jlaw
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by jlaw
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ARCHIVED What's With My Eyes :-(
jlaw posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hi Friends, I'm only a few months into this (feels longer!). My DH is extremely bad so my gut symptoms are minimal, but I'm starting to notice my eyes getting sorer. It feels like I've been swimming in a pool with too much chlorine. Does anyone relate? I've read a little about sjorgen's - but they don't seem dry so much as sore. Also, if it was related to... -
ARCHIVED Dermatitis Herpetiformis ( And Other Rashes)
jlaw replied to Chefwife8's topic in Dermatitis Herpetiformis
Hi and welcome again. Sorry that you're in the 'waiting' phase - I never cope well with that! And yes, having a dermatologist who would suggest this is a good start - even if it's not DH, at least he's not stuck in the habit of fobbing patients off with the scabies or eczema thing and can think outside the box. I am recently diagnosed at 31. All the literature... -
Also, for those of you who are further down this road than me, how long have you used the thyca diet for? Just interested in other people's experiences. My diet is already quite limited due to the fact that we don't have a fridge or an oven (this is an intentional choice which has been fine up until now. But to reverse this decision means moving countries...
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Hi all, I'm doing my best to limit iodine in my diet but have noticed carrageen in my toothpaste. Obviously if it was gluten, it would've been in the trash a long time ago. But how much do I need to worry about carrageen in toothpaste?
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oh no. I'm so sorry Adalaide. Keep with the low iodine as well and it should shorten the lifespan of your DH. I also couldn't care less if I never eat again :-( Hang in there. Post as you need to if you just need to vent.
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I have an article from a dermatologist who specialises in DH which lists iodine to be avoided. Doesn't go into detail why, but I always think it's nice to have acknowledged. I only have it in PDF form though, so don't know how to make it available to everyone :-(
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Wow, I could've written that exact post. Except I don't take thyroid meds. Back to getting my head around the thyca.org info. At least this time I have more incentive, considering my feeble attempts before were not enough. But it's obvious this DH means business... Good luck!
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Oh squirming, your post brought tears to my eyes. I guess it just made me feel a little validated. This is hell, sometimes,and sometimes I feel like I just need to suck it up, don't want to bore my hubby and friends with it all (although they would never say that is the case - they are all beautiful people). The reality is, it not just affects meal times...
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Hi Lyn, welcome to the forum :-) I personally stopped using dapsone because of some concerns I had with it, and I did not have access to regular blood monitoring where I am, so I'm afraid I don't have much experience to be able to say what to expect when. I stopped it maybe after a week, and I do remember being disappointed that my itch did not magically...
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lol!! Lyn, that's scurvy!
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Today I watched as my 4 and 5 year olds finished up their sandwiches - crumbs everywhere!! Faces, hands, floor. Yesterday, I had to stop my daughter dipping her biscuit in my coffee, something that had been a daily ritual pre-diagnosis. Guess I'm still just getting used to the little things. And I guess my little things need to get used to some changes too...
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Did you ask her to do one beside a lesion? Seems a shame to go back again if it comes back negative..
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Keep us posted :-)
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L.J - I'm so sorry about your experience. That sounds intense. Yay for helpful husbands. I wanted to add that if your rash/spots are DH, the timing of their appearance is not directly related to when you have eaten. There is much variation on the time lag between eating something 'bad' and spots appearing, if there is any correlation at all. For those that...
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p.s I'm totally joking about the offeneded thing
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ARCHIVED Children Of Celiac Mothers... What Kind Of Testing Is Sufficient?
jlaw replied to Kate35's topic in Parents, Friends and Loved Ones of Celiacs
Hi Kate - I never even thought of that side of the equation. And now as a I write this, I'm feeling like it my be to late. I've watched a rash on my son's skin progress for around two weeks now. I have just finished finding new ones tonight and I have a familiar feeling in my stomach - the same one I got when I realised I had DH... I was always grateful it... -
Wow Hopeful....that is amazing and I guess makes sense. I heard about being under the covers and heating up, but my night time itchiness would always start even before I went to bed...around evening.
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As an aussie, I'm wondering if I should be offended.... although I can't be offended because I'm too busy missing my rice thins :-( When I left Aus 2.5 years ago it was pre-diagnosis, so I was eating rice thins because they had really good flavours and healthier than potato chips. And of course I wasn't paying much attention to the gluten-free factor, but...
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Hi Hopeful (I sense that this post means you are even more hopeful!) Does this mean you would consider yourself a non-celiac sufferer of DH? So DH attributed to something completely different? '10% of people with DH' is quite a significant percentage, and it sounds like they don't know more than that...interesting.
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Oh no :-( Definitely starting to sound more suspicious. Hopeful's information is interesting too. As I said, this is how my son looked 5 weeks ago. Now he has suspicious patches on his ankles, back of his neck and back of his hand...maybe the same path as your friend, Hopeful, just a little quicker...
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Hi Mrs Sprinkles. Does the rash appear anywhere else? Does it show any signs of inflammation? I would say that DH is a small possibility but would probably expect to see more areas involved by now. This is how my son looked about 5 weeks ago, and of course I am suspicious because of my own diagnosis! So I googled something like 'bumpy skin on elbows' and...
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This is exactly why I was happy to keep pursuing the DH thing! There is absolutely no way that it was scabies because not one person I know had it after a year. We don't co-sleep but we do sleep in the same room and the kids are always in and out of our bed. And at *least* my husband should've caught them! ...but the derm told me 'scabies is not always contagious...
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ARCHIVED Had My First Pity Party Last Night
jlaw replied to tctwhite's topic in Coping with Celiac Disease
Well done! So hard, but so worth it. If it were me, I'd totally treat myself to a gluten-free treat because "everyone else had their fun, and now I deserve mine!" -
ARCHIVED Children Of Celiac Mothers... What Kind Of Testing Is Sufficient?
jlaw replied to Kate35's topic in Parents, Friends and Loved Ones of Celiacs
Hi all, I am wanting to ask a question about the annual testing - I'm assuming this refers to the celiac panel? I've been wondering about having my kids do the genetic testing instead. My understanding is that +ve genetic background + diet high in gluten is a major factor in developing coeliac disease. I have known I was gluten intolerant since starting solids... -
ARCHIVED What Do You Want To Tell Your Friends And Family About Living Gluten Free?
jlaw replied to LisaDances's topic in Coping with Celiac Disease
This sounds great Lisa. If you do make a flyer could you please provide us with a digital copy somehow?
