Anyone Turn Down A Biopsy For Their Child?

[EmmyLouWho?]

I just had a high-pressure discussion on the phone with my son

[dandelionmom]

We opted not to have the biopsy done for our daughter. She was too sick and had very positive blood work. Her pediatrician suggested forgoing the biopsy unless we really needed additional proof (her instant improvement with the diet was enough convincing for us!).

The GI we consulted with was kind of pushy too and a little rude about us deciding not to do the biopsy.

[Gemini]

I just had a high-pressure discussion on the phone with my son

[dilettantesteph]

I must admit that I was pretty ignorant when I made these choices, but I not only refused a biopsy, I refused the blood test too. My son was ten and very scared of needles. I thought, why not just try the gluten free diet? If necessary he could always go back on later. I had no idea how hard that would be. I also had no idea how stubborn some doctors can be about believing reaction to diet as conclusive. He was throwing up 10 times a day and I just wanted it to stop. The GERD drugs weren't working and the diet worked right away. By that time we were really sick of going to the doctor, and he was better. The pediatrician also told me that it would have taken months to get into the pediatric gastroenterologist and the whole time while we were waiting my son would have to be eating gluten. I just couldn't see making him that sick again for a diagnosis. It is obvious to both of us that he can't eat gluten. I can see when going through difficult times with the diet and unknown gluten come in that it would have been nice to have a more definitive diagnosis. We got through it and over a year later he is doing great.

Partly why the GI doctors want to give everyone biopsies is to help to figure out the disease. I don't know why my kid should have to suffer for that.

You should be proud that you are putting your child's welfare first.

[littleguyw/CD]

I have a question....

Our son was DX on 12-05-08 (blood work) and he is 3 1/2 years old having said that our GI apt is at the end of the month. What I would like to know, what is a "high level"? How do I know if our son tested high? I have his results... should we do the scoop or not. I dont really want to stick s tube down him. He has been gluten free from day 1 of his DX and is doing wonderful! I love the new little guy I have now LOL!!

sonia

[EmmyLouWho?]

Thank you for the responses!

Dandelionmom

[neesee]

I have a question....

Our son was DX on 12-05-08 (blood work) and he is 3 1/2 years old having said that our GI apt is at the end of the month. What I would like to know, what is a "high level"? How do I know if our son tested high? I have his results... should we do the scoop or not. I dont really want to stick s tube down him. He has been gluten free from day 1 of his DX and is doing wonderful! I love the new little guy I have now LOL!!

sonia

I would probably go for the scope. It will give you a better overall picture of what exactly is going on inside.

Which blood test was positive? TTG and or EMA are the most specific for celiac.

neesee

[EmmyLouWho?]

Sonia

[EmmyLouWho?]

It will give you a better overall picture of what exactly is going on inside.

Just a question...since my doctor wasn't able to give me a good answer. I'm wondering if maybe you've had better luck with doctors being able to explain....what exactly is a better overall picture? Do you mean the damage sustained? From what I understood it acts more as a confirmation to a blood test diagnosis. My son's doctor spoke very quickly though.

Also, one of the things my dad brought up was that damage may not be done to the entire small intestine. Therefore, you may get a false negative b/c the biopsy they took was from an undamaged part of the intestine. He does many scopes himself (as the doctor, not patient) so I found this interesting.

[sbj]

It's up to the individual, for sure. Best of luck to all who ignore their doctor and instead trust their own instincts. I urge people to listen to their doctors. It is NOT common sense to avoid testing that a medical professional recommends because your own layman's common sense or a community forum tells you different. When it comes to your health you can't simply 'listen to your body' and decide for yourself what tests are necessary - you need to get the proper recommended screening.

I think there are two considerations here.

First: you don't need a biopsy to diagnose celiac disease:

"

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."

Second: You might want an endoscopy for baseline comparison, to assess the state of the bowel, to compare for later follow-up, to look at the esophagus and stomach:

"Biopsies give a baseline for comparison. Suppose a patient starts a gluten-free diet without biopsy

[Tallforagirl]

It's up to the individual, for sure. Best of luck to all who ignore their doctor and instead trust their own instincts. I urge people to listen to their doctors. It is NOT common sense to avoid testing that a medical professional recommends because your own layman's common sense or a community forum tells you different. When it comes to your health you can't simply 'listen to your body' and decide for yourself what tests are necessary - you need to get the proper recommended screening.]

I'm with sbj. Now is the time to get the biopsy, because later on, if complications arise and it's neccessary to biopsy, the child will have to do a gluten challenge.

It is not a "garden hose", they use sedation so it's not painful and you don't remember a thing afterwards.

Having said that, I can understand if it's going to take weeks to get an appointment, why you would not want the child to suffer for that long.

[Gemini]

It's up to the individual, for sure. Best of luck to all who ignore their doctor and instead trust their own instincts. I urge people to listen to their doctors. It is NOT common sense to avoid testing that a medical professional recommends because your own layman's common sense or a community forum tells you different. When it comes to your health you can't simply 'listen to your body' and decide for yourself what tests are necessary - you need to get the proper recommended screening.

Yes, and we all know Celiacs who have suffered for years with a mis-diagnosis are just too plain stupid to think for themselves and know what tests are necessary for them. The woman who questioned the doctor originally was correct......the doctor couldn't give her a good reason to do an endoscopy on a 2 year old and her son has responded very well to the gluten-free diet. With other diagnosed Celiacs in the family, what it is that you don't get? If you like to go on the heavy side with testing for yourself, that's your choice and no one would give you a hard time about that but for those who choose otherwise, depending upon circumstances of their illness, they are not wrong for questioning a doctor's reasoning. No doctor should be angry at anyone who refuses more invasive testing, especially if blood work is conclusive and the patient responds well to the gluten-free diet.

[littleguyw/CD]

Which blood test was positive? TTG and or EMA are the most specific for celiac.

im looking at his Laboratory report and I do not see anything about TTG or EMA ?? all we know is that he tested "high" the paper has "Gliadin antibody IgG 35 H U/mL" and that part was high lighted with some big words !! When I called the Dr (yes I had to call because an office staff member called with NO answers to my questions!!!) he said, over the phone, you might want to start you son on a gluten free lifestyle and we are going to set you up with a Ped GI Dr at the Children hospt.

and the test was done at Sonora Quest Laboratories.

[neesee]

im looking at his Laboratory report and I do not see anything about TTG or EMA ?? all we know is that he tested "high" the paper has "Gliadin antibody IgG 35 H U/mL" and that part was high lighted with some big words !! When I called the Dr (yes I had to call because an office staff member called with NO answers to my questions!!!) he said, over the phone, you might want to start you son on a gluten free lifestyle and we are going to set you up with a Ped GI Dr at the Children hospt.

and the test was done at Sonora Quest Laboratories.

IgG is the least specific for celiac. I would definately do the biopsy.

neesee

[Tallforagirl]

IgG is the least specific for celiac. I would definately do the biopsy.

neesee

This is correct. And with young children, blood tests can be even more unreliable.

[Nathan's mom]

We finally landed at a GI's office 2 months after my son was gluten-free - after his bloodwork and advice from a doctor to take him off gluten and "see if it makes a difference". He explained that the Ttg was very specific for Celiac disease and advised to have the scope done. Up until then I just thought my son had a gluten intolerance. I decided against the procedure because we just started to see our son begin to get better at that point. I was afraid to put him back on gluten - afraid of what it would do to his immune system.

However, if he turns, let's say 11 and decides he wants "proof" then I will back him up and let him go for it. Honestly though, I don't think he could tolerate eating gluten again. I think he would be so sick after the first day he wouldn't be able to go through with it.

I think I would just like to know and wish we could have had it done. And yet, he's had gluten a couple of times and we've seen him react to it and know he can't have it. I know that doesn't make any sense. I guess I still hold out hope he isn't really celiac.

Debbie

[Fiddle-Faddle]

We not only turned down biopsy, we turned down bloodwork!

We didn't intend to go that route, we weren't even thinking that our kids had a problem with gluten. The pediatrician said, "well, children get tummy aches, don't worry about it." So we didn't.

But I was diagnosed, and went gluten-free, and decided to make the house gluten-free except for "their" bread for lunches, which made the family sort of gluten-lite.

The tummy aches, which had been 2-3 per week, disappeared almost completely. And #2 son's severe eczema, which had never responded to even the strongest prescription steroid creams, disappeared.

My husband and I gave each other one of those significant looks, and said, "hmm, we'd better double-check this before going to the doctor about it." So we put the kids on more gluten--and they tummy aches and eczema returned. So we went gluten-free, and tummy aches and eczema disappeared.

We did one last challenge--and #2 son sealed the deal by crying (while in the bathroom in misery), "I'm NEVER eating gluten again!"

He was 9 years old. And as far as we know, he has never cheated. His friends' parents tell us he refuses gluteny snacks at their houses.

At this point, we don't WANT a diagnosis of celiac on our health records--too many insurance companies are using it as reason to either deny coverage or raise rates. And at this point, bloodwork/biopsies are useless for us. Why biopsy a healthy child with no symptoms? Our pediatrician is on board with us about this, and says, 'if it ain't broke, don't look for a fix!"

However, if the gluten-free diet did NOT make the symptoms go away, further testing would be the next step.

It always amazes me how doctors want to do INVASIVE procedures that DO carry certain risks (anesthesia in small children is the riskiest part of any operation, and even sedation has been known to cause death even in adults, either from "human error" or from atypical reaction, though admittedly that's rare) when it's not necessary.

I don't know if they are blinded by what's been hammered into them during residency/med school, or if they are just blinded by financial greed.

[Fiddle-Faddle]

I guess I still hold out hope he isn't really celiac.

Debbie

Debbie, it doesn't make any difference whether or not he is "really celiac."

If he is "only" gluten intolerant," that could either be early-stage celiac, or a non-celiac gluten-intolerance, but either way, gluten still makes his body attack itself--and he could end up with multiple autoimmune diseases.

I have a 16-year-old student, who has been in physical therapy and on NSAIDS for 3 years because of severe joint pain. They told her she tested negative for juvenile rheumatoid arthritis, so it must be fibromyalgia.

I told her about celiac; she tried the gluten-free diet and--no more joint pain! She couldn't care less if she's celiac or gluten intolerant--she knows now what basically stole 3 years of her childhood, and she's not giving gluten one single day more.

[Dyan]

I didn't have my daughter biopsied either. The doctor who dx her said that the blood tests were pretty acurate now a days and said to skip the biopsy. I put her on a gluten free diet and saw major improvements. Not radical and not overnight. But slowly but surely she was feeling better. It wasn't until a few months later that I started to really re think my decision to pass on the biopsy.

We had done all kinds of blood work prior to me insisting on the celiac blood work. So I knew she didn't have an ulcer and she wasn't this or that, we went through the whole work up. The first doc said she was depressed. So when we started her on the diet and she felt better I asked her if she wanted to do the biopsy so she would know 100% for sure it is Celiac. She said no. She doesn't care what it is or what you call it, we call it Celiac, she wants nothing to do with gluten. And this is from a girl who would love to go to KFC and eat a whole bucket to herself.

She is 12 and I can't imagine putting her through that. A toddler would be harder. I get the "I need to know" attitude and I also get the "I already know" attitude.

[luvthelake21]

Will you have a letter from your childs doctor stating he has Celiac? Once kids are in school having that peice of paper is Crucil. Mu daughter was 10 and had positive blood work but still did the biopsy which came back positive. She has missed several days of school the last two years whie adjusting to the new diet. If it was not for the offical paperwork in a public school they could had called child services on us. The peice of paper could help if you ever travel and need to take your own food to somewhere where you need your special foods. But as a adult I would not want a official diagnosis on my medical records.

[dandelionmom]

Will you have a letter from your childs doctor stating he has Celiac? Once kids are in school having that peice of paper is Crucil. Mu daughter was 10 and had positive blood work but still did the biopsy which came back positive. She has missed several days of school the last two years whie adjusting to the new diet. If it was not for the offical paperwork in a public school they could had called child services on us. The peice of paper could help if you ever travel and need to take your own food to somewhere where you need your special foods. But as a adult I would not want a official diagnosis on my medical records.

I'm not sure who you're asking but with the blood work only, we still have the official diagnosis that works for school and everything else.

[Fiddle-Faddle]

Will you have a letter from your childs doctor stating he has Celiac? Once kids are in school having that peice of paper is Crucil.

No, it's NOT!!!!

As long as you have a letter from your doctor stating why your kid is missing school (diarrhea, vomiting, cramps, or just a letter stating that the child is ill and under the care of a physician, and is missing school with the physician's knowledge and approval), you don't need a diagnosis of celiac.

The same goes for travel.

[EmmyLouWho?]

It's up to the individual, for sure. Best of luck to all who ignore their doctor and instead trust their own instincts. I urge people to listen to their doctors. It is NOT common sense to avoid testing that a medical professional recommends because your own layman's common sense or a community forum tells you different. When it comes to your health you can't simply 'listen to your body' and decide for yourself what tests are necessary - you need to get the proper recommended screening.

Wow, I'm a little offended that you believe me to have no common sense and purposefully ignoring my doctor. We did the bloodwork. The bloodwork was VERY positive. And funny how I am the one who requested the screening and got laughed at by the pediatrician. Who has the child's best interest in mind? As I stated...I repeatedly asked the doctor what the PURPOSE of the biopsy was. He did not give me a good answer. In fact, he reiterated over and over that it was to confirm diagnosis. That means my son is diagnosed and they just want to re-confirm that. For OUR family, that is not a good enough reason to run the risks involved with a biopsy (nicks that can scar and turn into blockages, etc). Sure risks are rare, but they're there. I stated that I do not see people who choose to do the biopsy any differently than those who do not. 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 suggest not "greeting" everyone on this board for their first time this way. As if the diagnosis isn't hard enough.

I'm not sure who you're asking but with the blood work only, we still have the official diagnosis that works for school and everything else.

Exactly. The doctor yesterday even admitted that even with ONLY the bloodwork, we still have an official diagnosis. It's part of the reason I couldn't understand going on to do the biopsy.

Thank you for the replies everyone. It's nice to see that I'm not the only one who has made this decision. And I urge that I have several doctors in the family (one WITH Celiac himself) so I'm not making off the wall decisions regarding my child. I still can't get over that I have to put that disclaimer down.

[dandelionmom]

I suggest not "greeting" everyone on this board for their first time this way. As if the diagnosis isn't hard enough.

...

I still can't get over that I have to put that disclaimer down.

Tone is hard to interpret on a message board. I learned the hard way that some people come off very harsh but don't mean to sound that way.

[EmmyLouWho?]

Dandelion