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Do I Have A Sensitivity
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Hi

I never new I had celiacs. I went for an annual physical and my blood work came back and I wasnt absorbing vitamins. So i went to GI and was diagnosed after endoscopy.

So here is what I am wondering...I know not to eat gluten and I dont at all. But do i really have to worry about getting sick if I actually do eat some accidently? And what kind of sick do people get from eating it. I dont understand. So I assume I donnot have a sensitivity I just cant eat it because of the vitamin issue. So if I do get some some how I wont get sick....right?

I really need to know the answer to this. My Dr cant even answer it.

Thanks

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As you know, it's very possible to be asymptomatic and have celiac, although I wouldn't consider you that... since you posted about nausea, that could be your symptom.

Either way, peoples sensitivity levels do vary, and what might make me sick may not bother another. You may be CC'd and not know it. That can be both a blessing and a curse, because if you don't know you have been glutened, it can make it harder to be as strict as is necessary. So, you may or may not actually feel the physical effects of eating gluten. But, just remember that even though you may not feel it, doesn't mean there isn't a reaction occurring.

I've also heard that some people become more sensitive to gluten the longer they are gluten-free, while others tend to become less sensitive as times goes on. There are a lot of mysteries to this disease.

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Yes, you should be concerned about accidental exposures. While everybody responds differently to this kind of scenario, I don't know any Celiac/Gluten-Intolerant person that doesn't have some sort of symptoms that lets them know they've been exposed.

Most people at time of diagnosis don't have the classic Celiac symptoms and often present with only one, seeemingly unrelated problem like anemia, vitamin deficiencies, acid reflux, osteoporosis, cognitive delay, dermatitis (Dermatitis Herpetiformis and others) and even misdiagnoses like Fibromyalgia and Chronic Fatigue Symdrome.

You need to read your body and determine what sensations and symptoms indicate to you that you may ahve been accidentally exposed. I didn't have hardly any GI symptoms when I went gluten-free but some recent exposures had me in bed for several days with severe adominal pain, indicating I've become more sensitive as I've "cleaned up" my act.

What I've reconciled myself with is that the "normal" world is pretty inhospitable to those with gluten intolerance and food allergies. Social circles and family can be the toughest to deal with during the early stages of this lifestyle. Be prepared for old aquaintances to drift away and to make new friends that better understand your needs.

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I need more answers please

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I never new I had celiacs. I went for an annual physical and my blood work came back and I wasnt absorbing vitamins. So i went to GI and was diagnosed after endoscopy. So here is what I am wondering...I know not to eat gluten and I dont at all. But do i really have to worry about getting sick if I actually do eat some accidently? And what kind of sick do people get from eating it. I dont understand. So I assume I donnot have a sensitivity I just cant eat it because of the vitamin issue. So if I do get some some how I wont get sick....right? I really need to know the answer to this. My Dr cant even answer it.

I never knew I had celiac disease, either. I got diagnosed via endoscopy when the doctors were looking for something else. I had no symptoms. I have been gluten free for 6 months (I believe) and I can think of one time when I for sure ate gluten. Even then I did not suffer with any symptoms. I cannot tell if I am getting cross contamination. The only way I will know if I am being successful with my diet is by bloodwork.

So . . . do you have to worry about getting sick? Well, I don't but you could be different.

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I never knew I had celiac disease, either. I got diagnosed via endoscopy when the doctors were looking for something else. I had no symptoms. I have been gluten free for 6 months (I believe) and I can think of one time when I for sure ate gluten. Even then I did not suffer with any symptoms. I cannot tell if I am getting cross contamination. The only way I will know if I am being successful with my diet is by bloodwork.

So . . . do you have to worry about getting sick? Well, I don't but you could be different.

Just curious, sbj -- how long have you been gluten-free? I was diagnosed four years ago, a diagnosis right out of left field. I had no symptoms, with the exception of low iron. It took over six months for me to start noticing symptoms when I accidentally consumed gluten, and at first they were not heavy-duty. Then, once I was at a year gluten-free, I was (and have been ever since) experiencing the classic symptoms when I was cross-contaminated, very noticeable: cramps, bloating, D.

Valerie, you need to stay away from gluten because it causes your immune system to launch an inappropriate attack on the protein. The antibodies can damage every organ in the body, including the brain, skin, liver, pancreas. . . .....not to mention the obvious damage it will do to your lower intestine. Cancer can result. You've come to the right place for support and advice! :)

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Just curious, sbj -- how long have you been gluten-free? I was diagnosed four years ago, a diagnosis right out of left field. I had no symptoms, with the exception of low iron. It took over six months for me to start noticing symptoms when I accidentally consumed gluten, and at first they were not heavy-duty. Then, once I was at a year gluten-free, I was (and have been ever since) experiencing the classic symptoms when I was cross-contaminated, very noticeable: cramps, bloating, D.

I'm gluten free for a mere six months now, near as I can remember. So I'm just a baby at this! I realize that many have noticed their sensitivity to gluten increasing with time as they remain gluten free. So far that is not the case with me but who knows what the future will bring? I know that some people can become suddenly sensitive to gluten after only being gluten free for a couple of weeks! That certainly did not happen to me. In a way I am hoping that I do become more sensitive so that I can recognize cross contamination - but nothing so far. Right now it's just a toss of the dice. I'm avoiding gluten as best I can but there is the chance that I am getting CC. I have no way to know other than bloodwork.

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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!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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