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. trents
      - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      6

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      What is a Michelin star restaurant?
    2. cristiana
      - cristiana replied to colinukcoeliac's topic in Gluten-Free Restaurants
      6

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my TTG levels to settle to normal levels in blood tests. I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened...
    3. RMJ
      - RMJ replied to colinukcoeliac's topic in Gluten-Free Restaurants
      6

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Hopefully @Cristiana will see this question, as she also lives in the UK.
    4. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      Pain in the right side of abdomen

      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2. "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing...
    5. trents
      - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      6

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,480
    • Most Online (within 30 mins)
      7,748
    radster47
    Newest Member
    radster47
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • trents
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By trents · Posted

      What is a Michelin star restaurant? 
    • cristiana
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By cristiana · Posted

      Hi Colin I share your frustration. My coeliac disease was diagnosed in 2013 and it took some years for my  TTG levels to settle to normal levels in  blood tests.  I had to make a few significant changes at home to make sure our house was as gluten free as possible (I share a house with gluten eaters) but time and time again I found I was glutened (or nearly glutened whilst eating out  - like regular bread being served with a gluten-free meal ).  Even eating in chains that Coeliac UK were recommending as safe for coeliacs.  So I gave up eating in restaurants for a while.  My blood tests normalised.  But here's the thing:  the lowest my TTG readings ever got to were 4.5 (10  and under being my local lab's normal levels) and now that I am eating out again more regularly, they've gone up to 10 again.  I am quite convinced this gluten is coming from exposure whilst eating out.  Small levels, that don't make me violently sick, but might give me a mild stomach upset.  My next coeliac blood review is in September and I mean to give up eating out a few months before to see if that helps my blood results get back on track. It seems to me that there are few restaurants which really 'get it' - and a lot of restaurants that don't 'get it' at all.  I've found one restaurant in Somerset and a hotel in East Sussex where they really know what they are doing.    The restaurant in Somerset hardly uses flour in any of their dishes; the hotel in East Sussex takes in trainees from the local college, so they are teaching best standards.   But it has taken a lot of searching and trial and effort on my part to find these two places.  There are certainly others in the UK, but it seems to me the only real way to find them is trial and error, or perhaps from the personal recommendation of other strict coeliacs (Incidentally, my coeliac hairdresser tells me that if a Michelin star restaurant has to have a separate food preparation so she has never been glutened in one - I can't say I've ever eaten in one!) For the rest, I think we just have to accept that gluten may be in the air in kitchens, if not on the surfaces, and there will always be some level of risk wherever one dines, unless the restaurant cooks exclusively gluten free dishes. Cristiana  
    • RMJ
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By RMJ · Posted

      Hopefully @Cristiana will see this question, as she also lives in the UK.
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Theresa2407, My Non-Alcoholic Fatty Liver Disease (NAFD), now called Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD), cleared up, resolved, after supplementing with Thiamine B1 and Riboflavin B2.  "Specifically, higher intakes of vitamin B1 and vitamin B2 were negatively associated with the risk of NAFLD. Consequently, providing adequate levels of Vitamin B1 and Vitamin B2 in the daily diets of postmenopausal women could potentially serve as a preventive measure against NAFLD." Association between dietary intakes of B vitamins and nonalcoholic fatty liver disease in postmenopausal women: a cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC10621796/ High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/
    • trents
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By trents · Posted

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
×
×
  • 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.