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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

      I take Niacin, bilberry, Omega threes, zinc, selenium, and Vitamins C and A for eye health, skin health and digestive tract health. The skin, digestive system and eyes are all derived from basically the same sort of cells. Niacin is extremely important to keeping these tissues healthy. Niacin has be shown to prevent cataracts and improve eye...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

      Thankyou. I have cyclosporine 0.05% OP single use drops and Erythromycin ophth ointment 3.5 Gmail for eyes. Dermatologist gave Pimecrolimus cream 1% and Clobetasol Propoonate USP 0.05% it doesn't help at all.i do see a difference taking Yarrow Pom but its too expensive!
    3. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

      I've added NAC, N-Acetyl Cysteine; "crucial for replenishing glutathione—the body's master antioxidant." I used Clear Eyes 1% NAC lubricating eye drops for several years until the FDA forced them off the market. In 2015 I had cataracts in bofh eyes. In 2019 my left eye was clear, right eye was improved. They are back now. I discovered new companies w...
    4. Known1
      - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

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

      When the pizza was dropped off she told me it had a Udi's certified gluten-free crust. Even so, I am trying to play things as safe as possible for at least the next 6-months. With that said, I returned the two slices to my neighbor and asked her to thank her mom for the pizza. 😊 I will likely bump into my neighbor's mom sometime next week. She sh...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

      Thankyou.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,454
    • Most Online (within 30 mins)
      7,748
    rockylanders
    Newest Member
    rockylanders
    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)

  • Upcoming Events

  • Posts

    • knitty kitty
      Related issues

      By knitty kitty · Posted

      I take Niacin, bilberry, Omega threes, zinc, selenium, and Vitamins C and A for eye health, skin health and digestive tract health.  The skin, digestive system and eyes are all derived from basically the same sort of cells.  Niacin is extremely important to keeping these tissues healthy.    Niacin has be shown to prevent cataracts and improve eye health.  Niacin is turned into tryptophan which is necessary to heal the digestive tract.  Tryptophan is used to make Serotonin, a very important neurotransmitter in mood regulation.  Those with Niacin insufficiency become irritable and easily upset, angry, even. Niacin improves skin health.  The flushing of Niacin opens the smallest blood vessels in the skin so that waste products can more easily be removed.  I have Dermatitis Herpetiformis.  Niacin helps drain away those built up antibodies in the blisters and improve skin health.   Bilberry contains lutein and zeaxanthin and other anthocyanins,  potent antioxidants that help protect the eyes from macular degeneration and cataracts.  Bilberry has sGLT1 and GLUT2 which help to lower glucose levels by removing excess glucose from the bloodstream.  High blood glucose levels are bad for eye health.   Omega Threes are important to provide relief in dry eyes.  You are familiar with how oil floats on water.  Same thing happens with eyes.  Omega threes provide the oily layer that protects water from evaporating from the eyes causing dry eyes.  Omega threes in olive oil, sunflower seed oil,  and flaxseed oils will help improve dry eyes. Vitamin A and Riboflavin B2 are important in this function as well.   None of the medications I was given improved my dry eyes.  I increased my Omega threes and Vitamin A, and had improvement very quickly. Selenium and zinc are important in skin and eye barrier functions, too, and are important to preventing infections. When I take 100 mg of Niacin every three hours (but not more than 500 mg/day), my skin and eye health improves.  If one is deficient in Niacin, the flushing effects may be uncomfortable, but ride it out, continue taking Niacin and the flushing goes away as niacin stores inside cells are repleted.  When flushing, don't scratch!  Use pressure applied over a bigger area above the itch.  I wrap up in a towel or blanket to create the counter pressure.  The flushing goes away the longer one takes Niacin.  Don't use Niacinamide (the non flushing form of Niacin).   Other vitamins that improve eye health are Vitamin E and Pyridoxine B6 and Thiamine B1.  Most Vitamin E sold is derived from wheat germ, so find another source of Vitamin E.  I used Evening Primrose oil, also a source of healthy Omega threes and helps with female problems like perimenopause  and menopause symptoms. Do be aware that antifungals and antibiotics (as are frequently prescribed) destroy Thiamine.  Immunosuppressive drugs can suppress production of tTg antibodies.  Supplementing with thiamine above the RDA is safe and nontoxic.  RDA were set as the lowest amount to prevent illness.  Optimal health is seen in higher amounts.   Do talk to your doctor and dietician about supplementing essential nutrients.   References: https://pubmed.ncbi.nlm.nih.gov/39183990/ https://pubmed.ncbi.nlm.nih.gov/41156490/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7602486/
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Thankyou. I have cyclosporine 0.05% OP single use drops and Erythromycin ophth ointment 3.5 Gmail for eyes. Dermatologist gave Pimecrolimus cream 1% and Clobetasol Propoonate USP 0.05% it doesn't help at all.i do see a difference taking Yarrow Pom but its too expensive!
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      I've added NAC, N-Acetyl Cysteine; "crucial for replenishing glutathione—the body's master antioxidant." I used Clear Eyes 1% NAC lubricating eye drops for several years until the FDA forced them off the market.  In 2015 I had cataracts in bofh eyes.  In 2019 my left eye was clear, right eye was improved.  They are back now.  I discovered new companies with the drops at higher NAC but went with 500 mg NAC capsules.  Spread the cheer 🤓. My impression so far is the NAC is doing good.  Best with meal.
    • Known1
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Known1 · Posted

      When the pizza was dropped off she told me it had a Udi's certified gluten-free crust.  Even so, I am trying to play things as safe as possible for at least the next 6-months.  With that said, I returned the two slices to my neighbor and asked her to thank her mom for the pizza.  😊  I will likely bump into my neighbor's mom sometime next week.  She shuttles my neighbor's son, a freshman, to and from high school.  As mentioned, she is very kind so I am sure she will understand.  Heck, at least it went back to her family members and not in the trash.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Thankyou.
×
×
  • 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.