Jump to content
  • 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):

Introduction & Hello


wdavie

Recommended Posts

wdavie Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest jhmom

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

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • 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. - glucel replied to glucel's topic in Super Sensitive People
      16

      iron digestibility

    2. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    3. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

    4. - knitty kitty replied to Aileen Cregan's topic in Related Issues & Disorders
      5

      Coeliac And Cardio Vascular Disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

    michelinagiggles
    Newest Member
    michelinagiggles
    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

    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
    • gregoryC
×
×
  • Create New...