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Introduction & Hello

wdavie

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wdavie Newbie
wdavie
Posted

Hi, My name is Wendy. I have a 9 year old daughter, Grace, who was diagnosed in September last year with Celiac Disease after bloods and biopsy both returned strong positive with alot of intestinal damage.

We live in New Zealand, and I am looking forward to learning from other parents of celiac kids. All our family have been tested and So far Grace is the only Celiac out of 5 of us. She is coping well with the change in diet and thriving wonderfully. gone from 25% in height to 50% + in 6 months.

Look forward to getting to know you all.

Wendy

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Guest jhmom
Guest jhmom
Posted

Hi Wendy welcome to the board :) There are alot of great people here!

My 8 year-old daughter and I are both Celiac's and have been gluten-free since Sept 03. At first my daughter struggled with gluten-free diet and would cheat while at school but the last time she did it hit her pretty hard, she woke up the next morning with a fever, diarrhea, nausea and abdominal pain, it was awful! I sat her down and explained this disease to her and she has not cheated since :D

Again welcome to the board!

mannabbe Newbie
mannabbe
Posted

Hi Wendy,

My daughter (age 7) and I have been gluten-free for 3 years. Our biggest news lately is that one of my daughter's classmates was diagnosed with celiac - two celiac kids in a class of 11!

Celiac.com has just posted the summary of a new UK study that found celiac prevelance to be 1% in 7 year children in the UK. I know think that having celiac budies for our children is possible for all of us! Ironically, my daughter's friend had virtually no symptoms (just mild tummy aches), and his mom pressed for a celiac blood test just because she knew we had it and was, like so many of us, just very worried about her child. When will doctors realize that everyone should be tested, regardless of symptoms? sigh.

Laurie

flagbabyds Collaborator
flagbabyds
Posted

I was diagnosed with celiac disease when I was 20 months and last week was my Diagnosis day of 12 years :) because I was so little I don't remember what gluten tastes like, which is a plus for me :) my Celiac friends say. 12 years ago the way to diagnosis it was biopsy showing intestional damage and then rebiopsy 1 year later to show improvment and the a challenge biopsy(eat wheat for 2 months and then another biopsy to show more damage) my parents refused to do the 3rd biopsy challenge. They didn't want to make me so sick again just to tell them that they were right. If anyone needs help with helping their children with the diet I can help...

MOlly

wdavie Newbie
wdavie
Posted
  • Author

What a great post Molly, Thankyou.

We have decided that Grace wont have another biopsy for quiet sometime as the first one was so obviously positive of Intestinal damage. She will have bloods retested in 12 months (18months after diagnosis).

I am lucky that she was so easily diagnoses and we don't need to have continual testing wtc.

I will be sure to ask you any questions Molly, it is a wonderful offer from you and so nice to have the opinion and perspective of a younger celiac.

Wendy :D

wclemens Newbie
wclemens
Posted

Wendy, it sounds as though you and Grace are taking the diagnosis in a very positive way. Feeling healthy helps us feel more positive as well, I believe, so I am happy that you found this message board and are now part of our group.

Molly, I am so thrilled to see your offer of helping other Celiac youngsters with their diets! That is such a nice offer from you. My grandson (10 months) and I are the only diagnosed Celiacs in our family, but we are in the process of having other family members tested right now, so time will tell.

Best wishes to you both. Welda

Kim Explorer
Kim
Posted

Hi Wendy. There is a good book out for Children on Celiac, which you may not be aware of:

Eating Gluten Free with Emily, by Bonnie Kruszka (actually available in the bookstore of this site, and I would imagine available in bookstores near you?) which I thought was very good for kids.

Good luck.

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

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      Finding gluten free ingredients

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