This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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.
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.
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
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 )))
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.
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.
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.
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?
I am 39, single mum of one, Liam who is 9y/o.
I broke out with full blown head to toe DH in May last year. I'd been working in a bakery for 9 months with growing and growing GI/neuro symptoms I didn't recognise at the time. I feel ill with another sinus infection, in bed for 3 days, went back to the bakery for first shift and six hours later was covered in it head to toe. I am officially un-diagnosed but given the extent of my sudden onset and life time history of otherwise avoiding breakfast/pasta/pizza/sandwich etc etc it sunk in pretty quick that wheat was the problem. 48 hours literally (couldn't sleep anyway due to the insane itch) of internet research that took me to 1000s of derm images and eventually this websit my GP was supportive of my self diagnosis of DH. Unfortunately finances leave me without the "official" diagnosis via endo/skin biopsy but I came to terms with that early in the journey.
So the next and even bigger dilemma for me..
I went gluten free straight away. At first I thought keeping Liam on his usual diet would be okay. Kept it up for a while but gradually and naturally given my aversion his lunchbox and dinner were more and more gluten-free. Then he started avoiding the gluten breakfast cereal. Stocked up on eggs etc instead. I kept getting glutened and itching was barely improving.. Decided to make our house truly gluten free. Liam spends a lot of my out-of-school work hours, weekend time with his grandma which is gluten full. I didn't even consider that there might be consequences for him. He wasn't itching so going gluten free at home but having Grandmas meals/snack or me taking him for his rare takeout was not something we'd considered. Today he looks and itches like I did six months ago. I can only deduce that his immune system has had some kind of reaction to the 100% gluten-free at home/school but almost daily but high-content gluten exposure elsewhere. So he is essentially gluten lite. When he eats away from home it a big gluten hit.
We are still a long way off from a derm appt and Grandma is a "celiac/gluten intolerance is a wasting disease" ((oh yeah.. I heard it a lot the past year)) so with the need for regular intake for diagnosis and her opinions, we together over many many weeks of conversation decided to keep his gluten intake at grandmas.
Liam is learning about reading labels with me. At first out of his care/concern for me and my condition. Now he is an avid reader of labels and learning lots of things about what goes into food and how it effects people. I keep my guilt under raps whilst waiting for diagnosis for him. If he is learning now how he will have to live the rest of his life ((and he is )) then perhaps he & I have a middle ground. No diagnosis but getting to learn the drill all the same.
I dream and hope and pray that your son gets a diagnosis but if he gets a negative then you really need to take him on the journey. Show him all of your rashes. Explain to him about the 'immune system'. Tell him what causes it. Explain to him about gluten: wheat rye barley. Show him what it looks like (glutens - wheats etc). Ask him what he thinks. How did he feel eating gluten at dads (without the 'dads fault' thing of course). Make taking about gluten a regular affair without it being a big deal. I got into the habit of asking Liam to check labels "for me". "if you can't read any of the crazy chemicals then I can help". etc etc etc...
My theory on sleep/resting & DH: When we are awake and busy we still feel the burn, itch etc don't we? But if you are in the middle of a work meeting/sale, your child(ren) is crying out for a bottle, the pile of ironing is only halfway done, the lawn is getting mowed, you need to get the yourself or kids ready for training/sport, you are playing/watching sport etc etc... I don't itch so much because my body/mind are busy. I still itch/burn etc but not nearly so (seemingly) intensely as those rare moments sitting watching a movie (cinemas were off my list for most of the past year due to DH, sitting at home watching TV/movie involved a lot getting up to just 'do something' or otherwise sit/watch/itch). It was one day when I was driving to friends one weekend when I realised that during the weekend when I drove I itched like crazy (a little more relaxed, not in such a rush, not some much on my mind on the weekends). Driving to/from work and sons training etc during the week was still a bit of a 'sedentary' itch but nothing like on weekends.
So at night when we need to be at our most restful for our body to heal (and is there something with DH & prime healing times ??) then we cop it the worst. Our greatest dilemma - nighttime.