Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Son Saw Gi Doctor Yesterday
0

9 posts in this topic

Hello! I joined this message board a few weeks ago and I first want to start by saying THANKS to all of you. Everyone has been so helpful therefore reducing my stress greatly. Now to my son, his pediatrician sent us to a Pediatric GI doctor to check for Celiac, due to an increased AGA IgG level. When we went yesterday, she immediately put him back on a regular diet (he's been gluten-free for over two months) for 2-3 months. She did order all 5 blood tests yesterday even though he's been gluten-free for awhile. She is also having us collect stool so that she can check the fat content. At the end of the 2-3 months, she wants to repeat the 5 blood tests and if they show positive for Celiac, she wants to order DNA testing. I was shocked when she said this beacuse in all the posts I've read, most doctors won't order this. Am I correct? She never mentioned anything about scope or biopsy, just the blood tests and the DNA testing. What are your thoughts on all of this? Any information will be greatly appreciated.

0

Share this post


Link to post
Share on other sites


Ads by Google:

It sounds like she is starting with the least invasive tests first. If she comes up with positive results from the bloodwork and stool sample, she might not order an endoscopy. Although she might order it later to determine the extent of damage, but that will depend on what she finds in the other tests. It is my ~humble~ :D *opinion* that she is starting off very well! Perhaps you have found a good GI doc for your son!

0

Share this post


Link to post
Share on other sites

I am not sure if some doctors opt not to do that for celiac but it sounds like you found a good doctor who is being very thorough. My GI doctor ordered the 5 tests plus the gene test and at that point I had no clue what I needed to be tested for. Keep us posted :D

0

Share this post


Link to post
Share on other sites

Hi - I have a post out there, I'm new. I just read yours and wondered what are the 5 tests, and what gene test is being discussed?

My son, now 2 1/2, has not gained weight in over a year. The doctors don't seem to know what to do other than suggest a feeding tube but that terrifies me.

He was fine on baby food and Alimentum. The trouble all began with table food. He has foul-smelling stool, often has gas, and burps all the time.

My post has information about me (still up in the air) and since you mentioned a gene test, at this point, I'd do just about anything to find out what's ailing us both.

0

Share this post


Link to post
Share on other sites

trying4faith:

The thought of a feeding tube makes me want to vomit! FIND A NEW DOCTOR!! BLECH!!!!!!!!!!! My daughter, almost 4, just finally hit the 29-pound marker! I was thrilled, needless to say. She has been at 28 pounds for at least the last 6 months. In fact, she can now share some shirts with her 1-yr old sister! I suspected food allergies earlier this year. They tested her - and she's allergic to 7 different things. I brought her in for a follow up the other day, and they drew more blood. They are checking for celiac disease, cystic fibrosis, and "some other things" that can cause failure to thrive in a young child. What I *totally* appreciated - is that they're doing all these tests at once. So she only needs to be poked one time. They're also doing the stool test for fat that was mentioned in the original poster's message.

To answer your question on the 5 tests: I don't know them offhand. In the topic about testing and diagnosis.... I recently asked the question "Exactly what tests do I need". There is a terrific answer there - shows the long name (and abbreviated name) of all the 5 tests. You know... when it comes to our children, they should always start with the least-traumatic tests first. Drawing blood is harsh on them for a few minutes - but the terror goes away quickly. I can't imagine having to put a feeding tube in my daughter!!!! That would be just plain awful!!

If my daughter's test come back negative or inconclusive, we will probably just try the gluten-free diet and see what happens. I would certainly try the diet before putting her thru any invasive procedures (biopsy, etc...).

*hugs*

0

Share this post


Link to post
Share on other sites




These are the 5 tests I was talking about:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

These are the most common tests for celiac.

0

Share this post


Link to post
Share on other sites

Thank you for the replies. I believe I was tested for three of the 5, plus wheat. Aidan, my son, has had blood drawn many times, unfortunately.

I do not know what exact tests were conducted for celiac disease for him, but will follow up with his GI and ask. I was told she is very familiar with celiac disease in children, she's at UNC hospital.

The idea of a feeding tube chills me as well. I've been putting that off for some time now.

His food allergy panel is positive for dairy, egg (very high), moderate for soy, and mild for peanut. He won't eat chicken or fish no matter how much I try to disguise them. Does not eat red meat either, but will eat pork.

It's been very hard. If anyone knows of a good cookbook for gluten-free foods for children, I'll try it. The issue is, of course, he goes to daycare so it will be a real challenge to remove G altogether.

0

Share this post


Link to post
Share on other sites
Thank you for the replies.  I believe I was tested for three of the 5, plus wheat.  Aidan, my son, has had blood drawn many times, unfortunately.

I do not know what exact tests were conducted for celiac disease for him, but will follow up with his GI and ask.  I was told she is very familiar with celiac disease in children, she's at UNC hospital.

The idea of a feeding tube chills me as well.  I've been putting that off for some time now.

His food allergy panel is positive for dairy, egg (very high), moderate for soy, and mild for peanut.  He won't eat chicken or fish no matter how much I try to disguise them.  Does not eat red meat either, but will eat pork.

It's been very hard.  If anyone knows of a good cookbook for gluten-free foods for children, I'll try it.  The issue is, of course, he goes to daycare so it will be a real challenge to remove G altogether.

<{POST_SNAPBACK}>

0

Share this post


Link to post
Share on other sites

To whoever asked about good gluten-free cookbook for kids: Incredible Edible Gluten Free foods.

Re; those who think you should not do biopsy b/c it is so invasive, I respectfully disagree. We just had one for our 4yo who had positive blood work. It was not that big a deal, and the dr. got to see the extent of the damage, and got to look at her body on the way down. She diagnosed an ulcer which could be the cause of our daughter's anemia, and gave us ways to treat it. In short, going in for a look seems to me to be the wisest way to go, especially since it is the "gold std." What if you just go gluten-free and don't know about some other problem that could be caught via endoscopy? Also, I know celiac disease mimics some other diseases (such as cystic fibrosis, Crohns) and the biopsy was not consistent w/ these, thankfully (although I'm still doing the sweat test next week for my own well-being). We bought the book "Eating Gluten Free With Emily" for kids, which my daughter loves, tells all about the diagnosis, etc.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined