Hi all, I haven't been on the forum since May so it is nice to return with some good news. In May of 2011 I was working in a bakery and after about 6 months I became ill with another sinus infection. I had a few days off sick. First day back at work and six hours later the aweful itch which had started at my feet had made it's way all the way to my head. I didn't work another day at the bakery. So then I was unemployed and covered in that evil head to toe. For me (living near Canberra, Australia) the doctors were hopeless, pointless or unaffordable. (Tip 1: get on here and find out reliable doc's and specialists asap) Initially but only briefly I was confused and in denial that such a staple or even food was to blame. (Tip 2: Do lots of research and reading. If you suspect or know gluten is the problem read all you can.) So I removed gluten from my diet but kept a gluten house. (Tip 3: Don't do this. I haven't read or heard of anyone on this forum (with DH) who claims to keep a gluten house and deal with DH) So May to about July/August 2011 I continue to suffer head to toe with little improvement. Lots of other issues resolve (brainfog, intenstinal, nerve spasms etc etc). So after much discussion with my then 9 y/o son (single mum) he convinced me that gluten had to go. (Tip 4: Get your household on board. Educate them. ) So the house is gluten free and I'm learning how to read labels, what gluten free products are available where etc. Still itching head to toe. By this stage I'm literally going mad with lack of sleep despite the help of this forum and its amazing support. (Tip 5: I would have been doped, forced sleep in an asylum without ice packs - the soft flexible ones rotating in/out of the freezer all night - wet soft towels and Canberra winter) In October 2011 I went to Sydney for my sisters 40th. First time away from home. I was terrified. And I had a massive resurgence of the itch probably due to the 'corn flour' or cc in the only restaurant I ate at. (Tip 6: When travelling have everything ready - esky (cooler?), ice packs, fruit, gluten free products - otherwise do your homework - what shops, restaurants are going to be available etc. ) When I got home I went room by room and got rid of bags and bags of stuff (esp laundry and bathroom). I removed all processed food from my diet. (Tip 7: By processed I mean ALL. No salt/pepper, dried / canned / in plastic - ALL. I ate only fresh meat, veg and fruit. No nuts or grains at all.) And so the itch started to settle. Slowly, slowly, slowly (Tip 8: I know how hard it is but be patient, breath and drink a crap load of water. I drink probably 2-3 litres a day I think it is an important key to the puzzle) By December 2011 I was starting to see a big difference. And so I started to reintroduce. Started with the basics, salt/pepper, rice. Then rice only products ((only made in Thailand - reduced risk of cc in factory - Aussie rice made me vomit literally)) (Tip 9: Introduce one product/ingredient at a time and wait a few days. Try it again. Third time lucky For me this includes laundry/bathroom. ) It has been trial and error ever since but I have found some great curry mixes, reliable brands, yummy grain free bread (Deeks here in Canberra) etc etc. My diet is probably 95% fresh on a bad day and many days are 100%. From trial and error I have discovered that iodine doesn't have much effect unless very high over time, salicylates are a big problem but accumulative (the more I have over time the worse the itch - for me I have to exclude corn as much as possible). In May I started working in childcare. I was a bit worried about meal times and gluten laddened hands on 20 x 2 year olds but I am very cautious and the people I work with are very understanding. I use a lot of disposal gloves at work and at home. (Tip 10: Even gluten free products you use at home/work can be drying and/or abrasive - try to avoid contact with any chemical/abrasive products) I itch occasionally now - a few spots here and there and nothing nearly as intense - nothing like the 12 months of hell. My intense and selfish regime of the last 18 months has seemed like a life time but it has given me my life back. I can work full time, I can play with my son, I can sleep, I can have coffee and a treat with friends and Mum at Deeks (though other restaurants are still and may remain off limits).
Sorry this one is a bit long but the journey has been too and I thought others might like to know how it's been and that it has worked for me.
B&B, I'm so sorry you're itching like the devil. I hope it doesn't last long. From these things we learn though. We learn not to let peer pressure make us do things we know is not the best idea. We learn to be strong & just say NO. And we learn how to protect ourselves. We learn to always take our own food. I'm not honking on you & I truly feel for you with your rash flaring up.
You are so right squirmingitch. We've all learnt the hard way, haven't we ?! sigh.. It took me a long while to come to terms with the fact that not eating out (cafe/restaurants and friends/family homes) was going to be for a lifetime. I still occasionally yearn for an easy, yummy, clean-up free snack or meal. But the memory of how bad that all over itch was, the blood, strange glances when in public or even with friends/family, dressing head to toe for 12 months and the months of little to no sleep all take their toll and have left a permanent memory. Life for me is better being strictly gluten free. Far more positives than negative. I believe here in Canberra, Australia there may one day be a strictly gluten free restaurant (there is a very good daytime cafe/bakery - "Deeks" - which is popular even with non-Gluten-Free folk). How nice it would be to have a seriously delicious meal with friends/family just one night )))
Woolworths are crazy, they are stocking in on the same shelves as the regular flour! And we all know how the regular flour bags manage to spread flour dust all over the place, I think that aisle is a health hazard and usually skeddadle past on the way to the nuts but I was with friends the other day and saw it. Ridiculous, the gluten free flour bags (sealed plastic) were all getting dusty from the bags above - the second we touch one we are glutening our hands, everything else in the trolley etc. Plus, why would I look there when they have a whole gluten free section in the healthfood aisle? I'll keep buying the white wings flour thankyouverymuch.
I've worked in a supermarket and you are absolutely worthy of being concerned. The regular flour in particular is packed to be exploding flour. Lots of paper bags full of powder which are packed in paper/flimsy bags packed to break. Full stop no argument. In our "true" gluten free environment gluten free is kept away from gluten free. But we a long way from that. I have had many a moment lately wishing for a Canberra, Australia, gluten free store that regardless of cost I can trust to be just so. Probably a long way off. But it will happen. Health consequence and COST will dictate it rather than my (and sons) DH and current inability to eat out. Just my opinion. And am patient.