Experiences With Biopsies And Young Children (under 2yrs)

[betsy7]

My son's bloodwork for celiac (through Prometheus labs) was positive. He has positive AGA IgG, positive TTG IgA, positive EMA IgA and negative AGA IgG. My husband has also recently been "fully" diagnosed - bloodwork and biopsy.

We have a biopsy scheduled for my son in a few weeks. All of our doctors recommend it in order to give him a full celiac diagnosis and put him on the lifelong diet. And, intellectually, I know it's best in order to find out how much damage he has. But, as a mom, but I hate to put him under if it's not necessary.

I wanted to ask others on the board about their experiences with biopsies and young children. Did anyone have any problems? Any excessive bleeding? Any problems with the anesthesia?

Thanks!

Betsy

[Rachel--24]

I don't have any kids but in my opinion he already has a positive diagnosis of Celiac. I dont understand why doctors need to "see" damage in order to make it "official". It seems pointless to me in a situation like this. When there is some doubt then I can understand the need for biopsy but when all bloodwork is positive and there is a family member already diagnosed it seems like alot to go through for nothing. The biopsy was not a big deal for me but for a 2 year old I think it can be traumatic and no question its invasive. I dont always say this but in your case I think the biopsy is unnecessary for diagnosis. He doesnt really need a positive biopsy in order to begin the diet. I would imagine if the biopsy were negative you would still start him on the diet.

[Jnkmnky]

Yeah, I second Rachel. I never had my son go any further than a blood test. I simply don't agree that it's necessary. Drs LOVE to run these tests. Think about how unnecessary it is, though. Your child has a dx. What is really going on here? Celiac disease is FINALLY getting the acknowledgement it's desparately needed for decades, so here are all these drz wanting to run the diagnostic tests to "confirm" something that's already been confirmed!!! I think it's pretty shocking that so many people fall for the logic of, """now we have to run this test to double confirm the dx you already have...""""" for what? Let me tell you that a school will NEVER question the dx you ALREADY have. You have a dx. I'm a military wife and parent alone most of the time. I'm always moving, always getting new drz. I walk into a new drz office, a new school, a new whatever and say (with no paperwork or proof) my son has celiac disease. I never ultimately prove anything, never been asked to, either. My son was three when dxed, now nearly 8. I've lived on the east coast and the west with him. Those drs of yours just want to experiment with finding atrophied villi since this whole Celiac thing is finally taking off and they want to hone their skills.

You'll manage without their divine approval and second dx. Trust me... yeah, yeah, it's the internet and who the hell am I??!!...... I'm a mom, like you! I probably know more about Celiac disease than those bone-heads!

OH, and I'm editing here... but I re-read your post and I didn't like how you phrased this.."All of our doctors recommend it in order to give him a full celiac diagnosis and put him on the lifelong diet" For one thing... Your son already HAS a full celiac diagnosis with the positive bloodwork... and the other thing.. .THEY'RE not putting him on the gluten free diet, you are! You could do it if you read Dangerous Grains and decided gluten wasn't good for ANYbody's body. I put my other two children on the gluten free diet after reading that book. I didn't have anybody's permission. It sounds like your doctors are controling your every move. You really have all you need right now to make all the decisions you want for your son.

[Guest nini]

DON'T DO IT!!!! The biopsy is useful IF the bloodwork was questionable, but it's not, he already has a dx based on bloodwork and family history, I did not have the biopsy and I'm an adult, my dr. said that since my bloodwork was positive there was no reason to do this UNLESS I did not respond to the gluten-free diet. My daughter's bloodwork was inconclusive but we did NOT put her through the biopsy, just got her pediatrician to support a gluten-free trial of the diet to see if it would help, and boy did it! So my daughter's dx is based on positive dietary response and family history. You already have the answer, there is NO REASON to do this test. I have spoken with several experts in the field who have said that the biopsy is NO LONGER the gold standard for dx, and the bloodwork IF POSITIVE is far more conclusive. Damage in small children can be sporadic and easily missed, and they may be reluctant to give a dx if they don't find damage. That does not make sense. Oh lets wait until there is damage before we do something about it. BULL!

You do not need a dr.s permission to put your child on the diet. You do already have a positive dx with the bloodwork so please consider not putting him through the biopsy. It's completely unnecessary since he does have positive blood results.

[sillyyak]

I guess I am in the minority here. I had a biopsy before I had the bloodwork. The doctors did not know what I had and a GI consult was the last thing I had before they were goinig to ship me off to psych unit. The biopsy came back + and then I finally had the right bloodtest to diagnose celiac. I would say Listen to your doctor. Not all doctors love to do tests. I would think you would need a marker/baseline of how much intestinal damage is/done. This was if your child still has some complications, refractory sprue, at least you have a marker/baseline down the road. I dont think biopsies are a bad thing. I can understand the experience of putting someone through an endoscopy is filled with negative aspects, but I would say listen to what your doctor has to say. If you dont think it is necessary, question your self as to why you think the biopsy is not necessary. Is it not necessary because you dont want him to be in pain or is it not necessary because you already trust the celiac diagnosis? If you are questionning whether or not it is celiac based on the bloodwork alone, then maybe a biopsy is useful. If you dont want him to be in pain, I can understand that but it would be temporary pain for what might be useful information to have.

[VydorScope]

My sont was 18mos old when he had the biopsy. Let me walk you through the reason why we decided to do the endoscope....

He was SHRINKING, writhing in pain, non stop diahreah, and regresing with learning and behavior. I have no reason to belive other hten the fact he was literly DIEING from gluten. We had never heard of celiac disease, and we tlad by many poeple that stuff liek oat meal, cherroirs, bread was "gentle" and good for some oen with all his GI problems. He already had an upp GI barum seris that should nothing, but BLOOD was comming up in his spit up (he wore bibds most of his life at this point). Our pedi doc sent us to Vanderbuilt childerns hosptial where a pedi-GI doc said that he wanted to do an endoscopy right away to see what was going on. We agreed. It was one of the hardest decsions for a parent, but what else could we do at that time. Our son came through fine, did not have any sideffects that we know of, and once the anthesia wore off he was completely un effected by it.

Later that day, or hte next some one on my forums siad "you know that sounds a lot like celiac disease". I almost fell over when I started reading about it. THAT MINUTE I took him off all gluten and he showed signs of improvement imdeitaly. The following week when the doc called with the bisopy results he siad "damage consitent with a reaction to food", I then asked him about celiac disease, told him the changes we saw with the diet and he orderd the blood test, which he showed postive for IgE. But the response to the diet was all we needed, it was to clear.

Today he is big boy running around happy, giveing his Sunday School teachers heck and a very happy child. Way behind in speach devlopement still, but has made HUGE strides.

Looking back if we knew of celiac disease, I probably would not have done the Endscopyfirst, probly would have done the blood test first, and when that was postive I probably would have skiped the biosopy. Its lot of risk, and stress and NO addtional information. However, this is after a year of hindsight... I do NOT regret my decsion at the time, ti was the best one we could make.

I personal did the Endoscopy tiwce my self, once its over its no big deal, and for me I was not wordie, but as a parent.. Iwas a stress case

[SueC]

I struggled with the decision of whether or not to put my 4 year old through an endoscopy. I decided to do it mainly because she was asymptomatic and her celiac was picked up on a screen. I really didn't want her later in life to question whether or not she really has celiac. I wanted definite proof for her based on the gold standard. I DO realize the blood work is pretty definitive but I wanted more information for her and I wanted to know how much damage she had. I got the answers and put her on the gluten free path without any doubts.

The procedure itself was very easy for her. We had it done at the local Childrens Hospital and she didn't even realize she got an IV. I went to her in recovery after it was done (about 30 minutes after they wheeled her out of her room) and she was on her 2nd popsicle. I am glad I had it done.

I hope this helps. It is not an easy decision.

[TCA]

Whatever you decide, it is your decison, but here is my story:

My son had GI issues from 6 weeks old when he had bloody stools. He had his first endoscopy at around 3 mos. when they determined it was an allergic reaction to casein in the breast milk he was eating. I stopped eating dairy and the blood stopped. At around 9 mos old, shortly after introducing him to solids. His growth stopped. He was almost walking and no progress was being made there either plus the diarrhea started. This continued for a few months and his pediatrician mentioned Celiac as a possibility. He sent us back to the GI. AT around 20 mos. he did a biopsy (I didn't even know blood work was an option) and it was negative for Celiac. His problems continued and he started having major speech delays, though he finally walked at 16 mos. He still wasn't growing. He'd been wearing the same size for about 18 mos. His diarrhea was getting worse and he was labeled as having Toddler's Diarrhea (which just means they don't have a clue what's going on IMO). At 35 mos. he had the blood work done and it was "inconclusive" with elevated IgA and very High IgG. We were told that a biopsy had to be done to confirm it, but it was starting to look like celiac. The biopsy was negative. After all of this we found out that both blood work and biopsies are often incorrect (false negatives) in kids under 5. In Jan. I put him on a gluten-free diet and within three weeks his growth took off and the diarrhea stopped. It has been amazing to see the change. The GI doc now agrees that it's Celiac, but doesn't want to give him an official diagnosis since he doesn't have a positive biopsy and the diagnosis could be hard for insurance purposes later. He knows me very well, though, and said he wasn't doing it because he knew I would keep him on the diet no matter what.

My daughter had no testing done, but had symptoms. She also has a heart condition and it's all a VERY long story, but I just tried the diet with her and it worked.

Do what you feel like you need to do, but keep in mind that biopsies aren't always correct in those that are so little. If TtG is positive, then there is intestinal damage. The procedure itself isn't a huge deal IMO, but keep in mind it may not be correct if they don't find damage and they need to get at least 6-8 samples.

good luck in your decision. I know how difficult all this is, but let me know if I can help in any way!

[Twin mom]

First, of all - I know this is not how you are feeling, but getting such an early diagnosis is excellent news. There is growing evidence that untreated celiac disease can lead to diabetes and other autoimmune disease and the treatment is diet - no drugs, no hormones, no shots.

Doctors are very dogmatic about biopsies but there is absolutely no reason to have one given the bloodwork. Prometheus is considered the top lab in the country and a positive EMA means your child has celiac disease. There are no other known causes of a positive result. There is all this nonsense about -- well, when your kid is a teenager they will rebel and eat pizza. Well, when the kid is a teenager and feels like rebelling - they will do so, biopsy or not.

The reasons not to do biopsy now:

1) Risk. Not a lot, but definitely some.

2) Stress. A biopsy will seem like any other day surgery to you, the parent. Scarey!

3) Possible confusion. The small intestine is very long, celiac disease often strikes only a portion and biopsies only take a few samples.

4) Delay. If you decide not to do it, you can start today with gluten free diet and do additional testing. Your child will likely be anemic, maybe deficient in a few other vit/ minerals-- and you can fix that now. I cannot tell you the difference the diet made in my child. The idea I would have waited a couple of weeks / month during a critical time in development.

I know it is hard to face down the doctor. The key question you have to ask is-- given my child's labs and symptoms which caused him to get tested, if the biopsy comes back negative , will we do anything different? If the damage is light vs heavy, will we do anything different clinically?

The answer will be no - no matter what, they will want you to try the gluten free diet and there is no such thing as a semi-gluten free diet. This is different than some other diseases where damage may impact dosage of meds , and you will have the answer when you see your child's response.

Good luck

[marja]

First, of all - I know this is not how you are feeling, but getting such an early diagnosis is excellent news. There is growing evidence that untreated celiac disease can lead to diabetes and other autoimmune disease and the treatment is diet - no drugs, no hormones, no shots.

Doctors are very dogmatic about biopsies but there is absolutely no reason to have one given the bloodwork. Prometheus is considered the top lab in the country and a positive EMA means your child has celiac disease. There are no other known causes of a positive result. There is all this nonsense about -- well, when your kid is a teenager they will rebel and eat pizza. Well, when the kid is a teenager and feels like rebelling - they will do so, biopsy or not.

The reasons not to do biopsy now:

1) Risk. Not a lot, but definitely some.

2) Stress. A biopsy will seem like any other day surgery to you, the parent. Scarey!

3) Possible confusion. The small intestine is very long, celiac disease often strikes only a portion and biopsies only take a few samples.

4) Delay. If you decide not to do it, you can start today with gluten free diet and do additional testing. Your child will likely be anemic, maybe deficient in a few other vit/ minerals-- and you can fix that now. I cannot tell you the difference the diet made in my child. The idea I would have waited a couple of weeks / month during a critical time in development.

I know it is hard to face down the doctor. The key question you have to ask is-- given my child's labs and symptoms which caused him to get tested, if the biopsy comes back negative , will we do anything different? If the damage is light vs heavy, will we do anything different clinically?

The answer will be no - no matter what, they will want you to try the gluten free diet and there is no such thing as a semi-gluten free diet. This is different than some other diseases where damage may impact dosage of meds , and you will have the answer when you see your child's response.

Good luck

Just wait and see what he is doiong with the gluten-free diet .I 've just came back from the PD after testig the gluten-free diet for two weeks and w=he was surprised about how everything was going:no gas,a healthy look,no diarree ,no pain and he can eat more things then ever before going on the diet. We just started by our selfs after visiting the PD every month trying to find out what was wrong with him and the PD had a list with several options for more check ups and also the IGA and Biopty but now he said after trying this diet:the history and the diet is 95% knowledge so just wait for a couple of years untill he is older and the go for the bioptie. He is getting a couple of test but only for other things and that will be normal Lab things. So jsut try the diet out and when thats works..what else can you wish for your child :no pain and diarree....

[JakeARoosMommy]

I'm in the same predictament. We had our appointment with the GI doctor at the Children's Hospital in Seattle today. The doctor said that my 21-month old son would have to go back on gluten for at least a week before the biopsy. The GI doctor said that this biopsy would rule out if it was just an allergy to gluten (that he could outgrow) vs. Celiac Disease (lifelong autoimmune disease). I was like, "I really don't want to do that and see him get sick again." The GI doctor agreed with me that just simply avoiding gluten for now would be the best option, but the doctor stated that before he enters school at age 5, it might be best to get an official dx of Celiac.

I left feeling better, knowing that we weren't going to be doing a biopsy. That Jake wasn't going to be backtracked nutrition-wise for three weeks by being exposed to something that is toxic to his little body. The brain and body are developing at this age and nutrition is of the utmost importance.

[Guest nini]

I'm in the same predictament. We had our appointment with the GI doctor at the Children's Hospital in Seattle today. The doctor said that my 21-month old son would have to go back on gluten for at least a week before the biopsy. The GI doctor said that this biopsy would rule out if it was just an allergy to gluten (that he could outgrow) vs. Celiac Disease (lifelong autoimmune disease). I was like, "I really don't want to do that and see him get sick again." The GI doctor agreed with me that just simply avoiding gluten for now would be the best option, but the doctor stated that before he enters school at age 5, it might be best to get an official dx of Celiac.

I left feeling better, knowing that we weren't going to be doing a biopsy. That Jake wasn't going to be backtracked nutrition-wise for three weeks by being exposed to something that is toxic to his little body. The brain and body are developing at this age and nutrition is of the utmost importance.

my daughter's OFFICIAL dx is gluten intolerance. Her pediatrician supported me in a gluten-free trial and was amazed at her miraculous recovery, this was after the GI said that she "just had IBS"... anyway. My daughter is in kindergarten and does not need an official dx of Celiac. Get the Dr. to give you a note that your child has gluten intolerance and needs to be on a gluten free diet for life. This is plenty sufficient. I thought at one point that I was going to need an official dx of Celiac, but this is not the case. We KNOW it's celiac that she has, but since the only treatment is keeping her gluten-free for life, a dx of gluten intolerance is just as good and all you need for that is the fact that the child had a positive response to the gluten-free diet.

[JakeARoosMommy]

Nini,

I think that the GI doctor was saying this, if we ever wanted to find out if it was something that he might just have temporarily vs. lifelong. He refuses to give a dx of Celiac without a biopsy being done, just a gluten intolerance. I could only dream that this was temporary, but something says it is Celiac and will be lifelong. I don't know why he mentioned to do it before school. It might have something to do with providing more information to the school for his school record...don't know.

Thanks for your reply, Lisa

[betsy7]

Thank you all so much for your thoughts about the biopsy... we actually ended up having our son's procedure moved up and went ahead with it. It was yesterday at Children's Hospital of New York (Columbia Presbyterian). We were definitely "on the fence" about the whole thing, but ended up deciding that it was best to do it now -- if we were ever going to do it -- because:

-- He wasn't gluten free yet (his positive blood test was just about two weeks ago).

-- If going gluten free doesn't resolve his growth problems -- or other problems arise in the coming months / years, we will have a "baseline" endoscopy to compare to.

-- If he does have celiac disease, we want to be able to tell him that his diagnosis was "confirmed" when he's grown up and wants to eat regular pizza, drink beer, etc..

We are going to go gluten-free, regardless of the outcome, and see if it positively impacts his growth -- both height and weight.

Just to describe our son's procedure for future readers considering an endoscopy for a young child:

-- He was put under and intubated -- a tube was put down his throat in order to keep his airway open in case he threw up. The intubation was done because he's so young. I guess young children have a harder time controlling their gag reflex and the tube makes the procedure much safer.

-- The procedure took about 45 minutes.

-- We were allowed to go with him into the operating room (dressed entirely in protective hospital clothing) and stayed with him until the gas made him go to sleep.

-- Afterward, he was very upset and cried for quite a while. We held him and tried to calm him down. He was also very hungry pretty soon afterward and I was glad that I brought some fruit, snacks, etc.. with me. He started eating melon right in the recovery room and this really helped calm him down.

-- Within 2-3 hours of the surgery, he was competely himself again.

It was definitely a stressful few days and I am very glad that it's behind us. Now, we just have to wait for the results. If it's positive, we'll definitely know. If it's "equivocal", then we won't have confirmation and probably wish we hadn't put him through the biopsy. But, our doctor explained that if it's equivocal we'll still try the diet and see if it helps his growth. If it does, then he does have celiac disease.

Thank you all for all of your thoughts and opinions. It definitely helps to hear all different points of view!!

[Annie/NM]

I get annoyed with our Dr.'s office when I read your statements on this board. THey tell me that he might have a "false positive" from his bloodwork and the only way to tell is with the biopsy. It sounds like from you guys that there is no such thing as a "false positive." They tell me not to worry, it might not be Celiac's and not to worry about testing his siblings unless he is diagnosed. Can anyone tell me how likely it is that my husband or myself have it? Or does it just occur in random cases? The nurse today said that he can see during the endoscope and doesn't go in blind so can take 6-8 samples as needed by what he sees. But then I asked if you can see the damage on endoscope and she said no. So I don't have a lot of faith right now in our pediatric gastro's office. Unfortunately, it is the only one in our state. We are going to go ahead with the diet regardless but his main symptom is that he goes #2 like 4-5 time a day, small sticky amounts. We are just hoping to potty train him after the diet starts. The nurse told me not to worry about the IgG #'s that only the IgA numbers were important. Is that true? She said the other 2 things test other things? How do you know if it is celiac's versus intolerance? Thanks for all your help! It is so confusing.

[TCA]

IgG can indicate a number of things going on in the body, not just celiac, but IgA represents Celiac, at least that's what they told me. Both were elevated in my son, but the Ttg was negative, so it was considered inconclusive. IgA, however, can be low if the total IgA is low. My son wasn't tested for that, but now that I know about it I wish he had. He had a negative biopsy, but his amazing dietary response tells it all. Celiac is a genetic disease, so one of you may have it. I never suspected myself until I went gluten-free for my breast fed daughter. The joint pain I had all of my life went away for the first time ever as did this blistery rash (I now think is DH) I always have and thought was poison oak. I have no GI symptoms except the gas. The biopsies can definitely give false negatives, but I've never heard of false positives in the bloodwork. My son potty trained after going on the diet and it's wonderful. We still put a pull up on him if he gets glutened since he can't control it. Good luck in figuring it out.

I get annoyed with our Dr.'s office when I read your statements on this board. THey tell me that he might have a "false positive" from his bloodwork and the only way to tell is with the biopsy. It sounds like from you guys that there is no such thing as a "false positive." They tell me not to worry, it might not be Celiac's and not to worry about testing his siblings unless he is diagnosed. Can anyone tell me how likely it is that my husband or myself have it? Or does it just occur in random cases? The nurse today said that he can see during the endoscope and doesn't go in blind so can take 6-8 samples as needed by what he sees. But then I asked if you can see the damage on endoscope and she said no. So I don't have a lot of faith right now in our pediatric gastro's office. Unfortunately, it is the only one in our state. We are going to go ahead with the diet regardless but his main symptom is that he goes #2 like 4-5 time a day, small sticky amounts. We are just hoping to potty train him after the diet starts. The nurse told me not to worry about the IgG #'s that only the IgA numbers were important. Is that true? She said the other 2 things test other things? How do you know if it is celiac's versus intolerance? Thanks for all your help! It is so confusing.

[MallysMama]

Unlike most of the people on this board - I am so glad to hear you went through with the biopsy!! Back in the day they didn't have all the blood tests to confirm Celiac - a biopsy was how it was done. So - if it worked back then - it still works now. Having a biopsy done when I was around 16-17 months old was what saved my life!! I was "knocking on death's door"....and I'm sure it couldn't have been easy for my parents to put me through that - but the end result was so much better. Through the biopsy they discovered just how damaged my intestines were....and that helped explain why, even after going on the gluten free diet, I was still suffering and not absorbing any nutrients. That led them to hook me up to a temporarily permanent IV - which helped me live (now I have a "cool" scar to always help remind me how my life was saved)! I know I was too young to make the decision for myself - but I am soooo thankful that my parents decided to have that "simple" biospy done on me. All the new blookwork tests are so new to my mom - she has a hard time believing that they, alone, can diagnose a disease that affects the intestine. I don't doubt their importance (it's amazing how far medical science has come in 20-21 years)... but I'm all for the confirming biopsy.... and some day I might have to make that decision with my daughter.

[sarahjo]

I have a 2.5 year old who has been sick with everything since birth, she has a feeding tube, and she only weighs 23 pounds. she can't hold weight. the doctors investigated me for abuse, because they thought that I wasn't feeding her. I am I doing everything I can think of, we started a gluten free diet for 8 months, she gained over 5 pounds, she was rarely sick, and then we got a new gastro. he said nothing was wrong and to start her on a regular diet, that was 6 months ago, we did find out she is allergic to milk severly. changing to that diet still didn't help. she has only been healthy for 2 days, and hospitolized 2 times and she is miserable, he did test her by blood, she does carry the gene that could develop into celiac, but he is against me switching her to gluten free with out definite proof, I started it yesterday. a mother can only go so long before she's tired of listening to the doctors. I am tired but my gut screams celiac. please help

[MallysMama]

I have a 2.5 year old who has been sick with everything since birth, she has a feeding tube, and she only weighs 23 pounds. she can't hold weight. the doctors investigated me for abuse, because they thought that I wasn't feeding her. I am I doing everything I can think of, we started a gluten free diet for 8 months, she gained over 5 pounds, she was rarely sick, and then we got a new gastro. he said nothing was wrong and to start her on a regular diet, that was 6 months ago, we did find out she is allergic to milk severly. changing to that diet still didn't help. she has only been healthy for 2 days, and hospitolized 2 times and she is miserable, he did test her by blood, she does carry the gene that could develop into celiac, but he is against me switching her to gluten free with out definite proof, I started it yesterday. a mother can only go so long before she's tired of listening to the doctors. I am tired but my gut screams celiac. please help

You're her mom - trust that "gut" feeling! The doctors are not the ones with your daughter day in and day out. You know her ten times better than they do. I recommend getting a new doctor for her (a "second opinion")....and if you feel better about keeping her gluten-free - then do it! It's not easy though... so be prepared to do it 100%. This website is very helpful with food ideas and lots of advice! My daughter is 20 months right now...and we're going to have her tested soon. I just can't imagine what I'd feed her if she ever gets Celiac (it's one thing for me to eat whatever I can find...it's another for her - when I need to keep her healthy). She absolutely LOVES crackers! So, I feel for you - trying to get her diet gluten-free. Good luck!

[penguin]

Why is it that Dr's are so apprehensive about the gluten-free diet? Nobody died of not being able to eat a donut!

[MallysMama]

Why is it that Dr's are so apprehensive about the gluten-free diet? Nobody died of not being able to eat a donut!

They're probably apprehensive because it's so hard to feed a toddler a balanced meal in the first place - if you take away things that contain gluten - it doesn't leave very many (toddler friendly) options. I've tried feeding my daughter gluten-free - and it's sooo hard (and I am gluten free!). She knows what she wants - and it doesn't include rice cakes! I think they just don't want to deprive kids of certain foods unless it's necessary (though they shouldn't be the ones to make that call - it should be the person who Knows the child).