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9 mos into diagnosis + still many questions

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Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

-FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions. ;) 

-SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

-SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

-MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

Thank you so much!


Edited by imissdonuts

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Hi imissdonuts,

Not in any particular order response forthcoming.

DH (dermatitis herpetiformis) enjoyers say that reducing iodine in their diets seems to help control the DH symptoms.  You can find out more by reading in the DH sub-section of the forum.

Fatigue can be caused by many things, including vitamin and hormone issues, as well as celiac reactions.  I can tell you I had positive results from upping my selenium intake and vitamin D, but your mileage may differ.  I also do better when I avoid caffeine.

I live in a shared household with gluten eaters.  There was a time I wouldn't have thought of trying that.  But now that I am recovered fairly well it isn't a problem.  I do rinse dishes and such before using them often, and have a small separate refrigerator for my own food.  My housemates (brothers), are great with things like skinning deer and gardening but not so much with avoiding gluten cc.    My one brother likes to bake and leave little pile of flour laying around the counters.  That was pretty un-nerving at first but once I got used to the idea of rinsing and washing hands a lot more it wasn't a big deal.  The flour on the refrigerator door handle is a little off-putting though.  But I generally don't have any problems by just being a little careful and extra-rinsy.

Anyhow, welcome to the forum! :)

Edited by GFinDC

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My response is in relation to your skin. While I am new to being celiac, I have several extended family members who were diagnosed 5-10 years ago. They have found they have to watch shampoos, soaps, lotions, and face products because some products do contain gluten. If a product does contain gluten, they often end up extremely itchy and have irritated skin and in the case of shampoos their hair will fall out. While I do not know if this is the case for you or if it will help it might be a place to start. 

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Thank you all for this helpful info. I'm glad to know I'm not the only obsessive plate rinser!

I did replace all beauty products with gluten-free ones a while back and talked to my naturopath about fatigue, vitamins, and skin stuff this week. I'll check out the DH links, too. Hopefully all this will improve soon. Thanks again.

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