New To Celiac - Seeing Gi On Tuesday Need Help

[ccooper]

My 11 year old son seen his pediatrician for his sixth grade physical. He was born with Hirschsprung's disease and has always had "intestinal issues". We always assumed it was the Hirschsprung's disease. At the appointment for his physical the Pediatrician recommended testing for thyroid and celiac because of his short stature (5th percentile). The lab completed a celiac panel and the results are positive for celiac. We have an appointment with a GI specialist at Norton Hospital Louisville KY on Tuesday. I have driven myself crazy reading everything everywhere. I would like to know how accurate is the celiac panel, and what I need to ask or be prepared for when meeting the specialist. Any information would be helpful, because I don't want to be worrying myself if the celiac panel is not very accurate, but I don't want to be under educated if it is accurate. Thanks

[CeliacMom2008]

The blood test is about 98% accurate. Many/most doctors will recommend a biopsy to confirm the diagnosis, as the biopsy is considered the "gold standard test" for Celiac. You'll find controversy on the biopsy. Some feel that with the high reliability of the blood test the biopsy is costly and unnecessary. Others will tell you that the biopsy is necessary and in addition to confirming the diagnosis for Celiac, they will tell you it can show other issues/problems as well. You and your doctor will have to determine if it is right for you.

If you end up with a biopsy, don't fret over it. It is a pretty simple procedure and doesn't cause your child much discomfort (most of the discomfort is just the worry!). It's really not anything to get worked up over. You do need to keep your son eating gluten until after all the testing is done. Taking him off gluten before the tests will decrease their accuracy because once the gluten is gone the body stops reacting to it.

Since there is such a high chance that he has Celiac, I give you the advice to take a few calming breaths and relax. Having Celiac is not the end of the world - not by a long shot. The first few months are overwhelming as you learn a new the diet, but once you're through the learning curve it truly is not that big of a deal if you don't make it a big deal. Find a support group (online (here) is good, but a real live group to visit with in person is even better). If you can afford it or if your insurance covers it, visit with a dietician (preferably one who is very familiar with Celiac). And strap on a good attitude and a smile.

Treat this as an adventure that can bring you and your family closer together and not some tragedy. You can get a lot of information from this forum, but do remember that most of us are just normal people (not specialists of any kind) and so you may get conflicting opinions on some issues. As you travel through the next couple of months consider all of us your new best friends. We've all been where you're most likely headed and we make good listeners and advice givers.

Welcome!

[ccooper]

Thank you for the information. I am actually excited about the diet thinking that it will benefit my whole family. I am just worried because I am a mom and this is very serious to me and not so serious with my husband (yet, he'll get there eventually). I live in a very rural area and nobody has ever heard of celiac, so resources are slim. I am a teacher and work very closely with my special education director, so I know the school will work with me on the needs of my child. I am so glad to have found this site, it's a wealth of information for a me.

As far as the biopsy goes, if the GI request it we will do it. My son has had so many problems with the other disease that I would rather be safe than sorry no matter the cost. He's been through several operations before and even had a colostomy for a while, so this procedure seems minor.

Thanks again for responding, I felt like I was alone in the world of celiac until now!

[LDJofDenver]

If you end up going gluten free, there are resources out there that make every day shopping less difficult. Many mainstream products (Kraft, Heinz, Kroger, Hormel, etc.) are gluten free, more than you think.

There are grocery shopping guides you can buy that will make your life WAY easier at the store. Lists items by category (soups, chips, dressings, spaghetti sauce, etc.)

Gluten-Free Grocery Shopping Guides:

Open Original Shared Link

Open Original Shared Link

There

[ang1e0251]

Don't worry because you are rural, I am too and there are alternatives. You can buy all kinds of specialty items on the internet, if you choose. But regular mainstream whole foods are in every market and very good food for the person with celiac disease. Do you have access to a large chain grocery or a Walmart you could shop at maybe once a month? They will have many gluten-free products like pasta and frozen foods.

If you meet with a nutritionist, take your husband along. Can't hurt for him to hear the recommendations first hand.