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

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#16 tarnalberry

 
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Posted 14 June 2013 - 09:02 PM

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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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#17 pricklypear1971

 
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Posted 14 June 2013 - 09:15 PM

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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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#18 nvsmom

 
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Posted 15 June 2013 - 12:00 PM

(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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Nicole Posted Image

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Celiac - June, 2012
Hypothyroid - August, 2012

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#19 nora_n

 
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Posted 16 June 2013 - 03:21 AM

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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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#20 susan7fink

 
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Posted 19 June 2013 - 01:52 PM

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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#21 pricklypear1971

 
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Posted 19 June 2013 - 02:53 PM

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.

http://www.celiac.co...ents/Page1.html

http://www.celiac.co...-&-Ingredients/

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.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#22 susan7fink

 
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Posted 26 June 2013 - 07:51 PM

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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#23 powerofpositivethinking

 
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Posted 27 June 2013 - 04:56 AM

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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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  :) 


#24 nvsmom

 
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Posted 27 June 2013 - 11:52 AM

I'm sorry he has celiac disease but so glad you found out at such a young age.
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"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#25 freeme808

 
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Posted 27 June 2013 - 03:44 PM

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

http://www.amazon.co...ree for dummies

 

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

http://www.amazon.co...tammy credicott

 

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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Need to be sugar, gluten, dairy, & yeast free!

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

 






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