Wednesday, June 23, 2010

Health update

Well - it is has been a really busy week healthwise. Have seen 3 doctors over the past week, and all with different I wonder how I can keep up sometimes.

Okay so to drag you all back to last Wednesday, I saw my liver specialist, and I am not responding to the medication the way they thought I should and my liver results have not been they have put me on other immune suppressants and still have me on steroids. They have apparently also referred my case to the head of the Auckland University Med school to look into ( I think the head of gastroenterology) as he said I am 'odd and unusual'......nice!!!!

I then saw my GP yesterday, which was fine, both Si and I went and it was in part to discuss if we can look at children in the future, that is still a bit uncertain with all of the meds etc, but he would like to refer me to a fertility specialist if we are going to go down that road as apparently I am old.....LOL.

Then yesterday I also saw the dermatologist who had taken a huge hunk out of my arm a couple of weeks ago and biopsed it.....and apparently although I tested negative via a blood test for Coeliac's disease the biopsy result came back as a very strong positive to Dermatitis Herpetiformis which is very closley linked with gluten intolerance. There is also a connection between that and Auto-Immune Liver I have been working out how I am going to manage a Gluten Free diet and a WLS surgery diet, and it shouldn't be too hard, and I got some ideas from Zola (the nurtitionist at my surgeons office).

Basically to me I am at the point that if I follow this diet now, and get my rash and liver under control, it will mean that I can most likely come off the steroids and long term may also mean that I don't need the immune suppressants, which would be fabulous. It also might mean that I can finally break the 100 kgs barrier and lose some more weight, although that has crept up over hte last week with the new combination of drugs and is now hovering around 108 kgs.......if it gets to 110 I will freak right out!!!!!

In talking with Zola today we talked about how post op there seems to be two types of people, ones that embrace the new diets with flair and ease and see food as a fuel and adapt easily......and then there are people like me, who have a relationship with food, and I have to enjoy what I am eating, and I can't have the same thing day in and day out.....just doesn't do it for me. It is an addiction, and I need to be able to figure out how to live with it and handle that addiction on a daily today....I knew that gluten was off the what did i manage to find that had no gluten in it???? Cadbury's Dairy Milk Chocolate!!!!!!! How stupid is that!!!!!!!!!!!!!! Here I am trying to actually make a positive change to help my health and I still can manage to sabotage myself and eat something that is not good for other aspects of my health........just stupid, but I really do think that part of me was feeling like I was missing out on something, so I replaced that something (bread) with the chocolate.

So if anyone has any good gluten free recipies please send them my way as I have to get my head around this!!!!


  1. Wow, Janine! If it's not one thing, it's another! :( At least gluten free is becoming more and more prominent in the marketplace, so there will be some good cookbooks and products out there to try. It will also help you avoid things we should be avoiding anyway, like bread. Good luck, and if I come across some good recipes, I'll certainly send them your way!

  2. You sure have a lot on your "plate" don't you? I actually know a lot of people who have switched to a gluten free lifestyle and they love it. I am like you, I like to enjoy what I eat. I think I may struggle on a plan like that - but if it means you feel better, can come off of steroids, and possibly have a family, I would imagine it's worth it. I'll keep my eyes open for the good recipes! Hey, I may even have to try them myself!

    I'm pulling for you and hoping that you feel better really, really soon!!!

  3. You will marvel at how quickly ONCE GLUTEN FREE your body will thank you there are loads of gluten free recipes and foods out there AND soon you WILL be off your medications.

  4. I'm sorry you are having so many health problems but I think you may have helped me. I am now going to my Dr and asking to be tested for Dermatitis Herpetiformis. Maybe if I'd gone to the skin specialist last year it would have been picked up but I put it off.

    I have known for a while that I generally feel better when gluten free and I thought gluten might have something to do with the itching, mostly scalp and bum. So bad it causes sleep loss, not to mention I look as though I've got kooties.

    The following websites have helped me with food ideas and recipes. I'm not at all strict about being gluten free but maybe it's time to get serious.

    Low carb recipes

    Gluten free recipes and life style. Shauna is a cook, her husband Danny a chef. They have recently published a book and there are lots of gluten free links. Mostly Nth America but much better than anything I have found in NZ Sourcing ingredients can still be a hassle so I keep it fairly simple.

    All the best as you learn to be gluten free

  5. Well, you are a medical licorice allsort, you will be keeping Zola on her toes I guess.

    The Healthy Food Guide Magazine each month has gluten free recipes and also suggestions on how to make some of their other recipes gluten free.

  6. Like the others have said at least now you can buy a lot more gluten free products and my friend says they actually are not to bad tasting now a days lol.....

  7. I hope you can get your health issues sorted out and good luck with the baby making.

  8. Oh! I hope that they work things out soon! ANd you are sooooo not old!! Geez! Celebrities have babies in their 50s!!