Anyone Turn Down A Biopsy For Their Child?

[mama23]

I am not biopsy/blood diagnosed and went years of being severally ill and in chronic pain. Doctors didn't know anything, but drugs, which didn't work. I finally went gluten free and within 2 weeks was pain free for the first time in 3 years. After a year I was better that I had ever been in my life.

I had my 3 children tested (blood) as two of them showed signs, one of them with some classic symptoms. As we were leaving the Dr's office she told me to take the older two off of gluten regardless of the test results. She said they had the symptoms and had the improvement after going gluten free, that the tests were not 100% accurate. I really wanted them to have the definitive "test" results that everyone looks to, I even put them through a minor challenge. But I have had 2 MD's and several ND's tell me that the tests are not accurate and the best thing is trying the diet.

Interestingly, even though they all came back negative, my older two had low B vitamins and anemia.

I chose not to do the biopsy both for myself or for my kids. Mostly because the improvement in our lives being gluten-free was so much that I couldn't see literally choosing to be so sick again, or to them lose weight and growth that they had achieved.

I don't regret it. Several people in my family work in the medical field and at the time said, there is no reason to risk it. They had seen routine procedures go wrong, and there is no guarantee that the test would show a positive, then what? Am I really going to put them back on gluten just because a test said negative, after seeing the results of the diet.

The one thing I would consider doing is the skin biopsy, my DS will get the DH rash if he gets gluten repeatedly. But I know that would mean finding a GI who would be willing to do the skin biopsy and work with me, I haven't found one yet and don't want to spend the time looking (we all know how long it takes to get into a GI).

Personally, the incrediable improvements of being gluten-free are proof enough for me.

[Fiddle-Faddle]

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.

I would agree with you if

#1) the biopsy were a risk-free,non-invasive procedure (it's NOT)

#2) if it had a higher degree of accuracy (apparently, dietary response + bloodwork is MORE accurate)

#3) if there weren't so many doctors pushing procedures and medications that line their bank accounts, but don't necessarily help the patient. So many of us here on this board have already been through this with medications that didn't address the cause of our problems, but for many of those meds, the doctors received bonuses from the pharmaceutical companies for each prescription filled.

If symptoms disappear on the gluten-free diet, then you don't have to worry about "something else going on," not any more than any other person with no intestinal symptoms. And if symptoms DON'T disappear, then you can still have a biopsy; theoretically, at that point, the doctor should be looking for something other than celiac anyway, so it wouldn't matter if you are already gluten-free.

[EmmyLouWho?]

I would agree with you if

#1) the biopsy were a risk-free,non-invasive procedure (it's NOT)

#2) if it had a higher degree of accuracy (apparently, dietary response + bloodwork is MORE accurate)

#3) if there weren't so many doctors pushing procedures and medications that line their bank accounts, but don't necessarily help the patient. So many of us here on this board have already been through this with medications that didn't address the cause of our problems, but for many of those meds, the doctors received bonuses from the pharmaceutical companies for each prescription filled.

If symptoms disappear on the gluten-free diet, then you don't have to worry about "something else going on," not any more than any other person with no intestinal symptoms. And if symptoms DON'T disappear, then you can still have a biopsy; theoretically, at that point, the doctor should be looking for something other than celiac anyway, so it wouldn't matter if you are already gluten-free.

I agree completely! The biopsy isn't 100% accurate either especially if you get a negative so, in a case like mine, I don't understand going through with a procedure that the doctors would like you to think is harmless (and most of the time is....but has serious risks) for something that isn't going to do much more than the blood tests as far as confirming diagnosis.

[caek-is-a-lie]

He was throwing up 10 times a day and I just wanted it to stop.

Wow this reminds me of a guy I met a long time ago. He would throw up all the time and they didn't know why, so they did surgery to make it impossible for him to throw up anymore. I never once heard any mention of looking for food intolerances. They just forcibly 'fixed' the problem instead of looking for the real cause. Modern medicine seems so backwards at times.

[sbj]

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.

Hi Tall for a girl! You are, of course, correct.

I hope you don't find yourself getting discouraged by those who distrust the medical community. I believe that doctors honestly have our best interests at heart, that most take their hippocratic oath seriously, that they have done far more good than harm, that they have saved countless lives and alleviated much suffering and pain.

You and I both think that it's best to listen to trained professionals but many here simply disagree. That's their right and I mean no offense. I'm suggesting that attempts to explain your logic won't really find a receptive audience. It's all a part of participating in a community with different viewpoints. There's always going to be a majority and a minority and we are in the minority. All we can do is suggest and then keep quiet otherwise we end up in a fight where the odds - but not the facts - are stacked against us.

As an example, many find temporary relief after going gluten-free but later find that they still have problems. They then start looking for additonal food intolerances but some find that they have to return for the endoscopy or colonoscopy that was originally recommended. Unfortunately for them, the intervening time may have caused greater damage. I think that is an avoidable tragedy.

[Gemini]

I would agree with you if

#1) the biopsy were a risk-free,non-invasive procedure (it's NOT)

#2) if it had a higher degree of accuracy (apparently, dietary response + bloodwork is MORE accurate)

#3) if there weren't so many doctors pushing procedures and medications that line their bank accounts, but don't necessarily help the patient. So many of us here on this board have already been through this with medications that didn't address the cause of our problems, but for many of those meds, the doctors received bonuses from the pharmaceutical companies for each prescription filled.

If symptoms disappear on the gluten-free diet, then you don't have to worry about "something else going on," not any more than any other person with no intestinal symptoms. And if symptoms DON'T disappear, then you can still have a biopsy; theoretically, at that point, the doctor should be looking for something other than celiac anyway, so it wouldn't matter if you are already gluten-free.

I couldn't agree with you more, Fiddle-Faddle! Blood work is extremely accurate in more advanced stages of celiac disease but, unfortunately, for those suffering from gluten sensitivity vs full blown Celiac, it can be a mine field. The vast majority of patients who test positive on the biopsy are at end stage of the disease and have a lot of intestinal damage. So, the esteemed medical profession would rather you keep damaging your insides so they can keep testing away until they tell you to stop?

I think that many doctors today have forgotten their oath of "First, do no harm". I was a poster child for Celiac and was end stage before I even began to get their attention. There is no excuse for that. All they kept doing was trying to get me to take meds for my stomach distress and then getting mad at me for not blindly obeying. I knew there was a problem and had to self diagnose and THEN go and ask for the blood work. It's enough to make you scream.

I had the same plan as you mentioned....if the gluten-free diet did not help within a short period of time, then you can always resort to a scope to check for other problems. This is the way medicine USED to be practiced. Doctors reserved the invasive testing for when it was really needed and relied on blood work

and common sense to diagnose a problem. Why is it that they cannot diagnose anything today without seeing it on an x-ray or camera?

I have a cousin who is a drug rep. I love my cousin but do not have a lot of respect for that kind of work. If most people knew the bonuses they get (think corporate greed) for selling "x" amount of drugs, I would imagine the public would finally understand how it plays a huge role in the amount dispensed to people and the pressure used to go on medication. There is a time and place for meds but many people would be better off without them and just look to food as a potential culprit.

[MarsupialMama]

Let me ask this: If the biopsy turns out positive, what will you do differently? If the biopsy turns out negative, what will you do differently? Common sense has to play its part in any decision. To counteract an above poster, to blindly trust somebody else, dr or otherwise, without factoring in anything else, is always DANGEROUS. We turned down a biospsy for our daughter, who had responded AMAZINGLY to the diet change. The difference was night and day. I do not see a reason to take the risks associated with a biopsy (and there always are) just so I can give her problem a "name" and have the "Dr.'s blessing" with it, unless there is a real reason to do so. Especially for a little child. Hospitals, tubes, etc are very scary for children, and to put them through something uncomfortable, scary, traumatic in some cases, without having a very good reason is irresponsible in my eyes. Hope not to offend anyone who has had a biopsy. The main point here is that there is no good reason is being given. The brutality of the medical system is relentless, and as was stated before, it comes down to one more thing: SOMEBODY gets paid big bucks for it.

[Jamie's Mom]

I couldn't agree with you more, Fiddle-Faddle! Blood work is extremely accurate in more advanced stages of celiac disease but, unfortunately, for those suffering from gluten sensitivity vs full blown Celiac, it can be a mine field. The vast majority of patients who test positive on the biopsy are at end stage of the disease and have a lot of intestinal damage. So, the esteemed medical profession would rather you keep damaging your insides so they can keep testing away until they tell you to stop?

I think that many doctors today have forgotten their oath of "First, do no harm". I was a poster child for Celiac and was end stage before I even began to get their attention. There is no excuse for that. All they kept doing was trying to get me to take meds for my stomach distress and then getting mad at me for not blindly obeying. I knew there was a problem and had to self diagnose and THEN go and ask for the blood work. It's enough to make you scream.

I had the same plan as you mentioned....if the gluten-free diet did not help within a short period of time, then you can always resort to a scope to check for other problems. This is the way medicine USED to be practiced. Doctors reserved the invasive testing for when it was really needed and relied on blood work

and common sense to diagnose a problem. Why is it that they cannot diagnose anything today without seeing it on an x-ray or camera?

I have a cousin who is a drug rep. I love my cousin but do not have a lot of respect for that kind of work. If most people knew the bonuses they get (think corporate greed) for selling "x" amount of drugs, I would imagine the public would finally understand how it plays a huge role in the amount dispensed to people and the pressure used to go on medication. There is a time and place for meds but many people would be better off without them and just look to food as a potential culprit.

Over the past four years my daughter has been to so many specialists. They basically were giving her medicine to combat the celiac symptoms. They thought she had ADHD- therefore suggested meds for this- she did not respond. I finally said - I need to look at her diet more closely. I started emliminating casein- and limited the gluten in take- took her to a very good allergist- he performed skin tests and said she is not allerigic to anything. I asked him to test her for gluten intolerance- he said no she does not have celiac disease. I insisted because she has Down Syndrome and they are prone to celiacs- no one had ever tested her- including the Pediatric Endocrinologist. Some DRS are so tunnel visioned- the only want to look at their speciality and not look at the whole patient. My daughter should be the healthest person around based on how many DRs/Specialist we have been to- I feel like she was no better off then if we had never went to any of the DRS. I did make another appointment with another Ped GI Dr. that I found on a celiac site that just happens to be not far from where we live. I am going to really hash it out with him- because I am very reluctant to have my daughter put to sleep- based on her history and her bloodwork was very positive. Her dad is going to get scoped to see if he has celiacs- he already has other upper GI problems. I am so grateful to listserves like this and others that really can help one to figure out the best course of treatment.

[EmmyLouWho?]

Hi Tall for a girl! You are, of course, correct.

I hope you don't find yourself getting discouraged by those who distrust the medical community. I believe that doctors honestly have our best interests at heart, that most take their hippocratic oath seriously, that they have done far more good than harm, that they have saved countless lives and alleviated much suffering and pain.

You and I both think that it's best to listen to trained professionals but many here simply disagree. That's their right and I mean no offense. I'm suggesting that attempts to explain your logic won't really find a receptive audience. It's all a part of participating in a community with different viewpoints. There's always going to be a majority and a minority and we are in the minority. All we can do is suggest and then keep quiet otherwise we end up in a fight where the odds - but not the facts - are stacked against us.

As an example, many find temporary relief after going gluten-free but later find that they still have problems. They then start looking for additonal food intolerances but some find that they have to return for the endoscopy or colonoscopy that was originally recommended. Unfortunately for them, the intervening time may have caused greater damage. I think that is an avoidable tragedy.

I really think you should stop referring to "us" as some mindless group of people who don't listen to any doctors and have no common sense. From what I'm reading a lot of "us" are the ones who INFORMED our doctors. After 6 weeks of diarrhea with my son the doctors were ready to send us home with yet another order for a stool sample (he had already had 3!) and nothing more than a diet of lots of starch to create "bulk". Oh yes....believe the doctors had the knowledge they needed? I asked for the blood work. By the time my son ended up in the hospital..his blood was running like tar and as the nurses said, it was the worst case of dehydration they'd ever seen. How long do think my son would have made it like that? I'm guessing the situation would have been extremely critical in another day or two. I cried everyday of that 6+ weeks.

None of us have said those people who get the biopsy done are making a bad choice. What we ARE saying is that we, as people and parents, are allowed to have a voice. We don't have to follow a doctor's lead just b/c he's a doctor. With my dad's experience as a doctor himself, he has told me numerous times to question what needs to be questioned & to trust your gut. He's been a well-respected doctor for 30 years now. He understands that doctors can miss things, make mistakes and not have knowledge of certain things.

Opinions are wonderful but degrading the choices of other people who don't necessarily agree with you is really sad.

[celiac-mommy]

None of us have said those people who get the biopsy done are making a bad choice. What we ARE saying is that we, as people and parents, are allowed to have a voice. We don't have to follow a doctor's lead just b/c he's a doctor. With my dad's experience as a doctor himself, he has told me numerous times to question what needs to be questioned & to trust your gut. He's been a well-respected doctor for 30 years now. He understands that doctors can miss things, make mistakes and not have knowledge of certain things.

AMEN!!!

[dandelionmom]

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.

My daughter's DOCTOR was the one who recommended not having the biopsy. Delicate children are some of the most at risk from surgical side effects and anesthesia.

I'm pretty sure the point of this post was not to argue the gold standard diagnosis, rather to find out what choices a parent is making for their sick child.

[Tallforagirl]

Opinions are wonderful but degrading the choices of other people who don't necessarily agree with you is really sad.

I think sbj and I both have, and would therefore like to present, an alternative viewpoint to that of the majority on this forum, so that those coming to read these posts in the future can see that there is more than one point-of-view.

I don't think disagreeing is the same thing as degrading.

[curiousgeorge]

My kids have been essentially gluten-free since the summer when I went gluten-free. I am gluten-free, I have autoimmune issues and a LONG history of familial autoimmune on both sides and by god, if I can prevent that in them then I'm going to do it. My kitchen is gluten-free and we decided that the kids would follow suit. I had them tested and one had a ttg of zero , one of 1 an one a 2 with 3-5 being inconclusive and 5 being positive. I am of the school of thought that why not. Two of the three are making small levels of antibodies and who is to say that they are not going to start pumping them out at some point. I now know they aren't because they are gluten-free. Can I prevent the thyroid misery of my grandmother, my mother myuncle, me by doing this... maybe.

If you have the blood work and its positive and your uncomfy with the biopsy then why do it? Espeically Jamie's mom for her. She has many issues and it just doesn't seem worth the risk. The diet isn't all that big of a deal when you get used to it and doing it is no risk. Its all upside with the diet. Keep in mind, a pefrectly healthy non-gluten intolerant non-celiac person will be perfectly fine on the gluten-free diet.

Ten years ago there was no TTG test, 10 years from know who knows what dx procedure they will have for celiac but I'm sure it will be far more accurate than what we currently have. I think all of our children will benefit from what dx advances are made and perhaps this converstaion will have all been for not.

IMHO of course but you do what you gotta do as a parent.

[taweavmo3]

Hi Tall for a girl! You are, of course, correct.

I hope you don't find yourself getting discouraged by those who distrust the medical community. I believe that doctors honestly have our best interests at heart, that most take their hippocratic oath seriously, that they have done far more good than harm, that they have saved countless lives and alleviated much suffering and pain.

You and I both think that it's best to listen to trained professionals but many here simply disagree. That's their right and I mean no offense. I'm suggesting that attempts to explain your logic won't really find a receptive audience. It's all a part of participating in a community with different viewpoints. There's always going to be a majority and a minority and we are in the minority. All we can do is suggest and then keep quiet otherwise we end up in a fight where the odds - but not the facts - are stacked against us.

As an example, many find temporary relief after going gluten-free but later find that they still have problems. They then start looking for additonal food intolerances but some find that they have to return for the endoscopy or colonoscopy that was originally recommended. Unfortunately for them, the intervening time may have caused greater damage. I think that is an avoidable tragedy.

I see where you are coming from......I really do, and I'm not commenting to beat you down. I just wanted to mention though, that the level of distrust found so often here, is from experience. I am actually a part of the medical community, and have worked with sick kids for 10 years. I myself have a certain level of distrust b/c I have seen and heard enough to know that doctors are human and often make mistakes. Ask any mother of a chronically ill child, and she will tell you the same thing. Another point I would like to make, is that there are many times I would have made a grave mistake if I only looked at "facts" rather than listening to my patient. There are many times in medicine, where facts, and the actual clinical picture do not match up. A good doctor does not practice based on tests and textbooks alone.

And just to offer a different perspective....I can't tell you the number of times a mother's instinct, or a patient "listening to their body" has saved a life as well. There is a reason people here feel the way they do, especially when is comes to children.

[shayesmom]

I think sbj and I both have, and would therefore like to present, an alternative viewpoint to that of the majority on this forum, so that those coming to read these posts in the future can see that there is more than one point-of-view.

I don't think disagreeing is the same thing as degrading.

I think that the "alternative" viewpoint you are mentioning is one that is very well represented at every medical clinic any of us have gone to while on our journey to be diagnosed. The 9-11 YEAR average of misdiagnosing this issue and the staggering amount of human suffering this statistic represents is precisely why the majority of this forum opts for a more "common sense" approach to the problem.

This isn

[Fiddle-Faddle]

sbj and tallforagirl, we all value your input and do not want to chase you off the board!

But Emmielou and shayesmom and taeweavmo3 have valid points.

Most of us here have already been through the avoidable tragedy of having been either misdiagnosed or undiagnosed due to doctor ignorance. That seems to be much more common than the also-valid avoidable tragedy that you decribe, sbj, with perhaps more tragic results.

It's only worth listening to a trained professional if they know what they're doing--and in the vast majority of cases, studies have already proved that they don't (University of Chicago, 2006--it takes an average of ELEVEN YEARS to get correctly diagnosed in the US--that literally means 11 years of listening to the doctors and getting misdiagnosed or undiagnosed). If you get a good doctor, great! By all means, listen to him/her--but don't be afraid to question, and if necessary, to take your health into your own hands and listen to your own instincts.

And of course, the big question is, how can you TELL if a doctor knows what he/she is doing?

That's where this board and others like it come in. Educate yourself as much as possible--and part of this education should include the experiences of others.

With the wealth of information (real information, including studies, and including the facts surrounding those studies, such as which pharmaceutical company funded them, and which facts might have been suppressed) available today on the Internet, there is no reason why any of us, after several months of studying, can't be as well-educated about celiac as any "trained professional."

[EmmyLouWho?]

Agreed. Disagreeing is NOT the same thing as degrading. But read again how some comments were written. Like shayesmom said, it's a tad patronizing, not an effective way of presenting a viewpoint. As I've stated several times, I don't think those who get the biopsy done are doing anything wrong. When I began the thread it was simply to ask if anyone else had chosen to forego the biopsy, as I had. I don't consider that an invitation to be referenced to as having "no common sense". I certainly wouldn't approach a NEW member like that. Presenting a viewpoint is a-okay in my book. Putting someone down is not.

I think sbj and I both have, and would therefore like to present, an alternative viewpoint to that of the majority on this forum, so that those coming to read these posts in the future can see that there is more than one point-of-view.

I don't think disagreeing is the same thing as degrading.

[Worriedtodeath]

I didn't refuse the biopsy and I should have. All it did was come back with a negative and 3 drs arguing over what might be wrong with my child. When before the biopsy, all involved were 100% positive it was Celiac and would come back positive. Her damage was not enough to qualify and was slight enough to be caused by a possible milk allergy (even though allergy tests and a month long trial of daily doses of ice cream revealed no dairy allergy or lactose problem) The tests do not detect early Celiac, it does not catch first stage of the disease, and it should not be a standard for children under 3. The University of Chicago Celiac center has brochures that even state children under 3 should eat a gluten diet for a year before testing as time shorter than that may not be long enough to produce enough damage to catch. And considering a sick Celiac child who may only eat the amount equal to a chicken nugget in a day (YES A DAY! I measured every piece and ounce she ate or didn't eat as it was)

For those who are discussing numbers, if the numbers don't matter then why are Celiacs supposed to have 0 or as close to possible 0 for their antibodies because any number above 0 shows they are reacting to gluten. It's on the University's site as well. If you are gluten free, you shouldn't produce antibodies at all. And given that the normals our lab ranges are based on are not 100% perfectly fit and healthy people, I'm not buying the idea that normal people produce small amounts of antibodies. sounds more like the sampling of people tested had this average number of antibodies in their blood. I seriously doubt anyone followed those people for a number of years to see if they developed Celiac to explain their antibodies. And the average also includes those that have high numbers and those who have none.

and for taweavmo3 Thank you My ped is the only one out of the specialists who looked me in the eye and said "we have to use common sense in medicine. Her test results indicate she is a perfectly healthy child with absolutely no known issues to cause this D. Her reality is she is dying in front of our eyes with symptoms that are classic text book Celiac. She won't make another year if you follow the ped gi's advise and she won't make another month without medical intervention to keep her going. ( ped gi said feed her rye and barely for another year and then retest to see if she is "full blown Celiac by then" ) We have no choice but to defy the test results and take her off of all gluten. We have eliminated all possible other things and we are still left with Celiac."

Her turn around was so dramatic that there has never been any doubt that she is a Celiac who had false negatives on both blood and biopsy. To make it worse, her older brother's and my dramatic disappearance of so many things has shown that we too have some kind of issue with gluten as well.

ANd to the original poster We only did the biopsy because our ped begged us to so she could say we had ruled out every possible thing (Celiac can't be ruled out only ruled in) and then we know that moving forward on the gluten free diet was the only possible path. She even said if we had anybody dx with Celiac or had a positive blood work, she would not advise us to do the biopsy due to the extreme poor health of our child and the fact that in her experience babies in this shape with Celiac turn around quickly and we would have an improvement in a matter of weeks once gluten free. But without the positive blood work and no known Celiac in the family, she was worried we might overlook something within the gi tract and my child didn't have the time to try gluten free and then have it not work. Otherwise, she would advise us to go gluten free and dx Celiac. You have Celiac in the family, a positive blood work, the biopsy is overkill and I wouldn't not even sweat turning it down.

[Tallforagirl]

...to the original poster We only did the biopsy because our ped begged us to so she could say we had ruled out every possible thing (Celiac can't be ruled out only ruled in) and then we know that moving forward on the gluten free diet was the only possible path. She even said if we had anybody dx with Celiac or had a positive blood work, she would not advise us to do the biopsy due to the extreme poor health of our child.

I think this is reasonable. As I've said all along, an endoscopy and biopsy is important to rule out other things.

I'm aware that a biopsy can be negative in the early stages of celiac, it happened to me. If I'd known better at the time, I'd have asked for a second opinion on the biopsy slides and on the diagnosis itself.

At the end of the day having a biopsy does not stop anyone from going on gluten-free diet, if they or their doctor feels it will improve their symptoms.

[shayesmom]

and for taweavmo3 Thank you My ped is the only one out of the specialists who looked me in the eye and said "we have to use common sense in medicine. Her test results indicate she is a perfectly healthy child with absolutely no known issues to cause this D. Her reality is she is dying in front of our eyes with symptoms that are classic text book Celiac. She won't make another year if you follow the ped gi's advise and she won't make another month without medical intervention to keep her going. ( ped gi said feed her rye and barely for another year and then retest to see if she is "full blown Celiac by then" ) We have no choice but to defy the test results and take her off of all gluten. We have eliminated all possible other things and we are still left with Celiac."

Her turn around was so dramatic that there has never been any doubt that she is a Celiac who had false negatives on both blood and biopsy. To make it worse, her older brother's and my dramatic disappearance of so many things has shown that we too have some kind of issue with gluten as well.

Your post sharply reminds me of the 6+ months of hell we went through with my daughter once all the testing began. To this day, I will never understand why doctors refuse to follow up testing with the diet....just to be sure. I am so thankful for the one woman who spotted this in our daughter. Without her knowledge and intervention, things would have been so much worse for my dd. I honestly don't know if she would have made it much longer.

Nope. Instead, many doctors want you to stand by and watch your child slowly die in front of you because as we all know, the tests can't be wrong and we can't think beyond the tests. It's amazing that they can look at an emaciated child and then still pronounce them to be "perfectly healthy" according to their tests. And I am shocked by how vehemently they are against trialing the diet even once they've tested for everything and come back with nothing. Diarrhea 7-10 times per day? That can be "normal" according to one of our old pedis. "You just need to feed her more pasta and cheese".

I really feel for other parents who are in the midst of this. It's heartbreaking to go through. As a parent, there is nothing that I wouldn't do to keep my child happy and healthy. And nothing is worse than feeling utterly helpless when things seriously aren't going well for your child.

[JennyC]

I did not biopsy my son because we had already started the gluten free diet prior to going to the pediatric GI. He had a tTG IgA level of three times the upper limit of the normal reference range and he had all of the classical celiac symptoms. He had foul fatty D at least 3 times a day, was bloated, had no appetite and was not growing. Upon starting the gluten free diet all of that disappeared. One month later when we finally made it to the pediatric GI there was no way I was going to put him back on gluten. Blood tests are really accurate now. Correct me if I'm wrong, but wasn't the "gold standard" put into place in the 1950's? Obviously serological tests were not nearly as accurate then and doctors felt that they needed to rely on other methods for diagnosis. The biopsy is no longer required for an accurate diagnosis, and more and more doctors are realizing this. Thankfully, I have found my son a wonderful pediatric GI in one of the most respected hospitals in our region who has never questioned his diagnosis. It seems like gastroenterologists that want to biopsy fall into two categories. They demand flattened villi for diagnosis or they will diagnose celiac disease regardless of what the biopsy shows. I am not on board for a gluten challenge for either scenario!

[Fiddle-Faddle]

I think this is reasonable. As I've said all along, an endoscopy and biopsy is important to rule out other things.

The problem is, those "other things" that can be ruled out are usually not things that doctors use biopsies for. If the first thing suspected is celiac, then the diet ought to be the first thing tried, not a biopsy, as the diet is non-invasive and dietary response is obviously a better gauge of diagnosis.

If the diet doesn't work, you can always do a biopsy later. The chances of gluten being the problem seem to be way, way higher than one of those "other things," given the vast number of supposedly non-celiac people whose symptoms resolve on a gluten-free diet!

Yes, there ARE people whose symptoms are not caused by gluten. But since in many cases, it takes 1-2 MONTHS to schedule the biopsy anyway, you can always go ahead and schedule the biopsy, and cancel it within a few weeks if you are responding to the diet. If you don't respond to the diet, then go ahead with the biopsy. If you are not responding to the diet, it would be really good to know that before the biopsy, as other things can cause villous atrophy, but most doctors think that villous atrophy means celiac, period.

[sandejosgirl]

Hi! Everyone! JennyC, who do you see in Portland? We are near Eugene looking for answers and doctors who know what they are talking about.

My oldest (of 3) is 4.5 and has daily tummy troubles, feels sick, on the toilet, etc. 1 year ago her blood tests were neg., positive for DQ2 gene. We are trying to decide do we retest? Take her to a Peds G.I.???? Everyone says something different. We have no fam. history of diagnosis, but I have colon cancer, thyroid issues, anemia in my fam history, & my husband has IBS & reflux.

Then end of last week my baby (the youngest) turned 1 and had her check up. She hasn't grown in 4 mo and we have no idea why.

I can see not testing if you have a fam. history of celiacs etc., but when you have no idea what is going on? Is is celiacs? What if it isn't?

Any advise would be helpful.

Thanx.

[Fiddle-Faddle]

I can see not testing if you have a fam. history of celiacs etc., but when you have no idea what is going on? Is is celiacs? What if it isn't?

Any advise would be helpful.

Thanx.

Tough call, but I'd say with your family history, you MIGHT want to try the diet. If celiac/gluten is not the problem, then nothing will improve.

You should go ahead and make appointments with specialists--but in all likelihood, it will be quite some time before you actually get to see one, and then more time for tests, and the tests are notoriously inaccurate for small children. In the meantime, the diet just might be the answer to everyone's problems.

IMHO, you have nothing to lose by trying the diet--the possible CURE-- immediately. You do have something to lose by waiting.

[JennyC]

Hi! Everyone! JennyC, who do you see in Portland? We are near Eugene looking for answers and doctors who know what they are talking about.

My oldest (of 3) is 4.5 and has daily tummy troubles, feels sick, on the toilet, etc. 1 year ago her blood tests were neg., positive for DQ2 gene. We are trying to decide do we retest? Take her to a Peds G.I.???? Everyone says something different. We have no fam. history of diagnosis, but I have colon cancer, thyroid issues, anemia in my fam history, & my husband has IBS & reflux.

Then end of last week my baby (the youngest) turned 1 and had her check up. She hasn't grown in 4 mo and we have no idea why.

I can see not testing if you have a fam. history of celiacs etc., but when you have no idea what is going on? Is is celiacs? What if it isn't?

Any advise would be helpful.

Thanx.

We see Dr. Terry who is a pediatric gastroenterologist at Doernbecker's. She is even recommended ny GIG! Here is a link to the clinic.

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