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Di2011

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About Di2011

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  1. Hi Jess Your photos look a lot like my DH. I am not officially diagnosed. I find avoiding gluten in food is not the only fix. Avoiding bakeries, bakery aisles, and watching who is eating what at a cafe/restaurant table I am sharing with others... Among other seemingly crazy things. Last week, after a year of being mostly itch free, I thought I would be brave.. test my reaction. I went to a bakery/cafe and had coffee with my Mum. Bad decision. Lesions all over my stomach and arms. Uggh. In hindsight I see a bakery with flour filling spaces including coffee beans just waiting for me to itch. I find both hot and cold somewhat soothing. Cold/hot packs, face washers. At my worst I used the cheapest frozen peas. They can be formed to target the worst, sleep depriving, areas, wrapped in whatever I could find (facewasher, teatowel etc). Warm showers might aggravate but at the time of showering they are calming and almost like a mini meditation time in lieu of sleep. If you do, drop the temp slowly over time .. And if you can slowly, slowly take it to cold. The warmth is calming for the mind, and(slowly) cooling at the end of a shower or bath I find calming for the skin. At my worst a few years ago I deliberately scratched. There is something - I call it the little white dot - in its manifestation that once gone the insane itchiness stopped. I was in an extreme state -head to toe for over a year, blood stains everywhere, before I got to this state. Try not to scratch (I know..hard huh!?!) It is not pretty. As much as I wish I had an official diagnosis - we all have a limit, a job to do pay bills, a family to care for. I had really amazing advice from people on this site. The best was to go with instinct. The second best (of so many) was to keep talking and asking questions.
  2. I abide by all the previous comments. It doesn't seem to be commonly shared on here but for me gluten avoidence is in any crumb. Shared kitchens, equipment, plates, cutlery.. All have been a day.. week.. (Sometimes more) of itching, digestive upanddown and sleeplessness etc! If you can't figure out your problem .. Rethink - where is the source. Not just what you have eaten. Think about who with and where you have eaten.
  3. I joined this forum over 2 years ago.. With an email address I no longer use. I don't itch any more. About time I came back and helped out others - like those who stayed, and helped, when I itched head to toe, night after sleepless night for a year or more.
  4. Oh and one final tip: don't work in a bakery
  5. 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.
  6. Dh

    this forum via mobile is better but new to me
  7. Dh

    I've been offline for a.while. My DH has been stable. For a.while. I itch every day but I work etc. as if I've not.
  8. I'm trying to get touch phone savvy but taking time
  9. I've been off this forum for months. My Dh has been okay for a while. Tonight my 9 y/I shows me a wild patch of itchy lesions on his inner elbows.. Not the first signs for him but makes his next 30 years different to mine
  10. 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 )))
  11. 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.
  12. I'm in Australia so product availability seems to be different. I am sensitive due to my DH. I have tested many "enriched" products much to my skins distress. I now stick to rice only ingredient list that are sourced from Thailand. Here in Aus we have many of these and Thailand doesn't have a history of want/need/forced introduction of wheat based ingredients. Thai rice, thai rice noodles etc have been my saviour for staple food. All of this has been a long journey of experiment and failure. The Thai product for me (available in abundance here in Aus) had been my only starch staple I've been able to rely on apart from fresh potato.
  13. theresa56 Welcome to the forum!! You are one of our rare "diagnosed" DH celiacs. We'd would be incredibly indebted if you told us your 'celiac/DH' journey in detail... if you are willing of course. Many if not most of us are officially undiagnosed so there is no, one, similar story that we share with new comers to our DH posts. Your story could be enlightening to others. Di
  14. I'm with our great (and mostly officially un-diagnosed) posters above Stick with the referal to the Uni. Take lots of photos (LOTS of them) starting right NOW. And keep taking them as lesions appear, change, and heal. You seem to be in your early days so photos might tell a thousand words. Write a novel if you have to of your history and current diet etc. Food diary etc. Perhaps the Uni will be a bit more progressive in terms of there admitted understanding of DH. I will never be diagnosed because I can never go backwards. You wouldn't wish what many of us have been through on the ANYONE let alone yourself. But hopefully my son's current journey will speak to someone in photos when I can afford the medical bills. You are in relatively early days of gluten-free DH so perhaps the Uni can help. Perhaps you attending the Uni can help all of us?
  15. Public and friends/family BBQs were a constant source of cross contamination in my early days. Let us know how you reacted, if at all. Hopefully you are not as sensitive as me !!!