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Pediatric Gastroscopy To Diagnose Celiac In 4 Year Old - Is It Really Necessary?
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My 4 yr old son had high positive antibodies in his blood test. The gastroenterologist wants to do the endoscopy. They sent me out info and, of course, it mentioned "risk of death".

I'm so scared! I just can't imagine putting my son through it. And what does it really achieve?! Surely, there are other ways to test for celiac? And if he has issues with gluten anyway (sore belly, distended belly) then surely he should just stop eating it.

Why oh why should I subject my son to this?

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There is also a risk of death every time you cross the street, drive your car, get on an air plane, swim in a body of water etc... For the sake of your sanity lets keep to realistic happenings, your son may have a sore throat for a bit afterwords and may experience some discomfort but that is about it.

Can you post his blood test results please? Doctors like to do the biopsy because 1- There can be false positives on blood work although this is more rare and highly unlikely with strong positive results, and the big number 2- Money, money, money.

I can give you a better response once I see the antibody results and what exactly was elevated.

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My 4 yr old son had high positive antibodies in his blood test. The gastroenterologist wants to do the endoscopy. They sent me out info and, of course, it mentioned "risk of death".

I'm so scared! I just can't imagine putting my son through it. And what does it really achieve?! Surely, there are other ways to test for celiac? And if he has issues with gluten anyway (sore belly, distended belly) then surely he should just stop eating it.

Why oh why should I subject my son to this?

You are going to get a lot of responses telling you to have the endo done but I will be honest in that I would never subject a 4 year old to an invasive test, especially when there has been positive blood work and, apparently, Celiac symptoms. There are other criteria that can diagnose anyone, without doing the endo. You must have positive blood work, a positive gene test for the main Celiac genes and Celiac symptoms that resolve with a gluten free dietary trial. I was diagnosed using this criteria and refused the endo but it was mainly because I was too sick to have it done. I most likely would have refused it even if I wasn't so sick at diagnosis because you can always do one down the road if you aren't doing it to solely diagnose Celiac disease....mainly looking for other problems that didn't resolve on the gluten-free diet.

The problem I have with the endo is that in a 4 year old, there hasn't been enough time to develop damage that can be seen for diagnosis. It could come back positive but if it doesn't, he could still have Celiac but the GI doc will tell you he doesn't and not to go gluten free. This is happening right now in my family with my 9 year old nephew. He has all the hallmarks of Celiac but is showing no intestinal damage yet...he's 9. So, my niece refuses to put him on a gluten-free diet...even to trial a diet, and his issues remain strong and clear. They are the type who always do what a doctor tells them and their son is suffering bcause of it...drives me up a tree!

Some schools will not accommodate food issues without a full diagnosis but my doctor accepted my Celiac diagnosis without the endo and many others will also. I am just mainly concerned that the endo could be negative and your doctor will not give the diagnosis, leaving you back at square one.

Have you done any dietary trials at all? Are there other diagnosed Celiacs in the family?

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No one in my family is diagnosed but my mum has been off gluten for 15 years - self diagnosed because the doctors were useless in helping her.

No gluten-free trial done yet as we only just got blood tests and were told to keep him on gluten for the endo.

The results were:

AGA IgG >100 (positive > 30)

T-glutaminase 9 (positive > 8)

I don't really understand what this means apart from that he has higher than normal gluten antibodies.

Edited by javic
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No one in my family is diagnosed but my mum has been off gluten for 15 years - self diagnosed because the doctors were useless in helping her.

No gluten-free trial done yet as we only just got blood tests and were told to keep him on gluten for the endo.

The results were:

AGA IgG >100 (positive > 20)

T-glutaminase 9 (positive > 8)

I don't really understand what this means apart from that he has higher than normal gluten antibodies.

Ok...what these mean is that he is having a massive response to gluten. The AGA IgA test is for gluten response in the blood stream. The tTg or T-glutaminase test is for intestinal damage and you notice it is not that high? This goes back to my statement about a 4 year old not accummulating enough damage yet because he is only 4. I went to the age of 46 before my gut was so damaged, I was losing 1 pound per day and was deathly ill. It can take a very long time to show enough damage in the GI tract for a scope to pick it up.

What I would do is go back to the doctor and demand a full Celiac panel. This would be the tests already done and then an EMA, which is highly specific to Celiac Disease. If you have a positive EMA and a positive tTg, then it's 99% sure of Celiac. His response to gluten of >100 is whacko high for a 4 year old. Maybe this will help: http://www.digestive.niddk.nih.gov./ddiseases/pubs/celiactesting/

I would not scope until they have done a full panel and ask about gene testing. If he is genetically positive for a celiac gene, then that would bolster your mother's self diagnosis. I just do not believe in invasive testing until all other non-invasive testing means have been explored. Just my opinion but I agree with your reasoning about his age.

I just re-read your post and noticed that it was the IgG testing they did on the AGA tests. Ask for the additional inclusion of the DGP in the full panel also....it will give you more information, the more they do. They should have done a full panel but this mistake is made often, unfortunately.

No matter about it....with these results, if he is symptomatic, it's most likely Celiac. I bet your Mum feels a whole lot better gluten-free!

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This is your child. The drs wouldn't suggest it of they didn't feel there was a need. I don't mean to offend anyone so let me apologize now if I do, but you owe it to your son to have him checked. Trust the doctors-dont trust us- we may all have a wealth of experience and knowledge about this but no degree. There could be underlying issues as a result of whatever is wrong. Most likely, they will find nothing else wrong with him but possibly celiac, but do you really want to risk it by not doing it.

Also, your child will be in school soon, with out an official diagnosis ( this is only possible with the endoscopy) the school system doesn't have to provide any services at all for your son....

My son has had the endoscopy. He was fine. The whole procedure takes less than eight minutes. Do this for your son, he deserves it.

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I spoke to the gastroenterologist today and she convinced me to go ahead with it. She mentioned that, if the tests were misleading then there could be something else going on other than celiac and that if the endoscopy ruled out celiac then we'd know to look elsewhere for the issue.

Also, true enough, if we did not have a 100% confirmed diagnosis then we might be tempted to let it slide, not worry about the crumbs in the butter, or if the restaurant did not have a dedicated toaster/fryer/whatever.

i feel really sad and scared still though, so if anyone has any words of comfort it would be much appreciated!

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Look at it this way, since he is so young, and if this really is the issue, then he can be taught how to manage it properly (not saying that adults can't, just that children seem to adapt better to change).

The endoscopy isn't to bad at all. Just a small sore throat. Once that is through and if the rest of the celiac panel was done, then i'd say do a gluten free trial regardless of the results. The genetic test is also an option.

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Gliadin IgG has a weak predictive element for celiac, many false positives. However the troubling thing is how elevated it is, usually false positives don't go that high. Ask your doctor for the deamidated gliadin tests both IgG and IgA, I will be very surprised if the biopsy finds celiac with a ttg of one over positive.

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This is your child. The drs wouldn't suggest it of they didn't feel there was a need. I don't mean to offend anyone so let me apologize now if I do, but you owe it to your son to have him checked. Trust the doctors-dont trust us- we may all have a wealth of experience and knowledge about this but no degree. There could be underlying issues as a result of whatever is wrong. Most likely, they will find nothing else wrong with him but possibly celiac, but do you really want to risk it by not doing it.

Also, your child will be in school soon, with out an official diagnosis ( this is only possible with the endoscopy) the school system doesn't have to provide any services at all for your son....

My son has had the endoscopy. He was fine. The whole procedure takes less than eight minutes. Do this for your son, he deserves it.

Actually, many doctors, as I have mentioned, will diagnose Celiac without an endo. The less progressive doctors will not. Schools are only looking for an official diagnosis and it is no business of theirs in how that diagnosis was obtained.

I would go easy on telling people to trust doctors and not us. That kind of thinking has resulted in most people having prolonged diagnosis times. The medical community does a lousy job of diagnosing Celiac and makes us jump through too many hoops to obtain a diagnosis. The OP's doctors didn't even do complete, non-invasive tests before recommending a biopsy, which is ridiculous. It's all about money. As toworryornottoworry stated, which I agree with, I will be gobsmacked if they find any damage with a tTg of 1 over positive. It will be interesting to see what is recommended if this happens.

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I spoke to the gastroenterologist today and she convinced me to go ahead with it. She mentioned that, if the tests were misleading then there could be something else going on other than celiac and that if the endoscopy ruled out celiac then we'd know to look elsewhere for the issue.

Also, true enough, if we did not have a 100% confirmed diagnosis then we might be tempted to let it slide, not worry about the crumbs in the butter, or if the restaurant did not have a dedicated toaster/fryer/whatever.

i feel really sad and scared still though, so if anyone has any words of comfort it would be much appreciated!

I wish you all the best with everything and please keep us posted on your son's results. Everything will be fine and I doubt you will backslide or get careless on the gluten-free diet with him. Once people see the results of the diet, they rarely go back or become lax with it. Let us know if you need any help with that!

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Well I am not sure what state you live in, but in Georgia... To provide 504 services you do have to have an official diagnosis ( which would be with the endoscopy) from a GI doctor to receive anything. I know this because of my son and I actually work within the school. But really that doesn't even matter and isn't really what this post is about.

Everything will be fine. It is an adjustment, but it will become a new norm for both you and your child. Your child is young so I believe that will make it easier. Never be afraid to explain your child's situation. People may look at you strange sometimes, but remember they just don't understand. You will soon find that you have a happier and healthier child. This is something you can control for the most part. There will be times you will be scared, but that is part of every parent's life regardless of their child's health. Your biggest issue will be educating everyone around you... Your child will be the 'easy' part.

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Well I am not sure what state you live in, but in Georgia... To provide 504 services you do have to have an official diagnosis ( which would be with the endoscopy) from a GI doctor to receive anything. I know this because of my son and I actually work within the school. But really that doesn't even matter and isn't really what this post is about.

To answer your question, I live in Massachusetts....but don't hold that against me! :lol: The new criteria for diagnosis, from the leading researchers of Celiac Disease in the US, is positive blood work, positive gene testing, and a positive response to a trial gluten-free diet, with resolution of symptoms. That's way more of a slam dunk that the biopsy...which has high rates of error depending on the doctor who does it and whether or not damage is patchy. My doctor, who was new to me after my diagnosis, accepted this as a diagnosis from me. That, plus I look like a Celiac. I'm small and they tend to believe the skinny Celiacs more than the overweight ones, unfortunately. But all the school needs to see is the Celiac stamp on the paperwork and many doctors here will accept the new criteria. It is none of the schools business how that diagnosis was achieved, as long as it comes from a qualified MD. If I had a young child who was a Celiac and had a diagnosis from an MD, regardless of biopsy or not, the school would accept it or they would be getting sued. There is no such questioning on a diabetic child so they shouldn't discriminate against a Celiac child. Only when people fight back will things change.

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    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
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