Jump to content
  • Welcome to Celiac.com!

    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):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hi I Am New Hear Wanted Some Advice.


Guest tracey and emma

Recommended Posts

Guest tracey and emma

hi everyone nice to meet you.

i have a 2 1/2yrs daughter who has server gastrophical reflux. emma is one in 5 children in the uk that medication did not work for and failed to thrive. she has major surgury 14mths ago to keep her alive. (nissan fundoplication)

she is fed now by gastrostomy tube as she does not eat, and when she does it comes out as diorea.

we moved to germany 7mths ago from the uk, where they started more indepth tests. to day i have been told that she has an abnormal cell count in her stomach/intestines (can not remember which) which leads them to think that she has the beginins of celiac disease.

she is at 2 1/2yrs weighing in at 7.8kgs (no mistack) she still can not go forward facing in a car seat. (officially) she is sleepy uncomfortable pale. and only thrives when fed on neocate. we have been trying the past 4mths to get her to eat for her self but the more she eats the worse things get.

i have no idear what the hospital meant when the said they were recounting cells by hand?

i have only basic knowlege of this condition?

any info would be great feeling shell shoked today as it is a nother thing i feel i am waiting to be confermed, and that i need to get my head around.

thanks

tracey


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



Celiac.com Sponsor (A8-M):



lizzy Apprentice

hi tracey and emma

i am really sorry that your chils is so sick its hard enough for any adult to deal with it never mind such a young child. i dont know enough to give you any advice only there is a lot of good pepole on here that can , they helped me a lot. anyway just wanted to say heloo and welcome . am too from uk and lived in germany, they do have good german hospitals there, liz

jenvan Collaborator

Tracey--

so sorry to hear what your daughter is going through!! but if she does in fact have celiac...she can be on the road to recovery soon! do you know what blood work the doctors ran?

Read below to quickly get educated on Celiac:

Go here to see symptoms: Open Original Shared Link

Go here to see how one gets tested: Open Original Shared Link

Info on disease: Open Original Shared Link

Guest tracey and emma

hi again and thank you for the links. i have read and stuided them in great detail :mellow: am now feel a bit more in control now i understand, and a lot of things made sence

i do not know about blood tests i know they were going to take bloods in the endoscopy a week and a half ago, but what they tested for i do not know.

being honist i am phobic of needles and hospitals and tend to go into a complete dither at apointments! and if the bring a suring near me end up being a patent my self. (does get embarasing!) so being a terrable mum those sorts of questions i get out and think why did i not ask that!

thank you so much i will keep you posted, don´t know how long it takes to count cells! but will let you all know.

tracey

jenvan Collaborator

tracey-

another resource is "wheat free, worry free" by danna korn. it is a very good book on celiac, the disease, lifestyle etc. and would educate you much... i don't know if you can get that in the UK...

when do you get the endoscopy results back?

I am not sure what other languages you speak...but trying to find you more 'local' resources. I pasted some info below that might also help...

German Coeliac Society: Open Original Shared Link

Then there is a German speaking Austrian list with about 60 participants from Austria, Swiss and Germany. More information could be found at Open Original Shared Link. The list manager can be reached at argezoeliakie@kabelnet.at. This is a German Celiac Web page: Open Original Shared Link with a discussion forum.

Open Original Shared Link

German Support Groups: Open Original Shared Link

UK: Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

mart Contributor

Hi Tracey. So sorry to hear Emma has been that sick. My 7 year old son has Celiac and is very thin too. How long has she been sick this way? When did you have to start tube feeding her? If you find out that she in fact has celiac disease it's important to look into the ingredients of what's going through that tube. Everything she consumes must be completely free of gluten, and every little thing must be checked. Hopefully the answer to her health issues will be as simple as removing gluten from her diet.

I will keep her (and you) in my prayers. Please let us know how she is feeling today.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,661
    • Most Online (within 30 mins)
      7,748

    CarlaP
    Newest Member
    CarlaP
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.