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Does My 9 Year Old Have To Be Scoped After Testing Positive On A Celiac Panel

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#1 susan7fink

 
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Posted 03 June 2013 - 04:30 PM

I dont know how this all works forums are not my usual thing. My son was diagnoised with psoriatic arthritis over a year ago, put on meloxican. He started having stomach pain about a month ago. sent us to a GI, she did a sono and found a fatty liver and inflammation. So they want to do a MRI she also ran a full celiac panel. Today i found out that the panel came back positive. Now they want to scope and biopsy him. plus do the MRI.. Our insurance is horrid. However several people have said i do NOT need to do this invasive test on a 9 year old with a positve blood test. That he has celiac and i should go Gluten free.. which seems like a overwhelming task. My husband does not want him scoped and i am  not sure what to do and if the end result would be any differant. Please advise , im just really having a hard time with this. Thank you so much in advance!!


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#2 psawyer

 
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Posted 03 June 2013 - 04:52 PM

There is not a simple answer to this question.

If he has positive results to blood tests, then there is reason to investigate. Some tests are more specific than others, while some are more sensitive. You didn't say which tests were done, and which were positive, so I can't offer more.

You believe that he has celiac disease, and that is enough for you to decide to put him on the gluten-free diet.

Having a documented diagnosis (from the biopsy) can be important for him as he makes his way through life. With the documentation, he we be able to demand (or you can on his behalf) accommodations mandated by the ADA. This can matter in schools, and later when colleges insist that students purchase a meal plan. It can continue into the workplace, and all the way to end-of-life care.

The downside is that having the diagnosis on record may have adverse implications for insurance rates, and for eligibility for certain jobs (especially the US military).

Consider it carefully.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
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#3 luvs2eat

 
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Posted 03 June 2013 - 05:32 PM

I had serious positive blood work (like my doc said he'd never seen such positive numbers) and went immediately gluten-free. I had a need to have an endoscopy several years later for GERD issues and it was reported that I had celiac changes in my small intestines. I'd been gluten-free for several years. I would say that if you have tested positive in a celiac panel... it's time to go gluten-free and never look back.


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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#4 Lisa

 
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Posted 03 June 2013 - 05:57 PM

As many of us have experienced an endoscsopy exam, I can say it's not a big deal at all. Went to sleep for 15 minutes, woke up and drove home (had a driver) and got a good day's sleep.  It also can indicate the level of damage due to Celiac and may be instrumental in time of recovery. In my optionion and MRI will not be significant regarding Celaic Disease.

 

I would think that a diagnosis would be cheaper than any doubt about any illness that may come your way, in the long run.  And it will server as an insentive for a young man to stay on track, as he gets older and independent, as well as official documentation (high school/college).  And I, as well, always recommend that anyone with a digestive issue, have  baseline testing.

 

As a positive serologic test, can be a positive diagnosis. You will have to decide to have support testing with the endoscopy testing.

 

You are smart to educate yourself....make the best decision based on your research and, as a mom.....listen to your heart.  It will guide you. :)


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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#5 Gemini

 
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Posted 03 June 2013 - 06:28 PM

The only thing I can add is that many schools and colleges now do not require the Gold Standard diagnosis as proof of an allergy/intolerance and will accommodate based on parental request.  My niece is not diagnosed but based on my diagnosis, and her massive symptoms, she went gluten free and never looked back.  Both her high school and college did not require an official diagnosis.  That is becoming more the norm and I have had feedback from quite a few other people their experience was the same.I can only imagine that is will be easier and easier with each passing year.

 

With an associated condition that your son has, and the positive blood work, the doctor should be able to diagnose with a positive response to the gluten free diet. Many are old school and will not do that.  It really is up to you and your husband to decide.  Do you think your son would be compliant to the diet if he went gluten-free without the biopsy?  I find that kind of ridiculous because if they did a Celiac panel, and his blood work was conclusive, he has Celiac and I would think that would be enough for anyone but he is young and may stray from the diet when he gets into his teen years. 

 

His arthritis condition will most likely go away or get much, much better on the gluten-free diet. You are going to be surprised at how well he will most likely be!  Good luck to you whatever you decide to do.


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#6 kilbashian

 
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Posted 04 June 2013 - 11:01 AM

My 8 year old daughter had a high level of IGA Gliadin antibody...I am also unsure what to do...they said the only definite way to know for sure if there is celiac is to do an endoscopy...which I do not want to put her through...but I want her to be healthy and would do anything possible to have my kids feel and be healthy in body and in mind.  I believe that there is a gluten problem given family history...but I feel like my kids have gone through enough testing, surgeries, and doctor visits in their life to put them through anymore if not necessary.  I think going with your gut is so important.  I may just try to slowly ease into a gluten free diet.


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#7 mommida

 
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Posted 04 June 2013 - 05:21 PM

Well my daughter has Celiac and Eosinophilic Esophagitis.  The EE needs to be diagnosed with and endoscopy with biopsy too.  H. Ployri infection, parasites, congenital defect, amount oof Celiac damage, and other disorders can be ruled in or out.

 

It is important to know what you are dealing with and if any types of medications might help heal your child.


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#8 freeme808

 
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Posted 05 June 2013 - 09:57 AM

I'm definitely no expert and still pretty new to all of this, but if you cant get the doc to diagnose by blood work and diet improvements, then I would do the endoscopy. Especially because their blood work was positive- you'll be able to better assess the damage done. And like a couple others have stated, it may help them stick to the diet as they get older... Knowing how much damage it can do.

I'm in my early 20s, and have had many problems, and I wish I had discovered this when I was a child. It would have saved me from a whole lot of complications and pain. Not to mention, my parents a lot of money. But, it's okay cause I know now. :)I actually went gluten-free for a little over a month, and even though I felt better I had a hard time for a few different reasons. I think my most annoying one was when I tried to explain to others my condition-although people were sympathetic, sometimes the look on their face was like they didn't believe me...especially cause I couldn't tell them if I was for sure celiac or not. So being that I am back on gluten and didn't go off for very long in the first place, I decided to try and push for an endoscopy. I've had this nagging feeling to make sure everything is okay in there, or if its not. Then I'll know for sure whether I'm Celiac or NCGI. I'm mean, at the end of the day it's for me. I'll be able to know whether or not I can pass this on to my future children. I also know this is my last test and I can finally have a piece of mind. My blood work was negative, so I didn't get the endoscopy the first time around a few months back. But not everyone turns up positive on blood work. My stool test showed raised antibodies though. Hence, the never ending nagging to know.

Good luck in whatever you decide, and talk to your doc about having them diagnosed through blood work and diet improvements alone for diagnosis. If he says no, then don't stop the gluten until the endoscopy, if that's what you decide.
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Need to be sugar, gluten, dairy, & yeast free!

Taking baby steps. Having a harder time transitioning than I thought.  :mellow:

 


#9 susan7fink

 
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Posted 06 June 2013 - 07:31 PM

Ok..I've been doing research and dealing withnother things. Thank you for all your input. Today I asked what actually was positive and what they were looking for in a biopsy.his GIG was normal his RIGA was elevated endometrial was positive his immunoglobulin was normal..I have no clue what this means. I'm so not sure if I want to biopsy him I have to call the scheduler tomorrow..what if it times back negative and yet he still has it?or will get it. He has psoriatic arthritis, allergies, his liver sonogram came back with a fatty liver and inflammation..hence a mri plus bc of the arthritis they want a mri of spine knees and ankles.this is driving me nuts!I want to do the right thing.my insurance stinks our shop is in the red..money is a issue.please I have 50 different opinions.I understand both sides the benefits of testing and not wanting to test go gluten free and not look back...ugh tearing me up...help
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#10 powerofpositivethinking

 
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Posted 07 June 2013 - 02:22 AM

I'm not sure what GIG and RIGA are, but if the endometrial is positive, I'm guessing that means antiendomysial antibodies or EMA iga.  If your son's immunoglobulin is normal, I'm guessing that means his iga.  If this is the case and that level is normal, that validates the EMA test.  The EMA test is 98-100 specific to celiac.  see pg. 12 of this report:

http://www.worldgast..._long_FINAL.pdf

 

are you able to post his blood results with reference ranges here?

 

if the EMA is positive, that means that there is usually already significant tissue damage, so that would show-up on the biopsy.  In the end you have to do what's right for your family, but I would say skip the MRI, get the EGD done, go gluten-free, and I'm hopeful the arthritis will get under control with a strict gluten-free diet.  

 

Ok..I've been doing research and dealing withnother things. Thank you for all your input. Today I asked what actually was positive and what they were looking for in a biopsy.his GIG was normal his RIGA was elevated endometrial was positive his immunoglobulin was normal..I have no clue what this means. I'm so not sure if I want to biopsy him I have to call the scheduler tomorrow..what if it times back negative and yet he still has it?or will get it. He has psoriatic arthritis, allergies, his liver sonogram came back with a fatty liver and inflammation..hence a mri plus bc of the arthritis they want a mri of spine knees and ankles.this is driving me nuts!I want to do the right thing.my insurance stinks our shop is in the red..money is a issue.please I have 50 different opinions.I understand both sides the benefits of testing and not wanting to test go gluten free and not look back...ugh tearing me up...help

 

I agree that a diagnosis would be cheaper than any other illness!  Maybe he eventually won't have to take the meloxican.  is there any possibility this could have contributed to the fatty liver?  I am just asking since I am not familiar with this drug.  Either way, since your son is 9, he is young and the sooner he starts healing, the better, as I'm sure you would agree  :) imagine if he would no longer have to take the meds, and food can be his medicine!

 

sending positive thoughts!

 

 

I would think that a diagnosis would be cheaper than any doubt about any illness that may come your way, in the long run.  And it will server as an incentive for a young man to stay on track, as he gets older and independent, as well as official documentation (high school/college).  And I, as well, always recommend that anyone with a digestive issue, have  baseline testing.

 

 


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#11 nvsmom

 
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Posted 07 June 2013 - 06:38 AM

When he does go gluten-free, give the diet time before you discount it when it comes to arthritis. My pain took a good 6 months to go away.

 

If you did mean that he has a positive Endomysial (EMA IgA), and not an elevated endometrial, then I would feel comfortable going gluten-free too... In fact I did go gluten-free based on that.  If you don't NEED the endoscopy (for a firm diagnosis or to check for other suspected health issues) then don't do it. It really is up to you to decide what to do because all of our situations are different.

 

Best wishes with whatever you decide to do.


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#12 susan7fink

 
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Posted 07 June 2013 - 07:18 AM

Thank you all so much...this I think the hard part..then from there it's a lifestyle change..although a life long one.I don't have the exact numbers..this is what I was told...IGG normal..IGA ..elevated..endomysial positive...immunoglobulin..normal.. that's all I got. The meloxican is a strong nsaid..as soon as his stomach started to hurt they put him on prilosec and discontinued the meloxican..he had taken it for a year. The mri is being done for the liver and for the arthritis to see what damage he has. Oh boy..I also want to add he gets fever blisters ans styes constantly...so I'm not sure what that means? So sorry for all the questions..sorting through this is difficult and being new to celiac I have no clue. Thanks for your patience and wisdom..the support is much needed!
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#13 powerofpositivethinking

 
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Posted 07 June 2013 - 02:28 PM

hi susan,

 

I know you've got a lot happening right now, but I would highly recommend this book in the future:

http://www.amazon.co...is good for you

 

hmmm with acid reflux, I was told to avoid NSAIDs.  if meloxican is an NSAID, and now he is on Prilosec, did he have stomach pain/reflux before the meloxican or was it brought on by that?  Just curious  :)


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#14 susan7fink

 
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Posted 07 June 2013 - 05:26 PM

Thank you all so much...this I think the hard part..then from there it's a lifestyle change..although a life long one.I don't have the exact numbers..this is what I was told...IGG normal..IGA ..elevated..endomysial positive...immunoglobulin..normal.. that's all I got. The meloxican is a strong nsaid..as soon as his stomach started to hurt they put him on prilosec and discontinued the meloxican..he had taken it for a year. The mri is being done for the liver and for the arthritis to see what damage he has. Oh boy..I also want to add he gets fever blisters ans styes constantly...so I'm not sure what that means? So sorry for all the questions..sorting through this is difficult and being new to celiac I have no clue. Thanks for your patience and wisdom..the support is much needed!
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#15 susan7fink

 
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Posted 14 June 2013 - 08:04 PM

I have not figured out how to respond back to others...I hate trying to do new things in the computer. You may be laughing right along with me writing it. The Dr is adiment she wants to scope him but also mri his liver and abdomen. We scheduled it for this Tuesday..not sure what else will show up. A bit nervous. Thank all of you for your info from books to understanding.I have a great amount to learn and I hope I can do this ..another advice on what to didn't bf or after the test? A starting place? How it all fits in with family , dinners other kids friends ect I'm today lost I don't know how to put a gluten meal together!
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