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      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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Now? Results Of Endoscopy For Dd
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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.

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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.

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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.

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

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      Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not advise Dapsone. It is quite a toxic med but if you do talk to your doctor about it make sure that they do blood work before prescribing and frequently during the time you are on it.  Some celiacs have liver impact and Dapsone can be damaging to the liver. I also had both DH and the all over itchies. Being strictly gluten free and avoiding obvious sources of iodine like iodized salt or iodine in supplements will help you heal. I hope you get some relief soon.
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