• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Finding A Doctor That Specializes
0

3 posts in this topic

Hello!

We took our children off of gluten in October 2012. My daughter was diagnosed with ADHD and Sensory Processing Disorder and we wanted to try diet changes before medicating her. After taking her off of gluten and dairy a lot of other symptoms that we thought were unrelated started to clear up. Having BM accidents in her pants, bloated belly, ear infections, bladder infections....the list goes on and on. Many of her neurologic symptoms have cleared as well! My son has always had a lot of food allergies and he also does really well on a gluten and dairy free diet.

 

I was diagnosed last month with Celiac Disease. Now I really want to have my children tested (via endoscopy/biopsy) to get an official diagnoses. I think it will be easier in school and as they get older I'm hoping they will be more likely to stay away from gluten.

 

My first question is: My children are 6 and 2, are they to young for an endoscopy with biopsy? Is it dangerous when they are that young??

 

and also: How do I go about finding a Pediatric GI doctor that specializes in Celiac Disease? I live in West Michigan and have access to a lot of hospitals in and around Grand Rapids.

 

The doctor that diagnosed me really didn't know anything about Celiac, I only got my diagnoses because I requested the testing. I really want someone who knows their stuff when they are dealing with my precious children!!

 

Thank you in advance!!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


None of the tests will be useful if the kids are not eating gluten.  The amount of time you have to eat it before testing varies.  My doctor told me 6 months.  Even then, testing can be difficult, especially in young children.  The tests themselves are not difficult - both my boys actually had a great time when they went in for their endoscopies - it is just difficult to get accurate results.

 

To find a doctor, I would search in your area for a Celiac Support Group and ask their advice.  A local group will know more about the local doctors.  

 

With your history and their response to the diet, it seems clear that they have an issue with gluten.  I understand your desire to get a formal diagnosis.  Just keep in mind that a negative test does not mean they don't have it . . . it could confuse things more.

 

Good luck to you -

 

cara

0

Share this post


Link to post
Share on other sites

Thank you so much!! I haven't been able to find a support group in our area. The closest doctor's that specialize in celiac disease that I can find are in Chicago. That really isn't that far from us but it would be easier to have someone in the area.

 

I was thinking I would have to put my kids back on gluten and I was hoping I could do it over the summer since they are so affected by it. I just wish the tests were more accurate, it would make life a lot easier!

None of the tests will be useful if the kids are not eating gluten.  The amount of time you have to eat it before testing varies.  My doctor told me 6 months.  Even then, testing can be difficult, especially in young children.  The tests themselves are not difficult - both my boys actually had a great time when they went in for their endoscopies - it is just difficult to get accurate results.

 

To find a doctor, I would search in your area for a Celiac Support Group and ask their advice.  A local group will know more about the local doctors.  

 

With your history and their response to the diet, it seems clear that they have an issue with gluten.  I understand your desire to get a formal diagnosis.  Just keep in mind that a negative test does not mean they don't have it . . . it could confuse things more.

 

Good luck to you -

 

cara

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
      107,332
    • Total Posts
      935,525
  • Member Statistics

    • Total Members
      64,993
    • Most Online
      3,093

    Newest Member
    EmmaLauren
    Joined
  • Popular Now

  • Topics

  • Posts

    • Newly diagnosed, who do I tell? I'm not talking friends & family. I am normally private about health matters but I feel it seems I need to tell so many people. Does anyone have a list? Some are obvious like doctor and dentist but one came up for me the other day when my massage therapist asked if I'd had any changes in my health and I said no but halfway through the session realized that, "Duh I should have mentioned Celiac! Clearly the lotion used could be an issue." So who is on your list to tell? Here's who I have so far: Doctor(s) Dentist Restaurant Servers Massage Therapists Hair Stylist Babysitters, Petsitters or Housesitters (anyone who might bring or prepare food in my home)      
    • I feel the same way! Newly diagnosed (gluten-free since July 1) and never had major GI symptoms mostly neurological issues and other very random stuff. So no red flags to tell me, "You just glutened yourself!" Or at least I haven't identified them yet. I'm not sure if I'm feeling better or not yet. I do have more energy but lots of anxiety and random symptoms that might be celiac related... but who knows. I'm just not sure if this is what "feeling better" is yet. I can't imagine what that is like... or will be like. And I keep reading about people "getting sick" when they are glutened but that is so vague. For me, I'm not sure I'll know if I've actually been glutened or not. I feel like I'm extremely careful but I'm not sure if I'm being over the top, or if I'm doing it right, or not enough and need to do more. I'd just like to get to a nice gluten-free baseline and note what that is like so that I can compare how I used to feel and how I might feel if glutened so that I'll know! Sorry, didn't mean to hijack your thread and provide no answers. I can just relate, that's all.
    • Last check(last fall sometime) my b12 and folate were fine. He did check my iron and it was fine. My potassium is technically normal, but lower than my cardio wants(I'm on q med that depletes it). Last time I had a full and extensive panel run was years and years ago. I recall my copper being high(but no one ever retested it), vit d and a couple others were low. I have tested positive for labs used to evaluate malnutrition, but it's been q couple of years since they've done those. Just going to put it on the back burner for now I guess. Can't afford to lose much more weight, but they tend to get more serious the lower my BMI goes(not on purpose, I'll have periods where I can gain a bit because I'm not vomiting a lot. Past two days I've been throwing up again after I eat.) Maybe my next colonoscopy will finally show something useful.  It's just 3 years this time and I've been arguing about my gut for 18 years now so what's a little More? 
    • Re. gorilla munch - Made with corn, says gluten free on the box, I don't know why it wouldn't be. It's quite yummy. Corn pops and Post golden crisp used to be my favorites, before celiac.
    • I buy the Chex cereals( except wheat). I had recently been buying Puffins from Barbara's bakery but got a very unsatisfactory answer to my question about where they source their oats so I have decided to stop buying them. See below.... "Thank you for your recent email about the oat flour in our Puffins cereal.  We appreciate the time you took to contact our company.

      Approximately 90% of our ingredients are sourced from North America. However obviously there are some crops that do not grow here, and items that are not manufactured here. In those cases, we source from other areas, mainly UK, EU and South America. Regardless of where the supplier is located, we have a very robust Supplier Assurance Program that ensures that we purchase only from approved, high quality suppliers. 

      We thank you again for your comments and hope you continue to enjoy our products.  If, at any time, we can be of further assistance, please don't hesitate to contact us again."
  • Upcoming Events