Biopsies- How Many Samples?

[beebs]

Two of my kids have had biopsies done. One tested borderline for coeliac and the other negative - they both have long histories of malabsorption syndrome, severe anemia, both have GERD Gastritis and one has all kinds of inflammation that showed up in the biopsy (the one who tested borderline) they both have steatorrhea. I just found out only 3 samples where taken and I have read on here that there should have been between 11 and 13 taken. Is this true??

They are both on long term proton pump inhibitors. My eldest who is 5 was recently put onto a different one because the original one caused psychiatric problems! They are both gluten free since the biopsies. I notice a difference in the eldest - but the one that tested bordeline is as bad as ever - really disgusting stools, fatty, massive and almost completely undigested he is both gluten and lactose free. You can see exactly what he ate the day before. I have no idea where to go from here.

[love2travel]

Only 40% of biopsies in the US and Canada are done CORRECTLY (there is an article on here about this plus I heard this at a lecture on celiac disease) because too few samples are taken. I was told we are to demand at least 8-11 if not more because often only 3-5 are taken, sadly. The more samples that are taken the better chances of an accurate result. If only more doctors were properly trained for this! It is really quite pathetic that we must be doctors ourselves and tell them how to do it...

[beebs]

Only 40% of biopsies in the US and Canada are done CORRECTLY (there is an article on here about this plus I heard this at a lecture on celiac disease) because too few samples are taken. I was told we are to demand at least 8-11 if not more because often only 3-5 are taken, sadly. The more samples that are taken the better chances of an accurate result. If only more doctors were properly trained for this! It is really quite pathetic that we must be doctors ourselves and tell them how to do it...

Holy cow. Which means that that I can't really rely on those biopsy results at all because only 3 samples were taken! Doh! Thanks!

[IrishHeart]

Incompetent doctor. Three samples -- insufficient for diagnosis.

What doctor came up with the phrase "borderline" celiac disease? That's like saying someone is "borderline pregnant".

If you have any blunting of villi, you have celiac disease.

All those symptoms your children suffer from are celiac symptoms. Little children on proton pump inhibitors??...and your doctor thinks this is a good idea??

Where do you go from here, you ask? Gluten free. For life. Hope your little ones heal quickly and recover and live healthy lives.

[beebs]

Incompetent doctor. Three samples -- insufficient for diagnosis.

What doctor came up with the phrase "borderline" celiac disease? That's like saying someone is "borderline pregnant".

If you have any blunting of villi, you have celiac disease.

All those symptoms your children suffer from are celiac symptoms. Little children on proton pump inhibitors??...and your doctor thinks this is a good idea??

Where do you go from here, you ask? Gluten free. For life. Hope your little ones heal quickly and recover and live healthy lives.

Well - so he had Marsh 2 changes which isn't sufficient for a diagnosis apparently. Only Stage 3 or 4 are. But at stage 2 its considered suggestive. Not to mention that his grandma is confirmed celiac and I am almost certainly celiac but with no biopsy. He is two years old and on nexium for probably the rest of his life if we can't figure out what is wrong. He had ulcers in his esophagus and everything. They both have leaky gut apparently.

The problem is my 2 year old has been gluten free for 7 months and his stools are still so wrong.....failure to thrive - diagnosed asthma and has bronchial problems all the time. Bruises all over and wasting of butt muscles as well....if it is gluten - could it take this long? Or should his stools be getting better? He has also been tested for Cystic fibrosis because his pancreatic enzymes where low or high - can't remember which. He was given a 90% chance of having it - thankfully it came back negative - but the only other things that can cause that with the enzymes are celiac and crohns etc.

[Roda]

Well my oldest boy is going in for his scope and biopsy tommorow. I had forgot last month to ask the doctor how many samples she would take so I asked her nurse before we left(I was very sleep deprived that day). She said five. I thought not enough but better than most I hear about on here. Then she proceded to tell me that one would be taken in the esophagus, two in the stomach, so that only leaves two for the small bowel. I said no way was I going to put the kid through the procedure if that was it. I told her a minimun of 6-8 should be taken and I stressed the upper number. She told me she would relay the info to the doctor. So tommorow morning I will not be letting him go back for his procedure until I personally speak to the doctor and get her reassurance that the proper number of samples will be taken. If she won't agree we will be leaving.

Does anyone have any links to information I can print out on the numbers of samples I can take with me just in case?

[IrishHeart]

Beebs,

Your poor litle guy! All this doctor is doing is symptom-treating him.

Is this the same GI who gave you the run-around that you posted about?

If so, your family needs a new doctor.

You ask...Should he be better by now since going gluten-free?

I would think he would, yes, so I have to wonder what ELSE is going on IN ADDITION to the celiac.

You say he has a leaky gut...but WHAT IS CAUSING it is the issue.

Did they do a small bowel follow-through? Did they test for bacterial overgrowth? Crohn's? other Inflammatory bowel disease? parasites? candida? Was stool sampling done? Could he have microscopic colitis?

I had all these tests done --and they should be performed whenever ANYONE continues to be malabsoprbing nutrients. (I had wasted buttocks, lost muscle mass, massive weight loss, hair loss, burning esophagus etc...and I am an adult! )

Do you give him probiotics?? Maybe he would benefit from them.

Have you stopped giving them dairy? That may also be a culprit.

The problem with biopsies is

they take one or two samples from the same area and miss an area with an active spot. It's a hit-or-miss thing if the person doing the sampling is not skilled at it.

It is my understanding that somewhere between 10-15 samples FROM DIFFERENT areas of the small intestine are necessary. I wish I had a direct link to an article for you---I am going on what some other more "seasoned" pros on here have reported. I'll see what I can find.

Perhaps someone can chime in with more info for you.

You must be frustrated by all of this and my heart goes out to you.

[beebs]

Beebs,

Your poor litle guy! All this doctor is doing is symptom-treating him.

Is this the same GI who gave you the run-around that you posted about?

If so, your family needs a new doctor.

You ask...Should he be better by now since going gluten-free?

I would think he would, yes, so I have to wonder what ELSE is going on IN ADDITION to the celiac.

You say he has a leaky gut...but WHAT IS CAUSING it is the issue.

Did they do a small bowel follow-through? Did they test for bacterial overgrowth? Crohn's? other Inflammatory bowel disease? parasites? candida? Was stool sampling done? Could he have microscopic colitis?

I had all these tests done --and they should be performed whenever ANYONE continues to be malabsoprbing nutrients. (I had wasted buttocks, lost muscle mass, massive weight loss, hair loss, burning esophagus etc...and I am an adult! )

Do you give him probiotics?? Maybe he would benefit from them.

Have you stopped giving them dairy? That may also be a culprit.

The problem with biopsies is

they take one or two samples from the same area and miss an area with an active spot. It's a hit-or-miss thing if the person doing the sampling is not skilled at it.

It is my understanding that somewhere between 10-15 samples FROM DIFFERENT areas of the small intestine are necessary. I wish I had a direct link to an article for you---I am going on what some other more "seasoned" pros on here have reported. I'll see what I can find.

Perhaps someone can chime in with more info for you.

You must be frustrated by all of this and my heart goes out to you.

Hiya, this is a different Dr - he is meant to be one of the best Paed GIs in the country and an expert on Celiac....

He hasn't had his follow through but the Dr said he would have one. He has mentioned Crohn's in passing. Both the kids are on probiotics. The youngest was lactose free for 20 months and then back on lactose for a couple of months and is now back of lactose- no change....He has been completely dairy free for two months at one time.

They both tested negative for parasites. And you know -the eldest one (who had the bad medications) if he misses one or two doses of his medicine he is on the ground screaming in agony from tummy pain. The meds basically aren't even fixing the gastritis at all - just kind of masking the symptoms...he has been medicated since december last year!

Frustrated isn't even the word- I am getting really worried at this point. Its quit scary when specialists don't even know what is wrong.

Now I have to go and google all those things you mentioned!

Thanks for your reply!!

[IrishHeart]

Beebs,

I am so sorry you are all suffering so much. Just does not seem right!

I hoped you get some answers soon. This specialist should be on top of this and figuring things out!!! I was so slow to recover at first and I was frustrated, scared, crying and thinking ---WHEN will I feel better??!!!--it's been YEARS of real sickness and pain....but I am an adult and I cannot imagine what it is like to watch your little ones go through this.

I keep you in my thoughts.

IH

[beebs]

Beebs,

I am so sorry you are all suffering so much. Just does not seem right!

I hoped you get some answers soon. This specialist should be on top of this and figuring things out!!! I was so slow to recover at first and I was frustrated, scared, crying and thinking ---WHEN will I feel better??!!!--it's been YEARS of real sickness and pain....but I am an adult and I cannot imagine what it is like to watch your little ones go through this.

I keep you in my thoughts.

IH

I notice you are soy free IH....how did you work out it wasn't just gluten, as we all know when you go gluten-free you tend to eat heaps more soy and corn than you ever did before - I wonder if that is playing a part.

[IrishHeart]

I notice you are soy free IH....how did you work out it wasn't just gluten, as we all know when you go gluten-free you tend to eat heaps more soy and corn than you ever did before - I wonder if that is playing a part.

I learned about the soy intolerance because I was trying to figure out what the hell was wrong with me. I was very sick for a few years and lost a rapid amount of weight, my hair, muscle tone...and developed horrible joint/muscle pain so I found a doctor who tested me via IgG food intolerance testing. I was trying to be gluten and dairy free at the time as no one could tell me what was wrong and I had tested NEG on regular celiac panels. My cousin (a celiac) had urged me to go gluten-free and DF to see if I felt better.

The test resuts showed a HIGH antibodies to soy protein but NOT to gluten....the doctor ASSURED me I could eat gluten foods but to avoid SOY and all soy derivatives for 6-9 months and I would be right as rain.

The problem with that was my test results were inaccurate because I had been gluten-free for 6 weeks!!! This ignorant doctor told me repeatedly that was not a problem and NOT would affect the test results. (of course I learned later this was sooo WRONG!!!) So, I became more and more ill for another 9 months based on this guy's "knowledge " of how testing for antibodies works. (yes, if I could sue him, I would. He did apologize--for whatever that is worth)

Eventually, as I kept researching why I was still so ill, I realized I was indeed a celiac, had genetic testing done (double DQ2 genes) and went gluten-free and DF for good Jan. 1st and have started healing ever since.

My new doctor says it is a good thing I listened to my own body and not that doctor or my former Gastro doctor--or I would have continued to go down hill.I was in big trouble--neurological symptoms, etc...

I remain gluten-free and DF ---and Soy free for the most part--- because I know that soy affects many celiacs as a secondary intolerance and it wreaks havoc with estrogen and thyroid levels. I am not a big soy eater anyway, so it is not a huge sacrifice for me. I use a dash of mayo sometimes, that's about the extent of my soy intake!

Any food protein can become a secondary intolerance when a gut is inflamed and the villi compromised.

Foods high in histamine are also common culprits.

Maybe your sons have other food intolerances??--which is quite common with leaky gut.

I do hope you can find out what is going on soon!

[JH85]

Hello, this is my first time posting anything about this horrible disease. I'm 26 years old and had a strong feeling about 8 years ago that I may as well be celiac. I went on and off a gluten-free diet but never stuck with it (even though it helped all symptoms I had) I pretty much defined the whole "young and dumb" saying. Over the last 3 months it has become much worse than ever! So with the encouragement of my wife (basically it was her foot up my you know what) and knowledge of the disease my mother has, I have been completely gluten-free and DF for 2 1/2 weeks. Might sound lame but its the longest I have ever stuck with it. I have never been OFFICIALLY diagnosed however on a gluten-free diet I have no stomach pains or constant D. I am SOOOOOO scared to go to the GI i'm delaying it as much as possible. I'm just nervous that I don't know exactly what will take place. I know times and technology have changed in the past 18 years since my moms diagnoses, but I'm still shaking in my boots so to speak. Any advice or words of wisdom out there??

[GlutenFreeManna]

Are all the medication they take gluten-free? The Nexium is especially concerning because I think I have read it may not be gluten-free. Since he is gluten-free now why don't you try taking him off the Nexium?

ETA: Okay I did some searchign on Nexium. This is the FAQ from their website: Open Original Shared Link

From that FAQ:

"Does Nexium contain gluten?

Gluten is not listed as an ingredient in the Nexium Prescribing Information.

Since AstraZeneca does not manufacture the raw materials used in its drug products and since suppliers may periodically change, lack of contact with gluten or use of gluten during the manufacturing process cannot be guaranteed. Therefore, AstraZeneca cannot guarantee that Nexium is gluten-free."

This is a basic CYA statement but it's a little alarming and at the very least should make you reconsider using this medication on a child that is diagnosed as celiac (borderline or not). Also from that FAQ:

"What are the possible side effects of Nexium?

In adults 18 and older, side effects of Nexium include headache, diarrhea, abdominal pain, and dry mouth.

In children 1 to 17 years of age, side effects of Nexium include headache, diarrhea, abdominal pain, nausea, and sleepiness."

So not only is it questionable because of gluten but it could be causing his symptoms! And in case you need additional motivation to get him off that med here are few old threads from people on this forum that had side effects from Nexium:

[beebs]

Are all the medication they take gluten-free? The Nexium is especially concerning because I think I have read it may not be gluten-free. Since he is gluten-free now why don't you try taking him off the Nexium?

ETA: Okay I did some searchign on Nexium. This is the FAQ from their website: Open Original Shared Link

From that FAQ:

"Does Nexium contain gluten?

Gluten is not listed as an ingredient in the Nexium Prescribing Information.

Since AstraZeneca does not manufacture the raw materials used in its drug products and since suppliers may periodically change, lack of contact with gluten or use of gluten during the manufacturing process cannot be guaranteed. Therefore, AstraZeneca cannot guarantee that Nexium is gluten-free."

This is a basic CYA statement but it's a little alarming and at the very least should make you reconsider using this medication on a child that is diagnosed as celiac (borderline or not). Also from that FAQ:

"What are the possible side effects of Nexium?

In adults 18 and older, side effects of Nexium include headache, diarrhea, abdominal pain, and dry mouth.

In children 1 to 17 years of age, side effects of Nexium include headache, diarrhea, abdominal pain, nausea, and sleepiness."

So not only is it questionable because of gluten but it could be causing his symptoms! And in case you need additional motivation to get him off that med here are few old threads from people on this forum that had side effects from Nexium:

I had read that - he is due to be weaned off it this month. Slowly though - because he has severe GERD and had ulcers in is esophagus and stuff.

He doesn't have Diarrhea as much as Steattorhea. Foul, very fatty, pale, completely undigested. And that hasn't changed - he had it even before the nexium. I really hope we can get him off the nexium. I don't like the little ones being on such full on meds for so long when they are that young!

[IrishHeart]

Hello, this is my first time posting anything about this horrible disease. I'm 26 years old and had a strong feeling about 8 years ago that I may as well be celiac. I went on and off a gluten-free diet but never stuck with it (even though it helped all symptoms I had) I pretty much defined the whole "young and dumb" saying. Over the last 3 months it has become much worse than ever! So with the encouragement of my wife (basically it was her foot up my you know what) and knowledge of the disease my mother has, I have been completely gluten-free and DF for 2 1/2 weeks. Might sound lame but its the longest I have ever stuck with it. I have never been OFFICIALLY diagnosed however on a gluten-free diet I have no stomach pains or constant D. I am SOOOOOO scared to go to the GI i'm delaying it as much as possible. I'm just nervous that I don't know exactly what will take place. I know times and technology have changed in the past 18 years since my moms diagnoses, but I'm still shaking in my boots so to speak. Any advice or words of wisdom out there??

Being gluten free before testing will affect the results. Please read up on testing for celiac and what is involved. There's nothing be be afraid of--none of the testing is scary or painful.