[webbydu]

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 ... :-)

[mushroom]

webbydu, on Feb 20 2009, 08:28 PM, said:

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 ChÇh, but unfortunately he has retired from his practice and is now involved in research in Auckland. If you could find some way of contacting him, he might be able to help you because pediatrics was his specialty. He might at least be able to make a recommendation for you. Otherwise you might have to go to Oz if nothing else works for your daughter. But I would definitely try the elimination diet first.

Another thing to keep in mind is that some celiacs are more sensitive than others. Your daughter may be one of the more sensitive ones when in the presence of gluten. Do you keep her food separate from yours or have you made your house gluten free? Things like peanut butter, butter, jams, etc., can be contaminated if someone sticks a knife in that has been in contact with gluten. You fill find good advice on here about how to eliminate gluten in your house from things like wooden spoons, toasters, teflon pans, plastic containers, etc. Most of these need to be replaced if the house is gluten free, or buy new ones that are reserved for your daughter's food. Keep a separate cupboard for her food and a separate shelf in the fridge. Give her her own cutting board. Give us some more information and we can help you better.

Good luck, and keep us posted on how things work out. It is really stressful at first, but things do get easier when you get things under control.

Neroli

[amber]

webbydu, on Feb 19 2009, 11:28 PM, said:

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]

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

[Gentleheart]

webbydu, on Feb 20 2009, 02:18 PM, said:

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]

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

http://www.naet.com/subscribers/doctorResu..._records=Search

[webbydu]

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

[georgie]

Hi Liz, Is this link any help ? http://www.naturalho...etherapy.co.nz/ 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.

http://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 ...