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Second Opinion

EddieJP125

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EddieJP125 Explorer
EddieJP125
Posted

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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celiac3270 Collaborator
celiac3270
Posted

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

lovegrov Collaborator
lovegrov
Posted

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

Canadian Karen Community Regular
Canadian Karen
Posted

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

celiac3270 Collaborator
celiac3270
Posted
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.

EddieJP125 Explorer
EddieJP125
Posted
  • Author

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

RDV Newbie
RDV
Posted

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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lovegrov Collaborator
lovegrov
Posted

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

EddieJP125 Explorer
EddieJP125
Posted
  • Author

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...?

lovegrov Collaborator
lovegrov
Posted

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

EddieJP125 Explorer
EddieJP125
Posted
  • Author
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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