• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
0
gfgtj

What Now? Results Of Endoscopy For Dd

Rate this topic

Recommended Posts

Looking for some insight and opinions. 10 yr old daughter has been having stomach problems since Jan of 2013 on almost a daily basis. I have biopsy confirmed celiac.Her celiac panel included EMA- negative, Total Iga- adequate and TTG IGa and TTG IGg. Only her TTG IGG came back positive.

We deceided to biopsy to try and get more information. Unfortunately the chief pediatric gastro only took two biopsies from the duodenum. Pathologist report says "no significant histopathology". They did find her to be low in lactase(lactose intolerance) and glucoamylase(enzyme that breaks down starches). My understanding is that these enzymes are produced from the villi in the small intestine. Daughter is still in pain despite a month on amitriptyline and and anti spasmadic. Now we are starting Ultram which is just a pain pill. My preference is not to drug her into oblivion. Follow up appointment is next week with GI. Should I request more testing? Push for a Dr sanctioned gluten free trail? Dr. 's recommendation may be the only thing that gets her Dad to comply. Thanks in advance for any suggestions.

Share this post


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


You might want to push for deaminated gliadin peptide testing - the DGP IgA and DGP IgG are better at picking up cases of celiac in very young children and are often the first tests to become positive. It might show positive... You could also try the older AGA IgA and AGA IgG (anti-gliadin antibodies) which are less specific and sensitive but could help you with a diagnosis.

 

She might have to be classified as Non-celiac Gluten Intolerance (NCGI). If all tests are negative, and you need a diagnosis for her other caregivers, that would certainly be your best bet.  http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

 

It's a shame her father won't comply when it's his own child's health on the line.  :( Does he live with her or is it just visits? If it is visits, you might be able to send a cooler of food with her when she goes over there, and maybe gluten-free labelled jams and butters.  It's not ideal but it could make it easier for her.

 

If you are all in one home, I would suggest making the house gluten-free regardless of him. He can have gluten-free when he is out of the house if he can't responsibly comply with his daghter's health needs. If he is not there, make your home gluten-free so it is easier for her when at home.

 

I hope going gluten-free (after testing is complete) helps her out. It's not right for young kids to be given bandaid pain relief and not have the root problem addressed... why do doctors think that is okay? :unsure:

 

Best wishes to you and your daughter.

Share this post


Link to post
Share on other sites

Thanks for the advice and the sympathy ( I guess it was a little bit of a rant):)

Forgot to mention that I have two copies of HLA-DQ8, so she has a least one of the celiac genes.

She goes to her Dad's some weekends and longer periods over the summer. The cooler might help on the weekends and she is old enough to read label at least. She seems willing to try anything including going gluten free to get some relief so that's where I'm leaning. Just hope I can get the doctor to agree or reccomend at least a trial to help to get her Dad on board.

Share this post


Link to post
Share on other sites

Rant away. :D. We've all done it a few times. Lol. Good luck!

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
      108,944
    • Total Posts
      943,614
  • Member Statistics

    • Total Members
      67,284
    • Most Online
      3,093

    Newest Member
    Randilee
    Joined
  • Topics

  • Posts

    • This could be related to nutrient deficiencies such as multip B-vitamins, magnesium, primarily with some others to consider like vitamin D E and iron. But my concern with be diabetes also, it is a fact that diabetes and celiac go hand in hand often. AND if you eat gluten free processed food often you are eating a ton more starch, carbs, and sugars then you need to which could make this worse. I would really suggest seeing a doctor about this as it seems to be a really serious issue. Discoloration is a blood flow issue normally.....this could lead to complications and loss/amputation of you your extremities. Again my main concern would be diabetes, if you want to help keep track of this get a glucose monitor from walmart and check you blood glucose before and a at the 30, 60, 90, 120min mark after a meal for a week monitor the results and see about taking them to a doctor. If your seeing large spikes and drops between and after meals this could be a sign of something. (again observational data not a doctor here  but info to help). You can try supplementing B-vitamin complexes and magnesium also help but PLEASE talk to a doctor on this issue. Change to a whole foods only diet for awhile and see about cutting out processed foods, sugars, and going easy on the carbs.
    • Celiac disease is a bit like a chameleon in symptoms with over 500 known combinations (someone else said this number). It being a autoimmune disease it would not be unheard of it effecting the lymph nodes and in fact early on my first signs of a CC was tightening and swelling of the ones in my neck. I have not noticed this with my past few encounters in the past 2 years. But as I said it is a chameleon in symptoms. You will need to be eating gluten daily for about 12 weeks for the celiac blood panel which is the standard for testing with this disease. And keep eating it for 2 weeks prior to a follow endoscope and biopsy to check for intestinal damage. You can read up more in the link http://www.cureceliacdisease.org/screening/
    • Hi there, I was recently diagnosed with Celiac after having dramatic weight loss, extreme fatigue, digestive issues, and a variety of other things. The blood test and biopsy both came back positive so I have been following a strict gluten free diet.  I have been experiencing muscle spasms, frequent face redness all over, and as of lately my toes and fingers have been turning different colours. The most concerning would be my toes as they will go purple. Each toe looks like it has a bruise on it. Is this symptomatic of celiac? I followed up with my family doctor but his only suggestion was to see a dietician, and out I went.  My antibody came back positive, and the titre was high and speckled. Is this related to the celiac? Not much has been explained to me, and I am just trying to understand further! If anyone has any advice, or comments I would be glad to read them!    Thank you  
    • You should get the lymph nodes checked. You need to be eating a regular gluten containing diet to get the best & most accurate results for celiac disease.
    • try ragu double cheddar sauce
  • Upcoming Events