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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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