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

By Guest tracey and emma
in Parents, Friends and Loved Ones of Celiacs

Recommended Posts

Guest tracey and emma
Guest tracey and emma
Posted

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
lizzy
Posted

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
jenvan
Posted

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
Guest tracey and emma
Posted

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
jenvan
Posted

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
mart
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rejoicephd
      - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I had actually forgot about the stretch of time that I was on antibiotics for acne. The more I think back on it, I was on antibiotics for a very good chunk of my childhood and into teenage years for a range of issues.
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I've heard RO water is bad, too. Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too. I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.
    3. Yaya
      - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

      Scott. Thank you for your reply. I'm still having symptoms, but significantly better. I will go back to batch cooking and freezing vegetables. I have had success with Pict Sweet frozen, single item (not mixed) vegetables. My Kroger carries very little Pict Sweet variety. Regards, Yaya
    4. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I am hesitant to post this as I have seen many people here recommending RO water. With that said, I want to share my experience and how RO water now impacts me. Three or four years ago a local store installed a RO water refill station. I had been buying gallons of distilled and spring water prior to that. I switched over to using the RO water refill station...
    5. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      My neighbor's mom was diagnosed with celiac disease 16 years ago. She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals. This evening she brought over 2 slices of Papa Murphy's gluten-free pizza. It looks to be topped with chicken and spinach. I asked, "aren't you concerned with cross contamination...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,445
    • Most Online (within 30 mins)
      7,748
    JamesM
    Newest Member
    JamesM
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Known1 · Posted

      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      Great Value Veggies cannot be trusted.

      By Scott Adams · Posted

      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.