Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

What Now? Results Of Endoscopy For Dd

gfgtj

Recommended Posts

gfgtj Newbie
gfgtj
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

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.  Open Original Shared Link

 

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.

gfgtj Newbie
gfgtj
Posted
  • Author

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.

nvsmom Community Regular
nvsmom
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,082
    • Most Online (within 30 mins)
      10,442
    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...