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

From New Zealand

fourkiwis

Recommended Posts

fourkiwis Newbie
fourkiwis
Posted

Hi everyone , I am new here and have two sons 6.5, and 4.5. My husband and the 6.5 yr old are both diagnosed celiacs, we have a forum going as well in NZ, but since I recieve emails from this site I thought I would come on here and talk to other parents and partners who are dealing with this. The diet is going really well for Matty (6.5 yr old), he was diagnosed in November 2005, but we always knew he had celiacs by his behaviour and lack of weight gain. Just getting a diagnosis has been tough though, we were first told at the hospital that we needed a child psychologist! and after putting him back on gluten last year he finally developed all of the stomach problems that led to a positive diagnosis.

There seems to finally be some research being done on the gluten adn brain development connection and if any of you have timie, have a look at a nz doctors website www.drgluten.co.nz, he is the first doctor here to actually look into the gluten intolerance/ allergy as well as celiac disease, he is also doing research on the brain connection as well ie: austism and aspergers connection.

Anyway, it would be nice to talk to some other parents and to see how everyone copes with this and what products are available to you guys, we have a few major companies now changing products or developing new ones to suit with celiacs, which is great to see.

By the way, Matty has since gained 3 -4 kilos (dont know what that is in pounds sorry), and grown about 4-5 cm since November

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

Celiac.com Sponsor (A8-M):


Kaycee Collaborator
Kaycee
Posted

Hi and I am a kiwi too. Fortunately it is me with coeliac, and none of my children.

It is nice to see a fellow nzer on here. At times it feels I am the only one from here from this side of the world.

I have just come back from a couple of weeks in Waimate, and have been so surprised how many people have coeliac down there, and I didn't have to explain to anybody what it was. Whereas, here home In Northland, most people say what is that?

fourkiwis Newbie
fourkiwis
Posted
  • Author

Hi Kaycee, do you get onto trademe as well? in the messageboard then recipe section there is an extensive gluten free thread going - have a look in there when you can. How many children do you have? and what ages are they? My youngest at this stage doesnt have symptoms - he has been tested as he was very low in iron for years and is a bit dairy intolerant (cant have straight milk), but he isnt showing any other signs yet! Its amazing how subtle this intolerance can be, we know of many people that have celiacs and they all have differing symptoms!

Kaycee Collaborator
Kaycee
Posted

I will look in there, next.

I have four sons, between the ages of 25 and 16. The younger two have been tested, and their results came back negative. Because they have been tested negative, does that mean they can still get it in the future, not sure about that one.The two older ones, in Sydney have not yet got around to doing the tests, I will have to nag them, so I can't say whether they have it or not. I read somewhere that coeliacs can have a short stature, and that would fit my oldest, who is on 5 foot seven, whereas, the others are all about 6 feet tall.

I was only diagnosed in February this year, at 48, on valentines day. In some ways it is still all new, and in others I feel I should be doing better than what I am. Getting to the stage where I am wondering whether there are other issues as well.

Thanks for your reply.

Cathy

fourkiwis Newbie
fourkiwis
Posted
  • Author

Hi cathy, yep you can develop celiac at any time in your life, studies show that people tend to develop it after a stressful time in their life - like the stressful time triggers it. It would be hard to say if any of your children have it, but since you have asked them to get tested then it would be up to them now and I suppose none of them have any health problems that they are concerned about ? The problem with celiacs is that it can appear as many health problems and not many people actually suffer from 'classic' symptoms - which I guess you can tell by reading the threads here. My husband is just under 6 foot and he has possibly had it all his life - he was about 65kgs when I met him though and couldnt put on any weight! He also discovered he was dairy intolerant after being gluten-free for about 1-2 years and still having some symptoms - so have a look into that one, they do seem to go hand in hand for alot of celiacs.

Have a look on that website I mentioned and find me in the recipes to chat some more

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.