Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Looking For Allergy Specialist In Australia Or Nz. Help!


webbydu

Recommended Posts

webbydu Rookie

My 12 yr old daughter was recently diagnosed by biopsy with celiac. She has presented (in july 08) with joint and muscle pain, along with stomach pains. She does not get diarrhea, or constipation. She has all her life been plagued with strange allergic reactions to 'something' and we have never been able to sort it out. We know that she is allergic to all antibiotics (not from skin tests - which have her as all good, but when she takes them orally). She also can eat different foods and have a reaction (usually itchy and most often urticaria.)

She had a reaction to condi's crystals in school the other day. for example.

Another example. today we got a call from school to pick her up (we both work) as she had a reaction to either ... some kid in the class bought in muffins ... and she didn't have any but everyone else did ... or perhpas it was the gluten-free rice crackers (signature range) brand that says it has 0 gluten in (she had just eaten them for morning tea, prior to the itchy episode). Muffins were shared just after morning tea - also just prior to the itchy episode. She assures me she did not touch the muffins, let alone taste them.

We are under the care of Starship (our childrens hospital) and while they do their best, we still don't have a diagnosis and she is getting worse - even after being on a gluten-free diet for 3-4 weeks (we only just got a diagnosis.) Her endoscopy showed that her celiac damage was minor. Not enough to explain the absolute misery she is in with her pain and stiffness.

We will go to the ends of the earth to help her. What resources are there in NZ or Australia (I am thinking about really good residential allergy clinics, ... what ever .... that can help us get a diagosis.)

Thanks

Liz in Auckland.

I appear to be managing but inside I'm quietly having a complete nervous breakdown -- when I get a chance ... :-)


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
My 12 yr old daughter was recently diagnosed by biopsy with celiac. She has presented (in july 08) with joint and muscle pain, along with stomach pains. She does not get diarrhea, or constipation. She has all her life been plagued with strange allergic reactions to 'something' and we have never been able to sort it out. We know that she is allergic to all antibiotics (not from skin tests - which have her as all good, but when she takes them orally). She also can eat different foods and have a reaction (usually itchy and most often urticaria.)

She had a reaction to condi's crystals in school the other day. for example.

Another example. today we got a call from school to pick her up (we both work) as she had a reaction to either ... some kid in the class bought in muffins ... and she didn't have any but everyone else did ... or perhpas it was the gluten-free rice crackers (signature range) brand that says it has 0 gluten in (she had just eaten them for morning tea, prior to the itchy episode). Muffins were shared just after morning tea - also just prior to the itchy episode. She assures me she did not touch the muffins, let alone taste them.

We are under the care of Starship (our childrens hospital) and while they do their best, we still don't have a diagnosis and she is getting worse - even after being on a gluten-free diet for 3-4 weeks (we only just got a diagnosis.) Her endoscopy showed that her celiac damage was minor. Not enough to explain the absolute misery she is in with her pain and stiffness.

We will go to the ends of the earth to help her. What resources are there in NZ or Australia (I am thinking about really good residential allergy clinics, ... what ever .... that can help us get a diagosis.)

Thanks

Liz in Auckland.

I appear to be managing but inside I'm quietly having a complete nervous breakdown -- when I get a chance ... :-)

Hi Liz, and welcome to the forum. I am sorry that your daughter is suffering so much. Pain and stiffness often seems to go along with celiac, usually initially diagnosed as fibromyalgia in adults before the celiac is identified. I did not realize I was a celiac until I developed rheumatoid arthritis.

It is also very common to have food allergies/intolerances other than gluten; once you get rid of the gluten which has been overriding everything else, the other allergies/intolerances seem to pop up. I developed hives and bright red itchy rash after going gluten free. Turns out to be an intolerance of soy, which is often substituted for gluten in gluten free foods. You will find people on here who are intolerant of corn, nightshade family plants (potato, tomato, green pepper, eggplant) eggs, and the most common one lactose/casein, i.e. dairy products. Some cannot eat any dairy, some can manage yogurt and some cheeses--these are the lactose intolerant folks. It would be worth putting your daughter on an elimination diet, cutting out all the foods that cause the most common intolerances, and feeding her a very simple diet of chicken, fish, rice, fruits and vegetables. If she improves on this then you can try adding in the other foods one at a time for several days and see how she manages. and which ones cause problems. Often the reactions are not immediate with food intolerances, especially as you say she does not have digestive issues.

Now to get back to your question about an allergist. Unfortunately, New Zealand is not well served with allergists. I assume you have asked the docs at Starship for recommendations. My husband was lucky enough to have been treated by Brian Broome here in Ch

amber Explorer
My 12 yr old daughter was recently diagnosed by biopsy with celiac. She has presented (in july 08) with joint and muscle pain, along with stomach pains. She does not get diarrhea, or constipation. She has all her life been plagued with strange allergic reactions to 'something' and we have never been able to sort it out. We know that she is allergic to all antibiotics (not from skin tests - which have her as all good, but when she takes them orally). She also can eat different foods and have a reaction (usually itchy and most often urticaria.)

She had a reaction to condi's crystals in school the other day. for example.

Another example. today we got a call from school to pick her up (we both work) as she had a reaction to either ... some kid in the class bought in muffins ... and she didn't have any but everyone else did ... or perhpas it was the gluten-free rice crackers (signature range) brand that says it has 0 gluten in (she had just eaten them for morning tea, prior to the itchy episode). Muffins were shared just after morning tea - also just prior to the itchy episode. She assures me she did not touch the muffins, let alone taste them.

We are under the care of Starship (our childrens hospital) and while they do their best, we still don't have a diagnosis and she is getting worse - even after being on a gluten-free diet for 3-4 weeks (we only just got a diagnosis.) Her endoscopy showed that her celiac damage was minor. Not enough to explain the absolute misery she is in with her pain and stiffness.

We will go to the ends of the earth to help her. What resources are there in NZ or Australia (I am thinking about really good residential allergy clinics, ... what ever .... that can help us get a diagosis.)

Thanks

Liz in Auckland.

I appear to be managing but inside I'm quietly having a complete nervous breakdown -- when I get a chance ... :-)

I too have a 12 year old coeliac daugter.

It sounds like she could be allergic to something else besides gluten. There are allergy specialists in Australia and I would assume in NZ too. Skin conditions are not usually a reaction to gluten except in adults who can have dermatitis herpetiformus which resolves once on the diet.

As far as cross contamination goes we do have a seperate toaster and margarine but I do not have seperate cooking utensils, plates, etc. I do prefer not to cook her pasta in the same pot we use as sometimes pasta can stick to the pan. We are not a gluten free household but I do have a self especially for her food.

There is an Australian version of 'Gluten free for dummies' which has recently been released. It is a very good book for explaining all about the gluten-free diet. It should be available in NZ. I also recommend you join your NZ coeliac society for more advice and support.

Good luck in finding an allergy specialist there.

webbydu Rookie

Thanks. I will investigate further. Any Australian's out there, if you can recommend good allergy/fibromyalgia doctors, please let me know.

Liz

Gentleheart Enthusiast
Thanks. I will investigate further. Any Australian's out there, if you can recommend good allergy/fibromyalgia doctors, please let me know.

Liz

I'm about as far from Australia as you can get. :) But what about Dr. Rodney Ford? He's written several great books sold on this site and you can see him in person on a couple of U Tube entries. Maybe he's gotten too famous to still be taking patients. But from what I've read in his books, he seems to really know about allergies in children and especially gluten.

Mysh Rookie

Liz, I'm not sure if this is totally left of centre from what you are looking for but have you heard of NAET therapy? I've used this for 5yr old ( not celiac) for help with some allergies (he was allergic to casien in milk). It's definitely one of those therapies that you look at and go "hmmm" but sometimes you are willing to try things that might not be considered conventional. I must stress that I don't know how it would go with a celiac diagnosis but here's a link anyway.

www.naet.com

There is a practitioner in NZ

Open Original Shared Link

webbydu Rookie

Interesting that you post this. We have been attending acupuncture (4 sesssions so far) and I note that today has been a good day. There is an improvement. I am also planning on seeing a practioner that works with acupressure meridians - but will look at this link that you have provided.

Will keep you updated.

thanks and any more thoughts from anyone appreciated.

Liz


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



Celiac.com Sponsor (A8-M):



georgie Enthusiast

Hi Liz, Is this link any help ? Open Original Shared Link I have found Compounding Chemists to be very helpful people finding a Dr that uses bio identical and natural remedies. These Drs can order saliva testing for allergies. Pathlabs in Melbourne is one of the largest saliva testing places in Oz but there may be some in NZ.

Your daughter is still in the early days of being gluten-free. Could she possibly still be getting trace amounts of gluten at home ? Is the whole family gluten-free now ? The cat and dog ? Did you throw away wooden chopping boards, toaster, check soaps, shampoos etc ? Check all processed food - even if it says gluten-free on the front as I know I react to trace amounts of wheat - even glucose made from wheat - so I wonder if she is having small of amounts of gluten from somewhere still ? Try to avoid all processed food while you are still learning the ropes. This is an excellent list of ingredients to avoid.

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

I would suspect the rice crackers from your first mail. What are the ingredients.... ?? If they have any imported ingredients ( ie soy sauce) then they may still contain gluten..despite what they say ...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...