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

susan7fink

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susan7fink Rookie
susan7fink
Posted

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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psawyer Proficient
psawyer
Posted

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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luvs2eat Collaborator
luvs2eat
Posted

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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Lisa Mentor
Lisa
Posted

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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Gemini Experienced
Gemini
Posted

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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kilbashian Newbie
kilbashian
Posted

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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mommida Enthusiast
mommida
Posted

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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freeme808 Apprentice
freeme808
Posted

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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susan7fink Rookie
susan7fink
  • Author
Posted

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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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

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:

Open Original Shared Link

 

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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nvsmom Community Regular
nvsmom
Posted

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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susan7fink Rookie
susan7fink
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Posted

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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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

hi susan,

 

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

Open Original Shared Link

 

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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susan7fink Rookie
susan7fink
  • Author
Posted

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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susan7fink Rookie
susan7fink
  • Author
Posted

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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tarnalberry Community Regular
tarnalberry
Posted

With so much going on, I would be tempted to go with the scope, to help rule in/out other things as well.

I hope it all goes well.

Let us know how he's doing!

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pricklypear1971 Community Regular
pricklypear1971
Posted

You can do this. It's as simple (and difficult) as eliminating gluten from your home and his diet.

Has the doctor explained why the MRI is necessary since they've determined fatty liver via sonogram? Or should I say, why is it necessary right now? Postponing may help financially?

As far as a scope for celiac, you've received great answers already. The reason you were asked about the actual levels is because for children that have super high antibody levels, scoping can be dropped for dx.

Many Celiacs have liver issues - granted, he's young to have that dx. Many Celiacs also improve liver function (tests) on a gluten-free diet, after healing starts. Ditto on joint problems - usually there's improvement.

I would have a heart to heart with the doctor about the testing. Ask what your doc knows about celiac, liver function, arthritis and how she perceives gluten-free may improve these things (aside from gluten-free being the rx for celiac). You may find she is not very celiac savvy, or she may be quite knowledgeable. I'm sure you're familiar with "feeling out" docs by now, given your son's health issues. You're going to have to do it again, through a celiac lens. Does she order every test on the books, normally? If so, can she justify it? Would a second opinion be worthwhile?

I know you're overwhelmed. Just try to slow down and breathe. You can get through this. You've come to the right place for help.

Your son will learn the diet, and how to handle himself. So will you. It won't always be easy, but you can all do it. Most food IS gluten-free: meat, fruit, veggies, legumes, and all grains except wheat, rye, and barley.

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nvsmom Community Regular
nvsmom
Posted

(Hugs) Hang in there.

 

If for some reason the scope is negative in spite of the positive EMA IgA and tTG IgA tests, I recommend you stick with the gluten-free plan. It does happen on occasion that damage in the intestines is missed (the surface area is that of a tennis court!) but an EMA is 98-100% specific to celiac disease (meaning out of 100 positive EMA tests, 98-100% of them is due to celiac) so chances are he has it. The tTG IgA is less specific to celiac disease (91-99%) and can occasionally be caused by chronic liver disease, diabetes, hashimotos, or infections; that could be part of the reason they want to check his liver.

 

The first few months gluten-free are hard to adjust to, especially if a celiac experiences withdrawal for a few weeks (fatigue, headches, stomach issues, and a baaaad mood).  Many foods kids like can be made gluten-free. Rice noodles are as good as wheat noodles... just don't overcook them. Hotdogs can easily be made gluten-free and most fries are. Making a gluten-free pizza crust is a bit different than a wheat one but once taste buds change it's no big deal.

 

You'll do fine.

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nora-n Rookie
nora-n
Posted

I am in Europe.

 

Over here in northern Europe, last year they changed the testing.

 

Now children under 18 do not need to be scoped provided the blood test (Ttg-IgA) is 10x the upper limit on two occasions.

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susan7fink Rookie
susan7fink
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Posted

I Have tried to post several times today and im thinking its my tablet or me... I had him scoped yesterday.. the dr came out and said/showed pictures of his stomach and sm intestines. damage, not severe but there.. not normal she said with the blood work and what she saw she would be shocked if the biopsies are negative. I should have them back end of the week but in case they are bsack logged tues at latest. He had a MRI of the liver and abdomen.. negitive as of now .. whatever was on the sonogram they saw nothing on the MRI. My daughter who saw the endocrinologist..is doing a full panel.. tsh , hormones and celiac... so we shall see i hope at the end of the week i hate waiting.. i read all your posts and thank you so much for all your input.. now i need to know where to start.. finding a printable list is crazy.. i want a list of foods!! thats all. :) I will let  you all know when i hear about the biopsies. here we go.. a new way of life.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I Have tried to post several times today and im thinking its my tablet or me... I had him scoped yesterday.. the dr came out and said/showed pictures of his stomach and sm intestines. damage, not severe but there.. not normal she said with the blood work and what she saw she would be shocked if the biopsies are negative. I should have them back end of the week but in case they are bsack logged tues at latest. He had a MRI of the liver and abdomen.. negitive as of now .. whatever was on the sonogram they saw nothing on the MRI. My daughter who saw the endocrinologist..is doing a full panel.. tsh , hormones and celiac... so we shall see i hope at the end of the week i hate waiting.. i read all your posts and thank you so much for all your input.. now i need to know where to start.. finding a printable list is crazy.. i want a list of foods!! thats all. :) I will let you all know when i hear about the biopsies. here we go.. a new way of life.

The best way to shop is to learn how to read labels - to know what is a safe ingredient, what is not.

https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

https://www.celiac.com/celiac-disease/safe-gluten-free-food-list-safe-ingredients-r181/

Unfortunately, a list will be obsolete the minute you print it.

In the Newbie area, there's a Newbie thread. Lots of good hints and info.

Ask lots of questions.

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susan7fink Rookie
susan7fink
  • Author
Posted

So to let everyone know who has been so kind to me..my sons biopsy came back positive with inflammation and damage.I'm blessed we found out so young and that I have no clue how long this has been going on, however I believe if he also didn't have seen auto immune disorder..out would have never been caught so soon. Now I have alot to learn! Glad I had the scope and have an answer!

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

I'm so glad that you have answers :)   I hope your son feels much better soon!!

So to let everyone know who has been so kind to me..my sons biopsy came back positive with inflammation and damage.I'm blessed we found out so young and that I have no clue how long this has been going on, however I believe if he also didn't have seen auto immune disorder..out would have never been caught so soon. Now I have alot to learn! Glad I had the scope and have an answer!

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nvsmom Community Regular
nvsmom
Posted

I'm sorry he has celiac disease but so glad you found out at such a young age.

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freeme808 Apprentice
freeme808
Posted

Im so happy that you got the answer you needed. :)

Two books that I really like:

The Gluten Free for Dummies series by Danna Korn

Open Original Shared Link

 

My ultimate favorite cook book, because I have other allergies as well, and the recipes are easy and yummy! is by Tammy Credicott

Open Original Shared Link

 

These books have helped me in so many ways! It can be quite overwhelming the first couple times grocery shopping, but eventually you'll get it. If it's not a "health" store, and just a regular grocery store...I find myself walking around the perimeters of the store- as that's where all the naturally gluten free foods usually are: fruits, veggies, meat, dairy if you can have it. 

 

Good luck to you and your family!

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      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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