Anyone Turn Down A Biopsy For Their Child?

[sbj]

Wow, I'm a little offended that you believe me to have no common sense and purposefully ignoring my doctor. .... Who has the child's best interest in mind? As I stated...I repeatedly asked the doctor what the PURPOSE of the biopsy was. ... Why is it necessary to ridicule? My thread was asking if I was the only one who turned down the biopsy not an invitation for mean remarks....I still can't get over that I have to put that disclaimer down.

Wow! You have seriously misread my post and my intent. I did not ridicule you - I disagreed with your actions (and anyone else who choses to ignore a doctor's reasonable suggestion). As far as tone let me say this: I have personal experience with a family member who apparently ignored a doctor's advice. It cost him his life. I make no apology for expressing my opinion in this regard passionately.

I wrote that a biopsy is not always necessary when blood results so indicate. I then provided reasons why a biopsy is a good idea. You and many others disagree with me - that's fine. I'm not offended. I stated right up front that this is your decision to make. However, I disagree with your decision. Have you not ever run into someone who disagrees with you without getting offended? If you only pay attention to those who agree with you then you are missing out on potentially valuable information.

If you don't think that your doctors have your child's best interests in mind then please get new doctors!

I offered an alternative viewpoint to what is typically expressed on this forum. I hope that you'll continue to enjoy this forum even if you are offended by my opinions. I will contnue to write passionately about this topic.

[Nancym]

I'm sure these procedures are probably good money makers for GI's and hospitals. I can think of lots of reasons not to have them done, the biggest of which is their unreliability and of course there's always a risk of death, bowel puncturing, infection and so on.

[littleguyw/CD]

I have some more questions

[neesee]

Forgive me EmmyLouWho, but I don't understand the purpose of starting this thread if you didn't want any input. Your mind was made up. What was the point?

[littleguyw/CD]

I can think of lots of reasons not to have them done, the biggest of which is their unreliability and of course there's always a risk of death, bowel puncturing, infection and so on.

How offten does this happen? or how many people on this forum has this happen to or knows someone who had this happen too them ? I just was wondering because our son (3 1/2 years) is getting this done to him. I also know there are risk in everything you do in life but I just want to know about this biopsy

[Fiddle-Faddle]

Sonia, my understanding is that there are false negatives, especially in young children, but no false positives. If your little guy was making antibodies to gluten, it doesn't matter if the numbers are high or low, the important thing is that he was making them at all! People without celiac/gluten intolerance do NOT make antibodies to gluten.

As far as I can tell, antibody production to gluten seems to open the door to autoimmune disorders down the road, as well as immediate symptoms (intestinal, skin, and neuro function).

[Fiddle-Faddle]

Neesee, I don't think Emmylou's mind was made up. I think the post that hit her wrong was not intended to do so, but I actually had the same first impression of that post as she did. When I saw who wrote it, I re-thought it, as that poster's comments often seem to hit people the wrong way, but I think it's unintentional.

[HopeMum]

For LittleguywCD...

I can understand the fear about getting a biopsy. I had my daughter biopsied at 18 months. I had initially decided against it because she had been gluten-free with great results for about 10 days. What changed my mind was the need to know PLUS the fact that she was not healed yet so even with the improvment in symptoms the biopsy was still definitive. I had thought that I could just wait to do it when she was older and could decide for herself but realized that getting it done now before she was completely healed made more sense for me.

I was scared and hated to give her gluten but I did not completely reverse her diet, I gave her a cracker every day at the same time and treated it like 'medicine' in prep for the biopsy but I did insist on getting it done asap.

I hope this helps,

Claire

[Fiddle-Faddle]

I'm sure these procedures are probably good money makers for GI's and hospitals. I can think of lots of reasons not to have them done, the biggest of which is their unreliability and of course there's always a risk of death, bowel puncturing, infection and so on.

AFAIK, the biggest risk with the endoscopy/biopsy is the sedation--there are both children and adults who have had allergic reactions, or seized, or even died on the table. Yes, those kinds of reactions are rare--but they do happen, as do mistakes by the anesthesiologist. In fact, these days, mistakes are more likely, as in order to cut costs, the doctors administer the sedation themselves, and do not use an anesthesiologist or even a nurse-anesthetist.

And infection rates have gone up as hospitals have cut their staffing due to $$$.

Not too long ago, I saw on the news a report of an otherwise healthy 8-year-old who died during a routine ear-tube procedure. And we keep seeing stars and mothers of stars who die during or shortly after plastic surgery, too.

[Fiddle-Faddle]

.

I was scared and hated to give her gluten but I did not completely reverse her diet, I gave her a cracker every day at the same time and treated it like 'medicine' in prep for the biopsy

I totally understand why you did it this way, and I don't mean to sound like I am criticizing your decision. I am NOT--obviously, it did work out best for you this way.

But there is something that REALLY REALLY REALLY bothers me about intentionally damaging a child's intestines in order to get a positive diagnosis, and I just can't get past that.

It should not have to be that way. Ever.

[dilettantesteph]

I just came back from an appointment with my GI. I was self diagnosed and have been gluten free for a little over a year and my symptoms have resolved. My GI didn't think that I should go back on gluten for a biopsy. He said had I came to them, they wouldn't have done anything that I hadn't already done for myself. He didn't seem to think testing very important unless there was doubt about the diagnosis. I don't think that you need to feel bad about your decision. If there is doubt later, it can be done then.

[Tallforagirl]

Sonia, my understanding is that there are false negatives, especially in young children, but no false positives. If your little guy was making antibodies to gluten, it doesn't matter if the numbers are high or low, the important thing is that he was making them at all! People without celiac/gluten intolerance do NOT make antibodies to gluten.

As far as I can tell, antibody production to gluten seems to open the door to autoimmune disorders down the road, as well as immediate symptoms (intestinal, skin, and neuro function).

Actually, this is inaccurate.

"Anti-Gliadin Antibodies:

Both IgA and IgG anti-gliadin antibodies (AGA) are detected in sera of patients with gluten sensitive enteropathy (celiac disease). IgG anti-gliadin antibodies are more sensitive but are less specific markers for disease compared with IgA class antibodies. IgA anti-gliadin antibodies are less sensitive but are more specific. In clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it. False positive results are rather uncommon but false negative results can occur. On the other hand, the IgG anti-gliadin antibodies are 91% specific and have an 87% sensitivity. This means that they will show positive results more readily but there is not as strong a correlation with celiac disease. It is less specific. Patients with other conditions but not afflicted with celiac disease will occasionally show positive results. IgG anti-gliadin antibodies are detectable in approximately 21% of patients with other gastrointestinal disorders. This test might yield false positive results but is less likely to yield false negative results."

This comes from here: https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

[Fiddle-Faddle]

But tallforagirl, that is based on the current method of diagnosing celiac--by biopsy, which among many members of this board (but not all) is considered woefully inadequate, as it only diagnoses "end-stage" celiac. There are many people who have villi damage whose damage is missed the first time round (22 feet of intestines, patchy damage, and a couple of 2-millimeter samples?), or whose doctors remark on the damage but don't consider it celiac (????), or whose doctors don't bother telling them (a recent post on this board!). There are also people whose villi are fine one year, but a year later, their villi DO show damage. There are also celiacs who are asymptomatic in terms of intestinal complaints, but have villi damage--but if they are asymptomatic, they're not getting biopsied, so they rarely get diagnosed!

Those "other gastrointestinal disorders" mentioned in your quote probably include IBS--which is VERY often undiagnosed celiac disease (undiagnosed sometimes because of lack of testing, but sometimes undiagnosed because of misread or improperly done testing).

I believe that anybody making antibodies to gluten is at the very least gluten-intolerant--which can lead to all the same devastating problems as biopsy-diagnosed celiac. Just ask the many members here who have ended up in the hospital, in wheelchairs, and worse--and somehow initially tested negative for celiac--and most of them were told that their intestinal problems were IBS!

I wish the scientific community would just admit how limited their knowledge really is!

If it walks like a duck, quacks like a duck, poops like a duck....

[celiac-mommy]

Our kids both had the biopsy. My dd was 4 at the time-glaringly positive visually, biopsy results agreed. Our son was 2 1/2 when he had the biopsy. blood tests were negative at 2, still having major intestinal issues, we decided to go ahead with the biopsy. Both instances were more painful for us, the parents, than for the kids. The only thing either remembers is playing in the huge toy room. Our son's biopsy looked "suspicious" but ended up coming back negative. I took him off gluten anyway and because of the gravity of his dietary response alone, our GI diagnosed him. He did tell us, however, that because it was not positively diagnosed by biopsy or blood test, we may run into problems in the future with insuance companies and school issues in which a dr's note isn't enough-haven't run into this yet with our elementary school. Although my mind was made up to go gluten-free with him regardless of the biopsy results, I needed to know that there wasn't another issue going on in there.

[Jamie's Mom]

I am glad that I found this forum. My daughter tested positive to celiacs- the following are test numbers

endomysial AB (IGA)--Positive

Endomusial AB Titer 1:160 (normal range is <1:5)

Tissue Transglutaminase AB IGA 58U/mL (range- <5)

IGA, Serum 137mg/dL range (41-368)

I do not want to get the biopsy that is scheduled for this month- I have gone back and forth with my decision.

My daughter has been having problems for the past (4) years of her life- she is now 7 1/2- I was the one that insisted that she be tested. She has the symptoms- loose stools- all of the time when- irritabilty- inattention-

We tried everything to find out what was going on with her- The Ped GI says this test will confirm- the golden standard for celiacs

My main problem is she has Down Syndrome- she is borderline for the neck instability- so if they perform this test they have to be very careful not to hyperflex her neck when they do insert the tube- I have a call into the Down Syndrome Specialist Dr that we see- I am going to ask him what benefit is there to put her through this test- plus adding gluten back to her diet- when she was finally behaving better and her bowels were starting to look more normal. Just in a couple days of a little gluten being added- I have noticed her having tics again with shaking her head , her bowels are really loose- and she has been very hard to deal with- Do these test results look defintive enough? Thanks.

Susan

[Jamie's Mom]

Also forgot to mention that she has graves disease- which is a thyroid auto-immune problem and usually coexists with celiacs.

[sbj]

I am glad that I found this forum. My daughter tested positive to celiacs- the following are test numbers

endomysial AB (IGA)--Positive

Endomusial AB Titer 1:160 (normal range is <1:5)

Tissue Transglutaminase AB IGA 58U/mL (range- <5)

IGA, Serum 137mg/dL range (41-368)

Do these test results look defintive enough? Thanks.

Susan

Per the following article, I believe that a transglutaminase antibody level over 30 U/mL means there is a 100% chance your daughter has celiac disease and no biopsy is necessary for diagnosis. The results you post appear to indicate a level of 58 U/mL.

However, I really would have the Down Syndrome specialist confer with your Ped GI. There is a chance that something else is going on. God bless you both!

Open Original Shared Link

Biopsy Not Always Necessary for Celiac Disease Diagnosis

Research in the most recent issue of Alimentary Pharmacology & Therapeutics shows that a

transglutaminase antibody level can be defined which gives a positive predictive value of 100 percent for celiac disease

indicating that small bowel

biopsy is no longer regarded as mandatory in patients with such high transglutaminase antibody levels

.

There is high diagnostic accuracy of immunoglobulin-A-tissue transglutaminase antibodies for detecting celiac disease. Researchers explored whether a small bowel biopsy is always required to establish the diagnosis. The team defined the transglutaminase antibody level giving a positive predictive value for celiac disease of 100 percent and assessed the proportion of new diagnoses of celiac disease having such a result. The Celikey kit was used to measure transglutaminase antibody levels.

The researchers observed that

all patients with transglutaminase antibody levels over 30 U/mL had characteristic small bowel mucosal lesions

. In a subsequent audit, 58 percent of 112 new diagnoses of celiac disease in 2004 to 2005 had levels above this cut-off value. From published data, the team showed their observations can be extended to most second-generation transglutaminase antibody kits.

[happygirl]

DS and celiac disease appear to be seen together.

Open Original Shared Link

Open Original Shared Link

[littleguyw/CD]

ok there is a TON info !!

This is what I have

Tissue Transglut antibody, IgA

(tTG) Ab, IgA < 3 u/mL <-- so that Negative...right? no celiac

then I have

Gliadin Antibody IgG 35 H <--- Positive

Endomysial antivody IgA Negative

Gliadin Peptide IgG and IgA, Elisa

" " IgG 2

" '' IgA 2

Interpretive Criteria 20 units antibody detected

Gliadin Antibody IgA 5<--Negative??

WHAT DOES THIS MEAN!!

our dr said that he does and to go to a GI dr

sonia

[Amyleigh0007]

Go with your mom instinct. That is what always gets me through tough choices when dealing with my children. But, with that being said, I am glad we did my son's scope. We discovered that he had acid reflux (from his food allergies- he had no outward symptoms). We would have never known that if we didn't do the scope.

[Fiddle-Faddle]

Acid reflux is a VERY common symptom of celiac/gluten intolerance.

Many of us here have said that we'd always thought it was the marina sauce that gave us reflux, when all along, it was the PASTA!!!

Just think how many acid reflux meds there are out there--and how many cases of reflux are actually caused by either undiagnosed celiac or by some other food issue????

[shayesmom]

WHAT DOES THIS MEAN!!

our dr said that he does and to go to a GI dr

sonia

Sonia,

I really feel for you as I know where you are right now....I was there with my dd nearly 5 years ago. My dd tested negative on the blood panel and we didn't do the biopsy. Sorry, but multiple food allergies (egg and soy....fun for anaesthesia) and then other chemical allergies really made sedation a high risk proposition for us. At the time, no one in the family had a celiac diagnosis...so my husband and I really struggled with the plausibility of celiac disease in our daughter.

We did put her on the gluten-free diet. And the changes were remarkable. Our pedi GI told us she'd never seen a child turn around so fast. Not surprising, considering it still takes an average of 9-11 YEARS to be properly diagnosed. Forgive my sarcasm, but in the case of celiac disease and other food allergies/intolerances....I'm a firm believer in exercising a bit of "common sense". According to our doctors (and we saw several), my daughter didn't "need" to be on a "restricted" diet. Being with her 24/7 and seeing her on and off diet, I KNOW that she does. And now she's of an age where she knows it too. She's been her own most vocal advocate since the age of 3.

Since then, one of my aunt's was diagnosed (after 5+ years of being misdiagnosed and then her asking for a Celiac panel after talking to us about our struggles). Two other aunts have also gone on the diet, along with several cousins and all have experienced significant improvements....despite negative blood work and biopsies. My own mother has been doing blood panels and endoscopies for 13+ years...always negative. But since we put our dd on the diet, my mom has found that it also helps her.

The point is....you may never KNOW what you're really dealing with, whether or not you choose to biopsy. And I do question the advice of your doctor to put your son on a gluten-free diet when he should realize that the GI will want to biopsy. Going on a gluten-free diet prior to biopsy will most likely skew your son's test results. So you'll probably be told that your son doesn't have it...so you'll be tempted to go off the diet and you may find out years later that he needed to be on it and that your son's case was mishandled.

I would suggest that you tuck away the observations you've made while trialing the diet and if you have any intention of doing the biopsy....get on the phone with the GI and find out if he needs to be eating gluten until then. Kids heal more quickly than adults do. And I'd hate to see you spend time and money for more inconclusive results. If you need to know...then you need to pursue this logically. Going gluten-free prior to having a biopsy is not the way to get a definitive diagnosis. Many people on this site have tested positive on the bloodwork, gone gluten-free and then tested negative on the biopsy. That's what is SUPPOSED to happen when you're a celiac and you follow the diet. The damage is supposed to heal to the point where it will not be present upon further biopsies. It can then take years of eating gluten to develop enough damage to retest positive again.

If you aren't sure you can adhere to the diet without a formal diagnosis, then PLEASE, do everything in your power to ensure a reliable test result. On the other hand, if you believe the positive differences you're seeing first-hand in your child on the diet, and you can maintain diet without a formal diagnosis, then do so. What's most important in all of this is that the condition is treated appropriately. In the end, both Celiac and non-celiac gluten enteropathy need to be treated with a gluten-free diet. PERIOD. I'm not of the belief that one needs to be taken more seriously than another. I'm of the belief that you do what needs to be done because not only does it make sense....it also WORKS.

[littleguyw/CD]

THANK YOU VICKY!!!

[Tallforagirl]

Obviously there is a lot of debate about the accuracy of the blood tests.

I think the point is, that it is a choice whether or not to biopsy, but personally (and with the medical community with me on this) I think it's best to do it, both as confirmation of diagnosis and for peace of mind to know that nothing else is going on or that it's not something else causing the problems. If it is negative (and I quite believe that this can happen) and if a gluten-free diet helps symptoms, then why not do the gluten-free diet anyway.

[shayesmom]

Obviously there is a lot of debate about the accuracy of the blood tests.

I think the point is, that it is a choice whether or not to biopsy, but personally (and with the medical community with me on this) I think it's best to do it, both as confirmation of diagnosis and for peace of mind to know that nothing else is going on or that it's not something else causing the problems. If it is negative (and I quite believe that this can happen) and if a gluten-free diet helps symptoms, then why not do the gluten-free diet anyway.

As an interesting side note....I was recently on a parenting board where a mother had her 2 year old son undergo an endoscopy. Villous atrophy was present suggesting an autoimmune condition (as per the GI). Was it Celiac? The GI didn't test for it (despite "classic" celiac symptoms). Instead, the GI is now pushing for a small intestine transplant.

There are some rogue doctors out there. So when you meet a good one, be sure to share on the forums here so that others can benefit as well.