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Is She Gluten Sensitive Now That She's gluten-free?
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Hi all,

I've shared before that my 6 yo daughter Grace was asymptomatic of celiac right through the positive biopsy. She did have thyroid disease as a result of undiagnosed celiac, but no stomachaches or headaches, etc. I mentioned to the GI this summer that about 8 wks into the gluten free diet, if Grace had accidentally ingested gluten (which in the beginning she definitely did) she would complain of a stomach ache. I asked the doctor if this were common and she said no. I'm confused. I know for a fact that one time, Grace ate a grilled chicken patty that I'd mistakenly assumed was wheat free. After she complained of terrible stomach pains after eating it, I went back and was horrified to find that the seasoning on the chicken DID contain wheat. Beyond that, I posted Labor Day wkend that we believe she was accidentally glutened in oral surgery w/some of the medication she was given, despite our best efforts to inform the surgeon of her condition. Again, vomited for over 24 hrs. I am still trying to compile the list of meds to bring to her next GI appt and upoming physical. This past week in school, I was concerned becz she was complaining of mild stomach aches. As it turned out, she picked up a virus w/a fever so I could rule out glutening. My question is: the GI seemed to think she would not show signs of glutening NOW if she hadn't THEN. I'm perplexed, because it seems obvious to me that once she went gluten free, when her body receives it now she's sensitive to the glutening. Any one have any thoughts on this? I don't want to continue wondering if she's been glutened if it is truly physically impossible for her to now experience physical side effects, and all of the above have been wild coiincidences. Thank you, Emily

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I know my dad who is around 80 is poor comparison for a young child, but he experienced the same thing. He was pretty much symptom free. Now he really feels it if he gets glutened. I think that he had just gotten used to his symptoms after so many years. His glutening symptoms are also worse than what he was living with before. That goes for me too, though I was super symptomatic before.

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What your seeing is not unusual. It is not uncommon for folks who seemed to be asymptomatic at diagnosis to have reactions after gluten is taken out of the diet. Once the antibody reaction from gluten is gone from everyday life when she injests gluten the antibodies will spike as her system is trying to protect her from the substance that it finds poisonous.

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Thank you both...it makes sense to me, and I was surprised that her doctor looked at me funny when I made that observation. Makes perfect sense; I'll keep paying attn. to these "episodes" to consider the possibility of accidental glutening.

Em

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my reactions have intensified since going gluten free.

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That is exactly my daughter's reaction - stomach pains now with gluten, no stomach pains before going gluten free. And as both my daughter and I are celiac, we've both reacted to the same thing a couple times, so it's a bit hard to swallow that both of us are 'not' reacting to the same thing at the same time, LOL.

Also my father and I also both have specific reactions now to gluten where we didn't before.

Afraid the doctor is just not real aware, sigh.

Thank you both...it makes sense to me, and I was surprised that her doctor looked at me funny when I made that observation. Makes perfect sense; I'll keep paying attn. to these "episodes" to consider the possibility of accidental glutening.

Em

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She may have had a lot of issues when she used to eat gluten but wasn't aware that they were any cause for alarm. Now that she had felt better for awhile she understands how she is supposed to feel when she is well.

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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!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
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