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. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Reverse Osmosis (RO) Water

      I found out the hard way that water filters can have starch binders that bind the charcoal used in the filter. Grain starch or gluten can be present in the filter. I’ve been exposed and had reactions. Steam distilled water is safe. Not all places have the distilled gallon containers commonly sold, but smart water is steam distilled and has been safe s...
    2. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not s...
    3. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Water filters are a potential problem for Celiac Disease

      We really need to become more aware of this. When I first had my celiac diagnosis 5 years ago, I searched out all possible sources of gluten. I only recently became aware of filtered water being a potential source of gluten and other grain starch contamination. Gluten exposure in the past, for me, has brought upon distinct repeatable points of bodily pain...
    4. knitty kitty
      - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Pain in the right side of abdomen

      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly. A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly. It's very rare to have only one or two low vitamins in Celiac Disease. B vitamins are water soluble, so any excess is easily excreted...
    5. knitty kitty
      - knitty kitty replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      39

      Blood results

      I'm so glad your daughter got her B12 level checked at last!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,570
    • Most Online (within 30 mins)
      7,748
    Chanty
    Newest Member
    Chanty
    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

    • YoshiLuckyJackpotWinner888
      Reverse Osmosis (RO) Water

      By YoshiLuckyJackpotWinner888 · Posted

      I found out the hard way that water filters can have starch binders that bind the charcoal used in the filter.  Grain starch or gluten can be present in the filter. I’ve been exposed and had reactions.  Steam distilled water is safe.  Not all places have the distilled gallon containers commonly sold, but smart water is steam distilled and has been safe so far.
    • YoshiLuckyJackpotWinner888
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By YoshiLuckyJackpotWinner888 · Posted

      I was diagnosed celiac 5 years ago. I know for certain that casein, grains, beans, seeds, and some other famous lectin issue foods are problems for me. When I was newborn, I had a huge issue with intolerance to milk. Five years ago before my celiac diagnosis, I had Irish cheddar cheese sold by Kerrie and it felt like an explosion in my intestines. I’m not sure if the casein was worse or the naturally occurring cheese mold in aged cheddar did it. I am IgG sensitive to yeast. Casein, yeast, or mold in the cheese might have been part or equally bad.
    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      We really need to become more aware of this. When I first had my celiac diagnosis 5 years ago, I searched out all possible sources of gluten.  I only recently became aware of filtered water being a potential source of gluten and other grain starch contamination. Gluten exposure in the past, for me, has brought upon distinct repeatable points of bodily pain which I am now aware of. If I purposely expose myself to gluten, I seem to have antibodies attack certain areas of my body which cause this reaction within 30 minutes of exposure. I can tell rather quickly if I was exposed and it never happens, unless gluten is present. In the past 5 years since my diagnosis , I may have noticed occasional pains or odd sensations after drinking bottled water that was filtered.  It never made sense to me why this was happening.  A few months ago I was at a gas station and purchased a Gatorade filtered water bottle product. Within 30 minutes, I had pains associated with gluten exposure that I had not felt for years. I knew it had to be the water bottle contents because nothing else was consumed all day. This was a wake up call for me. I searched and found out a thread about water filters containing starch binders to bind charcoal, which is used commonly, and I found out that grains are potentially used for the starch source.  Gluten is in certain grains, and according to a study in the past two years, many grain proteins and casein from dairy can cross react with celiac. This Gatorade water bottle had water that was likely filtered with a filter that may have had actual gluten. I am also sensitive to the other cross reactive proteins from grains and casein, but the pains that day were distinct. I can absolutely tell the difference if I come into contact with corn or other grains. The reaction is different. My point is bottled water that has been filtered can potentially be exposing us, if they use starch binders from grain products. We have no real practical way of knowing what water filters may have inside of them, unless a law requires disclosure on the label. This is not only going to affect bottled water, but also all products that were made with filtered water. Since cross reactions to other grain proteins is now a real issue, simply stating  gluten free is not enough. How can you know if your store bought lemonade does not have filtered water with gluten or other grain protein contamination?  Did that kombacha you just drank happen to have filter contamination of corn and you suddenly feel a headache and odd chest pains? Distilled water may be the only safe bottled water. We can’t trust water filters until the law changes and requires processing plants to disclose these contaminants.  I don’t ever have a problem with distilled water as long as it was steam distilled.  Regular bottled water has set off noticeable sensations and pains over 5 years of observing these. The Gatorade water was the worst and most alarming.  Stay safe. 
    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly.  A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly.  It's very rare to have only one or two low vitamins in Celiac Disease.  B vitamins are water soluble, so any excess is easily excreted in urine.  Tingling in feet and hands is symptomatic of deficiencies in B vitamins like thiamine, Pyridoxine, and niacin. September 19 2025, "Your daughter needs to be checked for Vitamin B12 deficiency as soon as possible!   The nitrogen compounds in anesthesia can precipitate a B12 deficiency resulting in severe depression.  Please have her checked immediately! The nitrogen compounds in anesthesia (both gas and injected anesthesia) bind irrevocably with the Cobalt in Cobalamine Vitamin B12.  This precipitates a B12 deficiency in people with a low B12 level.  This can happen immediately, within days or weeks or months depending on B12 stores.    I've had medical procedures that required anesthesia and been struck down by deep dark depression and uncontrollable crying immediately, and also within weeks of the exposure.  My doctor put me on antidepressants which only made things worse.  Antidepressants don't correct a vitamin deficiency.   Please have her checked for B12 deficiency as soon as possible!"  
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      I'm so glad your daughter got her B12 level checked at last!  
×
×
  • 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.