have to get them from the medical records office(the GI is at a childrens hospital) so I called them and have to fill out paperwork and then fax or mail it back. The paper I have to fill out it a little confusing and I don't even know what boxes to check, I don't see why the GI Dr can't just give me a copy of the stuff. I'll fill out the paper(hopefully correctly) but I have a feeling they won't even send me everything I actually want.

I'll be really curious to see what the pathology report says, they didn't give me any details, just said it was negative for Celiac.

[MaZoodleTwins]

Ive been reading Enterolab posts for the last 30-45 mins on this board alone and found some. I would expect a very high % of positive results since most people will only pay the money and do the test if they have good reason to believe it will be positive. This is not a support of them, just answer to your question. To be clear, I do not know much about their accuracy/etc. I am only stating that I would expect a high % of positive test results regardless of any other information because of the self selecting nature of their clients.

Before I decided to test through Enterolab I researched them a lot and found quite a few people who had negative results. Or 1 of their kids would be negative and 1 would be positive. And MY results were negative.

[MaZoodleTwins]

I am sorry if you said this already, but have you tired the gluten-free diet with him yet? I know you are in the middle of testing, so if you plan to do more tests you should wait on the gluten-free diet, otherwise that will give you the best information at this stage. If you take gluten out of his diet and he gets better, then you know to keep him gluten-free regardless of any labeling by his doc.

I don't have a son, this is for my daughter. One of my girls had a positve blood & biobsy for Celiac, we made the decision for the 4 of us to go completely gluten free and we started the diet last Thursday. Zoey is done with all of her testing, she had her Endoscope last Tuesday. Thanks

[sa1937]

Thanks, I called the GI office and they said I have to get them from the medical records office(the GI is at a childrens hospital) so I called them and have to fill out paperwork and then fax or mail it back. The paper I have to fill out it a little confusing and I don't even know what boxes to check, I don't see why the GI Dr can't just give me a copy of the stuff. I'll fill out the paper(hopefully correctly) but I have a feeling they won't even send me everything I actually want.

I'll be really curious to see what the pathology report says, they didn't give me any details, just said it was negative for Celiac.

Well that's a pain in the butt just to get your hands on a piece of paper or three. Could you have someone at your GI's office help you complete the paperwork to make sure you get what you need?

[VydorScope]

I don't have a son, this is for my daughter. One of my girls had a positve blood & biobsy for Celiac, we made the decision for the 4 of us to go completely gluten free and we started the diet last Thursday. Zoey is done with all of her testing, she had her Endoscope last Tuesday. Thanks

:o :o

OH!!! Sorry about getting your child's gender wrong. :(

Have you seen any change on the diet?

[MaZoodleTwins]

Well that's a pain in the butt just to get your hands on a piece of paper or three. Could you have someone at your GI's office help you complete the paperwork to make sure you get what you need?

I feel like it is a huge pain in the butt, anytime I call the GI office I end up getting transferred somewhere else. I was asking the lady at the GI office yesterday and she said she didn't know anything about it that I had to talk to the records department. I am having my husband fax the forms today while he is at work and I will call the records dept after he has sent them to make sure they understand what papers I actually want. If they were closer I would just drive there but it is 30min one way and I'd have to drag my twins along and the records dept already told me that they won't print anything on the spot.

I should receive the reports next week sometime so when I get them I will post the results...and if I actually get the right things.