Slow progress

[stephbg]

My GP is lovely, but all too frequently clueless. Disturbingly so sometimes.



This afternoon I sat through over an hour of loud raucous children in the waiting room* in the attempt to find out with whom I should consult about my suspected salicylate (or other) food sensitivities. Dietician? Nutritionist? Witch Doctor? Doctor Who? Other?

One of my questions was whether I had to go to the fuss of the complete elimination diet which even involves avoiding anything smelly ("this looks pretty good," said my doctor on skimming the internet printout I'd brought along), or could focus on just food-based salicylate reduction, and how to glutamates fit in etc etc. I wanted to "consult a medical professional" before doing any experiments, but wasn't having much luck.

He perked up. "Gluten allergy? We can test for that." Not gluten allergy, I said with mild despair, glutamate intolerance. "I'd probably have noticed if I was allergic to gluten".

Eventually I extracted the information that "a dietician probably wasn't suitable," and in the subsequent vacuum I tossed in the name of a Nutrition Review Service who had a sign at a local shopping centre, run by a Doctor Igor. What's not to love?

Amazingly, my GP had heard of Dr Igor, but he is "just a GP with a special interest in nutrition" apparently. Sounded perfect to me, so I took charge and said right, I'll go see him then. No referral required.

Total new information**: 0
Total charge: $60

I'm easily frightened away from new medical investigations when I hit this kind of block. I think I'll keep doing what I'm doing for the next couple of weeks at least and get the next round of other specialist appointments out of the way. I'll buy a book, learn to cook lentils and maybe call Consumer Info for a couple of particular products. Then I'll make the call. Maybe.

I've bought salt toothpaste and plain soap, but I'm not giving up my special shampoo and conditioner *stamps feet obstinately*. Hopefully I'll be able to tolerate the chlorine at the pool.

(*) The mother was obviously the sick one and she made multiple attempts to keep the girls still and quiet but lacked the Command Voice for it. The kids were so damn energetic and she was just wilting. Poor possum.

(**) OK, he took my blood pressure which was even higher than last time, but it was the second time he'd taken my BP immediately after pointing out that my next pap smear was due soon.

Comments

[chaosmanor.livejournal.com]

I have been seeing my GP a lot recently, what with my brain exploding and all. I usually see him often because my lungs are ghastly, so it's a change for both of us. He stopped taking my blood pressure after we had the discussion about how it didn't matter if I had high blood pressure (I tend to, as a compensation for loss of lung function) because he couldn't give me medication for it (contraindicated for asthmatics because it kills them, and besides, if my heart was beating really hard to try and push my poorly oxygenated blood around faster, then forcing it to slow down was stoopid). That was when he announced that it wasn't going to be coronary disease that killed me anyway, it was going to be a chest infection, and I wasn't to worry about that. Cheerful bastard.

I went and saw an allergy specialist once, and he was Not Helpful. Coincidentally, I received an appointment notice in the mail today for an appointment notice for next week, with the new Drug Hypersensitivity Immunologist at RPH. This specialist will be Helpful, because I insist.

[chaosmanor.livejournal.com]

excuse the multiple appointment notices, I have been doing line edits, and my brain, it is of the exploding.

[stephbg.livejournal.com]

You are excused. After a while all the appointments blur together anyway :-)

[splanky.livejournal.com]

I don't know if the Nutrition Review Clinic will be that helpful. I've been to see them (not Dr Igor Tabrizian - he's really hard to get in to). My current GP also consults through there and he also sees nutritional patients through Health Quest, which is in Melville. You might find a shorter waiting time there, particularly if you see Dr Hugh Derham, who I see, rather than Dr Tabrizian.

However, the focus of the nutritional medicine they do seems to be on mineral balance. You will be asked to have a hair mineral analysis before you go. They will look at the level of toxic metals, such as copper, and whether they might be blocking the absorbtion of useful elements, such as zinc. Not that this is a bad thing, it's all applied biochemistry, and I figure if your internal chemistry is right that can only Be Good.

I don't know if they look at food intolerances. I suspect not. It has never been mentioned to me as a possible cause of the problems I have had. I have an appointment with my GP on the 12th of Feb, and I can ask then if you like.

If you would like more information on where to go next I could see if my sister can talk to you. She has done a lot of research on the intolerances, she's done the diet, and she moderates the perth failsafe mailing list. If anyone would have an idea, she would.

[stephbg.livejournal.com]

I know I rejected the offer before but it looks like community support is the way to go. What I really need is advice about the properties of particular products that are on the "porbably OK, but check local manufacture" list.

My GP said that Dr Igor has written several books. I'm not adverse to a mineral analysis, although my poor old hair has been coloured and permed for decades. Most of it, anyway.

[splanky.livejournal.com]

Ok, just talked to my sister again. I am asking her a lot about things like this at the moment as I'm planning on doing the full elimination diet to see if it helps with my depression and insomnia.

She suggested looking at the Dieticians Association of Australia website if you want to go the dietician route. You can search on the area of practice of the dietician, and one of the options is Allergy and Food Sensitivity.

For local support she suggests joining the Yahoo group Failsafe 2, or the Perth failsafe mailing list. The Perth one is very low traffic, but there would be local people who could tell you where to find ingredients etc. The Failsafe 2 list would be able to answer general questions. She told me to join it too. She's pretty demanding, my sister :)

She said the Fed Up website has a product alert section, which tells you what is ok: http://www.fedupwithfoodadditives.info/information/updates.htm

Also you can order lists from Royal Prince Alfred Hospital website with shopping lists and more info - http://www.cs.nsw.gov.au/rpa/allergy/. I have some that my sis got for me, you are welcome to borrow and photocopy.

The Nutrition Review Service has a website which tells you where to order the books: http://www.nutritionreviewservice.com.au/. It's from the pharmacy I use, and I can confirm they do have a lot of them there. The Nutrition Review Service South they talk about is the same as Health Quest, which is what I mentioned before.

[(Anonymous)]

Splanky's sister here...

Some of this info may be of help - take on board what appeals and ignore the rest.

Avoidance of smelly things... perhaps keep a diary of when you are exposed to them and see if there is any correlation between how you feel and the exposure. Bear in mind that you can have delayed reactions of a few days. Speed of reaction to the various additives/food chemicals varies. Off the top of my head sailcylates and food colouring is pretty quick. Amines tend to be more delayed. Not sure about speed of reaction to smelly things and glutamates. From my personal experience, I get migraines from some smelly things and they tend to happen quite quickly.

As to community discussion groups etc... There are lots of 'failsafe' yahoo groups out there. Personally I found the Failsafe2 one to contain the most knowledgable people. Found it a good place to post queries about specific products/ingredients.

Royal Prince Alfred have published a book, which you can flick through/purchase from Dymocks. "Friendly Foods" is the title. Contains some info and also recipes and a shopping list of products that should be OK. From my observation, what Failsafe/Sue Dengate recommends can be a little more restrictive than RPAH as it suggests avoidance of some things that 'extra sensitive' people react to. eg Our dieticain said normal toothpaste should be OK for us, but the kids reacted to the salicylates in the mint flavouring.

The booklets that Kylie has are a bit of a 'bible', and are probably what a dieticain would give to you. They contain a)lists of various foods and their concentration of food chemicals b)shopping list suggesting 'safe' products c) instructions on how to do the elimination and challenges. They are pretty cheap to purchase from RPAH.

[stephbg.livejournal.com]

Thanks, much appreciated. I'm on information overload right now, but I'm slowly getting organised. I've been carrying a few of the major tables around with me (I found FedUp very early on), but the detailed discussion of particular dates of particular sizes of particular products with this or that unlisted antioxidant are a bit overwhelming...

[(Anonymous)]

Happy to help. I'm no expert, but certainly had to find out a lot of stuff in relation to my family. Feel free to contact me via Splanky if you need anything later down the track.

FedUp is a little out of date (I believe it is being re-written at the moment). If you like Fetta cheese ... FedUp says that it is OK, however that info was apparently an error. *sob*