Thanks for the welcomes, everyone - that was 10 pages or so back! OMG do you guys move fast, and there are so many of you it's really hard to keep up. Seemed like every time I got to the bottom of a page another page had been added.
Christine - way back there with the teeth problem - I know it sounds cranky but please do some research into bio-compatible dentistry (google) and consider not having root canals. Check out my post on another thread here. I had six root canals, three of which ended up necrotic because the infection in the jawbone couldn't drain and my compromised immune system couldn't cope. There is no point in 'saving' a tooth if it's going to become a locus of infection, and peeps with immune disorders do not want additional burdens on their health.
Donna - the itch, did the dermatologist consider Dermatitis Herpetiformis? It's one of the first things s/he should consider when a Coeliac presents with an unbearable itch! On a 0-10 scale of itchiness DH is around 12. I have been known to wake up with a completely raw arms where I've scratched off several layers of skin in my sleep. It starts with little raised red lumps and progresses to blisters filled with fluid. It's usually, but not always, bilateral on the body, meaning if you have it on one leg you might find it in the same place on the other as well. It's aggravated by gluten and dietary iodine (too much salt or seafood).
Which reminds me that some posters in other threads use DH to represent Dermatitis Herpetiformis and others use it to mean Darling/Dear Hubby (or something similar) and I find that a bit....confusing!
Hey Alfo, it's a while since your post so I may be way too late to answer your query.
Nevertheless, here goes. Basco products are great for coeliacs - check with the Coeliac Society of NSW for wholesale outlets etc and for other products that might suit. You could also list yourself with them as a gluten-free eating spot.
I hope your Tea House has green tea, macaroons, amarettos, almond-meal friands....where are you? I'd love to visit!
Hi all, funny thread.
Brain fog, oh yeah. Like I can't make the slightest connection between observations or thoughts, can't reason, not enough brain cells firing to move stuff from short-term to long-term memory, so of course I never get used to it either. Also can't remember what stuff was about that I wrote down when I didn't have the fog. That's seriously scary and depressing. Nor is it a resourceful place to be when visiting a doc who's less informed about my disease than I am. It just brings out the patronising arrogant professional in them, eager to dismiss me.
Getting some sleep helps, though.
Thanks for this - yeah I know about the thyroid needing iodine and so have never tried to eliminate it completely, just find an acceptable balance. I use organic, non-iodised sea salt and apart from the occasional restaurant meal cook all my own food from scratch. Nevertheless, when I finally convinced a doc to test my T3 and T4 instead of just my TSH, which had always shown 'normal', my tests came back showing hypothyroidism. So now I'm on 60mg alternating with 90mg Armour Thyroid daily and the T3 and T4 are within normal range.
At the moment my DH is severe and I really don't know why except for a possible retracing due to the melatonin I've been taking for five weeks. Seems ages since I was free of it.
I was told the villi need two years to repair after glutening. Six months seems like a dream.
Hey this is a great reminder for me, thanks!
I used to have a food diary, counting food weights, amounts and sizes etc but not calories. I expanded that to add exercise and moods and sleep patterns and then when being diagnosed for hypothyroidism, added my waking (ha! which waking, exactly, for an insomniac?) axial temperature and pulse as well as retiring temp and pulse measurements. That was a LOT of detail and after three months I kinda stopped.
Now I think I'm ready to start a log again and I'll include sleep (quality, amount and duration), food and drink (amounts and frequency), moods and energy levels, activities, exercise and bowel movements. The Bristol scale is very useful!
I find once I institute a regular system it's fairly effortless to add to it daily. Longer than daily and my brain fog intervenes and memory is utterly lost. Sigh.
Hi fellow Ozzies.
I love our Coeliac Society of NSW and cannot praise them highly enough. The Australia-wide society is here
Unfortunately they don't have a forum, hence my landing here.
Happy to discuss anything and everything.
This happened to my dad when he was last hospitalised at a large hospital in Newcastle on the eastern seaboard of Australia for the heart problems and electolyte imbalances that killed him (he was 89).
Having filled out the form that his special dietary requirement was a gluten-free diet, the kitchen proceeded to send him Kellogs, and later lamb with obviously thickened gravy and a tub of icecream with thickening agent 1442 and barley-derived malto-dextrin clearly labelled on the outside of the tub. When I repeatedly sent these back, the dietician came and very patronisingly told me that corn and rice were OK for Coeliacs, and that ice-cream was dairy, not wheat. (Gee! why didn't I know that?)
Practising patience and tolerance I gave her our excellent Coeliac Society of Australia Ingredient List booklet and showed her what hidden gluten ingredients were in what the kitchen had sent. She backtracked and said she'd check it out. Whatever she did had no effect, as he was sent the EXACT same thing the next day. I asked at the hotel I was staying at if I could possibly use their kitchen to cook my dad gluten-free meals and they were extemely helpful. That lasted two days.
Dad developed a golden staph infection (fantastic places for getting ill, hospitals) and was moved to Cardiac ICU, where I was not allowed to give him the gluten-free meals I'd prepared in case of infection (!). When I pleaded with the doctors please to intervene in the matter of his diet, since the constant diarrhoea was weakening him even further and his bloated stomach and exacerbated dermatitis herpetiformis was driving him mad, one doctor actually said that at this stage he should be able to eat what he liked, since he didn't have long to live. "At this stage," he told me gravely, "all we can do is give him palliative care." When I pointed out that a glutening would weaken his immune system even further, in fact poison him, and that far from palliative - which I understand to be making people as comfortable as possible - dad was being made more uncomfortable. He said he was sure the kitchen had it all well under control and I should stop worrying about things that were the hospital's responsibility and dashed off to do his important work helping people.
I was flabbergasted at the level of arrogance and ignorance that existed then (only three years ago) among doctors who purported to have patients' interests at heart. Obviously I'd come across this heaps in GPs in the community, and even endocrinologists. One does expect something of a higher level of knowledge in hospitals, though.
No problem - glad to help. I'm happy if only one person can be saved the misery I experienced over years being progressively poisoned, while doctors and dentists told me I needed hypnotherapy and anti-depressants (a sure indication that not only were they unresponsive to my descriptions of symptoms but they couldn't help me).
Take care and all the best.
All of my six root canals took eight weeks to three months for the infection in my jaw to drain, and hence for the treatment to be concluded.
I didn't know my immune system was already compromised with celiac disease and Dermatitis Herpetiformis. I didn't know at the time that mercury amalgam fillings and the linings of the root canals were poisoning me and causing necrosis rather than draining away abscesses. I didn't know then that far from fixing my teeth the dentist was making things much, much worse. When I finally had all those necrotising root canals, and the teeth, taken out, the biocompatible dentist said that had I waited a few more months I would have needed reconstructive jaw surgery.
Please check out biocompatible dentists (Google) in your area. It's not too late to save yourself a great deal of trouble, ill-health and pain.
After avoiding excessive salt, all seafood and only having fresh water fish for six years I allowed myself one challenge of four prawns. Yep, I love 'em too.
There was no DH outbreak after this minor challenge. I feel ridiculously happy.
After a chat with my compounding chemist about the article above which suggests .3mg is more effective than 3mg, he sent my next prescription as sublingual drops and encouraged me to experiment with the dosage to find what worked for me.
Five to six drops = 3 - 4mg, so he suggested I start with one drop, held in the buccal cavity or a minute or two for absorption, then swallowed. He suggests taking it one hour before bedtime - but I feel tired enough to sleep almost immediately so have been doing what Ricecakes has found as well and not staying up after the dose.
After my last 3mg time-release capsule I started with one drop and didn't sleep well. Two or three drops work well so far. I wake after six hours, though not very refreshed. After a few hours I feel tired enough to sleep again for an hour (work permitting). It seems several catnaps during the day allow me to catch up on enough sleep to feel ok by mid-morning and again by late afternoon. A persistent low-grade headache seems normal now.
The DH has reduced markedly on the lower dose, so I feel there is an 'aggravation' factor for auto-immune disorders. I also have an unusually bad cold which has persisted for the length of time I've been taking melatonin (five weeks) and now feels chronic and bronchial, with coughing, sneezing and chills not responding to my usual mega-doses of Vit C, astragalus, ecchinacea, Noni Juice, Aloe Vera Juice, Infra-red sauna etc etc.