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Second Opinion
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11 posts in this topic

i went through all necessary bloodwork, and biopsy by one doctor...but i feel fine when i eat Gluten...could they both be a flase pos.?...maybe the Doctor has knw much about celiac disease?

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I still think that you are just one of those symptom-less celiacs......I doubt that it's wrong and biopsies are as accurate as tests get....if you're convinced, you can have a different doctor run the tests or get a different lab for bloodwork....I don't think you were misdiagnosed, but if you do, you retest for it.

-celiac3270

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If blood and biopsy were positive you have it. False positives are extremely rare for either test and almost unknown when both are positive. I also haven't reacted when I've eaten gluten by accident but I don't doubt I have it. It nearly killed me. Literally.

richard

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Definitely sounds like silent celiac to me..... You still have it, whether or not you are symptom free.

Damage is still being done every time you ingest gluten.

Karen

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I also haven't reacted when I've eaten gluten by accident but I don't doubt I have it. It nearly killed me. Literally.

Richard, you've said before that celiac disease nearly killed you. How so? Were you malnourished to the extent that it almost killed you? Thanks.

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i actually ate a lot of food that i shouldn't have eaten because i guess i had somewhat convinced myself that i may have gotten a false positive, and i got really sick this morning and it hurt a lot....i mean a lot, to the point where i was about to call 911...so i now know that it sometimes hurts and sometimes doesn't, and now i've learned my lesson... i don't want to go through that again

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Sounds Like your in the same boat as I am with respect to SILENT celiac disease. The biopsies and presence of the antibodies in your blood are almost conclusive. While damage to your absorptive surfaces can happen for many reasons, when you have the gluten intolerant antibodies in conjunction with the damage, you have it. At least thats what the doctor told me. It just doesn't feel like you're sick at all and yet you're told you are. The final straw with my Doctor came when he said simply try the diet and if you improove, that is the final proof. I did and I got better.....so I have it. This forum has said a lot of what I've heard and am maybe starting to believe. Damage is being done. The dietician at the hospital said a lot of little mistakes are worse on the system than a few big ones. You keep hitting your gut over and over. The trouble I have is that my blood is back to normal indicating that I'm re-absorbing the nutrients I need...and yet I've eaten a LOT of things unknowingly that were confirmed as cross contaminated by another celiac...and I have still recovered...I have some suspicians that celiac disease doesn't necessarily cause damage to SOME celiacs unless you get too much. There is a some talk in Europe about this...but you don't hear it in North America. Here it is PLAY SAFE. ...RDV

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celiac3270,

Yes it was malnourishment that nearly killed me. I didn't, however, suffer for months or years -- the effects came on suddenly. It was like I had a flu that wouldn't go away with fevers of up to 105. After 11 days of that and a weight loss of 20 pounds my doctor put me in the hospital. By that time I could barely walk by myself and I was too exhausted to even carry on a conversation. I had terrible chills and sweats. I couldn't add simple numbers. My liver started malfunctioning. My wife, who is a nurse, told me later she wasn't sure I was going to make it.

I spent 11 days in the hospital and missed 10 weeks of work. I had fevers over 101 every day for two months. It was five months before I could do anything other than go to work at a desk job and then come home and collapse. It was 10 months before I returned to what I considered normal strength. It was a nightmare but in some ways I consider myself lucky. I was soooo sick that the doctors tested me for everything they could think of, including celiac, even though my only classic symptom was anemia.

richard

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u know i guess one other symptom i do have would be the weight loss...i mean last year i was 150...and now i'm around 135...and i don't do much anymore so shouldn't i be a lil haeavier b/c of my laziness...?

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Sudden weight loss and "laziness" -- which actually might just be fatigue because you aren't getting the nutrients you need -- are two of the classic symptoms of celiac disease.

richard

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Sudden weight loss and "laziness" -- which actually might just be fatigue because you aren't getting the nutrients you need -- are two of the classic symptoms of celiac disease.

richard

so lets see wat happens when i start exercising and gettin back in shape...hopefully i'll feel better and get some of the lost weight...

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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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